is there anyone out there who had effective cartilage graft insertion, to treat Patulous Eustachian Tube ?
I heard only from two people who had this surgery. In both terms their symptoms where gone first, but gradually came back.
I have problems with pressure changes, crackling and popping sounds in my ears.
Maybe there is someone out there who can tell me something about his experiences ...
Re: Patulous Eustachian Tube Surgery Experiences ?
Hello mazomatic,
I am also considering having the cartilage graft surgery for PET with dr. Poe.
From what I know, it does in some cases (probably quite a few) come back after a while, but what dr. Poe told me was this....the cartilage graft leaves some scar tissue behind and for people who's symptoms come back he does an injection with some kind of calcium substance which then closes it up again (not so much that it becomes totally blocked - all going well), the reason the injection works after the cartilage graft and not before it is because if you have the injection before, it eventually gets absorbed by the body and is therefore not an effective way to correct the PET, if you have the injection after the cartilage graft it "holds better" to the scar tissue left behind from the cartilage graft. I have tried to repeat it exactly the way he told me. Apparently he has had success with that. I hope that helps.
Re: Patulous Eustachian Tube Surgery Experiences ?
Hi aja,
thanks for your info.
If Dr.Poe said itīs only a few people whose symptoms came back, then the surgery seems to be a good option.
I think the matter why I only heard of people who still have problems after the surgery, is that the guys who were treated donīt post messages on messageboards no more.
Did Dr.Poe say anything about a possible constant pressure feeling after the surgery ? I have no Autophony, so the pressure and crackling is what I want to get rid off. I think I read something like that on another message board a while ago, but maybe that was a special case.
Re: Patulous Eustachian Tube Surgery Experiences ?
Quote:
Originally Posted by mazomatic_r
Hi aja,
thanks for your info.
If Dr.Poe said itīs only a few people whose symptoms came back, then the surgery seems to be a good option.
I think the matter why I only heard of people who still have problems after the surgery, is that the guys who were treated donīt post messages on messageboards no more.
Did Dr.Poe say anything about a possible constant pressure feeling after the surgery ? I have no Autophony, so the pressure and crackling is what I want to get rid off. I think I read something like that on another message board a while ago, but maybe that was a special case.
Thanks a lot,
mazomatic
with no autophony..... explore myoclonus,the cracking and pressure is a symptom of this, so are many others you have listed.
lib
Re: Patulous Eustachian Tube Surgery Experiences ?
Hi mazomatic, you're welcome.
listen, have you actually seen dr. poe yet? Autophony is one of the main symptoms of PET, if you don't hear your voice louder at all, then Lib is probably right, you probably have something else. Make sure you get a correct diagnosis.
Re: Patulous Eustachian Tube Surgery Experiences ?
Hi aja, hi lib,
no I havenīt seen Dr.Poe yet, because Iīm living in Europe. But I heard so much good about him. Unfortunately I am very afraid about flying. So itīs not possible for me to get an appointment with him.
But I have a good PET-specialist here in Europe, too. He said autophony is one of the main symptoms, but not all patients have this. He had done the surgery a couple of times, and all his patients were satisfied.
I really think in my case itīs pet. Every doctor I had seen in the last 10 years, has diagnosed a patulous eustachian tube. I donīt think that I have myoklonus.
The problem is, that it seems to be impossible to make a 100%-diagnose in pet. I thought they can see it if they go in with an endoscope, but my doctor said, itīs hard to see if the e-tube is working correctly or not.
But my eardrums move, when I sniff, I can move them in and out. Furthermore I get crackling or pressure feeling often, when I swallow. And when exercising itīs getting worse, too.
Has Dr.Poe a save method to diagnose pet ? As what I read until now, there is none.
Re: Patulous Eustachian Tube Surgery Experiences ?
The worst symptom of PET for me is hearing my own breathing. I had cartilage graft done one year ago. Unfortunately it did not work for me. I know couple of people that had it done as well but they also had to have done additional procedure such as calcium injection. Probably one single surgery does not cure PET. It seams there is no simple fix for it and usually requires more than one intervention. I have been using Patul-end drops since November/05. The drops are strong and the stinging is terrible but it closes the E-tube usually for 3 to 5 days for me.
Re: Patulous Eustachian Tube Surgery Experiences ?
mazomatic,
aja has p e t confirmed by poe, as she has written, autophoney and breathing sounds are the symptoms. your symptoms mirror mine as we have compared them on email. with p e t you do not get the symptoms we get from outside sounds. yes my eardrums moved all the time until i had the tendons severed....your symptoms are consistant with myoclonus, not p e t.
a good dr will be able to diagnose this, perhaps going back with a list of symptoms and asking if it could be myoclonus will get you the right diagnosis.
lib
Re: Patulous Eustachian Tube Surgery Experiences ?
Hi gryzly, did you have the cartilage graft done with dr. poe? why did you not consider having the calcium injection afterwards? did the cartilage graft surgery make your PET any worse, or casue other problems? or did it just make no difference? thanks for the feedback.
Re: Patulous Eustachian Tube Surgery Experiences ?
Quote:
Originally Posted by gryzly
The worst symptom of PET for me is hearing my own breathing. I had cartilage graft done one year ago. Unfortunately it did not work for me. I know couple of people that had it done as well but they also had to have done additional procedure such as calcium injection. Probably one single surgery does not cure PET. It seams there is no simple fix for it and usually requires more than one intervention. I have been using Patul-end drops since November/05. The drops are strong and the stinging is terrible but it closes the E-tube usually for 3 to 5 days for me.
I have had the autophony on and off for the past four years and is very, very annoying to say the least. That was when I was in college too... talk about having a hard time trying to give a presentation. Anyways, thanks for informing me about Patul-end. I just ordered some off of their website and can not wait to try it. Do you drip it into the ear, or is it a nasal spray? I also read that these trials are in Phase III and are within a year being approved. Great news for everyone with PET!
Re: Patulous Eustachian Tube Surgery Experiences ?
Hi Aja and Ty Hayes
Sorry Aja but I could not reply to you earlier. It was very busy holiday time for me. Yes, the surgery was done by Dr. Poe. I did not see any improvement afterwards. The full autophony (hearing own breathing, own voice and terrible pressure) came back about 1 week after surgery. I did see my own ENT 6 months after the surgery and I requested Ventilating Tube again which helps with releasing pressure but it does not eliminate autophony. Anyway I have not gone for calcium crystal injection yet because I would have to pay for it by myself and it is not cheap. I may go in the future though. There are not guarantees that it will work neither. Everybody is different. I know one person that had cartilage graft which helped her in about 30-40% and then after 1 year she had calcium injection done. Now she says that she feels almost cured. Anyway as I mentioned in my previous posting I started using Patul end drops and they help the most. I administer it in a sitting position with chin up, head tilt to the right (my right ear is patulous). The instruction is attached when you receive them. I put only one to two drops through the right nostril. I ordered the drops (15ml) in November and still have it. If the drops are administered correctly you will feel terrible stinging in the e-tube. It is worth to suffer as the tube closes immediately (for me it stays closed for 3 or even 5 days). I can function normally during that time. When I start feeling fullness and pressure in my ear it means that the tube will open up again so I use the drops again. Anyway the drops help me to live almost normal life again although it is only temporary fix. I hope you can also benefit from the drops. Any relieve from the autophony is worth to try. Good luck.
Re: Patulous Eustachian Tube Surgery Experiences ?
Thanks for the quick response! You mentioned that you feel pressure in your ear; I have never felt any pressure, I just start to hear my own breathing and my own voice when I talk. The weird thing is that it goes away some days, and then comes back.
Anyway, I did order the Patul-end drops and am waiting for it in the mail. I can't wait.
Do you know when the prescription should come out? I heard that the Patul-end drops are from an early stage of testing and that after the FDA approves it, then next year sometime you can get the final product by prescription. Does this sound familiar?
Re: Patulous Eustachian Tube Surgery Experiences ?
thanks gryzly, i appreciate the response.
I've had the patul-end drops for about a year and I do use them on special occasions. I find them very unpleasant to use (they give me a headache and make me feel generally not very good, and they only last a few hours for me, but they come in very handy for emergencies, like an interview or special socail event).
thanks again for the feedbak on the surgery, I think you're right in saying that it varies greatly, just like people's reaction to the drops varies greatly. i've spoken to a couple of people who said the surgery improved their symptoms tramendously.
we'll see.
Ty_Hayes, you put the drops in your nose lying down (or with head tilted as gryzly does) and sniff. it takes a while to get the hang of administering it right. i'm sure it will give you some relief though.
Re: Patulous Eustachian Tube Surgery Experiences ?
Hello Everyone,
I was considering getting surgery done from Dr.Poe, but after hearing so many mixed responses I am thinking of dropping the idea. It's a lot of money for just "Giving it a shot".
So I am thinking of getting Teflon Ventilation Tubes inserted in my ear drums. I have heard that even these don't work as some people have tried it. But I think it will help release the pressure. ALthough it will not help with the autophony. But at least it will solve 1 out of 2 problems. I think dealing with the pressure is much worse than dealing with the autophony.
Have any of you tried putting these tubes in? What do you have to say about this? Its a risk free surgery and the ear drum heals itself in 99.9% cases. I don't see any other option except getting it done.
PLease post your views.
THanks
Kunal
Re: Patulous Eustachian Tube Surgery Experiences ?
Hello every body............ I was reading here and it is very comforting to see others with same problems. I was diagnosed with meniers disease in 1977 and also eustachian tube dysfunction. I have experienced and still do most of these same reported symtoms here. I still experience pressure and the very loud debilatating noises although I did have an endolphmatic subbarrachnoid shunt tube implant in 1980 at Lennox Hill Hospital by Dr. Kenneth Haskell Brookler, a neuro otilic surgeon in NYC , Manhattan. The operation did bring my hearing up to about 65% from 20% in my right ear < I am stone deaf from birth in my left ear d/t congenital birth defect; the auditory nerve did not develope> When I was 27 I somehow procured the meniers disease. It happened 4 months after the birth of my daughter. I do not know if giving birth is what did it or if somehow the pregnancy did it; many doctors say the extra fluid in your body during pregnancy can trigger or exaberate the condition worse.
My doctors tell me that the pressure I feel is from eustachian tube dysfunction. I get very depressed about it as stated by others here but it is no use to let your self feel this way long.
I guess after the 20 some years of experiencing this , my best advice to all here is to remember that what you pay attention to grows. So try not to pay too much attention to the condition. Keep really busy in life and force yourself to get out and do things. I know that sounds so trite and simple and too neat for this condition; believe me I do understand what you all say about it but life must go on for us as well as others.............. if it helps; I have had a yoga person from India tell me there is a kind of yoga that listens to sounds . He said he thought I was an ancient and old soul that had practiced this kind of yoga and got lost...............hahahaha! Well , if that is true I guess I am hovering out there in the universe eternally listening to ALL the sounds in the universe and living out my bliss............ :-))) I AM trying to find my way back to normallacy......... meanwhile OMMMMMMMMMMMMMM ommmmmmmmmmmmmmmmmmm OMMMMMMMMMMMMMMMM
Blessings to all here!
Last edited by Kristine13826; 05-11-2006 at 04:31 AM.
Re: Patulous Eustachian Tube Surgery Experiences ?
Anyone with PET,
Firstly, Lib, I feel like I know you from reading all the threads you've posted over the last years. I've only been reading the board notes for about a month or so. My heart bleeds for you and everyone else that suffers like this. I've had PET since October 05' although I wasn't diagnosed until March or so with it specifically. Like the rest of you, it took a few doctors and the process of elimination to get that diagnosis. The only thing we are doing right now for me is the Premarin Spray and on my own I am trying the Patul-End Drops as well. I showed him all the info for it and he said it couldn't hurt to try it. What bothers me about it is that they don't list the ingredients. I know one thing like some of you have mentioned, it surely does burn. It feels like battery acid, but I don't care if it will help. Neither one have helped me yet. What disturbs me is that I hope he is correct in my diagnosis. I did have autophony and sensitivity to sounds in the first few months, but it has lifted for the most part and I am so thankful for that. The only time I heard my own breathing is when I did try a partial meringotomy (pardon the spelling if incorrect). I'm so glad he only tried a partial because he said he could tell from my reaction that it would not help my condition and suspected that might be the case which is why he didn't do the full tube surgery. The most annoying sensations I presently have are the crackling noise every time I swallow and the fullness of air that I always feel in my ears. Both of my ears are exactly the same. One is not worse than the other. There have been times over the last few months I thought I was going to go nuts. I think this was brought on for me by a relapse I had with a chronic illness right before Hurricane Wilma hit. I've had Epstein-Barr/CFS since 1996 and I have now read that PET and other similar disorders can stem from chronic illnesses. Thank you for all the information everyone has shared. I would not have learned about the drops or Dr. Poe or a lot of other information without "meeting" you all. I truly thank you.
Re: Patulous Eustachian Tube Surgery Experiences ?
Quote:
Originally Posted by Lea Gabel
Anyone with PET,
Firstly, Lib, I feel like I know you from reading all the threads you've posted over the last years. I've only been reading the board notes for about a month or so. My heart bleeds for you and everyone else that suffers like this. I've had PET since October 05' although I wasn't diagnosed until March or so with it specifically. Like the rest of you, it took a few doctors and the process of elimination to get that diagnosis. The only thing we are doing right now for me is the Premarin Spray and on my own I am trying the Patul-End Drops as well. I showed him all the info for it and he said it couldn't hurt to try it. What bothers me about it is that they don't list the ingredients. I know one thing like some of you have mentioned, it surely does burn. It feels like battery acid, but I don't care if it will help. Neither one have helped me yet. What disturbs me is that I hope he is correct in my diagnosis. I did have autophony and sensitivity to sounds in the first few months, but it has lifted for the most part and I am so thankful for that. The only time I heard my own breathing is when I did try a partial meringotomy (pardon the spelling if incorrect). I'm so glad he only tried a partial because he said he could tell from my reaction that it would not help my condition and suspected that might be the case which is why he didn't do the full tube surgery. The most annoying sensations I presently have are the crackling noise every time I swallow and the fullness of air that I always feel in my ears. Both of my ears are exactly the same. One is not worse than the other. There have been times over the last few months I thought I was going to go nuts. I think this was brought on for me by a relapse I had with a chronic illness right before Hurricane Wilma hit. I've had Epstein-Barr/CFS since 1996 and I have now read that PET and other similar disorders can stem from chronic illnesses. Thank you for all the information everyone has shared. I would not have learned about the drops or Dr. Poe or a lot of other information without "meeting" you all. I truly thank you.
hi lea,
read all of my posts, i ended up having myoclonus and the surgery to clip the tendons. make sure you have the right diagnoses...
i was in the keys on vacation for hurricane wilma btw....what a storm!
lib
The Following User Says Thank You to lib For This Useful Post: cookiekia (05-21-2012)
Re: Patulous Eustachian Tube Surgery Experiences ?
Lib,
You are so on the ball with getting back to people. Yes, I have read all of your posts and even noted them regarding your Myoclonus. That is what he thought I had at first and then ruled it out and I'm sorry I can't remember exactly how. He did bring a second doctor in from the University of Miami to concur. I personally believe I have some of both PET and Myoclonus (just based on symptoms alone) but I did take note of all your threads regarding the Myoclonus so that I can, once again, ask him specific questions when I see him again this month - especially since I can't remember. Does anyone else feel they are in a fog about half the time? I think he might still think it is possible that I am dealing with some of both and is focusing on what he thinks he can help me with the most which at this point is "fattening" the tube ends with the spray so that they might close. I think he realizes that it's a long shot for me, but I appreciate him continuing to try to help me. It's been about twelve weeks on the Premarin Spray and I as I stated before, I haven't had any change. I have quite a few more questions for him, based on this board. All thanks to you, Lib, and others. He always takes the time to address them all as I have lived on the Internet to find out about this even before he had diagnosed me. Doctors before him (ENT) did not even know what PET was and firmly denied that I had anything more than liquid in my ears prescribing Zyrtec, etc. which I believe may have made my symptoms worse. He is the only one that hasn't given up on me and is still trying to help me. I believe he is the best in our area. He has even brought up the name Poe to me. He seemed surprised I knew Poe's name which I had learned from this board. He said he did not have enough definitive information to suggest the surgery as a possibility. I believe he worded it like "the jury is still out on whether or not this surgery can help PET." I know you know someone who has definitely been helped by it. I guess it all depends on the individual's circumstances - and guts. I sure am happy for that person. It seems like someone would have come up with some "ear tube spackle" by now, but I guess that is kind of the premise for the surgery. Thanks for responding and I'm praying for everyone with this awful thing.
Re: Patulous Eustachian Tube Surgery Experiences ?
lea,
the brain fog is a symptom of tensor tympani syndrom...research all the conditions i listed above, i think you will be amazed.
patulous is hearing your breathing and talking loud like a megaphone in your ear....megaphone loud....also the sensitivity to outside sound is not a p e t symptom...this all straight from poe....hes an excellent careing dr....if you could see him i highly recommend that....i know its far, but he could diagnose you the best.
do your symptoms get better when you lay down or put your head between your knees?
lib
ps....what was the chronic illness that came on before this hit....that could be a huge clue...
are you in florida? i am on my way there thursday.....there is a good ear place in sarasota i hear!
