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Old 07-27-2004, 05:59 AM   #16
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Re: Eustachian Tube Catheter

Quote:
Originally Posted by petpeeve
Hi Lib: Thanks for the note about Nathan. That is great news that his PET is gone. I am still working my way through all the posts and will look for his feedback about after surgery. Do you know which thread it is? I know your surgery is coming up soon. You must be excited and hopeful. I will be anxiously waiting for your recovery and log in to let us all know. Could you tell me if your PET has affected your speech quality and social interaction? I keep trying to find a post from others that talks about the difficulty of speaking in public settings where it is noisy but can't find anyone talking about that. Everyone says PET drives them nuts but I am not sure if it is the snapping noise or speaking itself. I get so frustrated because even a soft voice sounds like it is booming in my head and I find myself just trying to be quiet as much as possible. Please let me know if you have similar symptoms? I will go online and check out the Boston doctor also and see if I can contact him and get some more info. Wish the health board allowed us to contact each other because it would be nice with the friendships that we form from this similar disorder to do things like send "get well" cards and other notes. Guess I will just have to do it via posts!!
hi,
yes i dont like to talk, i have a snapping sound in my face, and my voice reverberates into my ears, and they pop, and i can hear and feel the eardrums move in and out. its terrible, dont like to speak socially either because of the noise and i cant talk over it.
praying it will end soon though, trying to hang in there is the hardest part.
its really a life ruining condition. what kind of vertigo do you have?
lib

 
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Old 07-27-2004, 09:43 AM   #17
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Re: Eustachian Tube Catheter

Hi Lib: Thanks for catching my note to Richard--I had a feeling if he wasn't around anymore you might know and respond. He had some good insight into diagnostic techniques and his description of the spinning and vertigo is something I have experienced. I appreciate your info about the scan. I will try to learn the difference between the options--one doctor told me an MRI and another said a cat scan. One said use contrast dye and the other said no. Need to educate myself so will spend time today on the internet and looking at the John Hopkins site and also looking at the Boston Hearing institute where Poe is. I am not aware of any vertigo or dizziness or lightheadedness most of the time but occasionallly I just feel loopy like I have had a alchoholic drink. Last year I noticed it more but only in one specific setting and that is when I am sitting perfectly still in some classes I was taking. The difference there is that I am doing nothing with my hands and am just watching the instructor. I then have the feeling that I am dizzy or the room is moving slightly. It is minor but bothersome. There have been a few occasions where it was worse and I felt some nausea but rarely. I don't notice it any other time because I am pretty much on the go and doing something to keep my hands and mind busy. But the biggest challenge is the talking. Thanks for replying to my post--I was beginning to think I was the only one that had a challenge speaking --as much as I miss the social contact it is so irritating to speak even in quiet settings that I have done less and less socially as the years go by. I have plenty to keep me amused and busy but I miss just getting together for lunch with girlfriends. Have you noticed that people have a tendency to step on your sentences or not hear your voice--do you speak softly to compensate? Do you also experience the need to talk to someone at a really close distance?

Last edited by petpeeve; 07-27-2004 at 09:46 AM.

 
Old 07-27-2004, 02:55 PM   #18
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Re: Eustachian Tube Catheter

hi petpeeve,
yes, i dont talk loud because it aggrivates the pet, no i dont notice people doing that but anyone i talk to knows what i am going through so maybe thats why. i am having horrible spasms in my right ear right now, do you ever get that, spasm of the ear drum over and over.
it happened before but it wont stop right now....i think i am going to lose my mind, i cant take much more. do your ear drums move in and out when you talk?
lib

 
Old 07-28-2004, 08:20 AM   #19
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Re: Eustachian Tube Catheter

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?

 
Old 07-28-2004, 08:23 AM   #20
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Re: Eustachian Tube Catheter

Hi Lib:

Was just thinking about your ear spasms and wondered if you had tried a warm compress or heat pad? Heat is used to relax muscles when they spasm so I wonder if you could at least transfer some of that heat with a neck wrap or lying on the affected side on a heat pad. Good luck.

 
Old 07-29-2004, 04:48 PM   #21
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Re: Eustachian Tube Catheter

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.

 
Old 07-29-2004, 05:06 PM   #22
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Re: Eustachian Tube Catheter

Quote:
Originally Posted by 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.
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

 
Old 09-07-2004, 04:30 PM   #23
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Re: Eustachian Tube Catheter

Quote:
Originally Posted by aja
I've never met anyone else with PET only those on this site.
I've had it for 4 years or so
Drop me a reply if you get this and we can discuss coping strategies.
Aja: You wrote that post a long time ago but if you see this I would like to know what coping methods you use for PET. For some reason the PET site was closed down and it was the only thing I found helpful. PET is such a specific disorder that it doesn't do any good to read about eustachian tube disorders or other problems of the ear that involve liquid in the ear. So I am trying to find some links to those of you that say you have a definite diagnosis. The only thing I have found helpful is not talking but that is a huge social change. I am interested in what you do to help with the problem of your own voice being so loud inside your head when you speak. Thanks.

 
Old 10-11-2004, 12:22 PM   #24
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Re: Eustachian Tube Catheter

lib, you said: "i had pet first and then the spasms but they stopped thank god." you don't have the spasms anymore?

 
Old 10-11-2004, 01:30 PM   #25
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Re: Eustachian Tube Catheter

i still have the spasms, horrible!
lib

 
Old 10-11-2004, 08:13 PM   #26
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Re: Eustachian Tube Catheter

Lib: what is going on? I am sorry to read your recent post that the spasms are still horrible. What does the doc think the reason is? have they increased since your surgery? I wonder if that aggravated those upper tensor muscles. Are you having the tendons cut? I sure hope you get some relief. I went to ENT recently for check up since nothing seems to help and nothing gets better. It seems like the specialists don't seem to understand how disabling the autophony can be. Or they just don't care about that aspect. It is disappointing to say the least. I have pretty much given up. This chat site has been helpful just knowing that others actually exist with the same rare condition but it seems like all options have been exhausted and beyond just moral support for each other there isn't much else left to chat about and share. I just hope your condition improves and will check in occasionally to see if you are doing anything new to help the myoclonus condition. Good luck PP

 
Old 10-12-2004, 03:58 AM   #27
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Re: Eustachian Tube Catheter

Quote:
Originally Posted by petpeeve
Lib: what is going on? I am sorry to read your recent post that the spasms are still horrible. What does the doc think the reason is? have they increased since your surgery? I wonder if that aggravated those upper tensor muscles. Are you having the tendons cut? I sure hope you get some relief. I went to ENT recently for check up since nothing seems to help and nothing gets better. It seems like the specialists don't seem to understand how disabling the autophony can be. Or they just don't care about that aspect. It is disappointing to say the least. I have pretty much given up. This chat site has been helpful just knowing that others actually exist with the same rare condition but it seems like all options have been exhausted and beyond just moral support for each other there isn't much else left to chat about and share. I just hope your condition improves and will check in occasionally to see if you are doing anything new to help the myoclonus condition. Good luck PP
pp,
they are the same, no different from before the surgery or after, although the fullness is better.
my mri was normal, i go back to the neuro tomorrow. i will decide what to do then.
i know several people who were given back there freedom from pet, dr poe is your hope, why give up....when you know he can help you?
lib

 
Old 10-12-2004, 02:46 PM   #28
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Re: Eustachian Tube Catheter

Hi there! I have been lurking for awhile, but this is my first time to post. To give you a quick synopsis of me: I had brain surgery 3 years ago to remove a blod clot on my brain stem - thank God I came out of it almost exactly as I went in. I can still walk, talk, drive, etc. No seizure drugs needed. However, the left side of my head is "dentist numb" and I can now hear my heart beat, blood flow, and my voice booms in my head like there is water in my ear. I have gone to numerous doctors and according to them "There is nothing physically wrong with me". How frustrating is this to have them say that and know that obviously there is. I know I am not in physical pain, but this affects me emotionally. I actually had it "pop" back to normal about a year after the surgery, but it only lasted a few minutes. But this entire week, it has been "popping" back to normal every time I lay down. Unfortunately, I cannot work laying down. It's bitter-sweet to have my hearing clear up knowing that it will go back to crap the minute I get up. This has never happened for this long. I am going back to a doctor to see if they know why it's doing this and if there is anything, which there probably won't be. Sorry to vent. Thanks for "listening".

 
Old 10-12-2004, 06:04 PM   #29
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Re: Eustachian Tube Catheter

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

 
Old 02-02-2007, 07:52 PM   #30
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Question Re: Eustachian Tube Catheter

I've had a problem with my left ear for about 4 years now (since I was 13). I've seen so many doctors, been diagnosed with mental problems (even though I keep saying that it's depressing to be in so much pain you can't have a social life), had a tube placed in my ear because they thought it wasn't opening properly, and I'm just going crazy. I'm at the point where I've completely withdrawn myself socially because the pain is just too intense to handle whenever I talk. The best years of my life, just gone to waste. No one can understand what my problem is. They don't get how a "POP" can be so overwhelming or how it could take over your life. But the more research I do I'm almost positive that my problem is patulous eustachian tube.
My left ear does this HUGE pop, my voice seems so loud that I can't think of anything else except how much it hurts, then it starts spazzing out and often I hear myself breathing really loud in that ear. My sinuses also really hurt, and I get terrible migraine headaches. This isn't like once every few days, it's constant. Vicodin was giving me some relief for a while when I got my tonsils taken out (they thought that was the problem...nope) but now it seems I've grown tolerant to the medication. Plus, it's running out. I used to have so many friends, so much fun, I am such a happy person, but I can't take this pain anymore. I don't know what to do.
I was hoping that someone could answer a few questions for me. Is there a surgery that can be done to fix Patulous Eustachian Tube? If so, will you lose your hearing in that ear? Is it effective, and is there any other effective way to cure this disease? PLEEEEASE HELP me . I NNEEED YOU. I'm about to give up.

 
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