aja
02-26-2007, 12:52 AM
For those of you that don't know me, I had a patulous eustachian tube on my left side for almost 9 years.
I wanted to let everyone know that 8 months ago I underwent the cartilage graft PET surgery with Dr. Poe in Boston.
This has been my experience with the surgery:
The surgery took 3 1/2 hours (it doesn't normally take that long but he said mine was one of the worst cases he'd ever seen and it was a lot of work to reconstruct it). the recovery (like all surgery) was horrible. the first 48 hours were the hardest. he did the surgery by putting a camera in my nose and he did all the work by going up the back of my throat. the pain for the first 48 hours was due to the swelling in my throat (3 1/2 hours of having instrumentation up there). after the first 48 hours it got a little easier, and after a week I was able to swallow food with out it being very very painful. my throat and my nose were the things that hurt after the surgery. there was no pain at all in my cheek/face/ear/eustachian tube.
he had to take cartilage from my nose because he needed a lot (normally he takes it from the outside part of the ear, but he told me he had to take it from my nose because he needed so much), so my nose hurt and was swollen and I was worried that I would end up looking different because he had to take the cartilage from there but eventually it went completely back to normal and now it looks the same as it ever did.
ok, now about my ET/my ears. My hearing was really sensitive after the surgery for quite some time, maybe 2-3 weeks, the sound of a knife and fork was very uncomfortable for example, but that went away eventually, once enough time had passed after the surgery, it was just from the trauma.
After the surgery, my left ear (which is the side that was patulous) felt "plugged" and my hearing was very quiet on that side. i noticed a significant reduction in my hearing on that side. this is because my eustachian tube was blocked, because of what he'd done and because of the swelling. i was terrified that it was going to stay permanently blocked and I would never hear properly out of that ear again, but Dr. Poe assured me that with time it would gradually "clear" and my hearing would be fully restored. He was right. after about 6 weeks, my left ear started to pop and crackle and squeak here and there, and bit by bit it "cleared". this was because the swelling had gone down and also because when he does the procedure he has to over correct it (over block it) to begin with and then the body absorbs a bit of the cartilage and the idea is that you end up with just the right amount (or as close as he can get).
It's now been 8 months and I can say that i've been really delighted with the results of the surgery. I'm so so so glad I did it.
my life is not 100% PET free, it does come and go a little bit, but it's an enormous improvement compared to how it was before. before the surgery my life was very difficult indeed because my PET was so bad (I used to have it very bad). It's really hard to say how often I get it now, it really varies.
I've spoken to other people that have had the procedure and they say that when they get PET now, the autophony is not nearly as bad. in my case, when my ET open nowadays, the autophony is just as loud as it was in the past, but it doesn't last as long (it's not as relentless) usually my ET closes up again quite soon...sometimes within a 30 seconds, sometimes 20 minutes. Sometimes I might get PET on and off for 2-3 days (which can be botersome). other times I'll go 3 weeks with bearly any PET at all. It does still play up when i do exercise for instance. or if I'm really stressed. But I can tell you that it's not enough to really interfere with my life any more.
In the past I wanted a solution that would fix it completely; i didn't want something that would "improve" it. but i can tell you that I'm so grateful for the improvement. I can deal with it being a small feature in my life. I've been able to do many things I couldn't have done in the past. I feel like I can now a least work my life around it.
something that I want to make clear to you is that *in my case*, my ear does not feel different or altered in any way, I just have PET far less often than I did before. that is the only difference. just less PET. my ear doesn't feel weird in any way or changed (it did for a while after the surgery but only for 6 - 8 weeks).
I have been in touch with a couple of his other patients and their stories are very similar to mine. the only down side is that for some people it seems to come back eventually because the body absorbs all the cartilage, but Dr. Poe has ways of working with that. He builds on the scar tissue that is left behind from the graft so that eventually your eutachian tube is plumped up enough by your body's own material. One of the guys I spoke to was PET free for 9 months, but now it's come back and he's going back to have the procedure done again (but this time it won't be as major because he'll be building on the scar tissue). each case is different i suppose. and i wouldn't be surprised if there are people who's PET hasn't come back (to the point where they've needed more work) since the procedure, perhaps the ones that didn't have it that bad to begin with. i don't know, I'm just speculating.
I know how frightening it is going ahead with something like this (oh how I know). the best thing is to make an appointment to see dr. Poe and talk to him about it. i can only tell you about my experience, but I know that everyone is slightly different (but the 2 other people I spoke to both said their ears felt "normal", just less PET, like me).
Dr. Poe is very serious about not permanently over correcting the eustachin tube, which I found very reassuring. he prefers that you come back several times if necessary till it's just right, or till the frequency of PET symptoms is reduced enough for you to be able to live with it, than to over correct/block your eustachin tube and leave you with a whole new set of problems.
Dr. Kujawski is a doctor in Geneva who I understand was trained by Dr. Poe in how to perform the same work. They are the only people doing it as far as i know.
Again, I want to tell you that to date, I'm very very pleased with the results and if i could go back in time I wouldn't hesitate to do it again. It really worked out for me. If mine starts to come back too frequently then i won't hesitate to go back and see him again.
I wanted to let everyone know that 8 months ago I underwent the cartilage graft PET surgery with Dr. Poe in Boston.
This has been my experience with the surgery:
The surgery took 3 1/2 hours (it doesn't normally take that long but he said mine was one of the worst cases he'd ever seen and it was a lot of work to reconstruct it). the recovery (like all surgery) was horrible. the first 48 hours were the hardest. he did the surgery by putting a camera in my nose and he did all the work by going up the back of my throat. the pain for the first 48 hours was due to the swelling in my throat (3 1/2 hours of having instrumentation up there). after the first 48 hours it got a little easier, and after a week I was able to swallow food with out it being very very painful. my throat and my nose were the things that hurt after the surgery. there was no pain at all in my cheek/face/ear/eustachian tube.
he had to take cartilage from my nose because he needed a lot (normally he takes it from the outside part of the ear, but he told me he had to take it from my nose because he needed so much), so my nose hurt and was swollen and I was worried that I would end up looking different because he had to take the cartilage from there but eventually it went completely back to normal and now it looks the same as it ever did.
ok, now about my ET/my ears. My hearing was really sensitive after the surgery for quite some time, maybe 2-3 weeks, the sound of a knife and fork was very uncomfortable for example, but that went away eventually, once enough time had passed after the surgery, it was just from the trauma.
After the surgery, my left ear (which is the side that was patulous) felt "plugged" and my hearing was very quiet on that side. i noticed a significant reduction in my hearing on that side. this is because my eustachian tube was blocked, because of what he'd done and because of the swelling. i was terrified that it was going to stay permanently blocked and I would never hear properly out of that ear again, but Dr. Poe assured me that with time it would gradually "clear" and my hearing would be fully restored. He was right. after about 6 weeks, my left ear started to pop and crackle and squeak here and there, and bit by bit it "cleared". this was because the swelling had gone down and also because when he does the procedure he has to over correct it (over block it) to begin with and then the body absorbs a bit of the cartilage and the idea is that you end up with just the right amount (or as close as he can get).
It's now been 8 months and I can say that i've been really delighted with the results of the surgery. I'm so so so glad I did it.
my life is not 100% PET free, it does come and go a little bit, but it's an enormous improvement compared to how it was before. before the surgery my life was very difficult indeed because my PET was so bad (I used to have it very bad). It's really hard to say how often I get it now, it really varies.
I've spoken to other people that have had the procedure and they say that when they get PET now, the autophony is not nearly as bad. in my case, when my ET open nowadays, the autophony is just as loud as it was in the past, but it doesn't last as long (it's not as relentless) usually my ET closes up again quite soon...sometimes within a 30 seconds, sometimes 20 minutes. Sometimes I might get PET on and off for 2-3 days (which can be botersome). other times I'll go 3 weeks with bearly any PET at all. It does still play up when i do exercise for instance. or if I'm really stressed. But I can tell you that it's not enough to really interfere with my life any more.
In the past I wanted a solution that would fix it completely; i didn't want something that would "improve" it. but i can tell you that I'm so grateful for the improvement. I can deal with it being a small feature in my life. I've been able to do many things I couldn't have done in the past. I feel like I can now a least work my life around it.
something that I want to make clear to you is that *in my case*, my ear does not feel different or altered in any way, I just have PET far less often than I did before. that is the only difference. just less PET. my ear doesn't feel weird in any way or changed (it did for a while after the surgery but only for 6 - 8 weeks).
I have been in touch with a couple of his other patients and their stories are very similar to mine. the only down side is that for some people it seems to come back eventually because the body absorbs all the cartilage, but Dr. Poe has ways of working with that. He builds on the scar tissue that is left behind from the graft so that eventually your eutachian tube is plumped up enough by your body's own material. One of the guys I spoke to was PET free for 9 months, but now it's come back and he's going back to have the procedure done again (but this time it won't be as major because he'll be building on the scar tissue). each case is different i suppose. and i wouldn't be surprised if there are people who's PET hasn't come back (to the point where they've needed more work) since the procedure, perhaps the ones that didn't have it that bad to begin with. i don't know, I'm just speculating.
I know how frightening it is going ahead with something like this (oh how I know). the best thing is to make an appointment to see dr. Poe and talk to him about it. i can only tell you about my experience, but I know that everyone is slightly different (but the 2 other people I spoke to both said their ears felt "normal", just less PET, like me).
Dr. Poe is very serious about not permanently over correcting the eustachin tube, which I found very reassuring. he prefers that you come back several times if necessary till it's just right, or till the frequency of PET symptoms is reduced enough for you to be able to live with it, than to over correct/block your eustachin tube and leave you with a whole new set of problems.
Dr. Kujawski is a doctor in Geneva who I understand was trained by Dr. Poe in how to perform the same work. They are the only people doing it as far as i know.
Again, I want to tell you that to date, I'm very very pleased with the results and if i could go back in time I wouldn't hesitate to do it again. It really worked out for me. If mine starts to come back too frequently then i won't hesitate to go back and see him again.
Sponsor
Remmy
02-26-2007, 09:31 AM
I do not know how to thank you.
You've given us a hope, telling us about you and about other people that have found relief.
Thanks.
All the best.
Remmy.
You've given us a hope, telling us about you and about other people that have found relief.
Thanks.
All the best.
Remmy.
Remmy
02-26-2007, 10:19 AM
Hi Aja.
Excuse me if I add a new question here.
You may not want to answer. I'd understand that.
Did Dr. Poe, or anybody else, understand the cause behind your PET?
Do (did) you have LPR (Laryngo Pharyngeal Reflux)?
Have you experienced frequent otitis, before developing PET?
Are you allergic? Maybe continous inflammation may have lead finally to PET.
Were you too thin when PET started or had you experienced a significant weight loss that may have caused PET?
Anything else I did not mentioned?
I think that, in some cases, if one figures out what the cause of PET is, then PET may be controlled more easily.
Thanks.
Bye.
Remmy.
Excuse me if I add a new question here.
You may not want to answer. I'd understand that.
Did Dr. Poe, or anybody else, understand the cause behind your PET?
Do (did) you have LPR (Laryngo Pharyngeal Reflux)?
Have you experienced frequent otitis, before developing PET?
Are you allergic? Maybe continous inflammation may have lead finally to PET.
Were you too thin when PET started or had you experienced a significant weight loss that may have caused PET?
Anything else I did not mentioned?
I think that, in some cases, if one figures out what the cause of PET is, then PET may be controlled more easily.
Thanks.
Bye.
Remmy.
aja
02-26-2007, 01:50 PM
you're welcome. I'm glad to be able to share it with you.
first I want to say that I've read my post again and I want to slightly clarify something that i said (I am very conscious about giving you the most accurate information/account of my experience as I can).
The person that I said was PET free for 9 months and now has to go back to see dr. poe because it's come back. He wasn't actually completely PET free for 9 months, he was just like me for 9 months, intermittent PET (i suppose when I said PET free i was thinking "life interfering PET free"), sorry that wasn't worded correctly. and now his PET has come back completely and I don't know exactly what his procedure is going to entail this time, but I *assume* it won't be as major (dr. Poe said it's never as major as the first time). The other person I spoke to (I spoke to two of his patients in total) has the same degree of PET frequency as me nowadays and it's been 2 years since his surgery and he's still not feeling the need to go back for a "top up" which is good news in my opinion. perhaps he won't ever need to, perhaps he will if the frequency starts to increase. I'm sure each individual case is very different.
your questions:
1. Did Dr. Poe, or anybody else, understand the cause behind your PET?
2. Do (did) you have LPR (Laryngo Pharyngeal Reflux)?
3. Have you experienced frequent otitis, before developing PET?
4. Are you allergic? Maybe continuous inflammation may have lead finally to PET.
5. Were you too thin when PET started or had you experienced a significant weight loss that may have caused PET?
6. Anything else I did not mentioned?
1. dr. Poe told me that he thinks for some people the cause of PET might be autoimmune - specifically related to Rheumatoid arthritis (because it's degenerative and effects the cartilage). I myself did test positive for Rheumatoid factor, and I do get arthritic pains. when he said that, my intuition told "that's what it is". but actually we don't know for sure. but it's a strong possibility. he said he's seen a pattern of people with PET and RA.
2. what is Laryngo Pharyngeal Reflux? is that the same as acid reflux? I did ask him about that (because i do get that sometimes) but he didn't seem to believe it was related.
3. No
4. no allergies
5. weight loss was never related to my pet. I think that is something Dr's say because they read it in a paper somewhere, and they don't know what else to say to you about PET, they usually know very little about PET. i know it does happen to people with eating disorders, that they lose fat in the ET, but that had nothing to do with mine. in my case i think it was mostly cartilage degeneration.
6. if i think of anything else i'll let you know (promise)
Dr. Poe is the most superior ENT doctor I've ever seen (and I've seen many "top" ENT's). it was such a relief to finally be in the hands of someone who knew more about PET than me! he doesn't consider the ET to be an orrifice that needs filling, he's see's it as a complex and important organ in itself, and his surgery is an attempt to make it as "normal" as possible. i think that he is your man when it comes to PET. and get this..he even know's what PET is like because he gets it sometimes when he does exercise, which is one of the reasons he's made such an effort to create an effective procedure, because un-like other doctors he actually know how unpleasant it is.
as well as being an expert in PET, i think he's also a brilliant doctor and general ENT so he will know what is going on with you, and if he doesn't.. he will tell you that he doesn't know. i've never met a less egotistical doctor in my life.
i hope that info helps.
first I want to say that I've read my post again and I want to slightly clarify something that i said (I am very conscious about giving you the most accurate information/account of my experience as I can).
The person that I said was PET free for 9 months and now has to go back to see dr. poe because it's come back. He wasn't actually completely PET free for 9 months, he was just like me for 9 months, intermittent PET (i suppose when I said PET free i was thinking "life interfering PET free"), sorry that wasn't worded correctly. and now his PET has come back completely and I don't know exactly what his procedure is going to entail this time, but I *assume* it won't be as major (dr. Poe said it's never as major as the first time). The other person I spoke to (I spoke to two of his patients in total) has the same degree of PET frequency as me nowadays and it's been 2 years since his surgery and he's still not feeling the need to go back for a "top up" which is good news in my opinion. perhaps he won't ever need to, perhaps he will if the frequency starts to increase. I'm sure each individual case is very different.
your questions:
1. Did Dr. Poe, or anybody else, understand the cause behind your PET?
2. Do (did) you have LPR (Laryngo Pharyngeal Reflux)?
3. Have you experienced frequent otitis, before developing PET?
4. Are you allergic? Maybe continuous inflammation may have lead finally to PET.
5. Were you too thin when PET started or had you experienced a significant weight loss that may have caused PET?
6. Anything else I did not mentioned?
1. dr. Poe told me that he thinks for some people the cause of PET might be autoimmune - specifically related to Rheumatoid arthritis (because it's degenerative and effects the cartilage). I myself did test positive for Rheumatoid factor, and I do get arthritic pains. when he said that, my intuition told "that's what it is". but actually we don't know for sure. but it's a strong possibility. he said he's seen a pattern of people with PET and RA.
2. what is Laryngo Pharyngeal Reflux? is that the same as acid reflux? I did ask him about that (because i do get that sometimes) but he didn't seem to believe it was related.
3. No
4. no allergies
5. weight loss was never related to my pet. I think that is something Dr's say because they read it in a paper somewhere, and they don't know what else to say to you about PET, they usually know very little about PET. i know it does happen to people with eating disorders, that they lose fat in the ET, but that had nothing to do with mine. in my case i think it was mostly cartilage degeneration.
6. if i think of anything else i'll let you know (promise)
Dr. Poe is the most superior ENT doctor I've ever seen (and I've seen many "top" ENT's). it was such a relief to finally be in the hands of someone who knew more about PET than me! he doesn't consider the ET to be an orrifice that needs filling, he's see's it as a complex and important organ in itself, and his surgery is an attempt to make it as "normal" as possible. i think that he is your man when it comes to PET. and get this..he even know's what PET is like because he gets it sometimes when he does exercise, which is one of the reasons he's made such an effort to create an effective procedure, because un-like other doctors he actually know how unpleasant it is.
as well as being an expert in PET, i think he's also a brilliant doctor and general ENT so he will know what is going on with you, and if he doesn't.. he will tell you that he doesn't know. i've never met a less egotistical doctor in my life.
i hope that info helps.
Remmy
02-27-2007, 04:14 AM
Hello Aja.
You're wonderful. Thanks for your support.
LPR is a kind of a GERD: acid coming from your stomach hits the mucosal tissue at the back of your nose and around your tubes. Since this mucosal tissue is very "fragile", it may get damaged even though your stomach and esophagous are OK and you do not have GERD symptoms!!! It is called BLIND ACID REFLUX, because you have no symptoms.... till PET shows up!!!
That's what Dr. Kujawski told me about my PET!!!
Before developing PET, anyway, I was on a diet (driven by a doctor) and I had a significant weight loss, from 85 Kg to 65 Kg (I'm 171 cm and, anyway, 65 kg is a healthy weight for me). When I finished the diet, I was OK for other 6 months, then PET started.
You say that Dr. Poe didn't seem to believe that LPR was related to your PET. But, as far as you know, does he consider LPR as a possible cause for PET in general?
Dr. Kujawski told me that weight loss is not a major cause for PET. Anyway, I think that in my case the mix of weight loss and LPR may have damaged my tubes.
My PET is "semi-patoulous", since normally my tubes stay closed, and only pop/click when I swallow/yawn. Also, they pop when there's a small change in external pressure (such as when a door slams or when I burp, even slightly). So, up to now, nothing that can take over my life. But all the things I've read on the Internet have scared me so much, that I have been seraching information in order to face with PET when (and if) it worsens.
My main complaint, right now, is a permanent tinnitus (high pitch sound) in my right ear (the most affected by PET).
Do you know of anybody operated by Dr. Kujawski?
Did Dr. Poe ever mentioned Dr. Kujawski?
Really thank you again.
Take care.
Remmy.
You're wonderful. Thanks for your support.
LPR is a kind of a GERD: acid coming from your stomach hits the mucosal tissue at the back of your nose and around your tubes. Since this mucosal tissue is very "fragile", it may get damaged even though your stomach and esophagous are OK and you do not have GERD symptoms!!! It is called BLIND ACID REFLUX, because you have no symptoms.... till PET shows up!!!
That's what Dr. Kujawski told me about my PET!!!
Before developing PET, anyway, I was on a diet (driven by a doctor) and I had a significant weight loss, from 85 Kg to 65 Kg (I'm 171 cm and, anyway, 65 kg is a healthy weight for me). When I finished the diet, I was OK for other 6 months, then PET started.
You say that Dr. Poe didn't seem to believe that LPR was related to your PET. But, as far as you know, does he consider LPR as a possible cause for PET in general?
Dr. Kujawski told me that weight loss is not a major cause for PET. Anyway, I think that in my case the mix of weight loss and LPR may have damaged my tubes.
My PET is "semi-patoulous", since normally my tubes stay closed, and only pop/click when I swallow/yawn. Also, they pop when there's a small change in external pressure (such as when a door slams or when I burp, even slightly). So, up to now, nothing that can take over my life. But all the things I've read on the Internet have scared me so much, that I have been seraching information in order to face with PET when (and if) it worsens.
My main complaint, right now, is a permanent tinnitus (high pitch sound) in my right ear (the most affected by PET).
Do you know of anybody operated by Dr. Kujawski?
Did Dr. Poe ever mentioned Dr. Kujawski?
Really thank you again.
Take care.
Remmy.
Remmy
03-06-2007, 05:40 AM
Hi Aja.
No problem. You're so kind.
Bye
Remmy.
No problem. You're so kind.
Bye
Remmy.
aja
03-08-2007, 02:56 PM
Remmy, your questions..
1. You say that Dr. Poe didn't seem to believe that LPR was related to your PET. But, as far as you know, does he consider LPR as a possible cause for PET in general?
2. Do you know of anybody operated by Dr. Kujawski?
Did Dr. Poe ever mentioned Dr. Kujawski?
1. that is correct. Dr. Poe did not seem to believe that LPR was related to my PET. He did not seem too convinced that LRP was a definite cause of PET (though he was aware of that theory), he seemed to think it was related to Rhumetoid arthritis in many cases (he said he had seen a correlation in the number of patients with a RA or a positive Rhuemetoid factor (which shows up in a blood test) and PET. this would mean that it is auto immune if his theory is correct (the body attacking/eating away at its own tissue). I had a positive Rhemtoid factor which showed up in a blood test that had at one point in my life, and I do get joint pains some times. the thing is..he might have a different idea since he said this to me, i do not know if that is still his opinion, but he seemed to think it was last time i saw him.
2. No Dr. Poe did not mention Dr. Kujawski to me. But I have read about him on various message boards. I once read a message written by a woman that had the cartilage graft done with Dr. K before her wedding and she was absolutely delighted with the results. HOWEVER, I read that message a long time ago and who knows what her situation is now.
by the way, i contacted the two patients of Dr. Poe I spoke to before my surgery and i have asked them to post their expereiences on this message board, and I am pretty sure they will.
1. You say that Dr. Poe didn't seem to believe that LPR was related to your PET. But, as far as you know, does he consider LPR as a possible cause for PET in general?
2. Do you know of anybody operated by Dr. Kujawski?
Did Dr. Poe ever mentioned Dr. Kujawski?
1. that is correct. Dr. Poe did not seem to believe that LPR was related to my PET. He did not seem too convinced that LRP was a definite cause of PET (though he was aware of that theory), he seemed to think it was related to Rhumetoid arthritis in many cases (he said he had seen a correlation in the number of patients with a RA or a positive Rhuemetoid factor (which shows up in a blood test) and PET. this would mean that it is auto immune if his theory is correct (the body attacking/eating away at its own tissue). I had a positive Rhemtoid factor which showed up in a blood test that had at one point in my life, and I do get joint pains some times. the thing is..he might have a different idea since he said this to me, i do not know if that is still his opinion, but he seemed to think it was last time i saw him.
2. No Dr. Poe did not mention Dr. Kujawski to me. But I have read about him on various message boards. I once read a message written by a woman that had the cartilage graft done with Dr. K before her wedding and she was absolutely delighted with the results. HOWEVER, I read that message a long time ago and who knows what her situation is now.
by the way, i contacted the two patients of Dr. Poe I spoke to before my surgery and i have asked them to post their expereiences on this message board, and I am pretty sure they will.
Remmy
03-13-2007, 06:06 PM
Aja, thank you.
In my case, Dr. Kujaswki is pretty sure that LPR is the reason behind my PET.
Anyway, I have to say that weight loss may have been another cause in my case; in fact, six months before my PET started, I finished a diet and I lost 20 kg.
Notice that Rhumetoid arthritis, Weight Loss, LPR have the same effect on your body: your tissues are damaged, eaten away........
I really hope that two patients come to the forum to tell us their stories.
Another question for you, if you do not mind.
How come you decided to rely on Dr. Poe's surgery and not on Dr. Shea's surgery?
There's a friend of mine that is going to have surgery with Dr. Shea, because this surgical approach is less complex and can be reverted (you know Dr. Shea does not repair the tubal valve, but insert one or more length of silycon into the internal orifice of the tube, that he accesses through a slice in the drum).
Bye
Remmy.
In my case, Dr. Kujaswki is pretty sure that LPR is the reason behind my PET.
Anyway, I have to say that weight loss may have been another cause in my case; in fact, six months before my PET started, I finished a diet and I lost 20 kg.
Notice that Rhumetoid arthritis, Weight Loss, LPR have the same effect on your body: your tissues are damaged, eaten away........
I really hope that two patients come to the forum to tell us their stories.
Another question for you, if you do not mind.
How come you decided to rely on Dr. Poe's surgery and not on Dr. Shea's surgery?
There's a friend of mine that is going to have surgery with Dr. Shea, because this surgical approach is less complex and can be reverted (you know Dr. Shea does not repair the tubal valve, but insert one or more length of silycon into the internal orifice of the tube, that he accesses through a slice in the drum).
Bye
Remmy.
lib
03-16-2007, 10:58 PM
Cathy,
I agree 100%, DR POE, he is the most amazing dr in the world. He treats his patients with care and compassion.
he figured out my rare problem, stuck by me, and reassured me....lib
I agree 100%, DR POE, he is the most amazing dr in the world. He treats his patients with care and compassion.
he figured out my rare problem, stuck by me, and reassured me....lib
Remmy
03-26-2007, 05:04 AM
Hi Lotje.
Here are some information I have. Hope it can help.
Dr. Shea's method consists of one ore more lengths of teflon (lenght 2-3 cm, diameter 1 - 2 mm each, as far as I've undestood), that is inserted into the hole of your eustachian tube from the internal orifice: they say this surgery is very simple, since they make a slice in your drum, lift it up and reach the internal orifice of the tube; this orifice is always open (it is normal) and the lenghts of silicon are inserted just there. Finally, they close the drum.
On his site, Dr. Shea claims that out of 40 people, 90% got significant/complete relief, 5% did not notice any imporvement, 5% worsened.
Anyway, they say that generally there are not side effects.
I've read of a girl operated by a doctor in Holland that used Dr. Shea's method. This girls is very satisfied with the result, even though she is experiencing some side effects (that in her case seem to be permanent): deafness on the affected side (30% left) and a high pitch sound (tinnitus). Anyway, she is very satisfied. This side effects may depend on the fact that the teflon lenght does not allow for a proper pressure balancement... maybe, I am not sure.
Next 9th of April, a "PET friend" of mine is gonna flight from England to USA to be operated at Sheaclinic...... let's wait for is return, so he can tell us about the results, which I'm sure will be very good.
I agree with you that Shea's method may be less scaring than others, since it does not modify your tubes: the plugs are not inserted into the tissue of the tube, but into the orifice; if needed, the plugs might be removed without any damage.
Where are you from Lotje? Did you know that in Europe Dr. Kujawski in Geneve performs cartilagineous grafting? I do not know if Dr. Kujawski perform also sylicon plug insertion in the tissue of the Eustachian Tube. I'll ask him.
Bye
Remmy.
Here are some information I have. Hope it can help.
Dr. Shea's method consists of one ore more lengths of teflon (lenght 2-3 cm, diameter 1 - 2 mm each, as far as I've undestood), that is inserted into the hole of your eustachian tube from the internal orifice: they say this surgery is very simple, since they make a slice in your drum, lift it up and reach the internal orifice of the tube; this orifice is always open (it is normal) and the lenghts of silicon are inserted just there. Finally, they close the drum.
On his site, Dr. Shea claims that out of 40 people, 90% got significant/complete relief, 5% did not notice any imporvement, 5% worsened.
Anyway, they say that generally there are not side effects.
I've read of a girl operated by a doctor in Holland that used Dr. Shea's method. This girls is very satisfied with the result, even though she is experiencing some side effects (that in her case seem to be permanent): deafness on the affected side (30% left) and a high pitch sound (tinnitus). Anyway, she is very satisfied. This side effects may depend on the fact that the teflon lenght does not allow for a proper pressure balancement... maybe, I am not sure.
Next 9th of April, a "PET friend" of mine is gonna flight from England to USA to be operated at Sheaclinic...... let's wait for is return, so he can tell us about the results, which I'm sure will be very good.
I agree with you that Shea's method may be less scaring than others, since it does not modify your tubes: the plugs are not inserted into the tissue of the tube, but into the orifice; if needed, the plugs might be removed without any damage.
Where are you from Lotje? Did you know that in Europe Dr. Kujawski in Geneve performs cartilagineous grafting? I do not know if Dr. Kujawski perform also sylicon plug insertion in the tissue of the Eustachian Tube. I'll ask him.
Bye
Remmy.
Remmy
03-28-2007, 09:18 AM
You did answer and I really thank you for your kindness.
Bye
Remmy.
Bye
Remmy.
fluffyshouse
03-28-2007, 05:00 PM
Dear Lotje and Remmy,
Thank you for writing regarding the Shea Clinic. I had never heard of it before you asked me about it, but because of the two of you, I have contacted them for more information.
I am wondering if I should go see them before I have more surgery from Dr. Poe in June. I have had two surgeries from Dr. Poe like I have written about before, and thought I would try a third time.
Remmy, I will be waiting to hear how your friend is after having the PET procedure done at the Shea Clinic. I just don't know what to do so am anxious to hear everything anyone knows about the procedure done at the Shea Clinic.
Lotje, you said you are at the point of needing help for your PET. Which way are you leaning towards trying? Maybe you can help me decide what to do, too. If you email Dr. Poe through his assistant, Carmine, listing your questions in your email, he will either call you or answer your questions through Carmine. He is really good at answering questions. I wonder what he has to say about the Shea method.
The thing that has me really hesitant about the Shea Clinic method is the eardrum being involved. Remmy, is it actually cut, or does it just lift up? It was having ventilating tubes placed in my eardrums for earaches a year and a half ago that gave me autophony. I couldn't tolerate the tubes and somehow I got autophony out of the mistake of having tubes. It turned out it was my jaw that was giving me the earaches so never needed the vent tubes anyway. But it's too late now.
Does a person need vent tubes after the Shea procedure to fly home? I took the train home from Boston after my surgery from Dr. Poe, so will do that again before I ever have tubes again. I had tubes to fly home after the second surgery and again, I couldn't tolerate them.
Thank you for any other information you have regarding the Shea method.
Cathy
Thank you for writing regarding the Shea Clinic. I had never heard of it before you asked me about it, but because of the two of you, I have contacted them for more information.
I am wondering if I should go see them before I have more surgery from Dr. Poe in June. I have had two surgeries from Dr. Poe like I have written about before, and thought I would try a third time.
Remmy, I will be waiting to hear how your friend is after having the PET procedure done at the Shea Clinic. I just don't know what to do so am anxious to hear everything anyone knows about the procedure done at the Shea Clinic.
Lotje, you said you are at the point of needing help for your PET. Which way are you leaning towards trying? Maybe you can help me decide what to do, too. If you email Dr. Poe through his assistant, Carmine, listing your questions in your email, he will either call you or answer your questions through Carmine. He is really good at answering questions. I wonder what he has to say about the Shea method.
The thing that has me really hesitant about the Shea Clinic method is the eardrum being involved. Remmy, is it actually cut, or does it just lift up? It was having ventilating tubes placed in my eardrums for earaches a year and a half ago that gave me autophony. I couldn't tolerate the tubes and somehow I got autophony out of the mistake of having tubes. It turned out it was my jaw that was giving me the earaches so never needed the vent tubes anyway. But it's too late now.
Does a person need vent tubes after the Shea procedure to fly home? I took the train home from Boston after my surgery from Dr. Poe, so will do that again before I ever have tubes again. I had tubes to fly home after the second surgery and again, I couldn't tolerate them.
Thank you for any other information you have regarding the Shea method.
Cathy
Remmy
03-29-2007, 04:43 PM
Hi Cathy.
Of course I am not a doctor.... but as far as I've understood, the drum completely isolates the middle ear from outside.
So it is necessary to open it to access the orifice of the tube located in the middle ear.
I read somewhere that a slice is made in the drum, then the surgeon lift up the drum and insert one or more length of teflon into the ET..... then, I guess, they close the drum again.
I do not know if drum tubes are needer after Shea's surgery... maybe it depends on the status of your tube after surgery.
Bye
Remmy.
Of course I am not a doctor.... but as far as I've understood, the drum completely isolates the middle ear from outside.
So it is necessary to open it to access the orifice of the tube located in the middle ear.
I read somewhere that a slice is made in the drum, then the surgeon lift up the drum and insert one or more length of teflon into the ET..... then, I guess, they close the drum again.
I do not know if drum tubes are needer after Shea's surgery... maybe it depends on the status of your tube after surgery.
Bye
Remmy.
fluffyshouse
03-30-2007, 01:11 AM
Hello Remmy,
Thank you for answering me so quickly. I have many questions for the Shea Clinic and have started an email to them. I'll let you know what they have to say. I'm so confused as to who to go to. I'm so tired of the autophony, pressure, clicking, etc. of Patulous.
I am keeping my surgery date with Dr. Poe in June until I know more about the Shea Clinic method. I'm so nervous that it involves the eardrum.
Have you had PET surgery before? If not, who are you thinking of going to if you decide to try and get it fixed?
In earlier post you said the Shea method would be good for someone that is having PET surgery for the first time. What do you think about me after I have had two different surgeries from Dr. Poe?
I wonder how Addio is doing. Addio, if you read this please let us know.
Cathy
Thank you for answering me so quickly. I have many questions for the Shea Clinic and have started an email to them. I'll let you know what they have to say. I'm so confused as to who to go to. I'm so tired of the autophony, pressure, clicking, etc. of Patulous.
I am keeping my surgery date with Dr. Poe in June until I know more about the Shea Clinic method. I'm so nervous that it involves the eardrum.
Have you had PET surgery before? If not, who are you thinking of going to if you decide to try and get it fixed?
In earlier post you said the Shea method would be good for someone that is having PET surgery for the first time. What do you think about me after I have had two different surgeries from Dr. Poe?
I wonder how Addio is doing. Addio, if you read this please let us know.
Cathy
KSM79
03-30-2007, 05:50 PM
Hi Lotje..
Thanks for replying and telling us about your case.I was wondering if you could tell us how much the whole thing will cost. I mean the surgery cost, surgeon fee and hospital stay. Dr.Poe is good but he is very expensive. So is Dr. Kujawski. I hope Dr.Shea is more resonable with his method.
Thanks
KSM
Thanks for replying and telling us about your case.I was wondering if you could tell us how much the whole thing will cost. I mean the surgery cost, surgeon fee and hospital stay. Dr.Poe is good but he is very expensive. So is Dr. Kujawski. I hope Dr.Shea is more resonable with his method.
Thanks
KSM
fluffyshouse
03-30-2007, 06:06 PM
Hello Lotje,
I just had to write right back. I feel so bad that you have PET so bad. You just have to get some help. At least when I lie down, it all goes away. And I can push on a place in my neck, and that closes the Eustachian tube.
I just saw Nik's short note that he had surgery by Dr. Shea but I didn't get the post about his experience. Did you see it? I just want to know so much more about the Shea method and hear from anyone who has had it. I would like to know if you can have the procedure and not lose hearing.
Do you know or does someone else know how long they have been doing the silicon tubing and if it's past the study stage? The hearing loss scares me. The ventilation tubes I had placed in my eardrums a year and a half ago caused hearing loss, so I might be at a higher risk for that if they opened my eardrum up.
Dr. Shea has written me, but I had more questions so have written him back. I hope he doesn't mind all of my questions. He is located in Tennessee, which is in the southeastern part of the USA. I live in Utah which is in the western United States. The plane ride for me would be about three to four hours. I am hoping if they accept me as a patient that I could be evaluated and then in the same trip a few days later, have the procedure done, all in one trip.
You asked about the silicon tube that was placed in my ear. It is in the tissue leaning up against the Eustachian tube, and not in the Eustachian tube. On the other side of the same Eustachian tube is the cartilage graft that I had last September. That is also in the tissue. Dr. Poe was trying to narrow the Eustachian tube from the outside of it. In my other ear, which doesn't have the constant autophony, Dr. Poe injected it with the calcuim paste, just like he did for Addio. That ear is actually worse than before the injection, but it could be because I had ventilation tubes after in order to fly home, and not the injection itself.
We had taken the train last June, when I had the silicon plug inserted. We had to travel across the United States from Boston. It took 3 days and my husband was so miserable. The train was so rough and bumpy that I'm sure the train rolled over many rocks or at least it felt like it. I slept on the bottom bed, but my husband and son slept in top bunks. They had to be strapped into their beds so as to not fall out during the night. That is why I had the vent tubes for the second time so we didn't have to take the train. But if I have the surgery from Dr. Poe in June, we will take the train again. Not more tubes for me! Your trains in Europe are so nice and smooth. They are not like that here. I'm sure they are using the same trains as they did 100 years ago, except that they have a new outside shell to look modern.
You are right that the two methods are just the opposite. I am going to ask Dr. Poe about the Shea method.
Why are you afraid to travel with your PET? Flying won't bother your ears because they are too open and won't get clogged like a normal person's ears. Dr. Poe's appointments are very back up, so if you call to make an appointment, you could wait several months. And surgery is usually booked four to six months in advance. That will give you time to get the courage to come to the USA. You could make the appointment with Dr. Poe and the Shea Clinic at the same trip. Tennessee is a few states below Massachuetts where Dr. Poe is. It wouldn't take long to fly between the two states. Take someone with you then maybe you will be more confortable traveling. I wouldn't do it alone. It's too scary for me, too.
I also feel like the best of my life is over. I am 52 years old and thought a couple of years ago that I still had a long time before I broke down. But a simple cold and then ventilation tubes in my eardrums started PET. I cry a lot, which by the way, helps my autophony. Crying makes the tissues in the sinuses and ears swell, shutting off the Eustachian tube.
Please don't apologize if you didn't answer all of my questions. You are not stupid. I am new to these boards, too. It has really helped my spirits to correspond with you and the others. I don't know anyone else around here who has PET. Anyone I talk to about it, thinks I'm crazy.
Did you know that Dr. Poe has it, too? But it's just when he exercises. Then it's gone. He's a small thin man.
If there is anyone out there who has had the Shea tubing method of fixing autophony, please write about it on the Health Boards.
Where do you live in Europe?
Lotje, stay in touch.
Your friend,
Cathy
I just had to write right back. I feel so bad that you have PET so bad. You just have to get some help. At least when I lie down, it all goes away. And I can push on a place in my neck, and that closes the Eustachian tube.
I just saw Nik's short note that he had surgery by Dr. Shea but I didn't get the post about his experience. Did you see it? I just want to know so much more about the Shea method and hear from anyone who has had it. I would like to know if you can have the procedure and not lose hearing.
Do you know or does someone else know how long they have been doing the silicon tubing and if it's past the study stage? The hearing loss scares me. The ventilation tubes I had placed in my eardrums a year and a half ago caused hearing loss, so I might be at a higher risk for that if they opened my eardrum up.
Dr. Shea has written me, but I had more questions so have written him back. I hope he doesn't mind all of my questions. He is located in Tennessee, which is in the southeastern part of the USA. I live in Utah which is in the western United States. The plane ride for me would be about three to four hours. I am hoping if they accept me as a patient that I could be evaluated and then in the same trip a few days later, have the procedure done, all in one trip.
You asked about the silicon tube that was placed in my ear. It is in the tissue leaning up against the Eustachian tube, and not in the Eustachian tube. On the other side of the same Eustachian tube is the cartilage graft that I had last September. That is also in the tissue. Dr. Poe was trying to narrow the Eustachian tube from the outside of it. In my other ear, which doesn't have the constant autophony, Dr. Poe injected it with the calcuim paste, just like he did for Addio. That ear is actually worse than before the injection, but it could be because I had ventilation tubes after in order to fly home, and not the injection itself.
We had taken the train last June, when I had the silicon plug inserted. We had to travel across the United States from Boston. It took 3 days and my husband was so miserable. The train was so rough and bumpy that I'm sure the train rolled over many rocks or at least it felt like it. I slept on the bottom bed, but my husband and son slept in top bunks. They had to be strapped into their beds so as to not fall out during the night. That is why I had the vent tubes for the second time so we didn't have to take the train. But if I have the surgery from Dr. Poe in June, we will take the train again. Not more tubes for me! Your trains in Europe are so nice and smooth. They are not like that here. I'm sure they are using the same trains as they did 100 years ago, except that they have a new outside shell to look modern.
You are right that the two methods are just the opposite. I am going to ask Dr. Poe about the Shea method.
Why are you afraid to travel with your PET? Flying won't bother your ears because they are too open and won't get clogged like a normal person's ears. Dr. Poe's appointments are very back up, so if you call to make an appointment, you could wait several months. And surgery is usually booked four to six months in advance. That will give you time to get the courage to come to the USA. You could make the appointment with Dr. Poe and the Shea Clinic at the same trip. Tennessee is a few states below Massachuetts where Dr. Poe is. It wouldn't take long to fly between the two states. Take someone with you then maybe you will be more confortable traveling. I wouldn't do it alone. It's too scary for me, too.
I also feel like the best of my life is over. I am 52 years old and thought a couple of years ago that I still had a long time before I broke down. But a simple cold and then ventilation tubes in my eardrums started PET. I cry a lot, which by the way, helps my autophony. Crying makes the tissues in the sinuses and ears swell, shutting off the Eustachian tube.
Please don't apologize if you didn't answer all of my questions. You are not stupid. I am new to these boards, too. It has really helped my spirits to correspond with you and the others. I don't know anyone else around here who has PET. Anyone I talk to about it, thinks I'm crazy.
Did you know that Dr. Poe has it, too? But it's just when he exercises. Then it's gone. He's a small thin man.
If there is anyone out there who has had the Shea tubing method of fixing autophony, please write about it on the Health Boards.
Where do you live in Europe?
Lotje, stay in touch.
Your friend,
Cathy
KSM79
03-31-2007, 07:17 AM
Hey Lotje,
Well my PET is the same as any other person suffering from it. The Autophony, clicking/popping, Tinnitus. I have been suffering from it for the past 4 years and life has been hell.
I spoke to Dr.Poe over the phone and also emailed Dr. Kujawski. Their methods seem to work but they are too expensive. And if Dr.Shea can fix the Autophony part of the problem, thats half the problem gone as it bothers me the most. Clicking/popping I can deal with.
Well I emailed Dr.Sheas clinic y'day , so just looking forward to hearing from them.
Will keep you posted.
Thanks
KSM
Well my PET is the same as any other person suffering from it. The Autophony, clicking/popping, Tinnitus. I have been suffering from it for the past 4 years and life has been hell.
I spoke to Dr.Poe over the phone and also emailed Dr. Kujawski. Their methods seem to work but they are too expensive. And if Dr.Shea can fix the Autophony part of the problem, thats half the problem gone as it bothers me the most. Clicking/popping I can deal with.
Well I emailed Dr.Sheas clinic y'day , so just looking forward to hearing from them.
Will keep you posted.
Thanks
KSM
KSM79
04-02-2007, 03:23 PM
Yeah Dude..I am from India, New Delhi. I was living in the US when this happened, and had to leave coz I didn't know what I had and my insurance wasnt covering any of my visits to the ENT's there, plus i was going nuts.
And yes I was also born in '79 like you. And I guess you're the first Indian I have found to have this disorder..well half indian atleast...lol. Just wondering, how has it affected you, like your work, friends, life in general. Like are you able to just "live with it" as they say?
Yes i did read the Japanese website, just the recovery or follow up time is very vast..6-68 months???
Yeah I am very curious to know how your surgery goes. I might get it done next month, if you feel better after it.
Cheers mate!!
KSM
And yes I was also born in '79 like you. And I guess you're the first Indian I have found to have this disorder..well half indian atleast...lol. Just wondering, how has it affected you, like your work, friends, life in general. Like are you able to just "live with it" as they say?
Yes i did read the Japanese website, just the recovery or follow up time is very vast..6-68 months???
Yeah I am very curious to know how your surgery goes. I might get it done next month, if you feel better after it.
Cheers mate!!
KSM
fluffyshouse
04-02-2007, 05:16 PM
Dear Lotje,
Thank you for taking the time to answer my questions. I know it took quite a while for you to do so.
You mentioned you have RA. I'm so sorry about that. My younger sister does, too, so I understand all the medications that you have to take. I know that you don't heal as fast as a person that doesn't have to take all the meds that you and my sister have to take. So I can understand about your concern regarding having your eardrum opened up and the silicon tubing placed inside your ear. You wondered if a person can live without an eardrum, and I really don't think so. It protects the inside of your ear. I do know that there are man made eardrums that work perfectly well, if your own doesn't function anymore.
You really have an overload of health maladies that you have to contend with. So does my sister. But PET is something that you have a chance to get fixed. I will keep bugging you about getting appointments with Dr. Poe and/or Dr. Shea. I care about you and want you fixed.
I also have GERD and take medication for that, but I only recently started getting it. Dr. Poe told me that PET can be caused after a bad cold like I had. Maybe a cold helps to weaken already weakened muscles around the Eustachian tube.
My husband is going to email Dr. Poe today with our questions, one of them is what he thinks about Dr. Shea's method. Dr. Poe operates on Mondays, so it might be a few days before he answers back. It's most likely he will call my husband, and not have his assistant email us back. He's so good to take the time to call.
And you don't make many mistakes in English, like you asked me about. I am so impressed with your English. I couldn't speak your language for anything in the world. I'm the stupid one.
I'm still waiting for a second reply from Dr. Shea. I sent him a lot of questions so it might take some time for him to answer back. Because of you, I feel like I have a new hope. I have a spring in my step knowing there is an option besides Dr. Poe. I will miss him if I never go back, though.
Take care of yourself, Lotje, and please make some appointments after we hear back from both excellent doctors. I will feel better if you do.
Cathy
Thank you for taking the time to answer my questions. I know it took quite a while for you to do so.
You mentioned you have RA. I'm so sorry about that. My younger sister does, too, so I understand all the medications that you have to take. I know that you don't heal as fast as a person that doesn't have to take all the meds that you and my sister have to take. So I can understand about your concern regarding having your eardrum opened up and the silicon tubing placed inside your ear. You wondered if a person can live without an eardrum, and I really don't think so. It protects the inside of your ear. I do know that there are man made eardrums that work perfectly well, if your own doesn't function anymore.
You really have an overload of health maladies that you have to contend with. So does my sister. But PET is something that you have a chance to get fixed. I will keep bugging you about getting appointments with Dr. Poe and/or Dr. Shea. I care about you and want you fixed.
I also have GERD and take medication for that, but I only recently started getting it. Dr. Poe told me that PET can be caused after a bad cold like I had. Maybe a cold helps to weaken already weakened muscles around the Eustachian tube.
My husband is going to email Dr. Poe today with our questions, one of them is what he thinks about Dr. Shea's method. Dr. Poe operates on Mondays, so it might be a few days before he answers back. It's most likely he will call my husband, and not have his assistant email us back. He's so good to take the time to call.
And you don't make many mistakes in English, like you asked me about. I am so impressed with your English. I couldn't speak your language for anything in the world. I'm the stupid one.
I'm still waiting for a second reply from Dr. Shea. I sent him a lot of questions so it might take some time for him to answer back. Because of you, I feel like I have a new hope. I have a spring in my step knowing there is an option besides Dr. Poe. I will miss him if I never go back, though.
Take care of yourself, Lotje, and please make some appointments after we hear back from both excellent doctors. I will feel better if you do.
Cathy
Remmy
04-02-2007, 06:23 PM
Hello Remmy,
Thank you for answering me so quickly. I have many questions for the Shea Clinic and have started an email to them. I'll let you know what they have to say. I'm so confused as to who to go to. I'm so tired of the autophony, pressure, clicking, etc. of Patulous.
I am keeping my surgery date with Dr. Poe in June until I know more about the Shea Clinic method. I'm so nervous that it involves the eardrum.
Have you had PET surgery before? If not, who are you thinking of going to if you decide to try and get it fixed?
In earlier post you said the Shea method would be good for someone that is having PET surgery for the first time. What do you think about me after I have had two different surgeries from Dr. Poe?
I wonder how Addio is doing. Addio, if you read this please let us know.
Cathy
Hi Cathy.
Sorry for my delay in answering, but I had some problems.
I have been sufffering from PET for barely more than one year; my PET is bilateral and worse in my right tube; my main symptoms are:
- tinnitus (high pitch sound)
- clicks and pops when I yawn and swallow, sometimes when I talk
As you can read, I never have autophony, but I do know what it is, since I had one short episode almos one year ago, and some very slight episode once in a while. When my PET started, I also could hear my heartbeat when I had my ears on a pillow and I experienced slight hyperacousy as well.
Right now, my PET is NOT unbearable, fortunately, so in my case Dr. Shea's surgery may not be an option, since it is oriented to provide relief from autophony, which I do not have.
So, I'm wondering if there is any way to block the evolution of my PET; maybe, an injection may stop my (mainly right) tube from flopping open.... but it may also completely overcorrect the defect, so I may end up with having a completely blocked tube.
Summing up: I do not know what to do!!!
PETR/Injection do scare me.... but also thinking that my PET may evolve, scares me very much.
Do you think that an injection may help me?
What would you do in my case, with slight PET?
When I told that Shea's surgery may be a good option for those who have never been operated for PET before, I meant that if a person is not prone to risks, is scared of a complex procedure (I am too) and wants to wait for further improvements in PETR/injection, the insertion of teflon lenghts into the ET may be an option to get relief safely.
If you are tired of undergoing complex surgery, if you are afraid that it may damage your tubes, Shea's approach may be an option while waiting that the status of your tubes may be better understood and that PETR/injection get more mature and stable.
As always, I've to say that I am not a doctor and these are only personal opinions of mine.
Kujawski, Poe and Shea are all over the (English speaking) world our only hopes. All of them are known to be excellent ENT's.
As Nik told us, also in Japan there are doctors investigating about PET.
I have not been able to find contact info to get in touch with them and ask about their procedures..... anyway, what I read concerned a method very similar to Shea's one, while PETR/injection seems to be performed only by Kujawski and Poe. Furthermore, on the same link proposed by Nik, if you search for PATULOUS EUSTACHIAN TUBE, you'll find that in Japan they are experimenting ET ligation in case of untreatable PET.
Anyway, before undergoing a complete blockage of the ET with ET ligation, Kujawski/Poe/Shea are way to go through, becasue I guess that if our tubes are completely closed, we would have to live with a tube in our drums, which we may not tolerate.
Bye
Remmy.
Thank you for answering me so quickly. I have many questions for the Shea Clinic and have started an email to them. I'll let you know what they have to say. I'm so confused as to who to go to. I'm so tired of the autophony, pressure, clicking, etc. of Patulous.
I am keeping my surgery date with Dr. Poe in June until I know more about the Shea Clinic method. I'm so nervous that it involves the eardrum.
Have you had PET surgery before? If not, who are you thinking of going to if you decide to try and get it fixed?
In earlier post you said the Shea method would be good for someone that is having PET surgery for the first time. What do you think about me after I have had two different surgeries from Dr. Poe?
I wonder how Addio is doing. Addio, if you read this please let us know.
Cathy
Hi Cathy.
Sorry for my delay in answering, but I had some problems.
I have been sufffering from PET for barely more than one year; my PET is bilateral and worse in my right tube; my main symptoms are:
- tinnitus (high pitch sound)
- clicks and pops when I yawn and swallow, sometimes when I talk
As you can read, I never have autophony, but I do know what it is, since I had one short episode almos one year ago, and some very slight episode once in a while. When my PET started, I also could hear my heartbeat when I had my ears on a pillow and I experienced slight hyperacousy as well.
Right now, my PET is NOT unbearable, fortunately, so in my case Dr. Shea's surgery may not be an option, since it is oriented to provide relief from autophony, which I do not have.
So, I'm wondering if there is any way to block the evolution of my PET; maybe, an injection may stop my (mainly right) tube from flopping open.... but it may also completely overcorrect the defect, so I may end up with having a completely blocked tube.
Summing up: I do not know what to do!!!
PETR/Injection do scare me.... but also thinking that my PET may evolve, scares me very much.
Do you think that an injection may help me?
What would you do in my case, with slight PET?
When I told that Shea's surgery may be a good option for those who have never been operated for PET before, I meant that if a person is not prone to risks, is scared of a complex procedure (I am too) and wants to wait for further improvements in PETR/injection, the insertion of teflon lenghts into the ET may be an option to get relief safely.
If you are tired of undergoing complex surgery, if you are afraid that it may damage your tubes, Shea's approach may be an option while waiting that the status of your tubes may be better understood and that PETR/injection get more mature and stable.
As always, I've to say that I am not a doctor and these are only personal opinions of mine.
Kujawski, Poe and Shea are all over the (English speaking) world our only hopes. All of them are known to be excellent ENT's.
As Nik told us, also in Japan there are doctors investigating about PET.
I have not been able to find contact info to get in touch with them and ask about their procedures..... anyway, what I read concerned a method very similar to Shea's one, while PETR/injection seems to be performed only by Kujawski and Poe. Furthermore, on the same link proposed by Nik, if you search for PATULOUS EUSTACHIAN TUBE, you'll find that in Japan they are experimenting ET ligation in case of untreatable PET.
Anyway, before undergoing a complete blockage of the ET with ET ligation, Kujawski/Poe/Shea are way to go through, becasue I guess that if our tubes are completely closed, we would have to live with a tube in our drums, which we may not tolerate.
Bye
Remmy.
KSM79
04-03-2007, 01:48 PM
Hey Nik, Yes you're right...i misread the text. Well as a matter of fact, I just spoke with Dr.Shea and he explained how the procedure is done. Seems pretty simple and logical. My only question is...why is Dr.Poe more expensive when such a simple thing is available.
Our best bet would be to wait for surgery to take place and see how you feel.
Hear it straight from the horses mouth...lol
Later
KSM
Our best bet would be to wait for surgery to take place and see how you feel.
Hear it straight from the horses mouth...lol
Later
KSM
Addio
04-03-2007, 07:48 PM
Hi all,
Here a short update from me...
My cold has disappeared and I still am 100% PET free. In 3 weeks from now I have an appointment with my local ENT doctor to have the ventilating tubes (to protect me for flying home) removed.
After that I have to wait a while and then I have to experience the results of the surgery. I'll cross my fingers then and hope my ET's are not blocked and function normally (also no autophony anymore)
I let you all know the result.
Bye,
Addio
Here a short update from me...
My cold has disappeared and I still am 100% PET free. In 3 weeks from now I have an appointment with my local ENT doctor to have the ventilating tubes (to protect me for flying home) removed.
After that I have to wait a while and then I have to experience the results of the surgery. I'll cross my fingers then and hope my ET's are not blocked and function normally (also no autophony anymore)
I let you all know the result.
Bye,
Addio
Addio
04-03-2007, 07:52 PM
Oh, my surgery report was lost but I was lucky I had it also somewhere else ;) Here is it again for those that haven't read it before...
------------------------------------------------------
Hi all,
I have returned from Boston and had the PET surgery done by Dr. Poe. I finally met Dr. Poe in real and my first impression was like everybody here already told. He sure is a very nice doctor and very caring for his patients. I was so happy to be his patient. Now at this moment I have COMPLETE relieve from PET!!! I know it's still too soon to draw conclusions but till now I have 100% releive. Yes Remmy, it's addio (Italian) farewell to PET
I will describe my visit to Boston. The pre-op visit at Children's and MEEI visit + surgery:
Before surgery could take place I was examined. Dr. Poe uses a camera [very small of course] and runs it in the nose. On a screen I could see what was happening when I swallow or yawn. Every movement from the ET was recorded on tape. It very soon became clear when I swallow or yawn my ET opened, but stayed open instead of closing by itself. That was the moment my autophony started and fullness in the ear. This could only be compensated by hard sniffing.
What I already suspected was confirmed, I was not one of his worst cases (I still was able to compensate by hard sniffing, though that was many 100’s times every day) However, unfortunately I was still a complex case.
In the past I had twice a cholesteatoma and that was due to a closed ET. My ET seemed to be partly closed but also patulous. The ET is not just a tube but looks more like a valve that exists of two muscled halfs. Both halfs can contract and expand and that way open and close the space between the nose and the middle ear. One half of the muscles was somehow not capable to move (only a little bit) The other half was exorbitantly trying to compensate this lack, causing the tube to become patulous.
After Dr. Poe had a good picture of my ET’s and medical history the decision was made to have the Calcium injections done to correct the ET’s. The fact I was not one of Dr. Poes’s worst cases made it possible to correct both ET’s in this one visit. Normally Dr. Poe corrects only one ET at a time. To correct both sides Dr. Poe has to examine every patient individually to be able to make that decision. I also needed temporary ventilating tubes for a save trip home by plane.
In the pre-op visit I also got a hearing test and tympanogram. The same day I also had to visit the MEEI for another pre-op consult for my medical history and some lab tests (CBC, EKG, BMP and VP)
Two days later the surgery was scheduled. One day before my surgery I felt suddenly very shaky, not so well and suspected to develop some fever. That night before the surgery I was very worried if the operation could take place. Maybe the surgery had to be postponed and I had to extend my stay in Boston and change my trip back to home?
The morning from the surgery I spoke the anesthesiologist and Dr. Poe. Luckily my temperature was not too high (100.2F) and my nose was dry. Both doctors decided to continue the surgery. The surgery was under general anaesthesia.
After the surgery there was no pain to the ears or nose. Only a sorrow throat from the breathing tube. Everything went very well. After the surgery, when I was awoke again, Dr. Poe was also there to see me. He is really very caring.
After the night in the MEEI my temperature was normal and I was discharged from the hospital. The same evening I went back for my last day (and night) in the hotel I developed a terrible cold and had to sneeze a lot. Sneezing is dangerous after an operation like I had and I had to be careful not to sneeze with my mouth closed (not to build the pressure). Blowing the nose is also prohibited. This evening I was again very afraid to miss my flight back because I started to feel less and less healthy. Finally I was able to sleep a little bit and the next day I had to drag myself to the airport, not to miss my flight.
For the final result of the surgery I have to wait some time (at least a month) Then my local ENT doctor can remove the vent. tubes. I hope they are the last I’ll ever have, because the vent. tubes have damaged my eardrums in the past. After my eardrums are closed, I have to experience the result of the calcium injections. To be continued...
------------------------------------------------------
------------------------------------------------------
Hi all,
I have returned from Boston and had the PET surgery done by Dr. Poe. I finally met Dr. Poe in real and my first impression was like everybody here already told. He sure is a very nice doctor and very caring for his patients. I was so happy to be his patient. Now at this moment I have COMPLETE relieve from PET!!! I know it's still too soon to draw conclusions but till now I have 100% releive. Yes Remmy, it's addio (Italian) farewell to PET
I will describe my visit to Boston. The pre-op visit at Children's and MEEI visit + surgery:
Before surgery could take place I was examined. Dr. Poe uses a camera [very small of course] and runs it in the nose. On a screen I could see what was happening when I swallow or yawn. Every movement from the ET was recorded on tape. It very soon became clear when I swallow or yawn my ET opened, but stayed open instead of closing by itself. That was the moment my autophony started and fullness in the ear. This could only be compensated by hard sniffing.
What I already suspected was confirmed, I was not one of his worst cases (I still was able to compensate by hard sniffing, though that was many 100’s times every day) However, unfortunately I was still a complex case.
In the past I had twice a cholesteatoma and that was due to a closed ET. My ET seemed to be partly closed but also patulous. The ET is not just a tube but looks more like a valve that exists of two muscled halfs. Both halfs can contract and expand and that way open and close the space between the nose and the middle ear. One half of the muscles was somehow not capable to move (only a little bit) The other half was exorbitantly trying to compensate this lack, causing the tube to become patulous.
After Dr. Poe had a good picture of my ET’s and medical history the decision was made to have the Calcium injections done to correct the ET’s. The fact I was not one of Dr. Poes’s worst cases made it possible to correct both ET’s in this one visit. Normally Dr. Poe corrects only one ET at a time. To correct both sides Dr. Poe has to examine every patient individually to be able to make that decision. I also needed temporary ventilating tubes for a save trip home by plane.
In the pre-op visit I also got a hearing test and tympanogram. The same day I also had to visit the MEEI for another pre-op consult for my medical history and some lab tests (CBC, EKG, BMP and VP)
Two days later the surgery was scheduled. One day before my surgery I felt suddenly very shaky, not so well and suspected to develop some fever. That night before the surgery I was very worried if the operation could take place. Maybe the surgery had to be postponed and I had to extend my stay in Boston and change my trip back to home?
The morning from the surgery I spoke the anesthesiologist and Dr. Poe. Luckily my temperature was not too high (100.2F) and my nose was dry. Both doctors decided to continue the surgery. The surgery was under general anaesthesia.
After the surgery there was no pain to the ears or nose. Only a sorrow throat from the breathing tube. Everything went very well. After the surgery, when I was awoke again, Dr. Poe was also there to see me. He is really very caring.
After the night in the MEEI my temperature was normal and I was discharged from the hospital. The same evening I went back for my last day (and night) in the hotel I developed a terrible cold and had to sneeze a lot. Sneezing is dangerous after an operation like I had and I had to be careful not to sneeze with my mouth closed (not to build the pressure). Blowing the nose is also prohibited. This evening I was again very afraid to miss my flight back because I started to feel less and less healthy. Finally I was able to sleep a little bit and the next day I had to drag myself to the airport, not to miss my flight.
For the final result of the surgery I have to wait some time (at least a month) Then my local ENT doctor can remove the vent. tubes. I hope they are the last I’ll ever have, because the vent. tubes have damaged my eardrums in the past. After my eardrums are closed, I have to experience the result of the calcium injections. To be continued...
------------------------------------------------------
Remmy
04-04-2007, 04:58 PM
Hi, dear PET friends.
A question for you: do you have tinnitus (high pitch sound) on the side where you have PET?
Did anybody ever explain you why PET may lead to tinnitus?
Any idea about that? I was thinking that finding out the reason may help us to reduce tinnitus.
It is true that ENT's generally cannot help you with tinnitus; but it is also true that ENT's give up on you when you have PET or, better saying, when they do not understand you have PET and they cannot diagnose anything else. So, maybe that PET related tinnitus can be controlled, but nobody does anything for you just because they have not understood you have PET.
I hope I made me clear...... sigh!!!
Thanks.
Remmy.
A question for you: do you have tinnitus (high pitch sound) on the side where you have PET?
Did anybody ever explain you why PET may lead to tinnitus?
Any idea about that? I was thinking that finding out the reason may help us to reduce tinnitus.
It is true that ENT's generally cannot help you with tinnitus; but it is also true that ENT's give up on you when you have PET or, better saying, when they do not understand you have PET and they cannot diagnose anything else. So, maybe that PET related tinnitus can be controlled, but nobody does anything for you just because they have not understood you have PET.
I hope I made me clear...... sigh!!!
Thanks.
Remmy.
Addio
04-04-2007, 07:24 PM
Hi Remmy,
I can only talk for myself... I have Tinnitus too. Only in my right ear. It was caused by a hard sound. Before the Tinnitus developed I already had many years PET at both sides. In my case the Tinnitus is not PET related and Tinnitus can be caused by all kind of events. Ask your ENT doctor. Yes, maybe Tinnitus can also be a symptom of PET and it is not well known. And yes, not many doctors understand PET.
That's why we patients need to help them and inform them. We use the worlds largest library ;) The doctors only need a little push in the right direction ;) We can make them understand. At least try to make them understand.
I can only talk for myself... I have Tinnitus too. Only in my right ear. It was caused by a hard sound. Before the Tinnitus developed I already had many years PET at both sides. In my case the Tinnitus is not PET related and Tinnitus can be caused by all kind of events. Ask your ENT doctor. Yes, maybe Tinnitus can also be a symptom of PET and it is not well known. And yes, not many doctors understand PET.
That's why we patients need to help them and inform them. We use the worlds largest library ;) The doctors only need a little push in the right direction ;) We can make them understand. At least try to make them understand.
fluffyshouse
04-05-2007, 12:26 AM
Dear Remmy,
I'm so glad you do not have autophony. Do your ears have a stuffed up feeling or a feeling of them needing to pop like you are in an airplane? Mine do, but not as bad as they did before my surgeries with Dr. Poe.
Your case sounds like mine did before I got the autophony - popping every once in a while and a couple of times a slight episode of autophony. My Eustachian tubes quickly closed and never opened again until I got the ventilation tubes, which changed everything.
You asked what I would do in your case. My opinion, considering everything I have gone through, would be to not do anything at this time. Maybe time will heal what is happening in your ears. Dr. Poe says that sometimes the PET will heal on its own. Since you don't have autophony, don't touch what isn't broken yet.
If I hadn't had the vent tubes placed in my eardrums for earaches, I might not have autophony. After a really bad cold, my ears felt stuffed and that is when they started buzzing (tinnitus), but I didn't have autophony.
My 31 year old daughter has the same kind of popping that you do along with hearing sensitivity, but just in that ear. If she were to ask me what she would do, I would tell her the same thing I am telling you - do nothing at this point. But like you have said in the past, we are not doctors. Oh, I would tell my daughter not to lose any weight. She is as thin as a stick.
Dr. Poe just tries to get rid of the autophony through his procedures and I'm sure that is what Dr. Shea does, too.
I will tell you some advice that Dr. Poe told to me for everyone to follow especially those with PET. And in your case, with you being borderline, I would do what he says.
He says not to blow your nose hard, just a gentle blow.
Don't sniff too hard.
And never stiffle a sneeze. You just have to let it rip.
Doing those things are really bad on ears.
Do what you can to avoid a cold. Dr. Poe says that at the first sign of a cold do the following to stop it or lessen the severity:
Hot liquids of 140 degrees
High doses of vitamin C
Zicam
Zicam is offered at grocery store pharmacy areas here in the USA. It comes two ways - nose gel or a mouth spray. There has been reports of people losing their sense of smell after using Zicam in the nose, so I would advise to use the mouth spray. It's very simple and doesn't taste bad. Maybe if you can't find it in your country, you can order it off the internet.
Last June, I was going to Boston for my first surgery, but going there from London. I had a bad sore throat at the time and called Dr. Poe when I got to Boston three days before my long awaited surgery. He advise me what I just told you about warding off a cold. By the surgery day, my sore throat was totally gone with no more symptoms.
About what Nik told us about what they are doing in Japan, you called it ligation. They do that here in the USA, too. I live in a city with a prominent medical school. I have been to the top ENT professor at that school regarding my PET. He is the one who recommended me to Dr. Poe.
Ligation is what they do at the medical school here to fix untreatable PET. Only here they call it "obliteration". That is what Dr. Poe calls it, too. Look that up on the internet. When that option was presented to me by the doctor at the medical school, I knew it was not something for me. I don't have it bad enough in both ears to go that far. Obliteration is very drastic. It's not reversible and you have to have vent tubes your whole life. You can never wash your hair the same way, nor ever go swimming, etc.
My regular ENT said that if a doctor told me I should have that, I should run the other way. But people who have it sooo bad, it's good there is an option.
There is an ENT in California who I talked to before going to Dr. Poe. He tries to fix PET with gelfoam. It is inserted like Dr. Poe's method, but it only lasts between 2 to 3 months before it dissolves. I don't know what they do at the Ear Clinic in Los Angeles, California. I should call.
I still think that Dr. Poe or Dr. Shea are the ones who fix PET in a more natural way, to have the Eustachian tube function normally.
I'm still waiting for replies from both Dr. Poe and Dr. Shea before I decide to postpone my surgery with Dr. Poe in June. Remmy, are you the one who said you have a friend who is having surgery by Dr. Shea soon? I will be waiting to see how that goes.
Have you talked to Dr. Poe or Shea about what you should do when you don't have autophony?
Cathy
I'm so glad you do not have autophony. Do your ears have a stuffed up feeling or a feeling of them needing to pop like you are in an airplane? Mine do, but not as bad as they did before my surgeries with Dr. Poe.
Your case sounds like mine did before I got the autophony - popping every once in a while and a couple of times a slight episode of autophony. My Eustachian tubes quickly closed and never opened again until I got the ventilation tubes, which changed everything.
You asked what I would do in your case. My opinion, considering everything I have gone through, would be to not do anything at this time. Maybe time will heal what is happening in your ears. Dr. Poe says that sometimes the PET will heal on its own. Since you don't have autophony, don't touch what isn't broken yet.
If I hadn't had the vent tubes placed in my eardrums for earaches, I might not have autophony. After a really bad cold, my ears felt stuffed and that is when they started buzzing (tinnitus), but I didn't have autophony.
My 31 year old daughter has the same kind of popping that you do along with hearing sensitivity, but just in that ear. If she were to ask me what she would do, I would tell her the same thing I am telling you - do nothing at this point. But like you have said in the past, we are not doctors. Oh, I would tell my daughter not to lose any weight. She is as thin as a stick.
Dr. Poe just tries to get rid of the autophony through his procedures and I'm sure that is what Dr. Shea does, too.
I will tell you some advice that Dr. Poe told to me for everyone to follow especially those with PET. And in your case, with you being borderline, I would do what he says.
He says not to blow your nose hard, just a gentle blow.
Don't sniff too hard.
And never stiffle a sneeze. You just have to let it rip.
Doing those things are really bad on ears.
Do what you can to avoid a cold. Dr. Poe says that at the first sign of a cold do the following to stop it or lessen the severity:
Hot liquids of 140 degrees
High doses of vitamin C
Zicam
Zicam is offered at grocery store pharmacy areas here in the USA. It comes two ways - nose gel or a mouth spray. There has been reports of people losing their sense of smell after using Zicam in the nose, so I would advise to use the mouth spray. It's very simple and doesn't taste bad. Maybe if you can't find it in your country, you can order it off the internet.
Last June, I was going to Boston for my first surgery, but going there from London. I had a bad sore throat at the time and called Dr. Poe when I got to Boston three days before my long awaited surgery. He advise me what I just told you about warding off a cold. By the surgery day, my sore throat was totally gone with no more symptoms.
About what Nik told us about what they are doing in Japan, you called it ligation. They do that here in the USA, too. I live in a city with a prominent medical school. I have been to the top ENT professor at that school regarding my PET. He is the one who recommended me to Dr. Poe.
Ligation is what they do at the medical school here to fix untreatable PET. Only here they call it "obliteration". That is what Dr. Poe calls it, too. Look that up on the internet. When that option was presented to me by the doctor at the medical school, I knew it was not something for me. I don't have it bad enough in both ears to go that far. Obliteration is very drastic. It's not reversible and you have to have vent tubes your whole life. You can never wash your hair the same way, nor ever go swimming, etc.
My regular ENT said that if a doctor told me I should have that, I should run the other way. But people who have it sooo bad, it's good there is an option.
There is an ENT in California who I talked to before going to Dr. Poe. He tries to fix PET with gelfoam. It is inserted like Dr. Poe's method, but it only lasts between 2 to 3 months before it dissolves. I don't know what they do at the Ear Clinic in Los Angeles, California. I should call.
I still think that Dr. Poe or Dr. Shea are the ones who fix PET in a more natural way, to have the Eustachian tube function normally.
I'm still waiting for replies from both Dr. Poe and Dr. Shea before I decide to postpone my surgery with Dr. Poe in June. Remmy, are you the one who said you have a friend who is having surgery by Dr. Shea soon? I will be waiting to see how that goes.
Have you talked to Dr. Poe or Shea about what you should do when you don't have autophony?
Cathy
Remmy
04-05-2007, 03:19 PM
Dear Cathy and all.
Your adivces are pretious and I thank you very much.
When my PET started, I had a feeling of aural fullness, but later it disappeared or, maybe, I got used to it.... it is difficult to figure out.
Usually I do not need to pop my ears, but I have a feeling that they are almost to do it by themselves. Better saying: did you remember, when you were PET free, the feeling that you had when you performed VALSAVA manouvre and your tubes were ALMOST to open? That's what I feel like my tubes once in while, even though I'm not performing VALSAVA.
I agree with you that I should not do anything, since my PET is very slight and I really hope it stays always like that.... or better, of course :-)
Sorry Cathy, I did not understand if your PET is accompanied by tinnitus (high pitch sound) or not.
So, your daughter as well has PET like symptoms..... I'm sorry. She should absolutely avoid losing weight and, better, she should recover some weight.
Being too thin is not a good thing. One should always have a certain amount of fat and muscle that he can safely lose in case he gets ill.
Thanks for your advices.
A PET friend of mine here in Italy, told me that when she has a PET "attack" she tries and provoke a sneeze that usually closes her open tube. Once, after I sneezed, I felt my tubes changed. They closed better for some reasons and for a couple of minute I could swallow without pops and clicks.... they were "normal" like they used to be in the past.... anyway, my right ear started having a second tinnitus (other the one that normally I have): I understood that my ET got blocked after the sneeze!!!!!!! I swallowed and tried VALSAVA two or three times.... finally clicks and pops were back and my second tinnitus disappeared.
I hate all these strange symptoms..... people do not believe in what you say and ENT's thinks your are crazy!!!! Only my wife trust what I say, even though if she cannot really understand. Anyway, she respect my feelings and what I say about the way my ears feel like.
The friend of mine that is going to Dr. Shea for surgery is Nik.
Obliteration is the ultimate solution..... anyway, I read that in some cases, an obliterated tube may lose sutures and open again. I do not know if such an ET can be obliterated again.
Anyway, I thought of another ultimate solution, that is to be taken in consideration only in severe and desperate untreatable PET cases: DEAFNESS, provoked by removing one or all of the small bone that transmits sounds from the drum to the cochlea.
In this case you would be deaf.... but here I have an idea. In Italy we have a worldwide famous surgeon named Vittorio Colletti, that performs a special surgery (HONESTLY I DO NOT KNOW IF HE PERFORMS THIS SURGERY ALSO FOR PET, LIKE I'M SAYING: IT IS AN INVENTION OF MINE!!!): a pick up is used to capture external sounds and a wire is used to stimulate a trasnceiver directly apllied onto the cochlea. As a result, you should be able to hear external sound thanks to the external pick up, while you should not hear body sounds (breathe, voice from inside and all that bothers us) since, even though this sounds reach the drum through the tube, the drum is disconnected from the cochlea (because you removed the small bones).
This surgery was invented by Dr. Colletti to give hearing back to those people affected by a disease of the small bones. I thought it could be used to help PET sufferers. Of course, the pick up is very small and the wire is "inside" you middle ear.. I do not know details. Notice that this not what they call cochlear implant....... a cochlear implant is an implant that is put in place of a cochlea. Dr. Coletti's surgery preserve the cochlea and, instead, stimulates is as in a normal ear. The only difference is that the sound impact on the cochlea not through the drum and the small bones, but through the pick up, the wire and the transceiver apllied onto the cochlea.
Nobody of us should ever think of deafness, that's for sure..... I only wanted to think of an ultimate and extreme possibility to get rid of PET symptoms.
It makes me feel better :-) Do you think I'm childish?
I'm happy to hear that PET has been less bothering recently.... if a scary tissue is growing, you may not need surgery. Let's cross our fingers.
Bye
Remmy.
Your adivces are pretious and I thank you very much.
When my PET started, I had a feeling of aural fullness, but later it disappeared or, maybe, I got used to it.... it is difficult to figure out.
Usually I do not need to pop my ears, but I have a feeling that they are almost to do it by themselves. Better saying: did you remember, when you were PET free, the feeling that you had when you performed VALSAVA manouvre and your tubes were ALMOST to open? That's what I feel like my tubes once in while, even though I'm not performing VALSAVA.
I agree with you that I should not do anything, since my PET is very slight and I really hope it stays always like that.... or better, of course :-)
Sorry Cathy, I did not understand if your PET is accompanied by tinnitus (high pitch sound) or not.
So, your daughter as well has PET like symptoms..... I'm sorry. She should absolutely avoid losing weight and, better, she should recover some weight.
Being too thin is not a good thing. One should always have a certain amount of fat and muscle that he can safely lose in case he gets ill.
Thanks for your advices.
A PET friend of mine here in Italy, told me that when she has a PET "attack" she tries and provoke a sneeze that usually closes her open tube. Once, after I sneezed, I felt my tubes changed. They closed better for some reasons and for a couple of minute I could swallow without pops and clicks.... they were "normal" like they used to be in the past.... anyway, my right ear started having a second tinnitus (other the one that normally I have): I understood that my ET got blocked after the sneeze!!!!!!! I swallowed and tried VALSAVA two or three times.... finally clicks and pops were back and my second tinnitus disappeared.
I hate all these strange symptoms..... people do not believe in what you say and ENT's thinks your are crazy!!!! Only my wife trust what I say, even though if she cannot really understand. Anyway, she respect my feelings and what I say about the way my ears feel like.
The friend of mine that is going to Dr. Shea for surgery is Nik.
Obliteration is the ultimate solution..... anyway, I read that in some cases, an obliterated tube may lose sutures and open again. I do not know if such an ET can be obliterated again.
Anyway, I thought of another ultimate solution, that is to be taken in consideration only in severe and desperate untreatable PET cases: DEAFNESS, provoked by removing one or all of the small bone that transmits sounds from the drum to the cochlea.
In this case you would be deaf.... but here I have an idea. In Italy we have a worldwide famous surgeon named Vittorio Colletti, that performs a special surgery (HONESTLY I DO NOT KNOW IF HE PERFORMS THIS SURGERY ALSO FOR PET, LIKE I'M SAYING: IT IS AN INVENTION OF MINE!!!): a pick up is used to capture external sounds and a wire is used to stimulate a trasnceiver directly apllied onto the cochlea. As a result, you should be able to hear external sound thanks to the external pick up, while you should not hear body sounds (breathe, voice from inside and all that bothers us) since, even though this sounds reach the drum through the tube, the drum is disconnected from the cochlea (because you removed the small bones).
This surgery was invented by Dr. Colletti to give hearing back to those people affected by a disease of the small bones. I thought it could be used to help PET sufferers. Of course, the pick up is very small and the wire is "inside" you middle ear.. I do not know details. Notice that this not what they call cochlear implant....... a cochlear implant is an implant that is put in place of a cochlea. Dr. Coletti's surgery preserve the cochlea and, instead, stimulates is as in a normal ear. The only difference is that the sound impact on the cochlea not through the drum and the small bones, but through the pick up, the wire and the transceiver apllied onto the cochlea.
Nobody of us should ever think of deafness, that's for sure..... I only wanted to think of an ultimate and extreme possibility to get rid of PET symptoms.
It makes me feel better :-) Do you think I'm childish?
I'm happy to hear that PET has been less bothering recently.... if a scary tissue is growing, you may not need surgery. Let's cross our fingers.
Bye
Remmy.
Addio
04-05-2007, 06:30 PM
Dear Remmy,
... obliteration is very drastic. It's not reversible and you have to have vent tubes your whole life. You can never wash your hair the same way, nor ever go swimming, etc. ...
Cathy
Hi Cathy,
I agree Ligation/obliteration is very drastic. However what you say about vent tubes I do not agree. I have vent tubes for more then 25 years (since when I was about 16 y/o). I never had any problems washing my hair. I was able to swim. No problem. Only when diving and swimming under water I had to be careful (only with earplugs that is allowed) The vent tubes have such tiny opening that you don't have to be afraid for water that much. I speak from more than 25 years of experience.
There is one more serious problem with the vent tubes. After a long time having vent tubes and many times have them replaced (because they grow out every time after some time) it's not good for the condition of the eardrum. The risk for scar tissue after a long time. That's the only reason I don't like them anymore. For the past 25 years the vent tubes gave me every time TOTAL relieve. Every time I have an opening in my eardrums (and the vent tubes to keep it open for a considerable period) I had no PET and no autophony!
Hypothetically, If I were older and I developed PET e.g. when I was 60 years old, I would choose for the vent tubes only. In my present condition I like to be independent from the vent tubes because of my damaged eardrums and that's why I had choosen for a reconstruction of my ET's by Dr. Poe.
In a few weeks I have my current vent tubes removed and then It's an exciting time for me. Because after my eardrums are closed I have to experience the results of the surgery. I keep you all informed!
Bye,
Addio
... obliteration is very drastic. It's not reversible and you have to have vent tubes your whole life. You can never wash your hair the same way, nor ever go swimming, etc. ...
Cathy
Hi Cathy,
I agree Ligation/obliteration is very drastic. However what you say about vent tubes I do not agree. I have vent tubes for more then 25 years (since when I was about 16 y/o). I never had any problems washing my hair. I was able to swim. No problem. Only when diving and swimming under water I had to be careful (only with earplugs that is allowed) The vent tubes have such tiny opening that you don't have to be afraid for water that much. I speak from more than 25 years of experience.
There is one more serious problem with the vent tubes. After a long time having vent tubes and many times have them replaced (because they grow out every time after some time) it's not good for the condition of the eardrum. The risk for scar tissue after a long time. That's the only reason I don't like them anymore. For the past 25 years the vent tubes gave me every time TOTAL relieve. Every time I have an opening in my eardrums (and the vent tubes to keep it open for a considerable period) I had no PET and no autophony!
Hypothetically, If I were older and I developed PET e.g. when I was 60 years old, I would choose for the vent tubes only. In my present condition I like to be independent from the vent tubes because of my damaged eardrums and that's why I had choosen for a reconstruction of my ET's by Dr. Poe.
In a few weeks I have my current vent tubes removed and then It's an exciting time for me. Because after my eardrums are closed I have to experience the results of the surgery. I keep you all informed!
Bye,
Addio
Addio
04-05-2007, 06:53 PM
Hi Remmy,
My right ear is missing all the bones that normally transmit the sounds. I am NOT totally deaf in that ear. A considerable bit of sound is also transmitted by the bones around the middle ear. That's why my hearing aid is functioning so well in spite of the lack of hearing bones.
My audicien told me the lack of hearing bones cost only 30 dB. That's not a dramatic loss. However, I had a cholesteatoma and the cholesteatoma damaged all my bones, exposed and cleft my facial nerve and created a hole in the mastoid. Besides that, my right eardrum is heavily damaged (scar tissue), became more stiff and that's the reason I have all together 67 dB loss. In spite I miss my bones I can hear almost normal with my hearing aid :)
Bye,
Addio
My right ear is missing all the bones that normally transmit the sounds. I am NOT totally deaf in that ear. A considerable bit of sound is also transmitted by the bones around the middle ear. That's why my hearing aid is functioning so well in spite of the lack of hearing bones.
My audicien told me the lack of hearing bones cost only 30 dB. That's not a dramatic loss. However, I had a cholesteatoma and the cholesteatoma damaged all my bones, exposed and cleft my facial nerve and created a hole in the mastoid. Besides that, my right eardrum is heavily damaged (scar tissue), became more stiff and that's the reason I have all together 67 dB loss. In spite I miss my bones I can hear almost normal with my hearing aid :)
Bye,
Addio
Remmy
04-06-2007, 04:20 AM
Hi Addio.
Very interesting what you said about the missing of ear bones.
Let me understand one thing: in the ear where you have ear bones missing, did you notice any difference in autophony? Is it reduced by the missing of the bones?
Thanks.
Bye
Remmy.
Very interesting what you said about the missing of ear bones.
Let me understand one thing: in the ear where you have ear bones missing, did you notice any difference in autophony? Is it reduced by the missing of the bones?
Thanks.
Bye
Remmy.
Remmy
04-06-2007, 04:44 AM
Hi Cathy,
I agree Ligation/obliteration is very drastic. However what you say about vent tubes I do not agree. I have vent tubes for more then 25 years (since when I was about 16 y/o). I never had any problems washing my hair. I was able to swim. No problem. Only when diving and swimming under water I had to be careful (only with earplugs that is allowed) The vent tubes have such tiny opening that you don't have to be afraid for water that much. I speak from more than 25 years of experience.
There is one more serious problem with the vent tubes. After a long time having vent tubes and many times have them replaced (because they grow out every time after some time) it's not good for the condition of the eardrum. The risk for scar tissue after a long time. That's the only reason I don't like them anymore. For the past 25 years the vent tubes gave me every time TOTAL relieve. Every time I have an opening in my eardrums (and the vent tubes to keep it open for a considerable period) I had no PET and no autophony!
Hypothetically, If I were older and I developed PET e.g. when I was 60 years old, I would choose for the vent tubes only. In my present condition I like to be independent from the vent tubes because of my damaged eardrums and that's why I had choosen for a reconstruction of my ET's by Dr. Poe.
In a few weeks I have my current vent tubes removed and then It's an exciting time for me. Because after my eardrums are closed I have to experience the results of the surgery. I keep you all informed!
Bye,
Addio
Hi Addio.
That's really a good thing that vent tubes give you relief from PET.
As far as I know, it is not like that for everybody. Do you confirm?
You say that, right now, you may be not experiencing PET symptoms because you still have vent tubes.
I'm wondering if you are already experiencing some improvements that are not due to vent tubes. Are you?
Take care.
Bye, Remmy.
I agree Ligation/obliteration is very drastic. However what you say about vent tubes I do not agree. I have vent tubes for more then 25 years (since when I was about 16 y/o). I never had any problems washing my hair. I was able to swim. No problem. Only when diving and swimming under water I had to be careful (only with earplugs that is allowed) The vent tubes have such tiny opening that you don't have to be afraid for water that much. I speak from more than 25 years of experience.
There is one more serious problem with the vent tubes. After a long time having vent tubes and many times have them replaced (because they grow out every time after some time) it's not good for the condition of the eardrum. The risk for scar tissue after a long time. That's the only reason I don't like them anymore. For the past 25 years the vent tubes gave me every time TOTAL relieve. Every time I have an opening in my eardrums (and the vent tubes to keep it open for a considerable period) I had no PET and no autophony!
Hypothetically, If I were older and I developed PET e.g. when I was 60 years old, I would choose for the vent tubes only. In my present condition I like to be independent from the vent tubes because of my damaged eardrums and that's why I had choosen for a reconstruction of my ET's by Dr. Poe.
In a few weeks I have my current vent tubes removed and then It's an exciting time for me. Because after my eardrums are closed I have to experience the results of the surgery. I keep you all informed!
Bye,
Addio
Hi Addio.
That's really a good thing that vent tubes give you relief from PET.
As far as I know, it is not like that for everybody. Do you confirm?
You say that, right now, you may be not experiencing PET symptoms because you still have vent tubes.
I'm wondering if you are already experiencing some improvements that are not due to vent tubes. Are you?
Take care.
Bye, Remmy.
Addio
04-06-2007, 08:51 AM
Remmy,
Yes that's true I am fortunate the vent tubes gave me relieve. Not only for me. I know a dutch girl who has the same benefits like I have. Unfortunately it is not the case for everyone. But, if you never tried, you never know.
There is however also a downside at the vent tubes as I told in my former message. Damaging the eardrums after long time use.
No, I cannot tell if there is any improvement right now. Because of the presents of the temporary vent tubes I have 100% relieve of PET and as long as they are there and there is an opening in my eardrums, I cannot say the surgery was a succes. After the vent tubes are removed, my eardrums need some time to heal and close by themselves.
Then, after I am sure my eardrums are closed. I can tell you all if my surgery was a succes, yes/no... I will have a tympanogram made by my local ENT doctor to see if the eardrums are 100% closed and pressure can be build up from the outside and inside. He can also look inside my nose then to see how my ET is functioning after I swallow or yawn.
Well, I think at the time my eardrums are closed, I can experience myself if the ET's are still open. Otherwise I still need a confirmation my ET's are not obstructed. In that case I need vent tubes again to be placed at my next surgery by my local ENT doctor. That surgery will be in a few months from now.Then my local ENT doctor will give me artificial hearing bones and check my middle ear for the possible presence of a cholesteatoma.
Yes that's true I am fortunate the vent tubes gave me relieve. Not only for me. I know a dutch girl who has the same benefits like I have. Unfortunately it is not the case for everyone. But, if you never tried, you never know.
There is however also a downside at the vent tubes as I told in my former message. Damaging the eardrums after long time use.
No, I cannot tell if there is any improvement right now. Because of the presents of the temporary vent tubes I have 100% relieve of PET and as long as they are there and there is an opening in my eardrums, I cannot say the surgery was a succes. After the vent tubes are removed, my eardrums need some time to heal and close by themselves.
Then, after I am sure my eardrums are closed. I can tell you all if my surgery was a succes, yes/no... I will have a tympanogram made by my local ENT doctor to see if the eardrums are 100% closed and pressure can be build up from the outside and inside. He can also look inside my nose then to see how my ET is functioning after I swallow or yawn.
Well, I think at the time my eardrums are closed, I can experience myself if the ET's are still open. Otherwise I still need a confirmation my ET's are not obstructed. In that case I need vent tubes again to be placed at my next surgery by my local ENT doctor. That surgery will be in a few months from now.Then my local ENT doctor will give me artificial hearing bones and check my middle ear for the possible presence of a cholesteatoma.
Addio
04-06-2007, 09:07 AM
Hi Addio.
Very interesting what you said about the missing of ear bones.
Let me understand one thing: in the ear where you have ear bones missing, did you notice any difference in autophony? Is it reduced by the missing of the bones?
Thanks.
Bye
Remmy.
Very, very good question Remmy! ;)
Yes, indeed the autophony at that side (NOT the breathing) but the amplification of my own voice and surrounding sounds seems to be reduced.
Of course before, when these bones were still pressent, after a swallow or yawn, my eardrum was pushed outward by the pressure I created myself in the middle ear. Then the bones (all three together) are in a more stretched position and every little bit of sound was amplified (also the sounds from outside) and deformed this is because of the lever construction of the three bones.
If there are no bones this disadvantage dissapears. However, I still had problems with my own breathing, that I can feel stroking the eardrum and the cochlea and it's just as annoying as the amplified and deformed sounds. But otherwise I would have had both problems.
Very interesting what you said about the missing of ear bones.
Let me understand one thing: in the ear where you have ear bones missing, did you notice any difference in autophony? Is it reduced by the missing of the bones?
Thanks.
Bye
Remmy.
Very, very good question Remmy! ;)
Yes, indeed the autophony at that side (NOT the breathing) but the amplification of my own voice and surrounding sounds seems to be reduced.
Of course before, when these bones were still pressent, after a swallow or yawn, my eardrum was pushed outward by the pressure I created myself in the middle ear. Then the bones (all three together) are in a more stretched position and every little bit of sound was amplified (also the sounds from outside) and deformed this is because of the lever construction of the three bones.
If there are no bones this disadvantage dissapears. However, I still had problems with my own breathing, that I can feel stroking the eardrum and the cochlea and it's just as annoying as the amplified and deformed sounds. But otherwise I would have had both problems.
fluffyshouse
04-06-2007, 09:09 PM
Hi Remmy and other PET friends,
Remmy, you asked me if my PET is accompanied by tinnitus, and yes, it is. It started with the bad head cold that got everything started. I already had it when the autophony started. The tinnitus is more of a roaring sound, like a I'm holding a seashell to my ears. But sometimes it is a high screeching sound, but that doesn't last very long.
Thank you for the advice about my daughter and that she should avoid losing any weight. I have been worried about her weight since she told me about her ear popping and crackling. But she is very athletic so burns any fat she has by biking, swimming and running. She is all muscle.
Also, she is newly pregnant, so maybe will gain some weight with that. I know that pregnancy can bring PET on, and then it can go away with delivery. I am not saying anything to her about a possibility of getting PET while pregnant. I am just hoping she doesn't get it. I don't want to scare her.
About her getting tested for RA, I'm don't know how to mention it without scaring her. She is already scared with being pregnant.
I get tested for RA every once in a while, but so far, it's been negative.
I am not finished with trying to get this ear monster fixed, but I am wondering if all the PET symptoms go away completely, ever. Why do we have tinnitus? If we get the PET fixed, does the tinnitus go away? I am thinking not because when we lie down, our Eustachian tubes shut, and the PET symptoms goes away. If the tinnitus is caused by the PET, wouldn't that go away, too, when we lie down?
Anyway, I run a fan at night while I sleep. That does a good job at masking the sounds in my ears.
I'm still waiting to hear from Dr. Poe and from Dr. Shea. They must be busy this week. My June surgery date is coming up fast with Dr. Poe.
Dr. Poe never mentioned the exercises you asked me about. I have read about them. I have jaw trouble, too, so I would be afraid the exercises would kick the pain into motion that I suffer with the bad jaw. Dr. Poe thinks my bad jaw is from my PET and that they are feeding each other. The pain in my jaw has settled down, along with my PET, though, at least for now. Strange.
Good-bye for now,
Cathy
Remmy, you asked me if my PET is accompanied by tinnitus, and yes, it is. It started with the bad head cold that got everything started. I already had it when the autophony started. The tinnitus is more of a roaring sound, like a I'm holding a seashell to my ears. But sometimes it is a high screeching sound, but that doesn't last very long.
Thank you for the advice about my daughter and that she should avoid losing any weight. I have been worried about her weight since she told me about her ear popping and crackling. But she is very athletic so burns any fat she has by biking, swimming and running. She is all muscle.
Also, she is newly pregnant, so maybe will gain some weight with that. I know that pregnancy can bring PET on, and then it can go away with delivery. I am not saying anything to her about a possibility of getting PET while pregnant. I am just hoping she doesn't get it. I don't want to scare her.
About her getting tested for RA, I'm don't know how to mention it without scaring her. She is already scared with being pregnant.
I get tested for RA every once in a while, but so far, it's been negative.
I am not finished with trying to get this ear monster fixed, but I am wondering if all the PET symptoms go away completely, ever. Why do we have tinnitus? If we get the PET fixed, does the tinnitus go away? I am thinking not because when we lie down, our Eustachian tubes shut, and the PET symptoms goes away. If the tinnitus is caused by the PET, wouldn't that go away, too, when we lie down?
Anyway, I run a fan at night while I sleep. That does a good job at masking the sounds in my ears.
I'm still waiting to hear from Dr. Poe and from Dr. Shea. They must be busy this week. My June surgery date is coming up fast with Dr. Poe.
Dr. Poe never mentioned the exercises you asked me about. I have read about them. I have jaw trouble, too, so I would be afraid the exercises would kick the pain into motion that I suffer with the bad jaw. Dr. Poe thinks my bad jaw is from my PET and that they are feeding each other. The pain in my jaw has settled down, along with my PET, though, at least for now. Strange.
Good-bye for now,
Cathy
fluffyshouse
04-08-2007, 06:27 PM
Hello,
You asked me to write when Dr. Poe called me. He called me yesterday. He's such a caring and thoughtful doctor.
He wants to add another silicon plug that is bigger than the one that is already there to my left ear, the one that has autophony off and on all day.
And the right ear, the one that when I get autophony, I have to stop everything and lie down, he wants to check with Dr. Shea about the silicon tubing. He said that because I had the calcium paste injection, the silicon tubing might be a good idea to have until the scar tissue generated by the calcium injection fills in.
Dr. Poe said there hasn't been anything published about the silicon tubing done by Shea that he has seen, so wants to know more about it. He is so kind to say that he is going to call them tomorrow, Monday for more information.
He wants what is best for me. He's just the best - so caring.
He will be traveling so won't get back to me for maybe a couple of weeks to tell me what he found out from the Shea Clinic.
Nik, are you still going soon to Dr. Shea? I am so eager to hear from you when you return home.
Your PET friend,
Cathy
You asked me to write when Dr. Poe called me. He called me yesterday. He's such a caring and thoughtful doctor.
He wants to add another silicon plug that is bigger than the one that is already there to my left ear, the one that has autophony off and on all day.
And the right ear, the one that when I get autophony, I have to stop everything and lie down, he wants to check with Dr. Shea about the silicon tubing. He said that because I had the calcium paste injection, the silicon tubing might be a good idea to have until the scar tissue generated by the calcium injection fills in.
Dr. Poe said there hasn't been anything published about the silicon tubing done by Shea that he has seen, so wants to know more about it. He is so kind to say that he is going to call them tomorrow, Monday for more information.
He wants what is best for me. He's just the best - so caring.
He will be traveling so won't get back to me for maybe a couple of weeks to tell me what he found out from the Shea Clinic.
Nik, are you still going soon to Dr. Shea? I am so eager to hear from you when you return home.
Your PET friend,
Cathy
Remmy
04-11-2007, 04:15 AM
Hi all.
I'll be back as soon as possible.
I only wanted to let you know that I'm here.
Bye
Remmy.
I'll be back as soon as possible.
I only wanted to let you know that I'm here.
Bye
Remmy.
fluffyshouse
04-11-2007, 02:34 PM
Hello,
I also enjoy reading long messages. We just have a lot to say. It helps us deal with our ear problems.
When I said that Dr. Poe recommended Dr. Shea's silicon tubing for one of ears, he didn't actually recommend it, but suggested that as a possibility. He asked me what I wanted to do, but I told him I trusted him to make the best decision for me. That is when he said he would call the Shea Clinic to talk to them about the tubing to get more information about it. I wonder why Dr. Poe hasn't used it before. I have been asking myself questions about that since he and I talked. There has to be more that we don't know. Is it long term? I have been hearing more and more about the inner ear, and how it works, trying to educate myself before I agree to anything. My surgery date is coming fast.
I have learned that there are little hairs in the Eustachian tube that are always moving, and that the body sometimes gets rid of foreign objects. What holds the tubing in place, and keeps the hairs from trying to push it out through the nose or eardrum? That is a question I have to Dr. Shea unless you or someone else knows. I haven't heard from the Shea Clinic yet. Maybe it's because I asked too many questions and they haven't had time yet.
I agree with you that most ENT doctors tell us that it couldn't be as bad as we was saying it is. The biggest blow to me was from the top ENT professor at the medical school here where I live, telling me to change my attitude and to live with it. That is when I decided to go to Dr. Poe. He's the best.
I know that if you call Dr. Poe, he will call you back. It wouldn't hurt for you to talk to him by phone. He's the nicest and will put you at ease right away.
I know that you coming here will be a big expense for travel and for surgery. I'm sorry for that and wish I could help everyone, but I live in the west and Dr. Poe is in the east.
You asked me about the autophony in each of my ears. My left ear gets autophony the minute I step out of bed, is really bad for a couple of hours, and then the E tube must partially close because the breathing sounds I hear for the rest of the afternoon aren't as loud as first thing in the morning, but are still constant. That ear has different levels of autophony, so I know it has to be the E tube partially being closed. I can lie down and have the autophony at all stages go away, but it's not as critical as the right ear.
The right ear is the one that I have to get my head down right away. The E tube is either closed all the way or open at full throttle. At full throttle, I cannot talk without a big amount of distress because I can't tell if I am talking so another person can understand what I am saying. Thank goodness, it only gets autophony maybe three to four times a week and not every single day like my other ear.
You said you were going to see a doctor. What did he say? Did he have any info about the Shea method? It just seems to be too simple, and the fact that there is nothing there to hold it in place, worries me. I want to know more. I hope we hear from Nik right away, and that he will give us progress reports and more info.
Remmy and Addio, I'm so glad you are still out there. Write when you can and tell us how you are. Addio, do you still have the vent tubes in place? And still no autophony? I hope.
Your PET friend who cares about all of you,
Cathy
I also enjoy reading long messages. We just have a lot to say. It helps us deal with our ear problems.
When I said that Dr. Poe recommended Dr. Shea's silicon tubing for one of ears, he didn't actually recommend it, but suggested that as a possibility. He asked me what I wanted to do, but I told him I trusted him to make the best decision for me. That is when he said he would call the Shea Clinic to talk to them about the tubing to get more information about it. I wonder why Dr. Poe hasn't used it before. I have been asking myself questions about that since he and I talked. There has to be more that we don't know. Is it long term? I have been hearing more and more about the inner ear, and how it works, trying to educate myself before I agree to anything. My surgery date is coming fast.
I have learned that there are little hairs in the Eustachian tube that are always moving, and that the body sometimes gets rid of foreign objects. What holds the tubing in place, and keeps the hairs from trying to push it out through the nose or eardrum? That is a question I have to Dr. Shea unless you or someone else knows. I haven't heard from the Shea Clinic yet. Maybe it's because I asked too many questions and they haven't had time yet.
I agree with you that most ENT doctors tell us that it couldn't be as bad as we was saying it is. The biggest blow to me was from the top ENT professor at the medical school here where I live, telling me to change my attitude and to live with it. That is when I decided to go to Dr. Poe. He's the best.
I know that if you call Dr. Poe, he will call you back. It wouldn't hurt for you to talk to him by phone. He's the nicest and will put you at ease right away.
I know that you coming here will be a big expense for travel and for surgery. I'm sorry for that and wish I could help everyone, but I live in the west and Dr. Poe is in the east.
You asked me about the autophony in each of my ears. My left ear gets autophony the minute I step out of bed, is really bad for a couple of hours, and then the E tube must partially close because the breathing sounds I hear for the rest of the afternoon aren't as loud as first thing in the morning, but are still constant. That ear has different levels of autophony, so I know it has to be the E tube partially being closed. I can lie down and have the autophony at all stages go away, but it's not as critical as the right ear.
The right ear is the one that I have to get my head down right away. The E tube is either closed all the way or open at full throttle. At full throttle, I cannot talk without a big amount of distress because I can't tell if I am talking so another person can understand what I am saying. Thank goodness, it only gets autophony maybe three to four times a week and not every single day like my other ear.
You said you were going to see a doctor. What did he say? Did he have any info about the Shea method? It just seems to be too simple, and the fact that there is nothing there to hold it in place, worries me. I want to know more. I hope we hear from Nik right away, and that he will give us progress reports and more info.
Remmy and Addio, I'm so glad you are still out there. Write when you can and tell us how you are. Addio, do you still have the vent tubes in place? And still no autophony? I hope.
Your PET friend who cares about all of you,
Cathy
Addio
04-11-2007, 04:33 PM
Hi Cathy,
Thanks, I am fine. The vent tubes are still in place and I still have no autophony. This evening I have been running. I like athletics and running and that was unbearable when I was still suffering from PET. Now I can breathe freely. It's a wonderful feeling.
In two weeks from now my vent tubes will be removed and then I still need some time. Then I let you know if the calcium injections work for me. I hope so...
Thanks, I am fine. The vent tubes are still in place and I still have no autophony. This evening I have been running. I like athletics and running and that was unbearable when I was still suffering from PET. Now I can breathe freely. It's a wonderful feeling.
In two weeks from now my vent tubes will be removed and then I still need some time. Then I let you know if the calcium injections work for me. I hope so...
Remmy
04-11-2007, 05:33 PM
Hi all PET friends.
I've been far from the thread for while, not only because of Easter and related family affairs, but also because I've tried to forget PET for a while... just for a while, since you can never forget about it... or, better saying, you must never forget, mainly because you have to stay tuned and try to find the best way to cope with it. And I think that sharing info with you all is the best thing to do.
I know I'm lucky, because I do not suffer from autophony.... at least for the time being. But I feel tired nevertheless, just because I feel like I had a sword hanging upon my head, ready to hurt me.
Last time I went to Dr. Kujawski in Geneve, he told me that inserting something into the tube is not a good way to treat PET, since the tube gets more and more inflammed and on turn the inflammation may worsen the patency. I cannot tell if it is true or not... honestly, I cannot tell if that is what Kujawski told me exactly.
Addio, you told that, before the injection, running and athletics were unbearable... Was that true also with vent tubes? If so, we may say that now your tubes are closed or, at least, more closed than in the past. What do you think?
Thank you all for being out there. Let's always keep in touch.
I saw some long posts.... I like long posts very much. I'm gonna read them again, to be sure I did not miss anything.
Bye Remmy.
I've been far from the thread for while, not only because of Easter and related family affairs, but also because I've tried to forget PET for a while... just for a while, since you can never forget about it... or, better saying, you must never forget, mainly because you have to stay tuned and try to find the best way to cope with it. And I think that sharing info with you all is the best thing to do.
I know I'm lucky, because I do not suffer from autophony.... at least for the time being. But I feel tired nevertheless, just because I feel like I had a sword hanging upon my head, ready to hurt me.
Last time I went to Dr. Kujawski in Geneve, he told me that inserting something into the tube is not a good way to treat PET, since the tube gets more and more inflammed and on turn the inflammation may worsen the patency. I cannot tell if it is true or not... honestly, I cannot tell if that is what Kujawski told me exactly.
Addio, you told that, before the injection, running and athletics were unbearable... Was that true also with vent tubes? If so, we may say that now your tubes are closed or, at least, more closed than in the past. What do you think?
Thank you all for being out there. Let's always keep in touch.
I saw some long posts.... I like long posts very much. I'm gonna read them again, to be sure I did not miss anything.
Bye Remmy.
Addio
04-11-2007, 05:48 PM
Remmy,
In the past I was also helped by vent tubes to get rid of the PET symptoms (not from the PET) But that gave me total relieve, also when I ran. Until the moment the vent tubes grew out (because the body don't like strange materials the vent tubes are rejected after some time) Then, when the eardrums closed, I had the PET symptoms again and when I ran it was unbearable. That is because the adrenaline level in the body has increased then and that makes the ET shrink in a more open position (quote Dr. Poe)
When that occurred, I was not able to compensate the autophony. So, the autophony was present all the time! When I was not sporting I was able to sniff and make the autophony disappear for a little while.
In the past I was also helped by vent tubes to get rid of the PET symptoms (not from the PET) But that gave me total relieve, also when I ran. Until the moment the vent tubes grew out (because the body don't like strange materials the vent tubes are rejected after some time) Then, when the eardrums closed, I had the PET symptoms again and when I ran it was unbearable. That is because the adrenaline level in the body has increased then and that makes the ET shrink in a more open position (quote Dr. Poe)
When that occurred, I was not able to compensate the autophony. So, the autophony was present all the time! When I was not sporting I was able to sniff and make the autophony disappear for a little while.
fluffyshouse
04-14-2007, 12:38 PM
Happy spring, Remmy, Addio, and any others out there,
I received an email from Dr. Shea. It was very encouraging. He said in the ten years he has been doing the silicon tubing procedure for the PET, there has only been one man who the tubing slipped down the Eustachian tube and was lost. The man had no ill effects from it, and his PET did not return even when the tubing was lost.
Dr. Shea said that he has known of no cases where the ear drum did not reattached itself after being peeled back to have the silicon tubing replaced.
He answered my many questions very throughly, but those two things were my main concern.
I will wait for Dr. Poe to call in a week or so after he has returned back from traveling and after talking to Dr. Shea. Then I will make my decision as to what to do.
My neighbor is a doctor and has searched the medical journals and has found nothing written up regarding Dr. Shea's PET method. Dr. Poe said he couldn't find anything written either. I wonder why.
Dr. Shea also clearly cares about helping people. I really appreciated his email, which I know took a good amount of time to answer. I feel much more educated.
I can't wait to hear from Nik.
Cathy
I received an email from Dr. Shea. It was very encouraging. He said in the ten years he has been doing the silicon tubing procedure for the PET, there has only been one man who the tubing slipped down the Eustachian tube and was lost. The man had no ill effects from it, and his PET did not return even when the tubing was lost.
Dr. Shea said that he has known of no cases where the ear drum did not reattached itself after being peeled back to have the silicon tubing replaced.
He answered my many questions very throughly, but those two things were my main concern.
I will wait for Dr. Poe to call in a week or so after he has returned back from traveling and after talking to Dr. Shea. Then I will make my decision as to what to do.
My neighbor is a doctor and has searched the medical journals and has found nothing written up regarding Dr. Shea's PET method. Dr. Poe said he couldn't find anything written either. I wonder why.
Dr. Shea also clearly cares about helping people. I really appreciated his email, which I know took a good amount of time to answer. I feel much more educated.
I can't wait to hear from Nik.
Cathy
Remmy
04-16-2007, 05:30 AM
Hi all.
I've just a little question for you about something I'm scared about.
Next week, I'll have to undergo a colonscopy: I've delayed it for months, but now I've to do it.
What scares me, is that during the three days before, the procedure requires a special diet (no fruit, little or no bread, little or no pasta) and a strong purgative the day before. I'm afraid that a poor diet and the purge may trigger autophony.
What do you think about that? Have you ever undergone a colonscopy? Did it affect your PET?
Thanks.
Bye, Remmy.
I've just a little question for you about something I'm scared about.
Next week, I'll have to undergo a colonscopy: I've delayed it for months, but now I've to do it.
What scares me, is that during the three days before, the procedure requires a special diet (no fruit, little or no bread, little or no pasta) and a strong purgative the day before. I'm afraid that a poor diet and the purge may trigger autophony.
What do you think about that? Have you ever undergone a colonscopy? Did it affect your PET?
Thanks.
Bye, Remmy.
Addio
04-16-2007, 09:03 AM
Hi Remmy,
For what I know of Dr. Poe; weight loss is not of any influence and has no relation to PET. For a 3 day diet you don't have to be afraid.
For what I know of Dr. Poe; weight loss is not of any influence and has no relation to PET. For a 3 day diet you don't have to be afraid.
Remmy
04-16-2007, 04:20 PM
Hi Addio.
Thank you very much for your feedback.
I'll let you know how things go.
I hope that Nik stopped his PET.
Bye
Remmy
Thank you very much for your feedback.
I'll let you know how things go.
I hope that Nik stopped his PET.
Bye
Remmy
Addio
04-16-2007, 04:36 PM
Your welcome...
I hope so too for Nik. Nik has the surgery now at the Shea Clinic? I hope he will tell us his experiences soon.
Let's cross our fingers for Nik.
I hope so too for Nik. Nik has the surgery now at the Shea Clinic? I hope he will tell us his experiences soon.
Let's cross our fingers for Nik.
KSM79
04-20-2007, 10:31 AM
Yes..Even I am curious about how his surgery went. I might get mine done depending on how his surgery has shaped up. So Nik, if you can read this...we are all eagerly awaiting your reply.
Cheers!!
Cheers!!
Remmy
04-21-2007, 03:14 AM
Hi Nik......
where are you?
I'm really worried about you.
Bye
Remmy.
where are you?
I'm really worried about you.
Bye
Remmy.
Remmy
04-22-2007, 02:55 PM
Happy spring, Remmy, Addio, and any others out there,
I received an email from Dr. Shea. It was very encouraging. He said in the ten years he has been doing the silicon tubing procedure for the PET, there has only been one man who the tubing slipped down the Eustachian tube and was lost. The man had no ill effects from it, and his PET did not return even when the tubing was lost.
Dr. Shea said that he has known of no cases where the ear drum did not reattached itself after being peeled back to have the silicon tubing replaced.
He answered my many questions very throughly, but those two things were my main concern.
I will wait for Dr. Poe to call in a week or so after he has returned back from traveling and after talking to Dr. Shea. Then I will make my decision as to what to do.
My neighbor is a doctor and has searched the medical journals and has found nothing written up regarding Dr. Shea's PET method. Dr. Poe said he couldn't find anything written either. I wonder why.
Dr. Shea also clearly cares about helping people. I really appreciated his email, which I know took a good amount of time to answer. I feel much more educated.
I can't wait to hear from Nik.
Cathy
Hi Cathy.
I'v not been hearing from you for a long time, so I'm wondering if everything is OK with you and your PET.
Did you decide what to do? I know that you're waiting for an answer from Nik and based on his feedback you may decide one way or the other... I'm really worried about Nik, because he has not answered yet, and a little bit for you and Lotje as well because you both need - more than I do - an answer from him.
That's true: Dr. Shea is doctor that takes relly care of people; I wrote an e-mail to him and he told me that, in my case, since my PET symptoms are not that strong, there's is no need for me to undergo surgery.
I read that the procedure applied by Dr. Shea may be derived from a procedure by Bluestone (I'm not sure about the name).
Anyway, I found this link about a procedure that may be similar to Dr. Shea's method (it is an informational page):
http://www.ncbi.nlm.nih.gov/entrez/query.f...l=pubmed_docsum
Also, I found this page, where Bluestone method is mentioned:
http://www.emedicine.com/ent/topic208.htm
What about your daughter?
Is she fine? Is she well managing her weight to prevent PET from showing up?
Take care.
Bye
Remmy.
I received an email from Dr. Shea. It was very encouraging. He said in the ten years he has been doing the silicon tubing procedure for the PET, there has only been one man who the tubing slipped down the Eustachian tube and was lost. The man had no ill effects from it, and his PET did not return even when the tubing was lost.
Dr. Shea said that he has known of no cases where the ear drum did not reattached itself after being peeled back to have the silicon tubing replaced.
He answered my many questions very throughly, but those two things were my main concern.
I will wait for Dr. Poe to call in a week or so after he has returned back from traveling and after talking to Dr. Shea. Then I will make my decision as to what to do.
My neighbor is a doctor and has searched the medical journals and has found nothing written up regarding Dr. Shea's PET method. Dr. Poe said he couldn't find anything written either. I wonder why.
Dr. Shea also clearly cares about helping people. I really appreciated his email, which I know took a good amount of time to answer. I feel much more educated.
I can't wait to hear from Nik.
Cathy
Hi Cathy.
I'v not been hearing from you for a long time, so I'm wondering if everything is OK with you and your PET.
Did you decide what to do? I know that you're waiting for an answer from Nik and based on his feedback you may decide one way or the other... I'm really worried about Nik, because he has not answered yet, and a little bit for you and Lotje as well because you both need - more than I do - an answer from him.
That's true: Dr. Shea is doctor that takes relly care of people; I wrote an e-mail to him and he told me that, in my case, since my PET symptoms are not that strong, there's is no need for me to undergo surgery.
I read that the procedure applied by Dr. Shea may be derived from a procedure by Bluestone (I'm not sure about the name).
Anyway, I found this link about a procedure that may be similar to Dr. Shea's method (it is an informational page):
http://www.ncbi.nlm.nih.gov/entrez/query.f...l=pubmed_docsum
Also, I found this page, where Bluestone method is mentioned:
http://www.emedicine.com/ent/topic208.htm
What about your daughter?
Is she fine? Is she well managing her weight to prevent PET from showing up?
Take care.
Bye
Remmy.
fluffyshouse
04-22-2007, 03:38 PM
Hi Remmy,
You are so kind to inquire about me. I, too, have been waiting anxiously for Nik to write. You are right in saying that my decision might be decided by Nik's experience. I check these board at least twice a day for an answer from him. It's on my mind constantly.
I am also waiting to hear from Dr. Poe. He was going to call Dr. Shea about the silicon tubing procedure to learn more. But Dr. Poe warned me that he would be traveling so I knew he wouldn't get right back to me. While waiting for Dr. Poe to call and to hear from Nik, I am just sitting here.
I appreciate you sending me a link to look at. I will do that as soon as I write back to you. My ears rule my waking hours, unfortunately, I don't have the skill to know how to "just live with it and be happy."
I called the House Ear Institute in Los Angeles on Friday and was surprised to learn that they haven't done any Patulous ear procedures in a long time. And when they did, they used the catheder down the E tube with a ball of wax on the end to seal the E tube shut. Of course, there was a permanent vent tube in the eardrum after that. I was shocked that they hadn't done any of those procedures in a long time. They affliate with UCLA, the well known university down there. Maybe they refer everyone with Patulous to Dr. Poe or the Shea Clinic.
Or are there more people than we think that know how to deal with it and just be happy anyway? I wish I was one of them.
Remmy, thank you again for thinking of me. I will write just as soon as Dr. Poe calls. I am thinking I will be going to Boston in June, but am not sure yet.
Do you remember Teresa a few months back, who went to Dr. Poe for surgery? You wrote to her giving her good advice. As you recall, she was having problems with being over corrected. I haven't seen any posts from her as to how she is doing. Have you? Maybe she is posting on another site that I don't know about.
Cathy
You are so kind to inquire about me. I, too, have been waiting anxiously for Nik to write. You are right in saying that my decision might be decided by Nik's experience. I check these board at least twice a day for an answer from him. It's on my mind constantly.
I am also waiting to hear from Dr. Poe. He was going to call Dr. Shea about the silicon tubing procedure to learn more. But Dr. Poe warned me that he would be traveling so I knew he wouldn't get right back to me. While waiting for Dr. Poe to call and to hear from Nik, I am just sitting here.
I appreciate you sending me a link to look at. I will do that as soon as I write back to you. My ears rule my waking hours, unfortunately, I don't have the skill to know how to "just live with it and be happy."
I called the House Ear Institute in Los Angeles on Friday and was surprised to learn that they haven't done any Patulous ear procedures in a long time. And when they did, they used the catheder down the E tube with a ball of wax on the end to seal the E tube shut. Of course, there was a permanent vent tube in the eardrum after that. I was shocked that they hadn't done any of those procedures in a long time. They affliate with UCLA, the well known university down there. Maybe they refer everyone with Patulous to Dr. Poe or the Shea Clinic.
Or are there more people than we think that know how to deal with it and just be happy anyway? I wish I was one of them.
Remmy, thank you again for thinking of me. I will write just as soon as Dr. Poe calls. I am thinking I will be going to Boston in June, but am not sure yet.
Do you remember Teresa a few months back, who went to Dr. Poe for surgery? You wrote to her giving her good advice. As you recall, she was having problems with being over corrected. I haven't seen any posts from her as to how she is doing. Have you? Maybe she is posting on another site that I don't know about.
Cathy
fluffyshouse
04-22-2007, 04:01 PM
Hi again Remmy,
I realized I didn't answer your question about my daughter. I hope she is managing her weight. She still looks almost the same, but the signs of pregnancy are showing slightly. For the first time in many, many years, she has a huge appetite, which makes me happy. Before being pregnant, she only ate to live, which was very little, and now her body is telling her that she needs to eat more. She will always remain thin, but I hope not too thin.
You are so kind to ask about her. She hasn't mentioned any change with her ears, so I'm hoping they won't get worse.
I read both sites that you gave to me. I didn't understand the language in the first one, talking about the silicon plug. It's medical language so I don't know what they were referring to. Were they talking about how I had the surgery done, through the mouth, and not through the ear drum, or the other way around? From what I understood them to say was they went down through the eardrum to place the silicon plug.
And I have read the other one before when I was first trying to figure out what had happened to my ears. I thought it was interesting to read in that article that ventilation tubes in the ear drums can cause more discomfort to the patient. That is what happened to me, and I know what started the autophony after already having Patulous symptoms like you.
Dr. Shea told me that he puts vent tubes in all patients' ears for the first month after having the silicon tubing placed. That is one reason I am dragging my feet on deciding to go there. If he would not put the vent tubes in my ear drums, I would think more seriously about going there. Those vent tubes scare me, because of past experience. But I know my case is very rare.
Cathy
I realized I didn't answer your question about my daughter. I hope she is managing her weight. She still looks almost the same, but the signs of pregnancy are showing slightly. For the first time in many, many years, she has a huge appetite, which makes me happy. Before being pregnant, she only ate to live, which was very little, and now her body is telling her that she needs to eat more. She will always remain thin, but I hope not too thin.
You are so kind to ask about her. She hasn't mentioned any change with her ears, so I'm hoping they won't get worse.
I read both sites that you gave to me. I didn't understand the language in the first one, talking about the silicon plug. It's medical language so I don't know what they were referring to. Were they talking about how I had the surgery done, through the mouth, and not through the ear drum, or the other way around? From what I understood them to say was they went down through the eardrum to place the silicon plug.
And I have read the other one before when I was first trying to figure out what had happened to my ears. I thought it was interesting to read in that article that ventilation tubes in the ear drums can cause more discomfort to the patient. That is what happened to me, and I know what started the autophony after already having Patulous symptoms like you.
Dr. Shea told me that he puts vent tubes in all patients' ears for the first month after having the silicon tubing placed. That is one reason I am dragging my feet on deciding to go there. If he would not put the vent tubes in my ear drums, I would think more seriously about going there. Those vent tubes scare me, because of past experience. But I know my case is very rare.
Cathy
Remmy
04-23-2007, 05:05 PM
Hi Cathy.....
...yes Teresa...... she was telling us about her experience in another thread that I'm not able to find anymore.
Bye
Remmy.
...yes Teresa...... she was telling us about her experience in another thread that I'm not able to find anymore.
Bye
Remmy.
fluffyshouse
04-23-2007, 06:17 PM
I would sure like to know how she is doing.
Addio gets his vent tubes out soon, doesn't he? I sure hope everything holds for him.
And Nik, like you, I hope he's okay.
Cathy
Addio gets his vent tubes out soon, doesn't he? I sure hope everything holds for him.
And Nik, like you, I hope he's okay.
Cathy
kadida1
04-24-2007, 09:51 AM
Hi all,
Sorry I have not posted in a while. It is hard for me to live. All these noises are so loud. I cry everday and just wait for night to come so I can sleep. I had a ct scan done it showed nothing, I was hoping for a brain tumor or cancer so maybe someone could help me. As far as my pet surgery I don't know if it was a success or not, I still have days when I hear myself breath and talk, but I don't feel myself breath in that ear anymore. I think it opens up at times, but with all the other noises going on it's hard to tell. What I do now for sure life for me is over. I cannot enjoy anything, any kind of movement makes the noises louder. So I just sit and wait for sleep. Thanks of course to the meds.
Teresea
Sorry I have not posted in a while. It is hard for me to live. All these noises are so loud. I cry everday and just wait for night to come so I can sleep. I had a ct scan done it showed nothing, I was hoping for a brain tumor or cancer so maybe someone could help me. As far as my pet surgery I don't know if it was a success or not, I still have days when I hear myself breath and talk, but I don't feel myself breath in that ear anymore. I think it opens up at times, but with all the other noises going on it's hard to tell. What I do now for sure life for me is over. I cannot enjoy anything, any kind of movement makes the noises louder. So I just sit and wait for sleep. Thanks of course to the meds.
Teresea
fluffyshouse
04-24-2007, 01:33 PM
Dear Teresa,
I'm so glad that you wrote. As I recall, after your surgery with Dr. Poe, you thought you might have fluid because of an over correction. Is that better? And didn't you have extreme pressure? I hope that has passed.
I think you just have to talk to Dr. Poe and see what is next. Please don't give up. I can relate to you when you say you think life is over for you and you just wait for sleep. But I am not giving up. I am going to do all I can to help myself.
I hope that you will do the same. Please also call Dr. Shea. I don't know where you live, but can you travel? Please don't give up. I feel really bad that PET has such a grip on you. It does on me, too, but I refuse to live with it for the rest of my life.
How many surgeries have you had? Can you tolerate ventilation tubes?
Please make those calls to Dr. Poe and to Dr. Shea. I really care about you.
Don't give up. I don't know how old you are, but I'm sure you have many more years to enjoy and many people that love you.
Your supporting PET friend,
Cathy
I'm so glad that you wrote. As I recall, after your surgery with Dr. Poe, you thought you might have fluid because of an over correction. Is that better? And didn't you have extreme pressure? I hope that has passed.
I think you just have to talk to Dr. Poe and see what is next. Please don't give up. I can relate to you when you say you think life is over for you and you just wait for sleep. But I am not giving up. I am going to do all I can to help myself.
I hope that you will do the same. Please also call Dr. Shea. I don't know where you live, but can you travel? Please don't give up. I feel really bad that PET has such a grip on you. It does on me, too, but I refuse to live with it for the rest of my life.
How many surgeries have you had? Can you tolerate ventilation tubes?
Please make those calls to Dr. Poe and to Dr. Shea. I really care about you.
Don't give up. I don't know how old you are, but I'm sure you have many more years to enjoy and many people that love you.
Your supporting PET friend,
Cathy
KSM79
04-24-2007, 04:43 PM
Hey Teresa...Yes, even I can relate to what you're saying. This problem has made a total 360 on my life too...for the worse...but you shouldn;t give up. Fluffy is right..get in touch with Dr.POe and Dr.Shea. Discuss ur case. One day..one day, they are gonna find a cure and it'll be all OK.
DONT GIVE UP and KEEP IN TOUCH!!
Take Care,
KSM
DONT GIVE UP and KEEP IN TOUCH!!
Take Care,
KSM
fluffyshouse
04-25-2007, 01:59 PM
Hello Lucyle,
Have you ever thought of trying to get your PET fixed? If not, why?
I really like your positive attitude. I'm sure it helps all of us. I know it does me.
Cathy
Have you ever thought of trying to get your PET fixed? If not, why?
I really like your positive attitude. I'm sure it helps all of us. I know it does me.
Cathy
Remmy
04-26-2007, 08:34 AM
Hi all,
Sorry I have not posted in a while. It is hard for me to live. All these noises are so loud. I cry everday and just wait for night to come so I can sleep. I had a ct scan done it showed nothing, I was hoping for a brain tumor or cancer so maybe someone could help me. As far as my pet surgery I don't know if it was a success or not, I still have days when I hear myself breath and talk, but I don't feel myself breath in that ear anymore. I think it opens up at times, but with all the other noises going on it's hard to tell. What I do now for sure life for me is over. I cannot enjoy anything, any kind of movement makes the noises louder. So I just sit and wait for sleep. Thanks of course to the meds.
Teresea
Dear Teresa.
I'm really glad to see that you are back to the healthboards, even though if I'm a great deal less glad since I find you are still suffering!!!
How come? As far as I knew, you had to go to Dr. Poe's at the beginning of April, hadn't you?
Can you understand if you symptoms are still PET related?
Or your noises are a result of a too long tube blockage?
I'd like to help you, but I'd like to understand more about your present situation.
Be strong and whatever happens and however you feel, drop some lines on the healthboards.
Bye
Remmy.
Sorry I have not posted in a while. It is hard for me to live. All these noises are so loud. I cry everday and just wait for night to come so I can sleep. I had a ct scan done it showed nothing, I was hoping for a brain tumor or cancer so maybe someone could help me. As far as my pet surgery I don't know if it was a success or not, I still have days when I hear myself breath and talk, but I don't feel myself breath in that ear anymore. I think it opens up at times, but with all the other noises going on it's hard to tell. What I do now for sure life for me is over. I cannot enjoy anything, any kind of movement makes the noises louder. So I just sit and wait for sleep. Thanks of course to the meds.
Teresea
Dear Teresa.
I'm really glad to see that you are back to the healthboards, even though if I'm a great deal less glad since I find you are still suffering!!!
How come? As far as I knew, you had to go to Dr. Poe's at the beginning of April, hadn't you?
Can you understand if you symptoms are still PET related?
Or your noises are a result of a too long tube blockage?
I'd like to help you, but I'd like to understand more about your present situation.
Be strong and whatever happens and however you feel, drop some lines on the healthboards.
Bye
Remmy.
kadida1
04-26-2007, 09:53 AM
Hi Remmy.
Thanks for your concern,
I had the follow up visit with my Dr here in Michigan. He said it looked like I still had fluid in my ear. My hearing test showed I had further hearing loss in the operated ear ( I am totaly deaf in the other). Just before surgery with Dr Poe he said " this won't help with all the tinnitus" He told me he thought I had Otosclerosis, that is what I have in my left ear. I had surgery for it in 1991 I did not regain my hearing but the tinnitus went away. I lived fine for the next 15 years. I had an occasional bit of tinnitus but nothing I could not handle. I agree with dr. Poe about the otosclerosis in my right ear. But because of no hearing in the left they are afraid to do any thing for the right.
As far as the pet I still have it. I can still hear myself talk and at times breath, but I don't feel the tube moving when I breath anymore. I don't see my Dr again until July he said if I still had fluid in the ear he would put in a tube. ( which I don't want) had one when the pet started and it did not help it just made my hearing a little worse.
Thanks everyone for your kind words and support.
Teresea
Thanks for your concern,
I had the follow up visit with my Dr here in Michigan. He said it looked like I still had fluid in my ear. My hearing test showed I had further hearing loss in the operated ear ( I am totaly deaf in the other). Just before surgery with Dr Poe he said " this won't help with all the tinnitus" He told me he thought I had Otosclerosis, that is what I have in my left ear. I had surgery for it in 1991 I did not regain my hearing but the tinnitus went away. I lived fine for the next 15 years. I had an occasional bit of tinnitus but nothing I could not handle. I agree with dr. Poe about the otosclerosis in my right ear. But because of no hearing in the left they are afraid to do any thing for the right.
As far as the pet I still have it. I can still hear myself talk and at times breath, but I don't feel the tube moving when I breath anymore. I don't see my Dr again until July he said if I still had fluid in the ear he would put in a tube. ( which I don't want) had one when the pet started and it did not help it just made my hearing a little worse.
Thanks everyone for your kind words and support.
Teresea
Addio
04-28-2007, 06:07 AM
Hi Teresea,
Welcome back to the board! ;-)
there is something I don't understand. Maybe you can help me? You say: "you can still hear yourself talk and at times breath" That indicates you still have PET. You also still have fluid in the ear. Is that the same ear as where you have PET?
This I cannot understand, because fluid in the ear is caused by a constant nagative pressure caused by an obstruction of the ET. When you have PET, that is not possible. Maybe you have in one ear PET and no fluid and at the other side obstruction of the ET causing fluid in the other ear?
If your local ENT doctor advices you to have a ventilating tube (e.g. a small grommet) placed at the side where you suffer from fluid (and I suppose that side is also the bad/no hearing side) then, if I were you, I should not ignore his advice. Your local ENT doctor knows the risks of obstruction of the ET.
Constant negative pressure in the middle ear can cause symptoms like deafness, fluid, inflammation and, after a while, cholesteatoma development. A cholesteatoma can damage your middle ear, your facial nerve (I speak from experience) I was just in time to let something do about it.
If the cholesteatoma is discovered too late it can cause serious damage, not only to the ear, but also paralysed facial muscles (one half paralyzed) or when the cholesteatoma reaches the brain even worse.
I advice you to ask you local doctor about these risks and listen very carefully to his advice. Maybe you had once a bad experience with a ventilating tube in the past (?) But that can depend from time to time and mostly its just the first few days after the tube is placed and you need to get used to the tube. Even little children get them(!), so don't be afraid.
I hope things turn out for you for the better!
Bye,
Addio
Welcome back to the board! ;-)
there is something I don't understand. Maybe you can help me? You say: "you can still hear yourself talk and at times breath" That indicates you still have PET. You also still have fluid in the ear. Is that the same ear as where you have PET?
This I cannot understand, because fluid in the ear is caused by a constant nagative pressure caused by an obstruction of the ET. When you have PET, that is not possible. Maybe you have in one ear PET and no fluid and at the other side obstruction of the ET causing fluid in the other ear?
If your local ENT doctor advices you to have a ventilating tube (e.g. a small grommet) placed at the side where you suffer from fluid (and I suppose that side is also the bad/no hearing side) then, if I were you, I should not ignore his advice. Your local ENT doctor knows the risks of obstruction of the ET.
Constant negative pressure in the middle ear can cause symptoms like deafness, fluid, inflammation and, after a while, cholesteatoma development. A cholesteatoma can damage your middle ear, your facial nerve (I speak from experience) I was just in time to let something do about it.
If the cholesteatoma is discovered too late it can cause serious damage, not only to the ear, but also paralysed facial muscles (one half paralyzed) or when the cholesteatoma reaches the brain even worse.
I advice you to ask you local doctor about these risks and listen very carefully to his advice. Maybe you had once a bad experience with a ventilating tube in the past (?) But that can depend from time to time and mostly its just the first few days after the tube is placed and you need to get used to the tube. Even little children get them(!), so don't be afraid.
I hope things turn out for you for the better!
Bye,
Addio
KSM79
04-30-2007, 04:13 PM
Hey Nik..finally, we hear from you. Thats great that your surgery was successful. And as for the ear infection I am sure it'll heal in due time. As I said I have an appointment at the Shea Clinic on the 9th of May for Eustachian tuboplasty. And i was waiting for your results to come to i can make my final decision. I am glad that I have heard from you..NOW I HAVE A FEW QUESTIONS FOR YOU!!
1) ARE THERE ANY SIDE-EFFECTS OF THE TEFLON TUBES THAT THEY HAVE INSERTED..IN THE LONG RUN.
2)HOW LONG WILL IT BE UNTIL THE VENTILATION TUBE COME OUT BY THEMSELVES...SO TECHNICALLY YOU HAVE 4 TUBES , IS THAT CORRECT?
3) IS THIS SURGERY PERMANENT..I MEAN WILL YOU HAVE TO GO BACK FOR A RE-LOOK IN SOME TIME?
4) YOU MENTIONED THAT YOU'RE INTO WEIGHT TRAINING..SO AM I. HOW LONG BEFORE YOU CAN HIT THE GYM AGAIN?
5) ON A SCALE OF 1-10..HOW WOULD U RATE THE SURGERY? (10 BEING THE BEST)
6)ARE COMPLETELY RID OF THE CLICKING,POPPING,AUTOPHONY..IN OTHER WORDS, ARE U GOOD AS NEW AND IS THERE ANYTHING WHICH IS STILL BOTHERING YOU?
Hey, thanks for your time and patience. I hope you can answer my questions and hopefully i'll be satisfied enough to make that trip to Shea Clinic.
Looking forward to hearing from you
Take Care,
-Kunal
1) ARE THERE ANY SIDE-EFFECTS OF THE TEFLON TUBES THAT THEY HAVE INSERTED..IN THE LONG RUN.
2)HOW LONG WILL IT BE UNTIL THE VENTILATION TUBE COME OUT BY THEMSELVES...SO TECHNICALLY YOU HAVE 4 TUBES , IS THAT CORRECT?
3) IS THIS SURGERY PERMANENT..I MEAN WILL YOU HAVE TO GO BACK FOR A RE-LOOK IN SOME TIME?
4) YOU MENTIONED THAT YOU'RE INTO WEIGHT TRAINING..SO AM I. HOW LONG BEFORE YOU CAN HIT THE GYM AGAIN?
5) ON A SCALE OF 1-10..HOW WOULD U RATE THE SURGERY? (10 BEING THE BEST)
6)ARE COMPLETELY RID OF THE CLICKING,POPPING,AUTOPHONY..IN OTHER WORDS, ARE U GOOD AS NEW AND IS THERE ANYTHING WHICH IS STILL BOTHERING YOU?
Hey, thanks for your time and patience. I hope you can answer my questions and hopefully i'll be satisfied enough to make that trip to Shea Clinic.
Looking forward to hearing from you
Take Care,
-Kunal
KSM79
05-01-2007, 02:12 AM
Hey Nik, thanks for answering my questions. So I guess you're totally PET free now. Thats great!! But i still have some apprehensions abt the surgery man. My only doubt is..after all you DO have foreign objects in your ear i.e the teflon tubes. Don't mean to sound negative but what if the body does not react well to it..and pushes them out. Did Dr.Shea say anything about that or the tubes falling out?
Is the process reversible? How about being near loud music, or swimming (after the Vent tubes fall out), running.
I am sorry I am asking all these questions man, but I asked the same questions to Shea but they are too busy to reply back ..Understandable. ANd I rather hear from someone who has actually been through it.
Thanks
-K
Is the process reversible? How about being near loud music, or swimming (after the Vent tubes fall out), running.
I am sorry I am asking all these questions man, but I asked the same questions to Shea but they are too busy to reply back ..Understandable. ANd I rather hear from someone who has actually been through it.
Thanks
-K
KSM79
05-01-2007, 07:44 AM
Yeah..I think you have pretty much convinced me regarding the positives of the surgery. Now the only thing is the cost. It IS expensive, but atleast it gives you your life back.
Hows your left ear now? Any change in the fluid build-up?
-Kunal
Hows your left ear now? Any change in the fluid build-up?
-Kunal
KSM79
05-02-2007, 02:53 PM
Hey Nik..How u feeling now? Hows the left ear? Any improvement ? Keep me posted!!
-K
-K
Addio
05-05-2007, 09:22 AM
Hi P.E.T friends,
Can anyone tell me if ventilation tubes made their p.e.t worse?
Thank you.
Nik
Hi Nik,
As I had experienced (for the last 25 years) vent.tubes do not make PET worse. In my case it gave me 100% relieve of PET!! However there is a downside to the vent tubes. Afer 25 years of using them to escape PET, my eardrums are full of scars and puting vent.tubes in my eardrums became more and more difficult to perform.
For a short term solution it cannot hurt in my opinion. It can help PET go away. In my case it did, but as I have heard from others, the vent tubes don't help for everyone. But if you never try, you'll never know...
By the way, why you ask? Your PET is gone after the surgery, isn't it? Or do yo need vent tubes now to drain the fluid caused by the cold??
In both cases I can recommend you to try at least once. Specially if you need to drain the fluid like in Teresea's case.
Good luck,
Addio
Can anyone tell me if ventilation tubes made their p.e.t worse?
Thank you.
Nik
Hi Nik,
As I had experienced (for the last 25 years) vent.tubes do not make PET worse. In my case it gave me 100% relieve of PET!! However there is a downside to the vent tubes. Afer 25 years of using them to escape PET, my eardrums are full of scars and puting vent.tubes in my eardrums became more and more difficult to perform.
For a short term solution it cannot hurt in my opinion. It can help PET go away. In my case it did, but as I have heard from others, the vent tubes don't help for everyone. But if you never try, you'll never know...
By the way, why you ask? Your PET is gone after the surgery, isn't it? Or do yo need vent tubes now to drain the fluid caused by the cold??
In both cases I can recommend you to try at least once. Specially if you need to drain the fluid like in Teresea's case.
Good luck,
Addio
Addio
05-05-2007, 10:11 AM
Nik,
Your welcome ;)
My vent.tubes are taken out by my local ENT doctor to see the effect of the injections. It's 10 days ago and the eardrums are already healed by them self. That happend after a about 5 days. My eardrums and ET were checked by scopes and my ET left functions normally.. No PET!!! At my right side I still have a little bit PET (pops now and then but has improved!) It looks like my right side is a little bit UNDER corrected and needs some extra correction. This is always better then over correction because that causes obstruction of the ET.
This result of the surgery makes it possible for me to have next time the cartilage graft done by Dr. Poe (no extra injections needed). There is no obstruction! :) When Dr. Poe does the cartilage graft it is for a lifetime.
Yes, I understand it's odd I always had relieve by the vent.tubes. Did you ever tried them BEFORE you had your surgery at Shea's clinic? If yes, what did you experience? If no, you also have to wait after the vent tubes fall out or have been taken out, to experience the final results of your surgery...
Bye, Addio
Your welcome ;)
My vent.tubes are taken out by my local ENT doctor to see the effect of the injections. It's 10 days ago and the eardrums are already healed by them self. That happend after a about 5 days. My eardrums and ET were checked by scopes and my ET left functions normally.. No PET!!! At my right side I still have a little bit PET (pops now and then but has improved!) It looks like my right side is a little bit UNDER corrected and needs some extra correction. This is always better then over correction because that causes obstruction of the ET.
This result of the surgery makes it possible for me to have next time the cartilage graft done by Dr. Poe (no extra injections needed). There is no obstruction! :) When Dr. Poe does the cartilage graft it is for a lifetime.
Yes, I understand it's odd I always had relieve by the vent.tubes. Did you ever tried them BEFORE you had your surgery at Shea's clinic? If yes, what did you experience? If no, you also have to wait after the vent tubes fall out or have been taken out, to experience the final results of your surgery...
Bye, Addio
Addio
05-05-2007, 10:20 AM
Radiesse implants... the stuff Dr. Poe injected in my ET's
What is it:
Radiesse is the first calcium hydroxylapatite injectable cohesive implant used for soft tissue augmentation. Over the last seven years, Radiesse has proven to be a safe and effective alternative for those patients wishing to avoid the potential side effects of bovine and solid implant materials.
Radiesse consists of calcium hydroxylapatite microspheres suspended in a biocompatible carboxymethylcellulose gel. It is long lasting and does not require a skin test because it is the same mineral component found in our bones and teeth.
According this information maybe I don't need the cartilage graft anymore and another (extra) injection may be sufficient?
This is interesting. I'll ask Dr. Poe
Bye,
Addio
Ps. I don't understand your note about scar tissue build up? Maybe that is in combination with the cartilage graft surgery? I cannot understand why a calcium injection causes scar tissue build up? Dr. Poe did not told me anything about scar tissue created by the injection.
What is it:
Radiesse is the first calcium hydroxylapatite injectable cohesive implant used for soft tissue augmentation. Over the last seven years, Radiesse has proven to be a safe and effective alternative for those patients wishing to avoid the potential side effects of bovine and solid implant materials.
Radiesse consists of calcium hydroxylapatite microspheres suspended in a biocompatible carboxymethylcellulose gel. It is long lasting and does not require a skin test because it is the same mineral component found in our bones and teeth.
According this information maybe I don't need the cartilage graft anymore and another (extra) injection may be sufficient?
This is interesting. I'll ask Dr. Poe
Bye,
Addio
Ps. I don't understand your note about scar tissue build up? Maybe that is in combination with the cartilage graft surgery? I cannot understand why a calcium injection causes scar tissue build up? Dr. Poe did not told me anything about scar tissue created by the injection.
KSM79
05-05-2007, 11:17 AM
HI Nik...
Are you having problems after your surgery? The reason I ask is since I will be getting the same surgery just wanted to know how you're feeling. All these questions from you are making me a lil nervous.
Please let me know if anything is bothering you.
Thanks Bro,
KSM
Are you having problems after your surgery? The reason I ask is since I will be getting the same surgery just wanted to know how you're feeling. All these questions from you are making me a lil nervous.
Please let me know if anything is bothering you.
Thanks Bro,
KSM
KSM79
05-05-2007, 03:57 PM
Nik..I know what you're saying but now it has made me re-think the visit to Shea. I had almost confirmed my flights and other details but after hearing your case, I have put e'thing on hold.
And is the fluid build up ONLY due to the walk u had taken? Well hopefully the fluid will drain out soon and you'll be fine. Have you talked to Dr.Shea about this?.....If so, what does he recommend?
Keep us posted. Take Care
-KSM
And is the fluid build up ONLY due to the walk u had taken? Well hopefully the fluid will drain out soon and you'll be fine. Have you talked to Dr.Shea about this?.....If so, what does he recommend?
Keep us posted. Take Care
-KSM
Addio
05-05-2007, 07:23 PM
Hi Nick,
You told me you had vent. tubes inserted. I don't understand you can have ear infection and fluid build up because of some cold? I too had a serious cold right after the surgery (see my surgery report some 10 pages back) It was a terrible cold, but I did not end up having fluid build up. This can cause hearing loss too. I hope for you this is not the case and your vent tubes will drain the fluid very soon.
Have you asked Dr. Shea what happens if the teflon in the ET has to be taken out? Or what happens after the vent. tubes are thrown out? In my opinion the teflon tubes in the ET narrow the opening between your nose and middle ear, causing a risk of obstruction. After taking out the teflon the ET must become more patulous??? Can you ask Dr. Shea?
I know a girl from the Netherlands and she had the same problems as you describe. To be honest, I doubt your problems are your fault because of some cold.
But, as you say, everybody has to decide for him/herself what he/she chooses.
My appointment whith Dr. Poe took a long time (5 months) because I wanted both, diagnose and surgery, at the same time to reduce costs for traveling etc. For now I am happy my left side is totally PET free and I am happy it's that ear, because it's my good ear and now there are no vent tubes needed that side :) In a few months I get my artificial hearing bones in my right ear and if the popping is still there I ask for a T-drain to solve the problem. I hope my last T-drain.
Then it's a matter of time before I visit Dr. Poe again. In the meantime I have to save the money to make it possible. By the way, I get 5.500 US$ refund from the MEEI which is welcome of course for the next surgery in future :) I was also happy DR. Poe was able to treat two sides in one surgery.
If I go back for a refilling, it's possible to have the cartilage graft which is long lasting. Maybe, at that time, there is also more knowledge and even better methods to cure PET? Let's hope so.
You told me you had vent. tubes inserted. I don't understand you can have ear infection and fluid build up because of some cold? I too had a serious cold right after the surgery (see my surgery report some 10 pages back) It was a terrible cold, but I did not end up having fluid build up. This can cause hearing loss too. I hope for you this is not the case and your vent tubes will drain the fluid very soon.
Have you asked Dr. Shea what happens if the teflon in the ET has to be taken out? Or what happens after the vent. tubes are thrown out? In my opinion the teflon tubes in the ET narrow the opening between your nose and middle ear, causing a risk of obstruction. After taking out the teflon the ET must become more patulous??? Can you ask Dr. Shea?
I know a girl from the Netherlands and she had the same problems as you describe. To be honest, I doubt your problems are your fault because of some cold.
But, as you say, everybody has to decide for him/herself what he/she chooses.
My appointment whith Dr. Poe took a long time (5 months) because I wanted both, diagnose and surgery, at the same time to reduce costs for traveling etc. For now I am happy my left side is totally PET free and I am happy it's that ear, because it's my good ear and now there are no vent tubes needed that side :) In a few months I get my artificial hearing bones in my right ear and if the popping is still there I ask for a T-drain to solve the problem. I hope my last T-drain.
Then it's a matter of time before I visit Dr. Poe again. In the meantime I have to save the money to make it possible. By the way, I get 5.500 US$ refund from the MEEI which is welcome of course for the next surgery in future :) I was also happy DR. Poe was able to treat two sides in one surgery.
If I go back for a refilling, it's possible to have the cartilage graft which is long lasting. Maybe, at that time, there is also more knowledge and even better methods to cure PET? Let's hope so.
KSM79
05-07-2007, 03:17 PM
Nik,
Any change in your left ear?? Hows the fluid situation? I hope its started to drain out. Well according to Dr.Shea, he is absolutely certain that the Eustachian Tuboplasty has absolutely NO EFFECT on the ear drum.
I was just wondering how this girl you know can have 70% hearing loss although she is Autophony free. Very strange!!
And how does the fluid get accumulated? Is it because of 1) The Teflon Tubes or 2) The Vent tubes 3) Or just a reaction after the surgery.
Were you feeling 100% autophony free IMMEDIATELY after the surgery?
Let me know once you get a chance.
Take Care,
KSM
Any change in your left ear?? Hows the fluid situation? I hope its started to drain out. Well according to Dr.Shea, he is absolutely certain that the Eustachian Tuboplasty has absolutely NO EFFECT on the ear drum.
I was just wondering how this girl you know can have 70% hearing loss although she is Autophony free. Very strange!!
And how does the fluid get accumulated? Is it because of 1) The Teflon Tubes or 2) The Vent tubes 3) Or just a reaction after the surgery.
Were you feeling 100% autophony free IMMEDIATELY after the surgery?
Let me know once you get a chance.
Take Care,
KSM
fluffyshouse
05-08-2007, 01:44 AM
Dear Cathy,
I am very interested in this silicone plug implant at the mouth of the e.tube, how does it work? Has it been successful?
I am also asking on behalf of a p.e.t friend.
Thank you.
Nik
Hi Nik,
I have been out of town and just returned. I have been really anxious to hear about your experience at the Shea Clinic. I am hoping your fluid filled ear will clear up soon.
The silicon plug was placed at the base of my E tube. It did not work, so I am going back for a June 18th surgery with Dr. Poe. He is going to put in another silicon plug to go with the other one. There is a risk of over correcting, but as others have said, Dr. Poe is very careful not to over correct. It's possible, though. I am going to take that risk.
He is also checking into doing the silicon tubing from the Shea Clinic in my other ear, which is getting worse. His assistant talked to my husband this morning. Dr. Poe will call me when he receives the tubing and to tell me about it and the procedure. Dr. Poe does not want to do the same procedure on both of my ears in case something goes wrong. Maybe the injection is different because Addio got that in both ears.
I don't know how many other people have received the silicon plug. I was only the second person to get it last June of 2006. I know that the person before me was fixed by the plug.
I will let you know after my June 18th surgery. I am afraid of the over correcting.
There has been questions about the calcium paste injection that Addio had. I have had it in one of my ears. It didn't work for me right away, like with Addio. Dr. Poe says it causes scar tissue to form, starting about two months after the injection and can keep scar tissue growing for up to a year.
Keep us posted, Nik. We care.
Cathy
I am very interested in this silicone plug implant at the mouth of the e.tube, how does it work? Has it been successful?
I am also asking on behalf of a p.e.t friend.
Thank you.
Nik
Hi Nik,
I have been out of town and just returned. I have been really anxious to hear about your experience at the Shea Clinic. I am hoping your fluid filled ear will clear up soon.
The silicon plug was placed at the base of my E tube. It did not work, so I am going back for a June 18th surgery with Dr. Poe. He is going to put in another silicon plug to go with the other one. There is a risk of over correcting, but as others have said, Dr. Poe is very careful not to over correct. It's possible, though. I am going to take that risk.
He is also checking into doing the silicon tubing from the Shea Clinic in my other ear, which is getting worse. His assistant talked to my husband this morning. Dr. Poe will call me when he receives the tubing and to tell me about it and the procedure. Dr. Poe does not want to do the same procedure on both of my ears in case something goes wrong. Maybe the injection is different because Addio got that in both ears.
I don't know how many other people have received the silicon plug. I was only the second person to get it last June of 2006. I know that the person before me was fixed by the plug.
I will let you know after my June 18th surgery. I am afraid of the over correcting.
There has been questions about the calcium paste injection that Addio had. I have had it in one of my ears. It didn't work for me right away, like with Addio. Dr. Poe says it causes scar tissue to form, starting about two months after the injection and can keep scar tissue growing for up to a year.
Keep us posted, Nik. We care.
Cathy
Addio
05-08-2007, 04:30 PM
Hi Cathy,
Nice to hear from you again! When you go back at June 18th for surgery by Dr. Poe. can you send Dr. Poe my regards? Just say: "the blond guy from the Netherlands with the complex bilateral PET, you have cured, wants to say HI!!" :-)
My left ears is totaly cured and my right ear has no autophony. Only now and then a pop, but not much and it's much more stable.
Cathy, now I read about the scar tissue to form? I did not realise that before. Don't remember Dr. Poe told this to me (?) In the case my ET's start to build scar tissue in the 2 months after the injection (for me that is over 2 weeks from now) Maybe that can still correct my right ET a little bit?
I'll ask Dr. Poe about this. I hope so. Both sides will have complete relieve then! :-):-)
I read about the silicon plug. Cathy, can you tell me why you/Dr. Poe choose for that? Are your a severe case of PET?
Nik, I think it's not just a matter of shopping when visiting Dr. Poe. Dr. Poe first has to see you and to judge the state of your ET's. Then Dr. Poe can also mention another treatment instead of the silicon plug e.g. We are al different. What works with me for example, does not work for someone with a very large opening in the ET and the other way around.
We all are different and I think it's best to let Dr. Poe to decide what treatment is best for you.
Addio
Nice to hear from you again! When you go back at June 18th for surgery by Dr. Poe. can you send Dr. Poe my regards? Just say: "the blond guy from the Netherlands with the complex bilateral PET, you have cured, wants to say HI!!" :-)
My left ears is totaly cured and my right ear has no autophony. Only now and then a pop, but not much and it's much more stable.
Cathy, now I read about the scar tissue to form? I did not realise that before. Don't remember Dr. Poe told this to me (?) In the case my ET's start to build scar tissue in the 2 months after the injection (for me that is over 2 weeks from now) Maybe that can still correct my right ET a little bit?
I'll ask Dr. Poe about this. I hope so. Both sides will have complete relieve then! :-):-)
I read about the silicon plug. Cathy, can you tell me why you/Dr. Poe choose for that? Are your a severe case of PET?
Nik, I think it's not just a matter of shopping when visiting Dr. Poe. Dr. Poe first has to see you and to judge the state of your ET's. Then Dr. Poe can also mention another treatment instead of the silicon plug e.g. We are al different. What works with me for example, does not work for someone with a very large opening in the ET and the other way around.
We all are different and I think it's best to let Dr. Poe to decide what treatment is best for you.
Addio
KSM79
05-08-2007, 05:30 PM
NIk,
I guess I am not willing to take chances unlike you and Cathy. I have canceled my appt. with Dr. Shea as of now.
See, I cannot take chances simply coz of the money involved and I cannot keep going back n forth. I only have one shot at this...and if it doesnt work out , well then...!!
But keep me posted regarding your situation. I am keeping my fingers crossed for you. Talk to u soon!!
-Kunal
I guess I am not willing to take chances unlike you and Cathy. I have canceled my appt. with Dr. Shea as of now.
See, I cannot take chances simply coz of the money involved and I cannot keep going back n forth. I only have one shot at this...and if it doesnt work out , well then...!!
But keep me posted regarding your situation. I am keeping my fingers crossed for you. Talk to u soon!!
-Kunal
KSM79
05-09-2007, 12:04 PM
Nik,
Well I have consulted a LOT of ENT's...some who know Dr.Shea as well. But ALL of them have told me to live with it (easier said than done). But I spoke to my ENT regarding your fluid build-up and she said could be an infection from the weather like you said. But chances of hearing loss are negligible which makes the case of the girl from Netherlands even more baffling. Freak case I guess.
But keep my posted abt your fluid build up story.
Take Care.
KSM
Well I have consulted a LOT of ENT's...some who know Dr.Shea as well. But ALL of them have told me to live with it (easier said than done). But I spoke to my ENT regarding your fluid build-up and she said could be an infection from the weather like you said. But chances of hearing loss are negligible which makes the case of the girl from Netherlands even more baffling. Freak case I guess.
But keep my posted abt your fluid build up story.
Take Care.
KSM
Addio
05-09-2007, 01:23 PM
Nik, KSM79,
I don't think it's that easy... The indian doctors don't have the equipment like Shea/Poe/Kujawski have. And certainly not the experience and skills. I don't believe a complex surgery can be performed by following some instructions from distance, or by some manual. It has been tried before at some patient's in the Netherlands, but unfortunately without succes.
Don't underestimate the specialism required by these kind of surgeries. If it was that easy, these treatments were already world wide spread. Dr. Poe and Kujwaski try to spread their knowledge and techniques by giving lectures at congresses.
Addio
I don't think it's that easy... The indian doctors don't have the equipment like Shea/Poe/Kujawski have. And certainly not the experience and skills. I don't believe a complex surgery can be performed by following some instructions from distance, or by some manual. It has been tried before at some patient's in the Netherlands, but unfortunately without succes.
Don't underestimate the specialism required by these kind of surgeries. If it was that easy, these treatments were already world wide spread. Dr. Poe and Kujwaski try to spread their knowledge and techniques by giving lectures at congresses.
Addio
fluffyshouse
05-10-2007, 12:59 AM
Dear Cathy,
Thank you for the info.
P.E.T is such a strange disorder, what works for one person does not work on another??????
If I may ask, the silicone plug is instead of the cartliage graft?
It must be a one off surgery if it works? The silicone plug will not get absorbed by the body since it is a solid material and not liquid?
This must be Dr Poes new invention for treating P.E.T, it sounds promising.
Although it did not work for you, did Dr Poe tell you why it did not work for you?
About your worries for the over correction for your new surgery, - I have read great things about Dr Poe and you are in good hands, I am sure all will be fine. Good Luck.
Your p.e.t friend from the Netherlands asked me to enquire about you, she sends her regards:)
Take care.
Nik
Hi Nik,
Yes, the silicon plug was used instead of the cartilage graft and you are exactly right when you said it is a solid material and will never be absorbed, like a cartilage graft could be. That is why Dr. Poe wanted to try it. I imagine it to be like a hard plastic, but maybe it's semi-soft. I don't know. It was weird when I saw it when Dr. Poe did a scope when I went back there last September for the cartilage graft in the same ear because the silicon plug hadn't worked. I could see that my E tube was extremely wide and there at the bottom was a giant, or so it seemed, bulge, which was the silicon plug. It reminded me of a very pregnant woman ready to give birth at any moment. It really stuck out into the E tube. I tell people I might be one of the few women with only one silicon implant. But that will change in June when I will get another one to pair up with the first one. It's funny to think of how that will look in a scope.
I think the silicon plug has been used in Japan before Dr. Poe used it, but I'm not sure.
Dr. Poe doesn't not know why the silicon plug did not work for me, and is really baffled as to why the cartilage graft didn't work. He tells me that everytime I speak with him. I guess I am just difficult to treat.
Please tell your Netherlands friend hello for me and that I care.
You mentioned I am brave to take the risk. I agree that success can only be found with taking a chance. But I am scarred. I don't know if it's because I have already had two different surgeries on the same problem with just a slight improvement, or if Heavenly Father is telling me not to have it done.
How do I know? I am afraid of ending up worse. I know I am an experiment. That doesn't sound very good, but I guess someone has to be the one.
The autophony in the twice surgical ear is worse in the morning, every morning. It used to be all day long. I hate it, but I wonder if it's worth having done. It will be if I get cured.
I am wondering, Nik, if you had a hearing loss when your PET started, and if some or all of that loss has been restored with the silicon tubing placed. Maybe it's too soon to tell. And did you have tinnitus before and now you don't?
I remember you mentioning in one of your posts that you have packing in your ears. I was shocked to read that. Why did Dr. Shea have to do that? I assume it will eventually dissolved. You might hear some popping and crackling as it does so, but don't think your PET is returning.
I really don't want packing in the ear that Dr. Poe is going to place the silicon tubing. Maybe he'll do it differently.
I'm sorry for the long post. Let me know about your hearing. Maybe as your ear gets less swollen from your surgery, your ear infection will clear up.
Cathy
Thank you for the info.
P.E.T is such a strange disorder, what works for one person does not work on another??????
If I may ask, the silicone plug is instead of the cartliage graft?
It must be a one off surgery if it works? The silicone plug will not get absorbed by the body since it is a solid material and not liquid?
This must be Dr Poes new invention for treating P.E.T, it sounds promising.
Although it did not work for you, did Dr Poe tell you why it did not work for you?
About your worries for the over correction for your new surgery, - I have read great things about Dr Poe and you are in good hands, I am sure all will be fine. Good Luck.
Your p.e.t friend from the Netherlands asked me to enquire about you, she sends her regards:)
Take care.
Nik
Hi Nik,
Yes, the silicon plug was used instead of the cartilage graft and you are exactly right when you said it is a solid material and will never be absorbed, like a cartilage graft could be. That is why Dr. Poe wanted to try it. I imagine it to be like a hard plastic, but maybe it's semi-soft. I don't know. It was weird when I saw it when Dr. Poe did a scope when I went back there last September for the cartilage graft in the same ear because the silicon plug hadn't worked. I could see that my E tube was extremely wide and there at the bottom was a giant, or so it seemed, bulge, which was the silicon plug. It reminded me of a very pregnant woman ready to give birth at any moment. It really stuck out into the E tube. I tell people I might be one of the few women with only one silicon implant. But that will change in June when I will get another one to pair up with the first one. It's funny to think of how that will look in a scope.
I think the silicon plug has been used in Japan before Dr. Poe used it, but I'm not sure.
Dr. Poe doesn't not know why the silicon plug did not work for me, and is really baffled as to why the cartilage graft didn't work. He tells me that everytime I speak with him. I guess I am just difficult to treat.
Please tell your Netherlands friend hello for me and that I care.
You mentioned I am brave to take the risk. I agree that success can only be found with taking a chance. But I am scarred. I don't know if it's because I have already had two different surgeries on the same problem with just a slight improvement, or if Heavenly Father is telling me not to have it done.
How do I know? I am afraid of ending up worse. I know I am an experiment. That doesn't sound very good, but I guess someone has to be the one.
The autophony in the twice surgical ear is worse in the morning, every morning. It used to be all day long. I hate it, but I wonder if it's worth having done. It will be if I get cured.
I am wondering, Nik, if you had a hearing loss when your PET started, and if some or all of that loss has been restored with the silicon tubing placed. Maybe it's too soon to tell. And did you have tinnitus before and now you don't?
I remember you mentioning in one of your posts that you have packing in your ears. I was shocked to read that. Why did Dr. Shea have to do that? I assume it will eventually dissolved. You might hear some popping and crackling as it does so, but don't think your PET is returning.
I really don't want packing in the ear that Dr. Poe is going to place the silicon tubing. Maybe he'll do it differently.
I'm sorry for the long post. Let me know about your hearing. Maybe as your ear gets less swollen from your surgery, your ear infection will clear up.
Cathy
fluffyshouse
05-10-2007, 01:41 AM
Dear Addio,
I will happily tell Dr. Poe you said hello. I'm sure he'll be happy that you thought to have me tell him you thought of him.
I'm so happy that your ears have no autophony since your trip to Boston. I assume your vent tubes have been removed. I think there is hope that your leftover PET will correct, since the scar tissue will keep growing for a long time. It won't happen over night, like I know you know.
In answer to your question about why I or Dr. Poe chose the silicon plug, it was Dr. Poe who told me he wanted to use it on me and that I would be the second person he had tried it on. The first person was completely cured by it. I thought it sounded like a good idea since it would never break down. And it would save me having to have my outside ear cut for the cartilage. But I ended up having to have that done anyway in September. By the way, my graft sight is still sore after eight months. I wonder why. I sure had a severe sore throat after the silicon plug surgery, more so than the cartilage graft one.
I don't think I have a severe case of PET according to what I read here in the Health Boards, but it's bad enough to me because it is happening to me.
Any autophony, in my opinion, is something I do not want to have. Addio, did you have stuffy ears before your injections? And now you don't? Have you ever had earaches because of PET? I have earaches, tinnitus, and my ears usually feel like they need to pop, like on an airplane. Do you know if any of those will go away if I get cured?
Do you or anyone else reading this get any earaches with their PET? I am told it's because of my jaw tensing up because of the PET, but I'm wondering, too, if it could be having more air getting into my E tube causing my ear to ache. What do you think? I would appreciate any opinions regarding this. Thank you.
Addio, are you exercising almost PET free? I am afraid to exercise because I don't want any more autophony than what I already have.
Cathy
I will happily tell Dr. Poe you said hello. I'm sure he'll be happy that you thought to have me tell him you thought of him.
I'm so happy that your ears have no autophony since your trip to Boston. I assume your vent tubes have been removed. I think there is hope that your leftover PET will correct, since the scar tissue will keep growing for a long time. It won't happen over night, like I know you know.
In answer to your question about why I or Dr. Poe chose the silicon plug, it was Dr. Poe who told me he wanted to use it on me and that I would be the second person he had tried it on. The first person was completely cured by it. I thought it sounded like a good idea since it would never break down. And it would save me having to have my outside ear cut for the cartilage. But I ended up having to have that done anyway in September. By the way, my graft sight is still sore after eight months. I wonder why. I sure had a severe sore throat after the silicon plug surgery, more so than the cartilage graft one.
I don't think I have a severe case of PET according to what I read here in the Health Boards, but it's bad enough to me because it is happening to me.
Any autophony, in my opinion, is something I do not want to have. Addio, did you have stuffy ears before your injections? And now you don't? Have you ever had earaches because of PET? I have earaches, tinnitus, and my ears usually feel like they need to pop, like on an airplane. Do you know if any of those will go away if I get cured?
Do you or anyone else reading this get any earaches with their PET? I am told it's because of my jaw tensing up because of the PET, but I'm wondering, too, if it could be having more air getting into my E tube causing my ear to ache. What do you think? I would appreciate any opinions regarding this. Thank you.
Addio, are you exercising almost PET free? I am afraid to exercise because I don't want any more autophony than what I already have.
Cathy
Addio
05-12-2007, 07:41 PM
Dear Cathy,
Thank you for saying hi to Dr. Poe for me. You can also refer to me as: "the Dutch patient with the fever on the surgery day". Dr. Poe will also recognize that.
Actually, what I mean by a severe case of PET is a wide opening in the ET that cannot be compensated by sniffing. That causes autophony all the time. I was lucky I did not have that. Maybe that is also the reason Dr. Poe didn't offer me the option for the silicon plug.
The silicon plug sounds to me like a radical solution. Or am I wrong about this Cathy? Have you seen the plug before Dr. Poe inserted it into your ET? Have you seen pictures of it before you saw it with the scope?
Cathy, before I had the injections I did NOT have any stuffed ears or any earaches. I have a slight Tinnitus in my right ear for already 18 years, but that was not caused by the PET. I assume that was caused by a hard sound.
I had twice a cholesteatoma in my right ear and that caused a lot of damage.
Many years ago I had a few times serious ear infections, caused by seawater entering my middle ear. I was completely deaf at that time in my right ear and had a lot of pain in my right side of the face and jaw. It was a middle ear and outer ear infection. Eventually it cured by use of antibiotics.
The last 10-15 years my ears are very stable, dry and no infections. However the problem with the cholesteatoma in my right ear was causing so much problems. My ears didn't feel like, but they DID pop many, many, many times. I believe all that popping and sniffing I did caused a pocket to develop in the eardrum and the cholesteatoma to grow and damaged my right ear.
Normally, if the silicon plug works as it has to work, then your ET will close and only opens now an then after a swallow or yawn. Then your ET should not be popping anymore, or feel like it has to pop. Then you also don't have any autophony.
Cathy, when I exercise I have no problems in my left ear. That ear is completely cured. My right ear can still pop, but the autophony is actually not worrying. I have some full feeling in my ear then and I still can compensate by sniffing. However that feeling is not pleasant but still I exercise and like to run long distances. I hate to see my self swell when I lay down all day and do nothing.
In januari this year I was 85 kg (187 pounds). Now I am 76 kg (167 pounds) by 182 cm. That also makes me feel a lot better ;)
Addio
Thank you for saying hi to Dr. Poe for me. You can also refer to me as: "the Dutch patient with the fever on the surgery day". Dr. Poe will also recognize that.
Actually, what I mean by a severe case of PET is a wide opening in the ET that cannot be compensated by sniffing. That causes autophony all the time. I was lucky I did not have that. Maybe that is also the reason Dr. Poe didn't offer me the option for the silicon plug.
The silicon plug sounds to me like a radical solution. Or am I wrong about this Cathy? Have you seen the plug before Dr. Poe inserted it into your ET? Have you seen pictures of it before you saw it with the scope?
Cathy, before I had the injections I did NOT have any stuffed ears or any earaches. I have a slight Tinnitus in my right ear for already 18 years, but that was not caused by the PET. I assume that was caused by a hard sound.
I had twice a cholesteatoma in my right ear and that caused a lot of damage.
Many years ago I had a few times serious ear infections, caused by seawater entering my middle ear. I was completely deaf at that time in my right ear and had a lot of pain in my right side of the face and jaw. It was a middle ear and outer ear infection. Eventually it cured by use of antibiotics.
The last 10-15 years my ears are very stable, dry and no infections. However the problem with the cholesteatoma in my right ear was causing so much problems. My ears didn't feel like, but they DID pop many, many, many times. I believe all that popping and sniffing I did caused a pocket to develop in the eardrum and the cholesteatoma to grow and damaged my right ear.
Normally, if the silicon plug works as it has to work, then your ET will close and only opens now an then after a swallow or yawn. Then your ET should not be popping anymore, or feel like it has to pop. Then you also don't have any autophony.
Cathy, when I exercise I have no problems in my left ear. That ear is completely cured. My right ear can still pop, but the autophony is actually not worrying. I have some full feeling in my ear then and I still can compensate by sniffing. However that feeling is not pleasant but still I exercise and like to run long distances. I hate to see my self swell when I lay down all day and do nothing.
In januari this year I was 85 kg (187 pounds). Now I am 76 kg (167 pounds) by 182 cm. That also makes me feel a lot better ;)
Addio
Remmy
05-13-2007, 04:56 PM
Hi my friends.
I have not been on the healthboards for some days, just because once in a while I need some rest, even though I usually give a thougth to you all at least once a day.
Now that I'm back, I've just read your long posts (and it's a pleasure to me to read all of them, so non problem with that).
I'm really pleased to see that Cathy has chosen her way to go.... once again. I agree with Nik: you are a very brave person. But I think that we all here on the HB are brave people, since we are searching for a solution to a very hard problem.
KSM79.... I read that you canceled you appointment with Dr. Shea. I can understand that, mainly because you have only one chance to go (money is a problem, I know). Anyway, do not give up: evaluate among Kujawski/Poe and Shea and finally take you decision and your risks too (with a strange disease like PET, you can never get rid of risks).
Addio, I'm really glad to read that you are improving day by day. As far as I know, the calcium injection provokes some scarry tissue to grow, for a long time after surgery, so tubes get more and more stable.
Nik, be strong: you are gonna solve your problem with you left ear. Let's wait and see what happens after the fluid has been drained.
Guys.... I think we are having good results... don't you think?
We have to thank people like Dr. Kujawski, Dr. Poe and Dr. Shea: they are relevant ENT's that wants to take care of people, even in case of rare and orphan disease, like PET is. They are good men.
And, also, slight PET sufferers like me have to thank you sever PET sufferers, since you are so brave to undergo surgery.
Take care.
Bye
Remmy.
P.S.: Teresea, how are you? Let us know about you.
I have not been on the healthboards for some days, just because once in a while I need some rest, even though I usually give a thougth to you all at least once a day.
Now that I'm back, I've just read your long posts (and it's a pleasure to me to read all of them, so non problem with that).
I'm really pleased to see that Cathy has chosen her way to go.... once again. I agree with Nik: you are a very brave person. But I think that we all here on the HB are brave people, since we are searching for a solution to a very hard problem.
KSM79.... I read that you canceled you appointment with Dr. Shea. I can understand that, mainly because you have only one chance to go (money is a problem, I know). Anyway, do not give up: evaluate among Kujawski/Poe and Shea and finally take you decision and your risks too (with a strange disease like PET, you can never get rid of risks).
Addio, I'm really glad to read that you are improving day by day. As far as I know, the calcium injection provokes some scarry tissue to grow, for a long time after surgery, so tubes get more and more stable.
Nik, be strong: you are gonna solve your problem with you left ear. Let's wait and see what happens after the fluid has been drained.
Guys.... I think we are having good results... don't you think?
We have to thank people like Dr. Kujawski, Dr. Poe and Dr. Shea: they are relevant ENT's that wants to take care of people, even in case of rare and orphan disease, like PET is. They are good men.
And, also, slight PET sufferers like me have to thank you sever PET sufferers, since you are so brave to undergo surgery.
Take care.
Bye
Remmy.
P.S.: Teresea, how are you? Let us know about you.
kadida1
05-14-2007, 09:36 AM
Remmy,
Thanks for your concern. I hate to continue to write negative posts. but, everyday seems to be harder and harder to cope. I feel so alone even though I know I'm not. I live in a world of constant torture and despair I cannot hear anyone talking to me.Just the very many different sounds of tinnitus you name the sound and I have it very loud. I cry several times a day. I see my Dr again in July.
Teresea
Thanks for your concern. I hate to continue to write negative posts. but, everyday seems to be harder and harder to cope. I feel so alone even though I know I'm not. I live in a world of constant torture and despair I cannot hear anyone talking to me.Just the very many different sounds of tinnitus you name the sound and I have it very loud. I cry several times a day. I see my Dr again in July.
Teresea
fluffyshouse
05-14-2007, 12:54 PM
Hi Nik,
You asked me if I have had any relief from autophony from my previous surgeries. I have had only five days of relief from the autophony and that was last June when I had the silicon plug put in my left ear. I thought the plug had worked and then I heard a very loud boom in that ear, and the autophony came back. The five days without it was nice, though. That is the only relief I have had since this whole thing has started.
Dr. Poe will put in another plug in June to go with the one that is already there. So my left ear will have two silicon plugs in it and the right one, the calcium injected ear will have the Shea silicon tubing, if we decide on that for sure.
Dr. Poe called on Saturday. We were out of town again, and my husband's cell phone wasn't working at the time. Dr. Poe did leave a message saying that he had received the silicon tubing from Dr. Shea and it looks promising. He said he would call again to discuss it. I was upset that the cell phone server was down that day and that is why Dr. Poe's call didn't get to us. I am anxious to talk to him and make sure I am still going in June.
Nik, I was thinking that the packing in your ears was on the inside, behind your eardrums, which I didn't want. But I am assuming it's next to your eardrum on the outside, which makes me feel much better about having the packing done to me. I'm hoping Dr. Poe won't use it, but I'll bet he will if Dr. Shea used it on you.
Yes, I have had it before when I had the vent tubes removed when they were giving me so much trouble. I had packing which was called gel foam placed against my ear drum. Unlike you, where you get to go to your doc and have it removed, my doc wanted it to dissolve on it's own. I spent three months hearing the gel foam moving against my eardrum and could hear it crackling and popping as it broke down. I couldn't wash my hair as normal, because of the foam. Finally another ENT removed what was left.
So that is why I don't want the foam, but I feel better after you said you were going to have it removed. At least it's not on the inside and can easily be removed.
I'm very happy that your right ear gets better with each new day. I am confident that your left ear will clear up. I wonder what happened to make you have that infection.
You also asked about the calcuim injection. You are right that it produces new tissue, which is scar tissue, over time. Dr. Poe said up to a year it will produce it. I don't know how many injections Dr. Poe will do. I have had one in my right ear, not the silicon plug ear, but the ear that used to not be so bad. In spite of the injection, that ear is getting worse. I have not received any improvement in that ear because of the injection. The only change is it is getting worse with autophony.
I'll let you know when I talk to Dr. Poe about he silicon tubing. If you had not have had the infection, you would be home free, but that will come. Would you have it done again, if you had to?
Cathy
You asked me if I have had any relief from autophony from my previous surgeries. I have had only five days of relief from the autophony and that was last June when I had the silicon plug put in my left ear. I thought the plug had worked and then I heard a very loud boom in that ear, and the autophony came back. The five days without it was nice, though. That is the only relief I have had since this whole thing has started.
Dr. Poe will put in another plug in June to go with the one that is already there. So my left ear will have two silicon plugs in it and the right one, the calcium injected ear will have the Shea silicon tubing, if we decide on that for sure.
Dr. Poe called on Saturday. We were out of town again, and my husband's cell phone wasn't working at the time. Dr. Poe did leave a message saying that he had received the silicon tubing from Dr. Shea and it looks promising. He said he would call again to discuss it. I was upset that the cell phone server was down that day and that is why Dr. Poe's call didn't get to us. I am anxious to talk to him and make sure I am still going in June.
Nik, I was thinking that the packing in your ears was on the inside, behind your eardrums, which I didn't want. But I am assuming it's next to your eardrum on the outside, which makes me feel much better about having the packing done to me. I'm hoping Dr. Poe won't use it, but I'll bet he will if Dr. Shea used it on you.
Yes, I have had it before when I had the vent tubes removed when they were giving me so much trouble. I had packing which was called gel foam placed against my ear drum. Unlike you, where you get to go to your doc and have it removed, my doc wanted it to dissolve on it's own. I spent three months hearing the gel foam moving against my eardrum and could hear it crackling and popping as it broke down. I couldn't wash my hair as normal, because of the foam. Finally another ENT removed what was left.
So that is why I don't want the foam, but I feel better after you said you were going to have it removed. At least it's not on the inside and can easily be removed.
I'm very happy that your right ear gets better with each new day. I am confident that your left ear will clear up. I wonder what happened to make you have that infection.
You also asked about the calcuim injection. You are right that it produces new tissue, which is scar tissue, over time. Dr. Poe said up to a year it will produce it. I don't know how many injections Dr. Poe will do. I have had one in my right ear, not the silicon plug ear, but the ear that used to not be so bad. In spite of the injection, that ear is getting worse. I have not received any improvement in that ear because of the injection. The only change is it is getting worse with autophony.
I'll let you know when I talk to Dr. Poe about he silicon tubing. If you had not have had the infection, you would be home free, but that will come. Would you have it done again, if you had to?
Cathy
fluffyshouse
05-14-2007, 01:18 PM
Hello Addio,
Dr. Poe, of course, will remember you when I tell him we have been writing through the HB. He's awesome.
My E tubes are very wide, like an old fashioned hoop skirt. But Dr. Poe said he didn't think they were that bad. I am thinking they really are because the three different procedures that I have had have not worked. The next one just has to work. I can't keep going back to Boston every few months. Luckily, our insurance company has paid every cent. Our only expense has been airfare and hotel. I have been lucky in that way. I don't know if our insurance will keep paying.
I think you are right when you said the silicon plug is a radical solution, but I also think it's the same as the cartilage graft, but the plug won't break down. The cartilage graft that I had on the left ear didn't even work for a minute. I woke up in the recovery room sitting up, with autophony. How's that for discouragment? But I am not giving up, yet.
I had a worse sore throat with the silicon plug surgery than the cartilage graft one. It was so bad I felt like my throat had been cut. That will happen again in June. Dr. Poe said it was because it took longer to place the silicon plug and more instruments used that the cartilage graft. So maybe in that way it is more radical.
I'm glad you don't have the feeling of stuffed ears or any earaches. I do, and I think I have other issues as well. It might be because of my jaw, or that my E tubes are so floppy that they plug up at times causing the stuffy feeling, and then will stick open and leave me with autophony. I'm just guessing. I seem to have other issues that none of you other PET friends have. I'm glad for you in that way.
You have had more troubles than I have had with the seawater infection and the cholesteatomoa. That sounds awful. I sure hope the calcium paste injections are what you needed for a permanant fix.
You asked if I had seen the silicon plug before Dr. Poe put it in. No, I didn't. I know that it is very small. I didn't see any pictures of it either, just the one in the scope. I didn't even think to ask Dr. Poe.
I'm glad that you don't have any problems when you exercise with your left ear. Running, like what you like to do, would really jar your ears so it sounds like you have a really good base of the calcuim paste in there holding things together.
Congratulations on your weight loss. Keep running. My husband likes to run, bike and swim. He competes in triathalons. He just did one over the weekend in the southern part of our state, down by the Grand Canyon, if you have heard of that. He placed third in his age group. He is 55. He would have gotten second place, but he went down the wrong path at the finish line and had to double back.
Cathy
Dr. Poe, of course, will remember you when I tell him we have been writing through the HB. He's awesome.
My E tubes are very wide, like an old fashioned hoop skirt. But Dr. Poe said he didn't think they were that bad. I am thinking they really are because the three different procedures that I have had have not worked. The next one just has to work. I can't keep going back to Boston every few months. Luckily, our insurance company has paid every cent. Our only expense has been airfare and hotel. I have been lucky in that way. I don't know if our insurance will keep paying.
I think you are right when you said the silicon plug is a radical solution, but I also think it's the same as the cartilage graft, but the plug won't break down. The cartilage graft that I had on the left ear didn't even work for a minute. I woke up in the recovery room sitting up, with autophony. How's that for discouragment? But I am not giving up, yet.
I had a worse sore throat with the silicon plug surgery than the cartilage graft one. It was so bad I felt like my throat had been cut. That will happen again in June. Dr. Poe said it was because it took longer to place the silicon plug and more instruments used that the cartilage graft. So maybe in that way it is more radical.
I'm glad you don't have the feeling of stuffed ears or any earaches. I do, and I think I have other issues as well. It might be because of my jaw, or that my E tubes are so floppy that they plug up at times causing the stuffy feeling, and then will stick open and leave me with autophony. I'm just guessing. I seem to have other issues that none of you other PET friends have. I'm glad for you in that way.
You have had more troubles than I have had with the seawater infection and the cholesteatomoa. That sounds awful. I sure hope the calcium paste injections are what you needed for a permanant fix.
You asked if I had seen the silicon plug before Dr. Poe put it in. No, I didn't. I know that it is very small. I didn't see any pictures of it either, just the one in the scope. I didn't even think to ask Dr. Poe.
I'm glad that you don't have any problems when you exercise with your left ear. Running, like what you like to do, would really jar your ears so it sounds like you have a really good base of the calcuim paste in there holding things together.
Congratulations on your weight loss. Keep running. My husband likes to run, bike and swim. He competes in triathalons. He just did one over the weekend in the southern part of our state, down by the Grand Canyon, if you have heard of that. He placed third in his age group. He is 55. He would have gotten second place, but he went down the wrong path at the finish line and had to double back.
Cathy
fluffyshouse
05-14-2007, 01:21 PM
Nik,
I forgot to ask you if you had any pain after your surgery? Did your eardrum hurt? I am afraid of pain because I have so much on one side of my head, I don't want more.
Cathy
I forgot to ask you if you had any pain after your surgery? Did your eardrum hurt? I am afraid of pain because I have so much on one side of my head, I don't want more.
Cathy
Addio
05-14-2007, 06:07 PM
...also I paid in cash for my op and it is nowhere near Poe's costs because it is a simple procedure...
...
Hi Nik,
Can you tell us what you paid for your surgery... I mean all expenses involved your treatment for treating both ears (costs for hotel and flight excluded)
Can you also tell us how much time your surgery took for both ears?
Thanks!
Addio
...
Hi Nik,
Can you tell us what you paid for your surgery... I mean all expenses involved your treatment for treating both ears (costs for hotel and flight excluded)
Can you also tell us how much time your surgery took for both ears?
Thanks!
Addio
Addio
05-14-2007, 07:03 PM
Hi Cathy,
Thanks for your answer.
Yes, you are lucky you get every cent paid for you. Let's hope your insurance will keep paying. I am still involved with my insurance company here to get some of my expenses back and I have a good insurance policy and I pay a lot for it. It's really absurd.
On the other hand I am lucky because I have a good result now from the surgery. My left side is still perfectly fixed and my right side has improved a lot and can still improve because of the scarring and healing process :) Dr. Poe is the best.
I had no pain from the surgery and no complications afterwards. In my opinion I could not have had any better way to correct my ET's. If this result would be forever, it would be swell!! :)
Cathy, it must be very discouraging, waking up from the cartilage graft surgery and having autophony :eek: Did you not ask for some extra sleep and to have your ET correct a little bit more? What about insurance? It is strange don't you think? Buy a new car and you get a few years warranty. This should also be possible for our ET's ;)
Yes, even when I run I don't have any problems in my left ear, no autophony and there is also no obstruction. That's so nice to be able to sport and a normal functioning ET :)
I hope for you your surgery in June with the silicon plug will be less painful as the last one. Painless I hope. and that this one will function perfectly for you and stay there for a lifetime!
Thanks, yes I loss all that weight, only by running and eating healthy. I wanted to be in good shape before the surgery and now I like to maintain it. It's not difficult, as long as I continue exercise.
Addio
Thanks for your answer.
Yes, you are lucky you get every cent paid for you. Let's hope your insurance will keep paying. I am still involved with my insurance company here to get some of my expenses back and I have a good insurance policy and I pay a lot for it. It's really absurd.
On the other hand I am lucky because I have a good result now from the surgery. My left side is still perfectly fixed and my right side has improved a lot and can still improve because of the scarring and healing process :) Dr. Poe is the best.
I had no pain from the surgery and no complications afterwards. In my opinion I could not have had any better way to correct my ET's. If this result would be forever, it would be swell!! :)
Cathy, it must be very discouraging, waking up from the cartilage graft surgery and having autophony :eek: Did you not ask for some extra sleep and to have your ET correct a little bit more? What about insurance? It is strange don't you think? Buy a new car and you get a few years warranty. This should also be possible for our ET's ;)
Yes, even when I run I don't have any problems in my left ear, no autophony and there is also no obstruction. That's so nice to be able to sport and a normal functioning ET :)
I hope for you your surgery in June with the silicon plug will be less painful as the last one. Painless I hope. and that this one will function perfectly for you and stay there for a lifetime!
Thanks, yes I loss all that weight, only by running and eating healthy. I wanted to be in good shape before the surgery and now I like to maintain it. It's not difficult, as long as I continue exercise.
Addio
KSM79
05-15-2007, 12:21 PM
Nik,
Hows your ear doing? Has the fluid started to drain? I am always curious to know how you're recovering!!
Later
Kunal
Hows your ear doing? Has the fluid started to drain? I am always curious to know how you're recovering!!
Later
Kunal
Addio
05-15-2007, 07:15 PM
Addio,
When I say a simple procedure, this is exactly what it is for experienced docs like Shea, the man could do it with his eyes closed, he simply elevates the eardrums and inserts the teflon tubing and then reattaches the eardrum. Simple.
My surgery took approx 45 mins bothsides, this includes the insertion of two teflon tubes in both e.t and plus the insertion of vent.tubes in both drums.
As for the costs, I cannot disclose that info here on HB, you know why!!!
However, I do know how much your surgery cost from reading your post when you got back from Boston and I can tell you it cost a quarter of what you paid.
Nik
Hi Nik,
Thanks for your answers ;)
I hope for you Dr. Shea did not closed his eyes all the time during your surgery :D
Nik, don't be afraid to tell about the costs. That was not the reason of my "you know why" situation. That is allowed, because I let it know to everyone here before and it was a long time on this thread. No problem!
I recieved 5,500 US$ refund from the MEEI (my deposit was too much:)). Total costs now is about 21,000 US$. That's 16,000 Euro. That is all costs except hotel and flight. But I had both ears done.
Yes, it's still expensive but concerning my health that is not an issue and I choose for treatment and doctor I trust the most.
This evening I ran more then an hour and my right ear also felt very good. It's incredible. I felt so good. Before I inform Dr. Poe about my recovery I still wait a little while. I also need a tympanogram and sonotubometric measurement to have eardrums and ET ventilation checked, to be 100% sure everything is working fine. Till now it feels all ok.
Bye, Addio
When I say a simple procedure, this is exactly what it is for experienced docs like Shea, the man could do it with his eyes closed, he simply elevates the eardrums and inserts the teflon tubing and then reattaches the eardrum. Simple.
My surgery took approx 45 mins bothsides, this includes the insertion of two teflon tubes in both e.t and plus the insertion of vent.tubes in both drums.
As for the costs, I cannot disclose that info here on HB, you know why!!!
However, I do know how much your surgery cost from reading your post when you got back from Boston and I can tell you it cost a quarter of what you paid.
Nik
Hi Nik,
Thanks for your answers ;)
I hope for you Dr. Shea did not closed his eyes all the time during your surgery :D
Nik, don't be afraid to tell about the costs. That was not the reason of my "you know why" situation. That is allowed, because I let it know to everyone here before and it was a long time on this thread. No problem!
I recieved 5,500 US$ refund from the MEEI (my deposit was too much:)). Total costs now is about 21,000 US$. That's 16,000 Euro. That is all costs except hotel and flight. But I had both ears done.
Yes, it's still expensive but concerning my health that is not an issue and I choose for treatment and doctor I trust the most.
This evening I ran more then an hour and my right ear also felt very good. It's incredible. I felt so good. Before I inform Dr. Poe about my recovery I still wait a little while. I also need a tympanogram and sonotubometric measurement to have eardrums and ET ventilation checked, to be 100% sure everything is working fine. Till now it feels all ok.
Bye, Addio
fluffyshouse
05-20-2007, 01:48 AM
Dear Nik,
You asked me to let you know when we talked to Dr. Poe about the Shea silicon tubing. My husband talked to him today, Saturday. Dr. Poe has received, as he called it, the surgical kit. He had received a sample of it before to look at it before receiving the actual one to be placed in my ear.
My husband didn't asked about what kind of dialogue that took place between him and Dr. Shea. So I don't know about that. I hope to have time to ask him before going to sleep before the surgery. I am interested in knowing, too.
Dr. Poe is going to insert the silicon tubing up through my throat, instead of the Shea method of going through the ear drum. I never felt good about that, and was going to ask Dr. Poe if it was possible to go through the mouth since he would be up there anyway to place another silicon plug in my other ear.
I was so happy to hear that he thought of it before I asked. So I shouldn't have to have any packing, but don't know for sure. I have decided to fly home instead of taking the brutal train ride across the county to where we live, so will have the dreaded vent tubes. I hope I'm not sorry with getting more hearing loss. I will have them out as soon as I return home, which will be three days after the actual surgery.
I know that I will have a winner of a sore throat, but that should be the only pain, I would imagine since my ear drum won't be cut. I have never had any pain in my ear with the last silicon plug nor the cartilage graft.
My husband mentioned about you and the infection and fluid build-up you have. Dr. Poe said that can happen no matter what method is used to try and correct PET. It means that you have some over correction in that ear.
Hopefully, now that you have had the packing and vent tubes removed and the inside packing is dissolving, the swelling will go down and you will be healed. I can't understand how you could be over corrected in just one ear. I guess not all Eustachian tubes are created equal.
How did your doc suck the fluid out? I assume it was from your inner ear. But did your doc go through the vent tube hole to clean the fluid out?
I am still so afraid of my surgery. I am paranoid of what you have in your one ear or waking up in recovery again still with autophony. I think I need some magic this time.
But we will see. We have made our plane reservations. We will leave on June 17th and will return on June 20th. I will be thinking about all of you especially during that time.
Nik, I'm very glad that you have found out that there are different docs in England who might be able to help you if the tubing doesn't work out.
Addio, if you read this, I agree with you that there should be some sort of warranty as with buying a car. But there isn't.
I will let you all know what happens to me just as soon as I am able to write. I won't make you wait. The anesthetic really takes a toll on me. I just can't wake up for several days after. And then it takes me weeks to get my energy level back up.
Cathy
You asked me to let you know when we talked to Dr. Poe about the Shea silicon tubing. My husband talked to him today, Saturday. Dr. Poe has received, as he called it, the surgical kit. He had received a sample of it before to look at it before receiving the actual one to be placed in my ear.
My husband didn't asked about what kind of dialogue that took place between him and Dr. Shea. So I don't know about that. I hope to have time to ask him before going to sleep before the surgery. I am interested in knowing, too.
Dr. Poe is going to insert the silicon tubing up through my throat, instead of the Shea method of going through the ear drum. I never felt good about that, and was going to ask Dr. Poe if it was possible to go through the mouth since he would be up there anyway to place another silicon plug in my other ear.
I was so happy to hear that he thought of it before I asked. So I shouldn't have to have any packing, but don't know for sure. I have decided to fly home instead of taking the brutal train ride across the county to where we live, so will have the dreaded vent tubes. I hope I'm not sorry with getting more hearing loss. I will have them out as soon as I return home, which will be three days after the actual surgery.
I know that I will have a winner of a sore throat, but that should be the only pain, I would imagine since my ear drum won't be cut. I have never had any pain in my ear with the last silicon plug nor the cartilage graft.
My husband mentioned about you and the infection and fluid build-up you have. Dr. Poe said that can happen no matter what method is used to try and correct PET. It means that you have some over correction in that ear.
Hopefully, now that you have had the packing and vent tubes removed and the inside packing is dissolving, the swelling will go down and you will be healed. I can't understand how you could be over corrected in just one ear. I guess not all Eustachian tubes are created equal.
How did your doc suck the fluid out? I assume it was from your inner ear. But did your doc go through the vent tube hole to clean the fluid out?
I am still so afraid of my surgery. I am paranoid of what you have in your one ear or waking up in recovery again still with autophony. I think I need some magic this time.
But we will see. We have made our plane reservations. We will leave on June 17th and will return on June 20th. I will be thinking about all of you especially during that time.
Nik, I'm very glad that you have found out that there are different docs in England who might be able to help you if the tubing doesn't work out.
Addio, if you read this, I agree with you that there should be some sort of warranty as with buying a car. But there isn't.
I will let you all know what happens to me just as soon as I am able to write. I won't make you wait. The anesthetic really takes a toll on me. I just can't wake up for several days after. And then it takes me weeks to get my energy level back up.
Cathy
popup_poppy
05-20-2007, 07:55 AM
Hello Nik, Addio, and Cathy,
I have been following your posts closely for some time now, and finally found out how to join you. As you can guess, I have PET too, quite severe, on both sides, with autophony in the left e.tube all day long. The right one is always popping - 'poppy' - but on the verge of becoming completely patent as well. The feeling that, after six years, it is still progressing makes me sad and quite desperate at times. That I don't have to explain to you.
Since reading about dr. Poe, and later about dr. Shea, I am considering to have surgery for my PET, and have a normal life again. But like all of you I am very scared of the operation itself too: that it might not help or create other problems. Being cured seems to be a long way of trial and error, especially for the 'bad cases', that it is the only certainty we have. That is why, in my eyes, the three of you, having taken such big steps, are very brave. And it is really great too that you are willing to share your hopes and fears and experiences with your fellow sufferers. That is the first thing I wanted to express.
But how encouraging your stories may be, reading them makes it even more difficult to decide what to do. It is such a complex matter... Dr. Poe seems to be the one who is most experienced and advanced in PET, trying to reconstruct the e.tube and have it function like it should, with different approaches. But it seems risky too (that is why he is so careful), and is very expensive: I wouldn't be able to go forth and back, if needed (in case of undercorrection, or like Addio may have to). Dr. Shea's treatment (getting rid of the symptoms (autophony), which would suit me just fine...) seems simpler and is a lot cheaper. But like Cathy, I am afraid of having my eardrums cut, of the packing in my ears for weeks, the possible fluid build-up, the vent tubes... It is bad enough in my ears and head as it is.
That is why Cathy's last message made my heart jump: having Shea's silicon tubing, not through the eardrum but through the throat, sounds like having the best of both procedures. No cutting in the e.t.tissue (because this 'plug' is supposed to be inserted in the 'open space' of the tube, which should make it reversible as well), and no cutting of the eardrums either! I am curious what the others think about that.
It also raises some questions, which you probably won't be able to answer before your surgery, Cathy. I always understood Shea's plug is supposed to get 'stuck' in the narow part of the e.t.tube (maybe Nik can tell more about that?), and that the best way for that is to insert it through the eardrum. In your throat, the opening of the e.tube is widest, how could it possible get stuck in there? Wouldn't it just fall out? Do you think dr. Poe inserts it all the way into the e.tube, up to the narrow end, but only from the other side? Cathy, maybe you are tired of all the PET stuff for now, and just want to have the surgery done, and then get back to us. I would understand that very well. But I hope you'll write some more before you go over.
(I would really appreciate any answer from all of you.)
Take good care,
your PET-companion Lucie
I have been following your posts closely for some time now, and finally found out how to join you. As you can guess, I have PET too, quite severe, on both sides, with autophony in the left e.tube all day long. The right one is always popping - 'poppy' - but on the verge of becoming completely patent as well. The feeling that, after six years, it is still progressing makes me sad and quite desperate at times. That I don't have to explain to you.
Since reading about dr. Poe, and later about dr. Shea, I am considering to have surgery for my PET, and have a normal life again. But like all of you I am very scared of the operation itself too: that it might not help or create other problems. Being cured seems to be a long way of trial and error, especially for the 'bad cases', that it is the only certainty we have. That is why, in my eyes, the three of you, having taken such big steps, are very brave. And it is really great too that you are willing to share your hopes and fears and experiences with your fellow sufferers. That is the first thing I wanted to express.
But how encouraging your stories may be, reading them makes it even more difficult to decide what to do. It is such a complex matter... Dr. Poe seems to be the one who is most experienced and advanced in PET, trying to reconstruct the e.tube and have it function like it should, with different approaches. But it seems risky too (that is why he is so careful), and is very expensive: I wouldn't be able to go forth and back, if needed (in case of undercorrection, or like Addio may have to). Dr. Shea's treatment (getting rid of the symptoms (autophony), which would suit me just fine...) seems simpler and is a lot cheaper. But like Cathy, I am afraid of having my eardrums cut, of the packing in my ears for weeks, the possible fluid build-up, the vent tubes... It is bad enough in my ears and head as it is.
That is why Cathy's last message made my heart jump: having Shea's silicon tubing, not through the eardrum but through the throat, sounds like having the best of both procedures. No cutting in the e.t.tissue (because this 'plug' is supposed to be inserted in the 'open space' of the tube, which should make it reversible as well), and no cutting of the eardrums either! I am curious what the others think about that.
It also raises some questions, which you probably won't be able to answer before your surgery, Cathy. I always understood Shea's plug is supposed to get 'stuck' in the narow part of the e.t.tube (maybe Nik can tell more about that?), and that the best way for that is to insert it through the eardrum. In your throat, the opening of the e.tube is widest, how could it possible get stuck in there? Wouldn't it just fall out? Do you think dr. Poe inserts it all the way into the e.tube, up to the narrow end, but only from the other side? Cathy, maybe you are tired of all the PET stuff for now, and just want to have the surgery done, and then get back to us. I would understand that very well. But I hope you'll write some more before you go over.
(I would really appreciate any answer from all of you.)
Take good care,
your PET-companion Lucie
Addio
05-20-2007, 10:13 AM
...I have decided to fly home instead of taking the brutal train ride across the county to where we live, so will have the dreaded vent tubes. I hope I'm not sorry with getting more hearing loss. I will have them out as soon as I return home, which will be three days after the actual surgery.
...
Hi Cathy,
About the vent tubes. Don't be afraid for them! Like I had, you also have general anesthesia and first of all you will not notice the tubes being inserted. Dr. Poe gave me T-drains, cut to 1/3th of normal length. These are small, very flexible and soft (green) vent tubes. After my surgery I was not able to feel them. I suppose Dr. Poe will give you the same like I had.
I never felt anything of the vent tubes. When I woke up I was amazed I didn't feel anything in my ear. Only the small cottonwool. But that is no pain :) and of course the throat, but that was because of the breathing tube.
Besides air pressure changes caused by flying, the vent tubes also prevent your middle ear from obstruction of your ET's which is normal, short after the surgery when your ET's tissue is still swollen by the surgery.
Dr. Poe will advise you not to hurry for taking them out. I had my vent tubes removed after a month and I only had the injections done. Your surgery will be more intensive and maybe you better leave them for a longer time. You better ask Dr. Poe what is wise to do.
I hope your next surgery will relieve you from all your symptoms and give you a P.E.T free life. It's an exciting time for you now making all these plans. You are lucky you are not allone. You need someone to take care for you after your surgery. Do you stay close to the MEEI? in the JJH maybe? I was there last time. It's close to the MEEI, river and subway. The weather will be much better then in March, last time I was there.
I hope for you everything will be Ok. Take care,
Addio
...
Hi Cathy,
About the vent tubes. Don't be afraid for them! Like I had, you also have general anesthesia and first of all you will not notice the tubes being inserted. Dr. Poe gave me T-drains, cut to 1/3th of normal length. These are small, very flexible and soft (green) vent tubes. After my surgery I was not able to feel them. I suppose Dr. Poe will give you the same like I had.
I never felt anything of the vent tubes. When I woke up I was amazed I didn't feel anything in my ear. Only the small cottonwool. But that is no pain :) and of course the throat, but that was because of the breathing tube.
Besides air pressure changes caused by flying, the vent tubes also prevent your middle ear from obstruction of your ET's which is normal, short after the surgery when your ET's tissue is still swollen by the surgery.
Dr. Poe will advise you not to hurry for taking them out. I had my vent tubes removed after a month and I only had the injections done. Your surgery will be more intensive and maybe you better leave them for a longer time. You better ask Dr. Poe what is wise to do.
I hope your next surgery will relieve you from all your symptoms and give you a P.E.T free life. It's an exciting time for you now making all these plans. You are lucky you are not allone. You need someone to take care for you after your surgery. Do you stay close to the MEEI? in the JJH maybe? I was there last time. It's close to the MEEI, river and subway. The weather will be much better then in March, last time I was there.
I hope for you everything will be Ok. Take care,
Addio
Addio
05-20-2007, 10:42 AM
...In your throat, the opening of the e.tube is widest, how could it possible get stuck in there? Wouldn't it just fall out? Do you think dr. Poe inserts it all the way into the e.tube, up to the narrow end, but only from the other side? ...
Hi Lucie/poppy_puppy,
Welcome to the HB and joining us. You already know a lot I see because you already read our threads. Very good! ;)
The ET is 1.5 inch long. That is a little less then 4 cm. I guess that's not too long distance to cover for Dr. Poe for a patient under general anesthesia. He is working from the wide part of the ET to the narrow part of the ET from the throat. I guess the teflon tube is flexible? Nik, Cathy do you know if it is flexible? I think it has to be, because the ET has a curvy shape.
Dr. Poe is specialized in this area between the nose and the ear and uses minimum ear intervention. That's good news for those who don't want their eardrums opend to get inside and the ear package recovery.
Good thing to hear Dr. Poe is interested in many ways to solve PET and also talks to colleagues far away. This way Dr. Poe can help more and more patients with PET and has a range of possible alternatives to offer for every patient individually.
Hi Lucie/poppy_puppy,
Welcome to the HB and joining us. You already know a lot I see because you already read our threads. Very good! ;)
The ET is 1.5 inch long. That is a little less then 4 cm. I guess that's not too long distance to cover for Dr. Poe for a patient under general anesthesia. He is working from the wide part of the ET to the narrow part of the ET from the throat. I guess the teflon tube is flexible? Nik, Cathy do you know if it is flexible? I think it has to be, because the ET has a curvy shape.
Dr. Poe is specialized in this area between the nose and the ear and uses minimum ear intervention. That's good news for those who don't want their eardrums opend to get inside and the ear package recovery.
Good thing to hear Dr. Poe is interested in many ways to solve PET and also talks to colleagues far away. This way Dr. Poe can help more and more patients with PET and has a range of possible alternatives to offer for every patient individually.
fluffyshouse
05-20-2007, 03:11 PM
Hello Lucie,
Welcome, my friend to the Health Boards.
I won't quit writing before my surgery if you don't want me to. I felt after yesterday's post, I wouldn't have any more to say.
It sounds like you have PET like I did before last September, then my already vulnerable right ear gave way, and I now have PET in both ears. My one ear, like yours, has autophony all day long, the other ear about three to four days a week, but it's huge when I have it. I cannot talk at all when it acts up.
I can't answer your questions about the silicon tubing and how it will stay in place going up through the throat. I just know that I trust Dr. Poe and know that he will make sure it is done correctly, but just from another opening.
I will have a list of questions for Dr. Poe while I am hooked up to the IV to put me under. He is very patient and will answer every question I have before I go to sleep.
I think you should call Dr. Poe. He will call you back. You can say we have met through the Health Boards. I don't mind you using my name. He will know me when you tell him he's going to use the Shea silicon tubing on me. He knows that I talk to others through this source. It is how I found him. He will answer all of your questions with patience and kindness.
Please keep in touch with us. This upcoming surgery will be my third with Dr. Poe. I am excited that my ear drum will not be involved only because messing with it a year and a half ago caused my autophony. I wouldn't think anything of going through my ear drum if not for the first experience I had.
Thank you for joining us for support.
Cathy
Welcome, my friend to the Health Boards.
I won't quit writing before my surgery if you don't want me to. I felt after yesterday's post, I wouldn't have any more to say.
It sounds like you have PET like I did before last September, then my already vulnerable right ear gave way, and I now have PET in both ears. My one ear, like yours, has autophony all day long, the other ear about three to four days a week, but it's huge when I have it. I cannot talk at all when it acts up.
I can't answer your questions about the silicon tubing and how it will stay in place going up through the throat. I just know that I trust Dr. Poe and know that he will make sure it is done correctly, but just from another opening.
I will have a list of questions for Dr. Poe while I am hooked up to the IV to put me under. He is very patient and will answer every question I have before I go to sleep.
I think you should call Dr. Poe. He will call you back. You can say we have met through the Health Boards. I don't mind you using my name. He will know me when you tell him he's going to use the Shea silicon tubing on me. He knows that I talk to others through this source. It is how I found him. He will answer all of your questions with patience and kindness.
Please keep in touch with us. This upcoming surgery will be my third with Dr. Poe. I am excited that my ear drum will not be involved only because messing with it a year and a half ago caused my autophony. I wouldn't think anything of going through my ear drum if not for the first experience I had.
Thank you for joining us for support.
Cathy
fluffyshouse
05-20-2007, 03:49 PM
Hello Addio,
I didn't know my last post would get such a response. I feel popular. I appreciate everyone's thoughts on this new approach that Dr. Poe is willing to do by inserting the tubing through the throat. I finally feel at peace knowing that I should try yet again to get the demon fixed in my head.
About the vent tubes, I had them from Dr. Poe last September to fly home so I wouldn't have to experience the train again, so I am experienced in the vent tubes like you had. I had the green ones, too, that were cut. But unlike you, I did feel them and one of them was poking something in my inner ear causing pain. Dr. Poe encouraged me then and will in June to get the vent tubes out as soon as I get home. They are only inserted for me to fly home. I can't hear as well either, so am extra eager to get them removed. I almost have to read lips, but as soon as the tubes are removed from my ear drum, I can hear again. I know I am odd and an unusual case. My children had vent tubes as kids and they saved their hearing. They were not a big deal at all for them. Dr. Poe has told me that I have unusually pliable eardrums, so maybe that is why they are so sensitive to vent tubes.
When I had them removed a few days after my surgery in September, it was in the ENT's office. As they were being removed, I thought that now I know what a toilet feels like when it is being plunged. There was no pain whatsoever, but the sound was very odd. It really did sound like a toilet being plunged.
My husband will be with me and after already having two surgeries with a huge sore throat, he knows that as soon as I wake up, he will give me sips of water. There is a much sorer throat with the silicon plug because it takes longer, and there is more equipment and latex gloved hands up my throat, and with the breathing tube in there as well, I don't know how they have room for anything else. Dr. Poe apologized for this, which wasn't necessary. The sore throat really was at its worst until I could swallow my first pain pill. And then the sore throat is gone after three days. Vanilla milkshakes are the best for me, like I have mentioned to you before. It is really a small part of the whole ordeal. Making the decision to have it done and making that first call is the hardest part of all, I think.
Addio, we are staying at the Jeffries House, which is so close to Mass Eye and Ear. I assume that is what you were talking about by mentioning the JJH. The traffic is so awful in that area, so we will be able to walk to MEEI.
All of you are so nice to give me such welcome encouragment. Now that we know that Dr. Shea and Dr. Poe have been in contact, maybe a for sure cure is not too far off. They are both so great!
Just a side note, I envy those of you who live in England. I was there for a garden tour last June of 2006. I love every inch of your country and can't wait to return to investigate more hidden gardens and historical sites. We have huge mountains ranges here where I live, but I sure loved your country.
Cathy
I didn't know my last post would get such a response. I feel popular. I appreciate everyone's thoughts on this new approach that Dr. Poe is willing to do by inserting the tubing through the throat. I finally feel at peace knowing that I should try yet again to get the demon fixed in my head.
About the vent tubes, I had them from Dr. Poe last September to fly home so I wouldn't have to experience the train again, so I am experienced in the vent tubes like you had. I had the green ones, too, that were cut. But unlike you, I did feel them and one of them was poking something in my inner ear causing pain. Dr. Poe encouraged me then and will in June to get the vent tubes out as soon as I get home. They are only inserted for me to fly home. I can't hear as well either, so am extra eager to get them removed. I almost have to read lips, but as soon as the tubes are removed from my ear drum, I can hear again. I know I am odd and an unusual case. My children had vent tubes as kids and they saved their hearing. They were not a big deal at all for them. Dr. Poe has told me that I have unusually pliable eardrums, so maybe that is why they are so sensitive to vent tubes.
When I had them removed a few days after my surgery in September, it was in the ENT's office. As they were being removed, I thought that now I know what a toilet feels like when it is being plunged. There was no pain whatsoever, but the sound was very odd. It really did sound like a toilet being plunged.
My husband will be with me and after already having two surgeries with a huge sore throat, he knows that as soon as I wake up, he will give me sips of water. There is a much sorer throat with the silicon plug because it takes longer, and there is more equipment and latex gloved hands up my throat, and with the breathing tube in there as well, I don't know how they have room for anything else. Dr. Poe apologized for this, which wasn't necessary. The sore throat really was at its worst until I could swallow my first pain pill. And then the sore throat is gone after three days. Vanilla milkshakes are the best for me, like I have mentioned to you before. It is really a small part of the whole ordeal. Making the decision to have it done and making that first call is the hardest part of all, I think.
Addio, we are staying at the Jeffries House, which is so close to Mass Eye and Ear. I assume that is what you were talking about by mentioning the JJH. The traffic is so awful in that area, so we will be able to walk to MEEI.
All of you are so nice to give me such welcome encouragment. Now that we know that Dr. Shea and Dr. Poe have been in contact, maybe a for sure cure is not too far off. They are both so great!
Just a side note, I envy those of you who live in England. I was there for a garden tour last June of 2006. I love every inch of your country and can't wait to return to investigate more hidden gardens and historical sites. We have huge mountains ranges here where I live, but I sure loved your country.
Cathy
fluffyshouse
05-20-2007, 04:16 PM
Dear Nik,
I can't wait to find out how Dr. Poe will be able to wedge the silicon tubing in place. I don't understand how he will do it, but really, whether you go through the eardrum or up the throat, you still end up at the same place. It's all connected. You either go through the front door or the back door, but you are still going to end up in the house, so to speak. I know that he has put a lot of thought in to the procedure I have coming up. I will be eager to report back to you. I want to get a video of the whole thing. I don't know why I want to see the procedure via a video. I can't even stand it when I prune a plant outside and it bleeds. I am so prickly when it comes to blood and our insides.
I was very sorry to hear that you are having even more problems with your left ear. You must have been very stuffed up to have felt you had to blow your nose. I am afraid to ever blowing my nose, even not having had recent surgery. I just have to wipe a lot. Oh, the things we have to talk about here on the Health Boards.
And your eardrum ripping, that must have hurt. But it will heal. I just know it will. Maybe the packing will dissolve a little bit faster now, having a bigger hole in the eardrum. Just a thought. I knew a man who poked his eardrum with a cotton swab, causing a hole in the eardrum. It hurt for a few days, and then it healed. You shouldn't have too much longer to wait for the pain to ease.
I know about the risk of the carotid artery near to where Dr. Poe works. I am very thankful that things have improved, hopefully, preventing such a mistake. I can't imagine it being done too often, otherwise this kind of surgery wouldn't be allowed.
You have been our Dr. Shea pioneer and I will be Dr. Poe's pioneer for the silicon plug and the silicon tubing, the Poe way. We will soon find out what will happen to me.
You also take care, and no more nose blowing. Dr. Poe told me never to blow my nose because it is so bad on the ears. If I absolutely have to, I bend over as far as I can, and gently do it. But it's ever so slight. Also, I have mentioned this before on the Health Boards, never stifle a sneeze along with never blowing your nose.
If you hadn't just had your vent tubes removed, you would have been okay blwoing your nose. Your eardrum will close up again, in no time. Each day should hopefully get better for you. Please keep us posted. We care about you.
I think I have answered everyone's posts, but let me know if I haven't. I apologize for not having better answers at this point. I usually ask more questions of Dr. Poe, but my husband talked to him yesterday, so I don't know anymore than what I have reported to you. But I will get more answers, like I said before. My husband doesn't ask many questions of anyone.
Take care, Nik. It will be okay.
Cathy
I can't wait to find out how Dr. Poe will be able to wedge the silicon tubing in place. I don't understand how he will do it, but really, whether you go through the eardrum or up the throat, you still end up at the same place. It's all connected. You either go through the front door or the back door, but you are still going to end up in the house, so to speak. I know that he has put a lot of thought in to the procedure I have coming up. I will be eager to report back to you. I want to get a video of the whole thing. I don't know why I want to see the procedure via a video. I can't even stand it when I prune a plant outside and it bleeds. I am so prickly when it comes to blood and our insides.
I was very sorry to hear that you are having even more problems with your left ear. You must have been very stuffed up to have felt you had to blow your nose. I am afraid to ever blowing my nose, even not having had recent surgery. I just have to wipe a lot. Oh, the things we have to talk about here on the Health Boards.
And your eardrum ripping, that must have hurt. But it will heal. I just know it will. Maybe the packing will dissolve a little bit faster now, having a bigger hole in the eardrum. Just a thought. I knew a man who poked his eardrum with a cotton swab, causing a hole in the eardrum. It hurt for a few days, and then it healed. You shouldn't have too much longer to wait for the pain to ease.
I know about the risk of the carotid artery near to where Dr. Poe works. I am very thankful that things have improved, hopefully, preventing such a mistake. I can't imagine it being done too often, otherwise this kind of surgery wouldn't be allowed.
You have been our Dr. Shea pioneer and I will be Dr. Poe's pioneer for the silicon plug and the silicon tubing, the Poe way. We will soon find out what will happen to me.
You also take care, and no more nose blowing. Dr. Poe told me never to blow my nose because it is so bad on the ears. If I absolutely have to, I bend over as far as I can, and gently do it. But it's ever so slight. Also, I have mentioned this before on the Health Boards, never stifle a sneeze along with never blowing your nose.
If you hadn't just had your vent tubes removed, you would have been okay blwoing your nose. Your eardrum will close up again, in no time. Each day should hopefully get better for you. Please keep us posted. We care about you.
I think I have answered everyone's posts, but let me know if I haven't. I apologize for not having better answers at this point. I usually ask more questions of Dr. Poe, but my husband talked to him yesterday, so I don't know anymore than what I have reported to you. But I will get more answers, like I said before. My husband doesn't ask many questions of anyone.
Take care, Nik. It will be okay.
Cathy
popup_poppy
05-21-2007, 06:01 PM
Hi there, all of you,
Thank you for giving me such a warm welcome, in a way it feels like coming home. No one, not even our dearest ones, can understand what it is to have p.e.t. If I had never experienced it myself, I wouldn't understand it either. It is great to talk about it, knowing we don't have to explain.
I loved reading all of your posts, some of them made me smile or even laugh. It is wonderful to see we can still keep our sense of humour.
Cathy, you are right, we are real pioneers. Well - at least the three of you are, I am still preparing myself to go west! Although in my own way, I am trying to get things moving as well. I told my new ENT (nr 10) about dr. Poe and dr. Shea. He was very hesitant about reconstructing the E.tube, but he was willing to investigate the Shea-method and contact dr. Shea. (He also knows the drs in the UK that Nik must be referring to, it is a small world.) Now I can tell him about dr. Poe too, the way he wants to perform it. It seems a real development. I also discovered there is an ENT congress in Turkey in June (probably before your surgery, Cathy) where dr. Poe is going to perform a (p.e.t.?) surgery. My ENT will be there too, I'll ask him if he can try to talk with dr. Poe about it. (By the way, your husband seems a real nice guy, looking after you so well, please say hello from me!)
You are also right that I should make an appointment with dr. Poe anyway, if only for a consult. He is so experienced, and he has all the equipment to investigate what kind of p.e.t. we have - every case seems to be different.
I will contact him right away, I understands it takes months before I could see him anyway. By then, I'll know from you what I might be up to. (I really have a real good feeling about te procedure he wants to follow with you!)
Addio, I'm happy for you that your calcium injections work, and it is good to hear that surgery doesn't have to be as bad as one (me) would expect.
I really hope it satys like this a long time, you've had more operations, haven't you, is there one coming up as well?
Nik, I am sorry to hear about your ear drum being ripped, allthough the way you told it made me laugh. It is not funny at all, it is very painful. But I can image how difficult it is NOT to blow your nose when you have a cold! To be honest, I think the ripping was caused by the fluid build-up behind the eardrum. I don't think it was healed enough, it must have been still to vulnerable. Maybe they should have given you another packing (in your outer ear) to protect it? But don't worry, now the fluid is gone, I am sure it will heal much quicker.
Well, I was planning to tell a funny story too (all about ears), but it is getting late, so you'll have to wait till next time. Meanwhile, please take good care of yourselves,
your friend Lucie
Thank you for giving me such a warm welcome, in a way it feels like coming home. No one, not even our dearest ones, can understand what it is to have p.e.t. If I had never experienced it myself, I wouldn't understand it either. It is great to talk about it, knowing we don't have to explain.
I loved reading all of your posts, some of them made me smile or even laugh. It is wonderful to see we can still keep our sense of humour.
Cathy, you are right, we are real pioneers. Well - at least the three of you are, I am still preparing myself to go west! Although in my own way, I am trying to get things moving as well. I told my new ENT (nr 10) about dr. Poe and dr. Shea. He was very hesitant about reconstructing the E.tube, but he was willing to investigate the Shea-method and contact dr. Shea. (He also knows the drs in the UK that Nik must be referring to, it is a small world.) Now I can tell him about dr. Poe too, the way he wants to perform it. It seems a real development. I also discovered there is an ENT congress in Turkey in June (probably before your surgery, Cathy) where dr. Poe is going to perform a (p.e.t.?) surgery. My ENT will be there too, I'll ask him if he can try to talk with dr. Poe about it. (By the way, your husband seems a real nice guy, looking after you so well, please say hello from me!)
You are also right that I should make an appointment with dr. Poe anyway, if only for a consult. He is so experienced, and he has all the equipment to investigate what kind of p.e.t. we have - every case seems to be different.
I will contact him right away, I understands it takes months before I could see him anyway. By then, I'll know from you what I might be up to. (I really have a real good feeling about te procedure he wants to follow with you!)
Addio, I'm happy for you that your calcium injections work, and it is good to hear that surgery doesn't have to be as bad as one (me) would expect.
I really hope it satys like this a long time, you've had more operations, haven't you, is there one coming up as well?
Nik, I am sorry to hear about your ear drum being ripped, allthough the way you told it made me laugh. It is not funny at all, it is very painful. But I can image how difficult it is NOT to blow your nose when you have a cold! To be honest, I think the ripping was caused by the fluid build-up behind the eardrum. I don't think it was healed enough, it must have been still to vulnerable. Maybe they should have given you another packing (in your outer ear) to protect it? But don't worry, now the fluid is gone, I am sure it will heal much quicker.
Well, I was planning to tell a funny story too (all about ears), but it is getting late, so you'll have to wait till next time. Meanwhile, please take good care of yourselves,
your friend Lucie
Addio
05-21-2007, 08:00 PM
Hi Cathy,
I recognize what you told about having your vent tubes removed. Last time at home I had my vent tubes from the surgery removed by my local ENT dr., I also experienced that very strange sound. All sounds were very sharp. Rustle sounds felt amplified. It was so strange. This disappeared after a few days.
Sometimes having the vent tubes placed also causes a shock for the ears. I mostly experienced that when I had a local anaesthesia. Last time at the surgery from Dr. Poe I didn't feel a thing, as I told you before. However, my eardrums are very stiff from the scar tissue. I guess that makes a difference (?)
Yes Cathy, by the JJH I mean the John Jeffries House. It's close to the MEEI and the Charles River. I have been running around the river before I got the surgery. It was very cold then. Brrr. If you like museum, you can also visit the science museum if you have time for it? It's very close to the JJH and quicker to walk then when you travel by subway. The breakfast in the JJH however is terrible :eek: . I cannot start my day on sweet cakes and coffee only. Fortunately there is a fridge and little kitchen in the hotel room :) Well, I guess you already know the place, you have been there before.
Hi Lucie,
Welcome home! ;) Yes I have had more surgeries before. Soon I have another surgery in the Netherlands. It's for my right ear. I have a 2nd look then (to check on a possible recurring cholesteatoma) and I also have a reconstruction then of my hearing bones. I hope it is successful, because this surgery can give me some of my hearing back in my right ear. I hope at least 30 Db extra. Then I maybe don't need my hearing aid all the time. I hope so.
I also read about the congress in Turkey. However, it is in 2008 (15-20 June next year) in Antalya.
Hi Nik,
You scared me about the ripping of the eardrum :eek: . It will take away the fluid inside, but it's not the way anyone likes. It sure must be very painful. Are you sure it heals by itself? Have you been to your local ENT to check it out. How large is the rip? If it's too large it maybe will not heal by itself... Is your eardrum ripped where it was opened before by Dr. Shea to reach the ET? The weakest place rips first.
I hope for you it's not too serious injury. It sounds scaring.
Take care,
Addio
I recognize what you told about having your vent tubes removed. Last time at home I had my vent tubes from the surgery removed by my local ENT dr., I also experienced that very strange sound. All sounds were very sharp. Rustle sounds felt amplified. It was so strange. This disappeared after a few days.
Sometimes having the vent tubes placed also causes a shock for the ears. I mostly experienced that when I had a local anaesthesia. Last time at the surgery from Dr. Poe I didn't feel a thing, as I told you before. However, my eardrums are very stiff from the scar tissue. I guess that makes a difference (?)
Yes Cathy, by the JJH I mean the John Jeffries House. It's close to the MEEI and the Charles River. I have been running around the river before I got the surgery. It was very cold then. Brrr. If you like museum, you can also visit the science museum if you have time for it? It's very close to the JJH and quicker to walk then when you travel by subway. The breakfast in the JJH however is terrible :eek: . I cannot start my day on sweet cakes and coffee only. Fortunately there is a fridge and little kitchen in the hotel room :) Well, I guess you already know the place, you have been there before.
Hi Lucie,
Welcome home! ;) Yes I have had more surgeries before. Soon I have another surgery in the Netherlands. It's for my right ear. I have a 2nd look then (to check on a possible recurring cholesteatoma) and I also have a reconstruction then of my hearing bones. I hope it is successful, because this surgery can give me some of my hearing back in my right ear. I hope at least 30 Db extra. Then I maybe don't need my hearing aid all the time. I hope so.
I also read about the congress in Turkey. However, it is in 2008 (15-20 June next year) in Antalya.
Hi Nik,
You scared me about the ripping of the eardrum :eek: . It will take away the fluid inside, but it's not the way anyone likes. It sure must be very painful. Are you sure it heals by itself? Have you been to your local ENT to check it out. How large is the rip? If it's too large it maybe will not heal by itself... Is your eardrum ripped where it was opened before by Dr. Shea to reach the ET? The weakest place rips first.
I hope for you it's not too serious injury. It sounds scaring.
Take care,
Addio
fluffyshouse
05-21-2007, 10:42 PM
Dear Lucie,
I'm so glad you have decided to join us. It makes me wonder how many people out there are reading all of our posts, too, and not writing, but thinking about it. I was reading the different PET posts for a year and a half before I dared write in.
I told my husband hello for you.
Dr. Poe travels a lot trying to convince other ENTs to learn how to treat PET. I have asked several ENTs here where I live to please learn how to fix people like us, and to attend Dr. Poe's teaching sessions. The ones I talk to don't want to learn anything new. They are happy doing what they are doing. One said it sounds too complicated, and the couple of others said they send their patients to Dr. Poe, he's the expert. Not everyone can travel to Boston. And not all insurances will pay for medical expenses out of the patients' home state. I'm so lucky that mine will. We are waiting to see if they will cover yet another PET surgery from Dr. Poe.
I am wondering why there haven't been more people writing in about their PET from the United States. Maybe they are all just getting it fixed by Dr. Poe or Dr. Shea and don't need this site to vent on.
I still wonder about Teresa and how she is doing. Teresa, I care, in case you are reading this. Don't give up.
Addio, thank you for the suggestion of the science museum close the Jefferies House. We aren't taking the time this trip for anything but surgery, a day of rest and then travel home. For my past surgeries, we added extra days for site seeing, but I'm site seen out for Boston. To me, I hear the word Boston and think ear surgery. This will be my fourth trip back there in just over a year. I have heard that the Kennedy Library and the art museum there are amazing, in case you have to go back, which I hope you don't as a patient.
Someday, I hope to go there as a tourist and really enjoy the beautiful city that it is. I love history and it is filled with it. We have seen the major sites and loved it, but I knew that my surgery was lurking in the background so couldn't enjoy everything as I could have otherwise.
My husband will enjoy running in the places where you have run, Addio. I am not a runner and am lucky to walk to the mailbox each day and back. Really that's not true, just kidding. I am a passionate gardener, so I get my workouts that way.
Nik,
I hope you are much better today.
Cathy
I'm so glad you have decided to join us. It makes me wonder how many people out there are reading all of our posts, too, and not writing, but thinking about it. I was reading the different PET posts for a year and a half before I dared write in.
I told my husband hello for you.
Dr. Poe travels a lot trying to convince other ENTs to learn how to treat PET. I have asked several ENTs here where I live to please learn how to fix people like us, and to attend Dr. Poe's teaching sessions. The ones I talk to don't want to learn anything new. They are happy doing what they are doing. One said it sounds too complicated, and the couple of others said they send their patients to Dr. Poe, he's the expert. Not everyone can travel to Boston. And not all insurances will pay for medical expenses out of the patients' home state. I'm so lucky that mine will. We are waiting to see if they will cover yet another PET surgery from Dr. Poe.
I am wondering why there haven't been more people writing in about their PET from the United States. Maybe they are all just getting it fixed by Dr. Poe or Dr. Shea and don't need this site to vent on.
I still wonder about Teresa and how she is doing. Teresa, I care, in case you are reading this. Don't give up.
Addio, thank you for the suggestion of the science museum close the Jefferies House. We aren't taking the time this trip for anything but surgery, a day of rest and then travel home. For my past surgeries, we added extra days for site seeing, but I'm site seen out for Boston. To me, I hear the word Boston and think ear surgery. This will be my fourth trip back there in just over a year. I have heard that the Kennedy Library and the art museum there are amazing, in case you have to go back, which I hope you don't as a patient.
Someday, I hope to go there as a tourist and really enjoy the beautiful city that it is. I love history and it is filled with it. We have seen the major sites and loved it, but I knew that my surgery was lurking in the background so couldn't enjoy everything as I could have otherwise.
My husband will enjoy running in the places where you have run, Addio. I am not a runner and am lucky to walk to the mailbox each day and back. Really that's not true, just kidding. I am a passionate gardener, so I get my workouts that way.
Nik,
I hope you are much better today.
Cathy
fluffyshouse
05-22-2007, 12:11 AM
Hi again, Addio,
I just got thinking that my husband will need some ideas of what to do the day after my surgery. We haven't stayed at the John Jefferies house before. We have stayed at various hotels so I don't know what is close to the JJH except for Mass Eye and Ear.
So if you can think of anything else my husband, Brad can do, please let me know. He won't want to go too far from the sleeping me, though. He will need to check on me from time to time, but he'll want to get out. The science museum appealed to him, so I told him I would ask you since you have stayed in that place recently. I think the thing he will like the most is running in the area.
Thank you for thinking about it and letting me know. We usually rent a car but not this time. That city is traffic crazy around MEEI. Don't you think?
Cathy
I just got thinking that my husband will need some ideas of what to do the day after my surgery. We haven't stayed at the John Jefferies house before. We have stayed at various hotels so I don't know what is close to the JJH except for Mass Eye and Ear.
So if you can think of anything else my husband, Brad can do, please let me know. He won't want to go too far from the sleeping me, though. He will need to check on me from time to time, but he'll want to get out. The science museum appealed to him, so I told him I would ask you since you have stayed in that place recently. I think the thing he will like the most is running in the area.
Thank you for thinking about it and letting me know. We usually rent a car but not this time. That city is traffic crazy around MEEI. Don't you think?
Cathy
Remmy
05-23-2007, 04:31 AM
Hi folks.
Cathy, finally you decided what to do and I'm really glad: I know how difficult and struggling choosing the right way may be!!!
Poe is your decision once again and I think it is a good choice, not only becasue he is the master of PET (Dr. Shea and Dr. Kujawski too are great at it), but manily because he is deeply aware of your situation.
GOOD LUCK!!!
It is good news that ENT's in UK are PET aware. we have to see how their surgery develops in time.
Nik, I see you're having such a bad time with your left ear.
Be patient: give your left ear some more time then we'll see and decide together. Before a final evaluation about your surgery, let's wait for the package to dissolve and for the hole to close.
Did you inform Dr. Shea about the hole in your left ear? I think you should!!!
Bye.
Remmy.
P.S.: Hey, Teresea...... how are you? Are you coping with all that's happening to you? Are you thinking to go to Boston again? Did you notify Dr. Poe about your bad situation?
Cathy, finally you decided what to do and I'm really glad: I know how difficult and struggling choosing the right way may be!!!
Poe is your decision once again and I think it is a good choice, not only becasue he is the master of PET (Dr. Shea and Dr. Kujawski too are great at it), but manily because he is deeply aware of your situation.
GOOD LUCK!!!
It is good news that ENT's in UK are PET aware. we have to see how their surgery develops in time.
Nik, I see you're having such a bad time with your left ear.
Be patient: give your left ear some more time then we'll see and decide together. Before a final evaluation about your surgery, let's wait for the package to dissolve and for the hole to close.
Did you inform Dr. Shea about the hole in your left ear? I think you should!!!
Bye.
Remmy.
P.S.: Hey, Teresea...... how are you? Are you coping with all that's happening to you? Are you thinking to go to Boston again? Did you notify Dr. Poe about your bad situation?
winterj
05-23-2007, 02:20 PM
Hello PET friends,
I guess all the old PET threads I was on dried up, and I didn't realize a new one had started!
I just got back from my first visit with Dr. Poe. He said my case isn't as bad as a lot of others, but it's bad enough to drive me crazy at times. For those who have had surgery, or are on the way to surgery, did you try Patul-End and Premarin first? I hope it's ok to talk pre-surgery on this thread.
I guess all the old PET threads I was on dried up, and I didn't realize a new one had started!
I just got back from my first visit with Dr. Poe. He said my case isn't as bad as a lot of others, but it's bad enough to drive me crazy at times. For those who have had surgery, or are on the way to surgery, did you try Patul-End and Premarin first? I hope it's ok to talk pre-surgery on this thread.
winterj
05-23-2007, 06:14 PM
Nik,
Thanks for replying. I have tried the drops, without much success. However, Dr. Poe said I should try them daily for two weeks, and then I will know if they are working. I'm not exactly excited about this, since I have felt the burn you speak of, and it's pretty unpleasant. My PET symptoms are somewhat sporadic, so once they get bad again, maybe I won't mind the burn so much.
Did Dr. Shea have you try any other remedies before your surgery?
-Jenny
Thanks for replying. I have tried the drops, without much success. However, Dr. Poe said I should try them daily for two weeks, and then I will know if they are working. I'm not exactly excited about this, since I have felt the burn you speak of, and it's pretty unpleasant. My PET symptoms are somewhat sporadic, so once they get bad again, maybe I won't mind the burn so much.
Did Dr. Shea have you try any other remedies before your surgery?
-Jenny
fluffyshouse
05-24-2007, 12:31 AM
Dear Jenny,
I tried the Premarin nose drops, drops of potassium idodide in juice and the Patul -end nose drops. I think I may have misspelled some of those words, but you know what I'm talking about.
The nose drops and juice drops were tried at the same time and the Patul-end (nose acid) a few months later.
Like Nik the Patul-end made things worse for me. The burning was unbelievable and gave me a migraine headache every time I used them.
None of the above remedies worked for me.
That is why I know my only hope is surgery. It is getting closer for me now. I have my physical and EKG appt, and a hearing test all scheduled now. I'm afraid for the hearing test because I think my hearing is worse. I'm sure because the PET in that ear doesn't let up all day long and it has affected my hearing. I don't think I want to know the results of the test. I'll just FAX it to Dr. Poe without looking at it.
Good luck, Jenny. I'm so sorry you have what we all have.
Cathy
I tried the Premarin nose drops, drops of potassium idodide in juice and the Patul -end nose drops. I think I may have misspelled some of those words, but you know what I'm talking about.
The nose drops and juice drops were tried at the same time and the Patul-end (nose acid) a few months later.
Like Nik the Patul-end made things worse for me. The burning was unbelievable and gave me a migraine headache every time I used them.
None of the above remedies worked for me.
That is why I know my only hope is surgery. It is getting closer for me now. I have my physical and EKG appt, and a hearing test all scheduled now. I'm afraid for the hearing test because I think my hearing is worse. I'm sure because the PET in that ear doesn't let up all day long and it has affected my hearing. I don't think I want to know the results of the test. I'll just FAX it to Dr. Poe without looking at it.
Good luck, Jenny. I'm so sorry you have what we all have.
Cathy
Remmy
05-24-2007, 05:15 AM
Hello PET friends,
I guess all the old PET threads I was on dried up, and I didn't realize a new one had started!
I just got back from my first visit with Dr. Poe. He said my case isn't as bad as a lot of others, but it's bad enough to drive me crazy at times. For those who have had surgery, or are on the way to surgery, did you try Patul-End and Premarin first? I hope it's ok to talk pre-surgery on this thread.
Hi Winterj.
I'm very glad to see that you finally found this thread.
I was wondering where you could be.
It is OK to talk about whatever you want.
Take care.
Bye
Remmy.
I guess all the old PET threads I was on dried up, and I didn't realize a new one had started!
I just got back from my first visit with Dr. Poe. He said my case isn't as bad as a lot of others, but it's bad enough to drive me crazy at times. For those who have had surgery, or are on the way to surgery, did you try Patul-End and Premarin first? I hope it's ok to talk pre-surgery on this thread.
Hi Winterj.
I'm very glad to see that you finally found this thread.
I was wondering where you could be.
It is OK to talk about whatever you want.
Take care.
Bye
Remmy.
winterj
05-24-2007, 02:44 PM
Thanks Remmy :)
Now I am trying to find a doctor for LPR, and waiting for my PET to kick in enough to make Patul-End worth starting up again.
Now I am trying to find a doctor for LPR, and waiting for my PET to kick in enough to make Patul-End worth starting up again.
Remmy
05-29-2007, 11:15 AM
Hi PET friends.
A small post to keep our thread on the top of the list, so that we do not lose it and can find it easily.
Bye
Remmy.
A small post to keep our thread on the top of the list, so that we do not lose it and can find it easily.
Bye
Remmy.
winterj
05-29-2007, 02:18 PM
I'm wondering if Patul-End or Premarin have worked for anyone, or if everyone ends up going for surgery eventually.
popup_poppy
05-30-2007, 07:36 AM
Dear PETfriends,
Sorry it has been a while. Sometimes I feel like I'm done talking about PET alltogether, just as the rest of you, but we aren't, ofcourse. We will have to talk about it as long as needed to find a cure.
Cathy, how are you now? I hope you get LESS nervous as the surgery date approaches, in stead of more. With me, it seems to work that way. Once you cannot change things anymore, you just have to surrender, and trust the doctor. And dr. Poe is a good doctor to trust. He will make things better, not worse. Please let us know how you are.
Nik, how are you doing? I am curious about your 'bad' ear. It sounds to me the surgery just might not have succeeded 100% the first time. I don't think you are 'impatient' at all. Ofcourse you expected to be rid of it in BOTH ears. About you complaints: when I had a cold, there was a lot of fluid in my inner ear. I experienced the same as you: loud echoing of my voice (like speaking in a brarrel) and a full feeling. I figured out for myself it was due to the fluid behind (and touching) my eardrum. Could it be that with you too? And is it clearing up now?
Jenny, welcome to our thread. I don't know about these drops, never tried them, with real bad PET (autophony all day long), there is no point. Also: Patul-End is very aggressive and damages your mucosa. I reckon Premarin might only help if it is connected to the cause of your PET. I assume dr. Poe suggested them to try because your case is not severe enough to operate. If anyone, he is the one who should know if those drops have worked for people in the past.
Addio, is the calcium paste still in place? Is the 'slight' PET you still experience getting better? Up to now, you are one of our succes stories.
Remmy, thanks for keeping our thread alive (and kicking).
Hope to hear from all of you again soon,
take care, your friend Lucy
Sorry it has been a while. Sometimes I feel like I'm done talking about PET alltogether, just as the rest of you, but we aren't, ofcourse. We will have to talk about it as long as needed to find a cure.
Cathy, how are you now? I hope you get LESS nervous as the surgery date approaches, in stead of more. With me, it seems to work that way. Once you cannot change things anymore, you just have to surrender, and trust the doctor. And dr. Poe is a good doctor to trust. He will make things better, not worse. Please let us know how you are.
Nik, how are you doing? I am curious about your 'bad' ear. It sounds to me the surgery just might not have succeeded 100% the first time. I don't think you are 'impatient' at all. Ofcourse you expected to be rid of it in BOTH ears. About you complaints: when I had a cold, there was a lot of fluid in my inner ear. I experienced the same as you: loud echoing of my voice (like speaking in a brarrel) and a full feeling. I figured out for myself it was due to the fluid behind (and touching) my eardrum. Could it be that with you too? And is it clearing up now?
Jenny, welcome to our thread. I don't know about these drops, never tried them, with real bad PET (autophony all day long), there is no point. Also: Patul-End is very aggressive and damages your mucosa. I reckon Premarin might only help if it is connected to the cause of your PET. I assume dr. Poe suggested them to try because your case is not severe enough to operate. If anyone, he is the one who should know if those drops have worked for people in the past.
Addio, is the calcium paste still in place? Is the 'slight' PET you still experience getting better? Up to now, you are one of our succes stories.
Remmy, thanks for keeping our thread alive (and kicking).
Hope to hear from all of you again soon,
take care, your friend Lucy
fluffyshouse
06-01-2007, 12:42 PM
Hi Lucy,
Thank you for asking about me. I am doing well, just waiting to go to Boston. I have all the paperwork and have my physical today, Friday. Then I will have everything I need to go. I'll let all of you know how it went. Unfortunately, I am scheduled for a late afternoon surgery time, so am not happy about that. I guess we will just walk around all day in Boston waiting for the time to go.
I'll write when I get home.
Cathy
Thank you for asking about me. I am doing well, just waiting to go to Boston. I have all the paperwork and have my physical today, Friday. Then I will have everything I need to go. I'll let all of you know how it went. Unfortunately, I am scheduled for a late afternoon surgery time, so am not happy about that. I guess we will just walk around all day in Boston waiting for the time to go.
I'll write when I get home.
Cathy
Addio
06-02-2007, 07:43 AM
Good luck Cathy!
We all be thinking about you when you are there in Boston.
You told us you leave to Boston at June the 17th and return on June 20th. When is the exact date you'll have the surgery? (I guess Monday June 18th?)
We all cross our fingers for you then.
Good luck!
Addio
We all be thinking about you when you are there in Boston.
You told us you leave to Boston at June the 17th and return on June 20th. When is the exact date you'll have the surgery? (I guess Monday June 18th?)
We all cross our fingers for you then.
Good luck!
Addio
fluffyshouse
06-02-2007, 02:41 PM
Hello Addio,
Yes, you are right. My surgery is June 18th, so we will get there the day before. Thank you for your kindness and thoughts. I appreciate it. I sure hope this surgery will work, not only for me, but for all of you.
With friendship,
Cathy
Yes, you are right. My surgery is June 18th, so we will get there the day before. Thank you for your kindness and thoughts. I appreciate it. I sure hope this surgery will work, not only for me, but for all of you.
With friendship,
Cathy
fluffyshouse
06-04-2007, 12:44 AM
Hi Nik,
Thank you. I will do what you say. I will write more to all of you later.
Cathy
Thank you. I will do what you say. I will write more to all of you later.
Cathy
Remmy
06-04-2007, 10:35 AM
Cathy.... what else?
I join my thougths and wishes to theirs.
GOOD LUCK.
Bye
Remmy.
I join my thougths and wishes to theirs.
GOOD LUCK.
Bye
Remmy.
Remmy
06-09-2007, 06:44 AM
Hi all.
How you doing?
Take care.
Bye
Remmy.
How you doing?
Take care.
Bye
Remmy.
Addio
06-11-2007, 03:07 PM
Addio,
I have seen my doc and he checked my eardrums. I have been experiencing hearing loss on both sides since the vent.tubes were taken out and the holes in my drums closed up. My doc tells me the hearing loss is due to the scar on my drums and the eardrums have gone hard so they do not vibrate correctly and are red in appearance, Can you tell me if you experienced any hearing loss when your eardrums healed up? Did you notice your eardrums not vibrating correctly because they had gone hard? What are your experiences?
I look forward to hearing your experiences.
Thank you. Take care
Nik
Hi Nik,
How long are your vent tubes now out of your eardrums? It's normal when the tubes are taken out/put in, you can experience some loss or hear differently. That normally will disappear in time.
What your doc tells you is possible, however did you had the vent tubes many times before like I had (30 till 40 times)? In that case you can speak about many scar tissue on the drum causing these efects. But if it's the only time you had the vent tubes, I don't understand you already experience hearing loss?
How much is your hearing loss actually? How many dB? Did you got an audiogram?
I can hardly believe it's caused by the scar if it's your first vent tube??
Bye,
Addio
I have seen my doc and he checked my eardrums. I have been experiencing hearing loss on both sides since the vent.tubes were taken out and the holes in my drums closed up. My doc tells me the hearing loss is due to the scar on my drums and the eardrums have gone hard so they do not vibrate correctly and are red in appearance, Can you tell me if you experienced any hearing loss when your eardrums healed up? Did you notice your eardrums not vibrating correctly because they had gone hard? What are your experiences?
I look forward to hearing your experiences.
Thank you. Take care
Nik
Hi Nik,
How long are your vent tubes now out of your eardrums? It's normal when the tubes are taken out/put in, you can experience some loss or hear differently. That normally will disappear in time.
What your doc tells you is possible, however did you had the vent tubes many times before like I had (30 till 40 times)? In that case you can speak about many scar tissue on the drum causing these efects. But if it's the only time you had the vent tubes, I don't understand you already experience hearing loss?
How much is your hearing loss actually? How many dB? Did you got an audiogram?
I can hardly believe it's caused by the scar if it's your first vent tube??
Bye,
Addio
RealforReal
06-14-2007, 03:21 AM
Hi Lotje.
Here are some information I have. Hope it can help.
Dr. Shea's method consists of one ore more lengths of teflon (lenght 2-3 cm, diameter 1 - 2 mm each, as far as I've undestood), that is inserted into the hole of your eustachian tube from the internal orifice: they say this surgery is very simple, since they make a slice in your drum, lift it up and reach the internal orifice of the tube; this orifice is always open (it is normal) and the lenghts of silicon are inserted just there. Finally, they close the drum.
Hi, I'm new here.
I don't understand exactly this method. What does the teflon tube do exactly? How it narrows the tube? Does anyone have some pics or some draws for help me to understand? Thank you very much.
Here are some information I have. Hope it can help.
Dr. Shea's method consists of one ore more lengths of teflon (lenght 2-3 cm, diameter 1 - 2 mm each, as far as I've undestood), that is inserted into the hole of your eustachian tube from the internal orifice: they say this surgery is very simple, since they make a slice in your drum, lift it up and reach the internal orifice of the tube; this orifice is always open (it is normal) and the lenghts of silicon are inserted just there. Finally, they close the drum.
Hi, I'm new here.
I don't understand exactly this method. What does the teflon tube do exactly? How it narrows the tube? Does anyone have some pics or some draws for help me to understand? Thank you very much.
Remmy
06-14-2007, 08:46 AM
Hi RealforReal.
Welcome to our forum... that is yours as well, of course.
As you know, the e-tube is a virtual passageway that connects your middle ear with the back of your nose. It consists of two parts:
- The bone part, which is closer to the middle ear and is always open
- The cartilagineous part, which is closer to the back of our nose; this part acts as a VALVE, that is normally closed and actively opens during swallowing or yawning. So, it MUST stay close at rest.
The teflon length (or more than one if needed) are inserted into the bone part of the e-tube, which is accessed after the drum has been lifted up.
The length should be enough to narrow the bone part and also the valve part of the tube, so that there is less room for the air and the sound to reach the middle ear.
That's all I've understood and I can say about this surgery.... since I'm not a doctor. Sorry :-)
What about you? How long have you been a PET sufferer (and, as a result, a PET friend of us all :-)) ?????
Take care
Bye
Remmy.
Welcome to our forum... that is yours as well, of course.
As you know, the e-tube is a virtual passageway that connects your middle ear with the back of your nose. It consists of two parts:
- The bone part, which is closer to the middle ear and is always open
- The cartilagineous part, which is closer to the back of our nose; this part acts as a VALVE, that is normally closed and actively opens during swallowing or yawning. So, it MUST stay close at rest.
The teflon length (or more than one if needed) are inserted into the bone part of the e-tube, which is accessed after the drum has been lifted up.
The length should be enough to narrow the bone part and also the valve part of the tube, so that there is less room for the air and the sound to reach the middle ear.
That's all I've understood and I can say about this surgery.... since I'm not a doctor. Sorry :-)
What about you? How long have you been a PET sufferer (and, as a result, a PET friend of us all :-)) ?????
Take care
Bye
Remmy.
RealforReal
06-15-2007, 06:39 AM
The teflon length (or more than one if needed) are inserted into the bone part of the e-tube, which is accessed after the drum has been lifted up.
The length should be enough to narrow the bone part and also the valve part of the tube, so that there is less room for the air and the sound to reach the middle ear.
Sorry, still i can't understand exactly. If i could find a picture, i would maybe have an idea but like this, it's hard.
How the bone part can be narrowed? It's a bone, shape cannot really change, no?
And about the teflon tube, how it narrows the Eustachian tube? There is something like "glue" on it?
About me, i have P.E.T. on my right ear since 1 year. But unlike the others, i don't hear my own breathing. And if i turn my head far to the left or to the right, "barrel effect" stops when i talk. But still i think i can feel my ear like closed. I say "i think" because i am not sure of this. It may be in fact my brain who get used to have a special feeling in the right ear. So if it leaves a moment, it still gives the impression that i have something.
Anyway, it's quite strange... It may be half P.E.T. or E.T. dysfunction.
The first doctor i saw told me it was a dysfunction, meaning by that it was too closed.
The next doctors told me it was PET. So i don't know. I passed X-ray, but they saw nothing. :(
All tests seemed normal except the one where the diagnosis of continuously open eustachian tube is made with an auscultation tube from the patient's ear to the examiner's ear. Here, they said sound was louder. But is it sure? I don't know...
So soon, I will pass a CT scan, but as sometimes i read they see nothing too, i'm worried. Why they could see this problem on CT scan?
And is there anybody here who has the same symptoms than me?
( REMOVED )
The length should be enough to narrow the bone part and also the valve part of the tube, so that there is less room for the air and the sound to reach the middle ear.
Sorry, still i can't understand exactly. If i could find a picture, i would maybe have an idea but like this, it's hard.
How the bone part can be narrowed? It's a bone, shape cannot really change, no?
And about the teflon tube, how it narrows the Eustachian tube? There is something like "glue" on it?
About me, i have P.E.T. on my right ear since 1 year. But unlike the others, i don't hear my own breathing. And if i turn my head far to the left or to the right, "barrel effect" stops when i talk. But still i think i can feel my ear like closed. I say "i think" because i am not sure of this. It may be in fact my brain who get used to have a special feeling in the right ear. So if it leaves a moment, it still gives the impression that i have something.
Anyway, it's quite strange... It may be half P.E.T. or E.T. dysfunction.
The first doctor i saw told me it was a dysfunction, meaning by that it was too closed.
The next doctors told me it was PET. So i don't know. I passed X-ray, but they saw nothing. :(
All tests seemed normal except the one where the diagnosis of continuously open eustachian tube is made with an auscultation tube from the patient's ear to the examiner's ear. Here, they said sound was louder. But is it sure? I don't know...
So soon, I will pass a CT scan, but as sometimes i read they see nothing too, i'm worried. Why they could see this problem on CT scan?
And is there anybody here who has the same symptoms than me?
( REMOVED )
moderator2
06-15-2007, 10:04 AM
Do not ask members to violate the posting policy.
fluffyshouse
06-15-2007, 07:52 PM
Hi PET friends,
I just wanted to say good-bye before I leave for Boston on Sunday to have my surgery with Dr. Poe on Monday. Thank you for all your well wishes. I'll write just as soon as I can, probably when I return home the end of next week.
I am going to ask Dr. Poe if I can see the Shea silicon tubing before the surgery. Then I can discribe it to you.
Cathy
I just wanted to say good-bye before I leave for Boston on Sunday to have my surgery with Dr. Poe on Monday. Thank you for all your well wishes. I'll write just as soon as I can, probably when I return home the end of next week.
I am going to ask Dr. Poe if I can see the Shea silicon tubing before the surgery. Then I can discribe it to you.
Cathy
popup_poppy
06-16-2007, 11:47 AM
Dear Cathy,
I wish you all the luck you need for a smooth & succesfull surgery. We are all excited and will keep our fingers crossed Monday, all day long (just to be sure). Can you imagine how relieved you will feel afterwards?
Please say hello from all of us to Dr. Poe, he must be one of the most mentioned doctors on the web.
Have a good journey, and a good stay,
best wishes for your husband too,
your friend Lucie
I wish you all the luck you need for a smooth & succesfull surgery. We are all excited and will keep our fingers crossed Monday, all day long (just to be sure). Can you imagine how relieved you will feel afterwards?
Please say hello from all of us to Dr. Poe, he must be one of the most mentioned doctors on the web.
Have a good journey, and a good stay,
best wishes for your husband too,
your friend Lucie
fluffyshouse
06-16-2007, 01:33 PM
Dear Lucie,
Thank you for the good wishes. I will be thinking about all of you on Monday, too, eager to report back. I feel much better knowing that I have the best support group anywhere. I have found great benefits in knowing all of you on the HB. You give me strength.
I hope this surgery will be successful, not only for me, but for all of you, too, especially since it will be a first with the Shea tubing going up my throat and not through the ear. And a second silicon tube in my other ear. These are all different methods than have been mentioned here before.
Good luck to all of us.
Lucie, thank you again for writing on the HB.
Also, your friend,
Cathy
Thank you for the good wishes. I will be thinking about all of you on Monday, too, eager to report back. I feel much better knowing that I have the best support group anywhere. I have found great benefits in knowing all of you on the HB. You give me strength.
I hope this surgery will be successful, not only for me, but for all of you, too, especially since it will be a first with the Shea tubing going up my throat and not through the ear. And a second silicon tube in my other ear. These are all different methods than have been mentioned here before.
Good luck to all of us.
Lucie, thank you again for writing on the HB.
Also, your friend,
Cathy
Remmy
06-17-2007, 04:12 AM
Dear Cathy.
Am I late to wish you all the best?
I've just put a drop of glue between my fingers, before crossing them :-)
Bye
Remmy.
Am I late to wish you all the best?
I've just put a drop of glue between my fingers, before crossing them :-)
Bye
Remmy.
Remmy
06-17-2007, 04:18 AM
Sorry, still i can't understand exactly. If i could find a picture, i would maybe have an idea but like this, it's hard.
How the bone part can be narrowed? It's a bone, shape cannot really change, no?
And about the teflon tube, how it narrows the Eustachian tube? There is something like "glue" on it?
About me, i have P.E.T. on my right ear since 1 year. But unlike the others, i don't hear my own breathing. And if i turn my head far to the left or to the right, "barrel effect" stops when i talk. But still i think i can feel my ear like closed. I say "i think" because i am not sure of this. It may be in fact my brain who get used to have a special feeling in the right ear. So if it leaves a moment, it still gives the impression that i have something.
Anyway, it's quite strange... It may be half P.E.T. or E.T. dysfunction.
The first doctor i saw told me it was a dysfunction, meaning by that it was too closed.
The next doctors told me it was PET. So i don't know. I passed X-ray, but they saw nothing. :(
All tests seemed normal except the one where the diagnosis of continuously open eustachian tube is made with an auscultation tube from the patient's ear to the examiner's ear. Here, they said sound was louder. But is it sure? I don't know...
So soon, I will pass a CT scan, but as sometimes i read they see nothing too, i'm worried. Why they could see this problem on CT scan?
And is there anybody here who has the same symptoms than me?
( REMOVED )
Hi Real.
Your main symptoms appears to be autophony, which is the most relevant symptoms of PET.
Where do you live? You may get in touch with a PET aware ENT close to you.
Concerning the teflon tubing: as far as I understood, the lenghts are inserted into the tube which on turn get narrowed because it is partially obstructed by the lengths. It's like putting your fingers in a large tube: you do not close it, but the passage is narrower because of your finger.
Bye.
Remmy.
How the bone part can be narrowed? It's a bone, shape cannot really change, no?
And about the teflon tube, how it narrows the Eustachian tube? There is something like "glue" on it?
About me, i have P.E.T. on my right ear since 1 year. But unlike the others, i don't hear my own breathing. And if i turn my head far to the left or to the right, "barrel effect" stops when i talk. But still i think i can feel my ear like closed. I say "i think" because i am not sure of this. It may be in fact my brain who get used to have a special feeling in the right ear. So if it leaves a moment, it still gives the impression that i have something.
Anyway, it's quite strange... It may be half P.E.T. or E.T. dysfunction.
The first doctor i saw told me it was a dysfunction, meaning by that it was too closed.
The next doctors told me it was PET. So i don't know. I passed X-ray, but they saw nothing. :(
All tests seemed normal except the one where the diagnosis of continuously open eustachian tube is made with an auscultation tube from the patient's ear to the examiner's ear. Here, they said sound was louder. But is it sure? I don't know...
So soon, I will pass a CT scan, but as sometimes i read they see nothing too, i'm worried. Why they could see this problem on CT scan?
And is there anybody here who has the same symptoms than me?
( REMOVED )
Hi Real.
Your main symptoms appears to be autophony, which is the most relevant symptoms of PET.
Where do you live? You may get in touch with a PET aware ENT close to you.
Concerning the teflon tubing: as far as I understood, the lenghts are inserted into the tube which on turn get narrowed because it is partially obstructed by the lengths. It's like putting your fingers in a large tube: you do not close it, but the passage is narrower because of your finger.
Bye.
Remmy.
Addio
06-17-2007, 07:15 AM
Dear Cathy,