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Hearing Disorders Message Board


Hearing Disorders Board Index


Hi Lib: I am beginning to feel like we are the only ones left out there in cyberspace with this disorder. Sure is nice to wake up and check my mail and see your note. Like you, I have never met anyone locally with thise disorder and it is difficult to explain to people--especially when talking seems to be the major problem for me. I agree with you that the close friends and family understand the problem and work around the fact that they need to stand close and listen attentively so that I can talk very softly. But going out in public is such a chore these days. The little things drive me nuts. There are so many things that I took for granted that are now difficult. It can be as insignificant as going to the grocery store. When I get to the check out the cashier will say how and ask how I am. Since I am standing about 4 feet away and unloading my cart it is just enough distance that it is uncomfortable to speak. I used to try but I am so tired of the booming noise in my head that I now just smile and don't answer. And then when I get close and can ask a question or comment the person almost always says "What?" because they have trouble hearing me over background noise. So with time I have just learned to shut up. The frustration of being out with people but not being able to say anything is what drives me nuts. Do you have any similar problems when out and about in town? I have started carrying a 3x5 card that has my routine order on it for Starbucks because it is just easier than trying to talk over the music and noise of the cappucino machine. I can talk if I have to but by the time I get home from just 4 or 5 errands my ear seems worse from all the increased volume of trying to communicate. I never get a headache or earache but the ear pressure seems to increase if I talk louder than absolutely necessary. Let me know if you experience any of these kind of things Lib.

Now in reference to your note and the spasms. I have never had any spasms although I have read that several people have. Do you have the semi-patulous ET? From what I have read here in the posts and in my favorite article site, PUBMED, it seems that if the ET has some elasticity or tissue mass left at all that it will open and close in an attempt to resume its normal function. That must be the reason for all that snap, crackle, pop (by the way--how is SCP--haven't seen her posts recently after her husband said she was sick--hope she is OK). I wonder if your spasms are any indication that the ET might recover? For a period of time I had something else you have described, those inspiratory movements where the ear drum moves in and out when you talk--that was horrible. To spend an entire day being aware of every single breath or sound going through your ET was exhausting and made it hard to concentrate on anything else. That went away and I am not sure why but I am going to guess that it has something to do with hydration. One of the self help things I have done is to drink huge amounts of water to keep hydrated because I notice a big difference in the ear pressure when I am dehydrated. I have never had an ENT say anything about this but I haven't had much input from the doctors I have seen anyway. So little known about this condition and I have just taken it upon myself to try to figure out something. It never alleviates the condition but does seem to help. I bet you are getting anxious for your surgery on the 9th if you are having spasms in your ear drum now. You mentioned that Nathan wasn't on the boards anymore because his surgery was successful with Dr. Poe. Do you know what thread he talks about his success in? I will try to go through some more of the posts today and catch up on old posts. Also I checked out Johns Hopkins website and the Boston institute where you are having your surgery. I guess I will call and see if I can get some info from them today. I know there is an House of Ear Institute in Los Angeles and one of the doctors there has performed the Alloderm surgery twice with good results according to his med article. Will you have to have a permanent ear tube placed along with the alloderm implant?
Hi Lib:
Thanks for the note and answering my questions about talking. I haven't seen people say much about their speech being soft or having to cut back on talking in a lot of settings so I was worried that I might actually have something else. I have had two endoscope exams- none video which I would prefer so I could see the results myself--but at least one doctor said he could see the ET was wide open and the other ear was semi-patulous. The patulous one is the one that drives me nuts because of the pressure but at least I don't have the spasms that a lot of people are describing--those sound even worse. But I don't get any of that clicking either so ..... my next step is to get an MRI with contrast to make sure I don't have a brain tumor or anything else going on. I get dizzy or lightheaded on occasion--do you ever feel that way because of the ear pressure? I don't notice it when I am busy and walking around but when I sit still I feel a little like the room is moving.

That article was about fat grafting--isn't that the same as the Alloderm? I thought the Alloderm was a fat graft from a cadaver. Do you have to get the grommet in your ear afterwards and how often is it replaced? Did Dr. Poe say anything about the danger of hearing loss with long term ventilation tubes? I guess at this point it doesn't matter that much since getting rid of the PET is your biggest concern. This condition can drive you bonkers because there never seems to be any relief. Hopefully with the surgery you will be back to normal. You said Nathan had a complete recovery? I will go look under his name and read his posts. I did see where it looked like he described having the spasms first and then the Botox treatments cured that but gave him PET. Which did you have first--PET or the spasms? Will you be given general or IV anesthesia? I had IV sedation before and it makes the procedure a breeze--you literally don't remember a thing until you wake up. I figure I can handle any after surgery pain as long as I am in my own bed and home. I will go online and see if I can find Dr. Poe's phone number at the Boston Institute and ask them to send some info.

The article that you might want to read can be found by doing a internet search on EntrezPubMed. From there you can do a search for any medical condition you want. PET will pull up all sorts of articles and the author of that article for fat grafts is from the House Ear Clinic in LA. His name is
Doherty JK, Slattery. Look for the article entitled Autologous fat grafting for the refractory patulous eustachian tube. Maybe Poe is the only one doing the cadaver tissue placement--I wonder if that is the procedure that is the newest that I have been hearing about--must be since he is the leader in the field as far as surgery. I sure wish the FDA drug study had worked for me. That would have been an easy fix.
Well best wishes to you. You will be on my mind all day on the 9th and hope that your procedure is easy and you have full recovery. You will feel like superwoman if you can get rid of this PET and talk normally again.
[QUOTE=petpeeve]Hi Lib:
Thanks for the note and answering my questions about talking. I haven't seen people say much about their speech being soft or having to cut back on talking in a lot of settings so I was worried that I might actually have something else. I have had two endoscope exams- none video which I would prefer so I could see the results myself--but at least one doctor said he could see the ET was wide open and the other ear was semi-patulous. The patulous one is the one that drives me nuts because of the pressure but at least I don't have the spasms that a lot of people are describing--those sound even worse. But I don't get any of that clicking either so ..... my next step is to get an MRI with contrast to make sure I don't have a brain tumor or anything else going on. I get dizzy or lightheaded on occasion--do you ever feel that way because of the ear pressure? I don't notice it when I am busy and walking around but when I sit still I feel a little like the room is moving.

That article was about fat grafting--isn't that the same as the Alloderm? I thought the Alloderm was a fat graft from a cadaver. Do you have to get the grommet in your ear afterwards and how often is it replaced? Did Dr. Poe say anything about the danger of hearing loss with long term ventilation tubes? I guess at this point it doesn't matter that much since getting rid of the PET is your biggest concern. This condition can drive you bonkers because there never seems to be any relief. Hopefully with the surgery you will be back to normal. You said Nathan had a complete recovery? I will go look under his name and read his posts. I did see where it looked like he described having the spasms first and then the Botox treatments cured that but gave him PET. Which did you have first--PET or the spasms? Will you be given general or IV anesthesia? I had IV sedation before and it makes the procedure a breeze--you literally don't remember a thing until you wake up. I figure I can handle any after surgery pain as long as I am in my own bed and home. I will go online and see if I can find Dr. Poe's phone number at the Boston Institute and ask them to send some info.

The article that you might want to read can be found by doing a internet search on EntrezPubMed. From there you can do a search for any medical condition you want. PET will pull up all sorts of articles and the author of that article for fat grafts is from the House Ear Clinic in LA. His name is
Doherty JK, Slattery. Look for the article entitled Autologous fat grafting for the refractory patulous eustachian tube. Maybe Poe is the only one doing the cadaver tissue placement--I wonder if that is the procedure that is the newest that I have been hearing about--must be since he is the leader in the field as far as surgery. I sure wish the FDA drug study had worked for me. That would have been an easy fix.
Well best wishes to you. You will be on my mind all day on the 9th and hope that your procedure is easy and you have full recovery. You will feel like superwoman if you can get rid of this PET and talk normally again.[/QUOTE]
hi petpeeve,
i get light headed and mild dizziness when i move to much, i dont know why, maybe the ears. i did find the info on pubmed the other night.
as far as alloderm look up alloderm implant, it will explain what alloderm is, it does not need to be replaced it may dissapate some and you mat need more but the hope is to get new tissue or scar tissue to grow.
you would only need a tube in the ear if it were over corrected but that has not happened to anyone.
i think poe is the only one that is doing this, where did you hear about a new procedure?
its general so i guess is got to be iv, it cant be gas because he has to go up through the back of the throat.
i had pet first and then the spasms but they stopped thank god.
this is a miserable condition and i will have the tubes closed if it comes to it, i can handle feeling this way.
did you find dr poes number?
lib
possible patulous eustachian tube, i am no doc but it sounds like it could be.
dr dennis poe in boston is the only doc that can do surgery for this.
good luck
hi,
i have a few questions.
when you say your ear spazzes out, can you describe this a bit better? do outside sounds bother you?
the area that your sinuses hurt, any other sensations?
any other symptoms that could be a clue?
dr poe in boston does surgery for p e t, you will not lose your hearing. he is a top dr and takes great care of his patients.
there is also a nasal spray designed to swell the e tube up, called patulend, you have to do a search on it and order it.
dont give up. there are options
lib





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