aja
06-06-2004, 09:42 PM
Hi Jeremy, lib,
thougth I'd just check in because it's been a while. I'm still in the same boat too? I'm living my life though, I reach a crisis point with my PET roughly every 2 months and then I start the coping cycle again.
lib, do you reckon that it's a bad idea to take the birth control pill if you have PET? I don't know whether it's safe or not. I read that hormone treatment can cause it at some stage during my research but I've never had a doctor confirm that. You must have seen poe by now, how did you get on? I've been thinking about visiting the shea clinic.
I thought I'd mention as well that I've been trying acid blockers for the acid reflux thing that apparently can cause it, I was also thinking of trying a mouth guard to wear at night because I grind my teeth and I was wondering if I could have TMJ.
lots of love to you both,
aja
thougth I'd just check in because it's been a while. I'm still in the same boat too? I'm living my life though, I reach a crisis point with my PET roughly every 2 months and then I start the coping cycle again.
lib, do you reckon that it's a bad idea to take the birth control pill if you have PET? I don't know whether it's safe or not. I read that hormone treatment can cause it at some stage during my research but I've never had a doctor confirm that. You must have seen poe by now, how did you get on? I've been thinking about visiting the shea clinic.
I thought I'd mention as well that I've been trying acid blockers for the acid reflux thing that apparently can cause it, I was also thinking of trying a mouth guard to wear at night because I grind my teeth and I was wondering if I could have TMJ.
lots of love to you both,
aja
Sponsor
JeremyR
06-15-2004, 12:13 PM
Hi aja,
Jeremy here,
Its very nice to hear from you again. Its official: I'm on the waiting list to go see Dr. Poe. I have an appointment in October. Dr. Poe sent me a very detailed letter describing his surgery for PET. It will be expensive if I go for it, but after nine years of PET, I'll do whatever it takes. As for a TMJ nightguard-I wear one of those sometimes because I grind my teeth at night. I don't think it will help my PET however. I'll keep you all updated.
Jeremy here,
Its very nice to hear from you again. Its official: I'm on the waiting list to go see Dr. Poe. I have an appointment in October. Dr. Poe sent me a very detailed letter describing his surgery for PET. It will be expensive if I go for it, but after nine years of PET, I'll do whatever it takes. As for a TMJ nightguard-I wear one of those sometimes because I grind my teeth at night. I don't think it will help my PET however. I'll keep you all updated.
aja
06-15-2004, 06:34 PM
Jeremy..yeah, it's just that I read somewhere that TMJ can cause PET.. the muscle tension being so close to the Eustachian tube etc. and I know I clench my jaw in my sleep and grind me teeth bit, i think everyone does to an extent but I thought it was another thing to try. I dunno. That's great that you're going to see Dr. Poe, I'd love to read that letter he sent you. Do tell me Jeremy what's the surgery he's suggesting for you? and how much is a fortune?
lib
06-15-2004, 09:04 PM
hi guys,
well i can tell you this, i asked dr. poe about tmj as i have it and he said it is a seperate issue, so i dont think it can cause it.
jeremy what did your letter say as far as surgery? i am going aug 9 for my first ear. i can tell you this about dr. poe, he is an excellent, caring, compassionate dr. and he knows his stuff. i love him! lib
well i can tell you this, i asked dr. poe about tmj as i have it and he said it is a seperate issue, so i dont think it can cause it.
jeremy what did your letter say as far as surgery? i am going aug 9 for my first ear. i can tell you this about dr. poe, he is an excellent, caring, compassionate dr. and he knows his stuff. i love him! lib
lib
06-15-2004, 09:09 PM
hi again,
jeremy what ins do you have? they may cover your visit, mine was covered thank god, so check into that also. lib
jeremy what ins do you have? they may cover your visit, mine was covered thank god, so check into that also. lib
PETboy
02-24-2005, 01:30 AM
Hi Jeremy,
How was your visit with Dr. Poe? Did you have your surgery done?
Please let me know. I too would like to visit him.
Thanks.
How was your visit with Dr. Poe? Did you have your surgery done?
Please let me know. I too would like to visit him.
Thanks.
JeremyR
02-24-2005, 02:45 PM
Hi PETboy,
Jeremy here,
I haven't posted for a while because I'm at square one with my ear problems again. Apparently, its not a patulous case. As for Dr. Poe, he is very good and he is definately the man to see if you have a patulous eustachian tube and want to pursue a surgical repair. He will show you what your E-tube looks like right in his office,and let you know if his surgery is appropriate. He told he is supposed to publish his initial resuts of his PET surgery sometime this sping.
hope this helps, JeremyR
Jeremy here,
I haven't posted for a while because I'm at square one with my ear problems again. Apparently, its not a patulous case. As for Dr. Poe, he is very good and he is definately the man to see if you have a patulous eustachian tube and want to pursue a surgical repair. He will show you what your E-tube looks like right in his office,and let you know if his surgery is appropriate. He told he is supposed to publish his initial resuts of his PET surgery sometime this sping.
hope this helps, JeremyR
aja
02-25-2005, 02:56 PM
Jeremy, if you don't have PET, what do you have???!!!!! I'm having suspicions about mine because I tried the drops from Santa Barbara and they didn't work at all, just burned very badly, and did nothing to help my PET, I mean they might have helped for a few minutes but they basically didn't help and apparently they work wonders for some people.
what did he say you had? i'm dying to know..
what did he say you had? i'm dying to know..
JeremyR
02-26-2005, 11:39 PM
aja,
Hi
Glad to hear from you again,
I wish I knew what was wrong with my ear more than anything else in the world. Dr. Poe did not diagnose me with anything, other than say that my right eustachian tube is not opening on its own. He said that during the course of the past several years, I have developed a habit of popping my e-tube open on my own. But I don't do it for fun. I do it because my ear feels full and sometimes I have inner ear pain. Dr.Poe said that autophony is the primary reason people pursue his surgery. If you have an authentic patulous e-tube, that will probably be your most frustrating symptom. As for me, I'm kind of discouraged with my whole ear problem. I've had this problem for nearly ten years, and I think doctors are beginning to think I'm crazy. Even if my condition can't be completely corrected, I would at least like to know what is going on in there. If the Patul-end drops irritate you, it seems that they would at least temporarily alleviate that sensation of air rushing through your ear and the autophony. Why exactly do you think its not patulous? Do doctors think you are crazy too? Also, I don't think I ever asked how your symptoms started.
Keep us updated, Jeremy
Hi
Glad to hear from you again,
I wish I knew what was wrong with my ear more than anything else in the world. Dr. Poe did not diagnose me with anything, other than say that my right eustachian tube is not opening on its own. He said that during the course of the past several years, I have developed a habit of popping my e-tube open on my own. But I don't do it for fun. I do it because my ear feels full and sometimes I have inner ear pain. Dr.Poe said that autophony is the primary reason people pursue his surgery. If you have an authentic patulous e-tube, that will probably be your most frustrating symptom. As for me, I'm kind of discouraged with my whole ear problem. I've had this problem for nearly ten years, and I think doctors are beginning to think I'm crazy. Even if my condition can't be completely corrected, I would at least like to know what is going on in there. If the Patul-end drops irritate you, it seems that they would at least temporarily alleviate that sensation of air rushing through your ear and the autophony. Why exactly do you think its not patulous? Do doctors think you are crazy too? Also, I don't think I ever asked how your symptoms started.
Keep us updated, Jeremy
aja
02-28-2005, 12:47 PM
Autophany is definitely the most troubling aspect of my PET, I hear my voice and breathing really loud, and the impact of it against my drum, and the clicking etc. it's so damn horrible, it's difficlut to ever be cheerful, I'm starting to get frown lines! ..though I really try sometimes to be happy because I don't know if I'll always have this and I don't want to be a miserably all my life.
I think maybe those drops didn't work because it's difficult to administer them correctly, you have to get the solution really far back to get it into the ET, but even if it did work because I was able to achieve that, it's not worth it for the burning. He told me (dr. Bartolomo..or whatever his name was) that you know you've got the ET when a tear drop comes our of your ear, and I achieved that and my PET went for a bried while but because it burned so much I think I cried a little and maybe washed it out, either way it didn't work out for me at all. But when I told him he said I should get looked at again because it helps most people with PET and that my experience was unusual. Maybe I was just very sensitive to the solution, whatever it was it was too strong for me (and it didn't work).
I don't know how mine started but I've thought about it a lot over the years and I have a little theory. I think in my case when the PET started my immune system was very low, partly due to my diet being terrible..for ages, and because I went through a lot of emotional pain and stress which would have made my immune system even weaker. I also have wondered about my merccury fillings. whether it was the fillings or not, I don't imagine that PET would happen to someone with a really strong immune system. The actual trigger, I don't know, but I think we live in such a toxic world that if you're not strong you're vulnerable. What with all the c**p we're exposed to it could have been anything that triggered it.
Doctors don't think I'm crazy but they do think I'm depressed and hysterical, which with really irritates me. they tell me that I'm having "a very strong reaction" to a relatively harmless condition, and ofcourse I'm always reminded that "people live with a lot worse", which you don't need a doctor to tell you, of course people live with worse, do they think we're stupid? Anyway, enough anger!
I'm sorry to hear your back at square one.. why don't you forget doctors for a bit, and any other person who thinks they can heal you, have a break from it, and come back to it when you've had some time off that's what I have to do. This might be annoying question but did you ever try those tibbetan ear candels? I don't know why but I sudennly thought you might benifit from them..
I think maybe those drops didn't work because it's difficult to administer them correctly, you have to get the solution really far back to get it into the ET, but even if it did work because I was able to achieve that, it's not worth it for the burning. He told me (dr. Bartolomo..or whatever his name was) that you know you've got the ET when a tear drop comes our of your ear, and I achieved that and my PET went for a bried while but because it burned so much I think I cried a little and maybe washed it out, either way it didn't work out for me at all. But when I told him he said I should get looked at again because it helps most people with PET and that my experience was unusual. Maybe I was just very sensitive to the solution, whatever it was it was too strong for me (and it didn't work).
I don't know how mine started but I've thought about it a lot over the years and I have a little theory. I think in my case when the PET started my immune system was very low, partly due to my diet being terrible..for ages, and because I went through a lot of emotional pain and stress which would have made my immune system even weaker. I also have wondered about my merccury fillings. whether it was the fillings or not, I don't imagine that PET would happen to someone with a really strong immune system. The actual trigger, I don't know, but I think we live in such a toxic world that if you're not strong you're vulnerable. What with all the c**p we're exposed to it could have been anything that triggered it.
Doctors don't think I'm crazy but they do think I'm depressed and hysterical, which with really irritates me. they tell me that I'm having "a very strong reaction" to a relatively harmless condition, and ofcourse I'm always reminded that "people live with a lot worse", which you don't need a doctor to tell you, of course people live with worse, do they think we're stupid? Anyway, enough anger!
I'm sorry to hear your back at square one.. why don't you forget doctors for a bit, and any other person who thinks they can heal you, have a break from it, and come back to it when you've had some time off that's what I have to do. This might be annoying question but did you ever try those tibbetan ear candels? I don't know why but I sudennly thought you might benifit from them..
aja
02-28-2005, 12:56 PM
actually I'm not sure about that suggestion about the candels, it's just that they're good for relieving pressure.
JeremyR
03-01-2005, 01:16 PM
aja,
Based on what you have said, I still think you have PET. Its unfortunate that the Patul-end didn't work. It appears that there's a prescription form and a non-prescription form. Maybe they have slightly different ingredients and you can try both. I think you owe it to yourself to at least have a consultation with Dr. Poe. His surgery, if you need it, is expensive, but at least you would know for certain that you have a patulous tube after the first visit. But based on what you say, it sounds like you definitely have a patent e-tube.
Its true that chronic conditions can drive you crazy. I've had my ear troubles for ten years and haven't even got a diagnosis yet. A diagnosis is half the battle. At least I would know what was wrong with my ear and people wouldn't think I'm crazy or "overreacting." Its natural and healthy to desire a remedy. Accupuncture, Cranial-sacral therapy, and massage have helped me with the stress aspect of my ears--but I've never tried ear candling.
Hope this helps, Jeremy
[ please read and follow the posting rules as you agreed to do -
- do not use these forums to arrange off-board correspondence ]
Based on what you have said, I still think you have PET. Its unfortunate that the Patul-end didn't work. It appears that there's a prescription form and a non-prescription form. Maybe they have slightly different ingredients and you can try both. I think you owe it to yourself to at least have a consultation with Dr. Poe. His surgery, if you need it, is expensive, but at least you would know for certain that you have a patulous tube after the first visit. But based on what you say, it sounds like you definitely have a patent e-tube.
Its true that chronic conditions can drive you crazy. I've had my ear troubles for ten years and haven't even got a diagnosis yet. A diagnosis is half the battle. At least I would know what was wrong with my ear and people wouldn't think I'm crazy or "overreacting." Its natural and healthy to desire a remedy. Accupuncture, Cranial-sacral therapy, and massage have helped me with the stress aspect of my ears--but I've never tried ear candling.
Hope this helps, Jeremy
[ please read and follow the posting rules as you agreed to do -
- do not use these forums to arrange off-board correspondence ]
PETboy
05-10-2005, 06:26 PM
Hi PETboy,
Jeremy here,
I haven't posted for a while because I'm at square one with my ear problems again. Apparently, its not a patulous case. As for Dr. Poe, he is very good and he is definately the man to see if you have a patulous eustachian tube and want to pursue a surgical repair. He will show you what your E-tube looks like right in his office,and let you know if his surgery is appropriate. He told he is supposed to publish his initial resuts of his PET surgery sometime this sping.
hope this helps, JeremyR
Hi Jeremy,
I am sorry that you haven't found a cure for your problem. I have a appointment with Dr. Poe next month (pheww... 4 long months after calling for a appointment).
Can you throw some light on how he tests for PET in his office and how long long did your session take? Also in case he schedules any tests then after long does one get to see him again. I can't afford to have 4 month gaps between every visit. I am hoping to be able to have this surgery and ged rid of this stupid problem once and for all.
Thanks.
Jeremy here,
I haven't posted for a while because I'm at square one with my ear problems again. Apparently, its not a patulous case. As for Dr. Poe, he is very good and he is definately the man to see if you have a patulous eustachian tube and want to pursue a surgical repair. He will show you what your E-tube looks like right in his office,and let you know if his surgery is appropriate. He told he is supposed to publish his initial resuts of his PET surgery sometime this sping.
hope this helps, JeremyR
Hi Jeremy,
I am sorry that you haven't found a cure for your problem. I have a appointment with Dr. Poe next month (pheww... 4 long months after calling for a appointment).
Can you throw some light on how he tests for PET in his office and how long long did your session take? Also in case he schedules any tests then after long does one get to see him again. I can't afford to have 4 month gaps between every visit. I am hoping to be able to have this surgery and ged rid of this stupid problem once and for all.
Thanks.
lib
05-10-2005, 09:55 PM
Hi Jeremy,
I am sorry that you haven't found a cure for your problem. I have a appointment with Dr. Poe next month (pheww... 4 long months after calling for a appointment).
Can you throw some light on how he tests for PET in his office and how long long did your session take? Also in case he schedules any tests then after long does one get to see him again. I can't afford to have 4 month gaps between every visit. I am hoping to be able to have this surgery and ged rid of this stupid problem once and for all.
Thanks.
it depends on what he sees when he looks at the e tubes as to what other tests, but they are pretty quick to get.
he spends a good hour or so with you, hes very thoroug.
keep us posted on your appointment.
lib
I am sorry that you haven't found a cure for your problem. I have a appointment with Dr. Poe next month (pheww... 4 long months after calling for a appointment).
Can you throw some light on how he tests for PET in his office and how long long did your session take? Also in case he schedules any tests then after long does one get to see him again. I can't afford to have 4 month gaps between every visit. I am hoping to be able to have this surgery and ged rid of this stupid problem once and for all.
Thanks.
it depends on what he sees when he looks at the e tubes as to what other tests, but they are pretty quick to get.
he spends a good hour or so with you, hes very thoroug.
keep us posted on your appointment.
lib
PETboy
05-10-2005, 10:41 PM
Thanks lib for the response.
Lets say he asks me to do some tests...then how soon after would he schedule the next appointment.
Lets say he asks me to do some tests...then how soon after would he schedule the next appointment.
lib
05-11-2005, 07:55 AM
Thanks lib for the response.
Lets say he asks me to do some tests...then how soon after would he schedule the next appointment.
im really not sure, i think it all depends on what he finds. be sure to mention the thumping and all of the symptoms, make a detailed list of all your symptoms. once you are a patient, i think its easier to get in. some people get the tests done the same day, and then i guess it depends on what he finds. but you will at least have an idea as to what is going on and the next step.
lib
Lets say he asks me to do some tests...then how soon after would he schedule the next appointment.
im really not sure, i think it all depends on what he finds. be sure to mention the thumping and all of the symptoms, make a detailed list of all your symptoms. once you are a patient, i think its easier to get in. some people get the tests done the same day, and then i guess it depends on what he finds. but you will at least have an idea as to what is going on and the next step.
lib