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Old 04-01-2013, 09:49 AM   #1
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Eustachian Tube Dysfunction

I've had ETD for one and a half years which makes my left ear feel very full and sometimes has a little pain. Now my right ear has tinnitis and also a feeling of fullness. Had a tube inserted in left ear for 4 months but caused the ear to feel even more full so had it removed. I've been told by the doctor I have to put up with this but I find it so hard. I've had a valve replacement and two breast cancer surgeries but find this more difficult to handle than those. I would like to hear from anyone who has this condition and how they deal with it. I do take anxiety medication (low dose) but don't think it helps much. Thank you.

 
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Old 04-02-2013, 10:50 PM   #2
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Re: Eustachian Tube Dysfunction

Hi edlend-
I've been dealing with problems with my left Eustachian tube since last year. I tried everything, including a tube, but nothing worked. I ended up having the newer Eustachian tube dilation procedure done last June. It did provide some relief and I'm now able to successfully pop both ears. I do deal with pressure sensations to varying degrees however. I had 2 months of no more pressure after the procedure, then 2.5 months of pressure again despite being able to pop my ears, then 2 months of no pressure and then the pressure reappeared in January. I've been struggling with it ever since. I agree with you about how some more severe health issues can seem easier to deal with than this. I have a bladder disorder called interstitial cystitis that caused me to have to take opiate painkillers to control my pain during both of my pregnancies (thankfully 2 healthy girls soon to be 6 and 4). Thankfully it's now in remission and I only experience slight symptoms prior to my period. But that pales in comparison to this Eustachian tube nightmare. Mine stated after a cold last January and like I said, didn't even budge till my decision to have the e tube dilation in June.

What other remedies have you tried? I have been tackling my allergies with weekly shots and I take Zyrtec daily, as well as rinsing out my nose 2-3x daily to remove built up mucus and allergens. I also have been experiencing facial pain, which is new to me, and at the advice of a neurologist am looking into tmj disorder as well. What helps me daily is to gently valsalva my ears a few times a day. I think it might be more psychological than actually helpful, but it eases my mind to know that they're not stuck shut like last year.

Are you able to pop your ears? Have you had any recent pressure tests (tympanograms) after your tube removal healed? My pressure tests come back normal which boggles my mind because I feel so much pressure at times. I'm seeing another tmj dr next week to make a decision on if I should treat possible tmj disorder. I'm skeptical of the tmj thing, but an MRI showed I have some jaw misalignment, so I'm not sure.

Wishing you a good ear day tomorrow! Post back when you can too, there's lots of people suffering from this on this board.

Jen

 
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Old 04-05-2013, 10:58 AM   #3
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Re: Eustachian Tube Dysfunction

Quote:
Originally Posted by JenPlus2 View Post
Hi edlend-
I've been dealing with problems with my left Eustachian tube since last year. I tried everything, including a tube, but nothing worked. I ended up having the newer Eustachian tube dilation procedure done last June. It did provide some relief and I'm now able to successfully pop both ears. I do deal with pressure sensations to varying degrees however. I had 2 months of no more pressure after the procedure, then 2.5 months of pressure again despite being able to pop my ears, then 2 months of no pressure and then the pressure reappeared in January. I've been struggling with it ever since. I agree with you about how some more severe health issues can seem easier to deal with than this. I have a bladder disorder called interstitial cystitis that caused me to have to take opiate painkillers to control my pain during both of my pregnancies (thankfully 2 healthy girls soon to be 6 and 4). Thankfully it's now in remission and I only experience slight symptoms prior to my period. But that pales in comparison to this Eustachian tube nightmare. Mine stated after a cold last January and like I said, didn't even budge till my decision to have the e tube dilation in June.

What other remedies have you tried? I have been tackling my allergies with weekly shots and I take Zyrtec daily, as well as rinsing out my nose 2-3x daily to remove built up mucus and allergens. I also have been experiencing facial pain, which is new to me, and at the advice of a neurologist am looking into tmj disorder as well. What helps me daily is to gently valsalva my ears a few times a day. I think it might be more psychological than actually helpful, but it eases my mind to know that they're not stuck shut like last year.

Are you able to pop your ears? Have you had any recent pressure tests (tympanograms) after your tube removal healed? My pressure tests come back normal which boggles my mind because I feel so much pressure at times. I'm seeing another tmj dr next week to make a decision on if I should treat possible tmj disorder. I'm skeptical of the tmj thing, but an MRI showed I have some jaw misalignment, so I'm not sure.

Wishing you a good ear day tomorrow! Post back when you can too, there's lots of people suffering from this on this board.

Jen

 
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Old 04-05-2013, 11:31 AM   #4
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Re: Eustachian Tube Dysfunction

Hi JenPlus2

Thanks for replying to my request about ETD. My problem also started after a cold. I tried a ,lot of things to see if it might be an allergy problem. Pills, nasal spray and also took prednisone procedure.. I had two or three tympanograms and they didn't notice any great difference in the results between the good ear and the bad. I had looked into the Eustachian tube dilation procedure with the doctor in New York and was concerned the results might not be long lasting considering the cost. Did you go to the doctor in New york? My last visit to the ear doctor he indicated because I'm thin my Eustachian tube is also thin. My hearing seems normal and no fluid buildup. Did you have any fluid buildup in your ear? I have tinnitis in my right ear and it can feel full at times. Doctor also put me on depression and anxiety medication. When the weather gets worse it seems my ear feels worse. I can pop both my ears. I see where people who have had several tube procedures and still have a problem permanent tubes are put in to bypass the poor functioning Eustachian tube. I asked my family about this and he said it isn't always successful. I also checked for a possible problem with TMJ and that was ruled out. Wish there were a happy pill to take but I just have to trust the Lord to see me through each day. I will pray for you also. Do you attend church? We have a prayer chain at our church and we can request prayer for different problems It is a comfort to know others are praying for you. I have a retired friend in Florida and she has this problem. Doctors told her she should have a tube put in or else have to live with it. She refused the tube and last time I saw her she and I were complaining about out problems. I guess your girls keep you busy and that can help to not dwell on your problems. My family are grown. Thanks again for your reply and keep in touch.

 
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Old 04-05-2013, 12:27 PM   #5
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Re: Eustachian Tube Dysfunction

Edland-
I live near Chicago, so I saw a dr in Chicago for the dilation procedure. He never told me it wouldn't work for the long run, so we went ahead and had it done. It was nice to be able to pop my ears, but the back and forth of having great feeling ears and miserable feeling ears has taken its toll on me. I am tired of this chronic problem that is in my opinion, every bit as depressing and miserable as any other chronic illness.
I do go to church, my family is catholic. I pray CONSTANTLY for relief from the symptoms when they flair up. Nothing I do seems to make it go away either, when it goes away it goes away. I thought my allergies played a role, which they probably do- I've tested allergic to alot of things indoors and out-but I'm not so sure anymore because I've been testing the allergies pretty aggressively with no let up of symptoms in sight. I did start to get facial pain in my left cheek starting in February, and it was making my ears feel worse, so I saw a neurologist. She was the one to mention tmj disorder. I'm just completely at a loss. I saw a couple tmj drs and they weren't even able to read my MRI of the tmjs, but wanted to do expensive treatments. I'm not sure if I can really spend thousands just in hopes that it will help. Yes my girls keep me busy, but truly this illness has turned me into a person I don't even recognize. I'm usually super energetic and running around doing things, now I'm looking for days that I don't feel so bad to get things done. My kids definitely notice the change in me. They tell me that they're going to pray for me to get better. It's definitely hard. I do have a husband who tries his best to understand and help me so that's also a plus, but no one around me truly understands. It's hard to be dealing with this for so long. I get terrible anxiety over it, very worried, to the point that I've had to take anti anxiety meds. It takes alot of strength to deal with this and any other chronic illness. Hope you're ears aren't feeling too bad today, mine were kinda quiet earlier and just now are starting to get annoying. You keep in touch as well.
Jen

 
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Old 04-06-2013, 08:34 AM   #6
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Re: Eustachian Tube Dysfunction

Jen plus 2 so i had the ct scan done and the results were normal. My ent said that allergies are more than likely causing my problem so here we go with some more nasal spray uggggh. She also mentioned that i have a retracted ear drum. Do you have that? The weirdest thing happened to my ear last night also, i started getting a sharp cold feeling inside my ear but no pain. Im seeing a phyciatrist today due to my anxiety/depression over all these issues. Maybe some anti depressants may help, I've never ta ken them before but i need something to get my spirits up again. Have you ever been on any? Do you think they might help? Just know your not alone and even though we feel like thi, things will get better they have to. I will continue to pray for you and hope God hears my prayers.

 
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Old 04-06-2013, 09:37 AM   #7
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Re: Eustachian Tube Dysfunction

Mh-
I've been on antidepressants before but I can't tolerate the side effects. I also have anti anxiety meds that I take when things get really upsetting (klonopin). I have no way to know for sure if they might help you, but they might. My psychiatrist says that there's no magic pill to make you feel less upset over a physical illness, that taking each day at a time and accepting the changing symptoms is all that can be done. I have a hard time accepting not feeling well all the time, so I guess acceptance is probably part of it.
Feeling terrible today, having actual pain and am getting concerned about tmj disorder. I have no ear drum retraction as of yet. I'm trying to tolerate the pain as best as I can today, usually I try to avoid taking my anxiety meds till I know I have to take them, but today I might give myself a break and just take some. I hate when I get actual ear pain. It's usually in the ear and right in front of the ear at the joint, but I have no tmj joint pain when I press on it. It makes no sense.
I hope you're at least doing ok today. Keep me updated. Ill keep you in my thoughts and prayers as well.
Jen

 
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Old 04-07-2013, 09:05 AM   #8
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Re: Eustachian Tube Dysfunction

Just wanted to weigh in and say hi. Jen we talked several times last year. I have thought of you often and wondered how you were doing. I am sorry to read that you are struggling again. My symptoms have been up and down over this past year. Never completely gone, but I got to the point that with a jaw motion I was able to click and release the pressure from my ear. I got the flu two weeks ago, and it has spun me in a very bad downward spiral again. I am struggling tremendously. I am at such a loss as to the cause of my ETD as well. I do have TMJ, Menieres and after our trip to Boston an additional diagnosis of Enlarged Vestibular Aqueduct. I waited 6 months for my appointment with Dr. Poe, but unfortunately my eustachian tube was not acting then as it is now. I would give anything to have a appointment with him in my current condition. I am seriously considering the dr in New York to have the etube dilation done. The pressure, tinnitus, and hyperacusis has left me barely functioning. Prayer and is the only way I have gotten through this past 13 months.

 
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Old 04-07-2013, 10:05 AM   #9
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Re: Eustachian Tube Dysfunction

Hi Sherry-
I've thought of you guys too! I think that the dr who did my ET dilation didn't know that much about it honestly because the side effects after the surgery were horrifying. I experienced repeated episodes of patulous (open) ETD and could hear my heartbeat and voice inside my head. I would have to pinch my nose and suck in to get them to close. One time I swear to you it took like 20 minutes and I was SURE that they were stuck that way. When I spoke with my ent he was ridiculously unaware that this can be a potential side effect of the procedure and told me to only worry if I couldn't get the e tubes to re close! Are you kidding me?! Anyway the symptoms eventually died down thank goodness and I was feeling normal till September. Out of nowhere, I woke up with my left e tube feeling clogged. I remember texting my husband *911! It's back* when I got up out if bed. I tried all day to get the ear to stop feeling clogged by popping it(which I could now do) and it was like doing nothing at all. I went back to my ent who did my dilation and he checked my e tubes with the scope and said they were fine. I got mad and demanded more proof. He sent me for pressure testing and it came back normal. I was soooo confused. He told me to get checked out for tmj disorder. I blew him off because honestly I was sick of his shenanigans especially after the ET dilation. I got an opinion from another ent who said I needed to just start doing allergy shots, which I had been putting off honestly. I started the shots at the end of October and my symptoms with the ear faded by the end of November. I thought it was the shots helping but honestly I don't think so now because I learned it usually takes at least 6-12 mos to see results. I was just happy that it was gone honestly. I was symptom free again till January. I was eating breakfast, crunchy cereal, and when I took a bite something strange happened in my left cheek. A weird sharp tug or pull. It made my ear feel weird. I popped ibuprofen all day but it was no use- the next day the ear pressure was back. I made the usual dr rounds and had the usual pressure tests. Everything came back normal. I was basically told the same thing as last year- get checked for tmj disorder. I figured if I just kept up with my allergy therapy and popped my ears several times a day, it would just run its course. Unfortunately I started getting strange tightening sensations in my cheek that turned to tingling and numbing sensations. My ear popping relieved none of the ear symptoms. I was referred to a neurologist for the numbing sensations. She ordered an MRI of the brain, inner ear, and some parts of the face, as well as the tmj joints. She examined my face and felt a hard lump of what she suspected to be a spasming muscle inside my left cheek. She told me right there that she suspected tmj disorder. The MRI came back negative for brain problems, inner ear problems, trigeminal neuralgia, and showed only a slight misalignment of my jaw. She told me to see a tmj specialist because they're more adept at reading tmj MRIs. She refused to order an more pressure tests and told me my ears are not the problem. I don't know what's going on. I have a scary tightness in my face that I've never had before. I was given an Rx for zanaflex to combat possible muscle spasms. I avoided taking it for awhile till one day my face hurt so bad I was ready to try anything. I ended up feeling a bit better, though zombie like. I forced my PCP to refer me to another ent whom I will see next month. I want another opinion because I'm so used to ear problems, I simply cannot conceive that it could be anything else. My husband tells me its not my ears and that I am having some sort of facial pain syndrome or tmj problems. He thinks its ridiculous that I keep pursuing my ears as a cause. I've given in and consulted with 2 tmj 'specialists' who both couldn't even read my MRI. They both said I have tmj disorder without imaging of any sort. One even recommended that I have my wisdom teeth pulled but said it might make the tmjd worse for awhile!! The other wanted $900 for a bite splint. They both scared the heck outta me so I haven't made a move on that yet. That's my situation up to date. Still doing allergy shots and haven't had a sinus infection since last year. I also have been having reduced symptoms of stuffy nose and have no sinus disease per a ct scan done in January. I usually take Zyrtec daily but have been skipping it for a few days now because I'm not experiencing allergy symptoms honestly except for some slight nose itching and of course the ear thing which might not even be the allergies. I'm so darn frustrated because at least I knew what my problem was last year, at least till the surgery. Since September I DON'T know what my problem is. It's upsetting to say the least.

I'm sorry you're still having problems. It's nuts that your e tubes were behaving when you saw Dr Poe. I honestly don't know if I'd recommend the ET dilation though. Maybe it's because the side effects scared the heck out of me. Of course you have to make that decision yourself. I can definitely relate to the desperation. I feel desperation right now. I felt so yuck today that I ended up taking the zanaflex again today. I must say the muscle tightness is fading, though I feel like a zombie again.

Have any of your drs mentioned what they think is causing your ETD? Have they done pressure tests that showed abnormal pressure? What did Dr Poe end up saying about your e tubes? I'm curious because of jenni's experience with him last year saying it was most likely tmjd, but her tmjd treatments didn't help her because she still posts here. I wonder what exactly his criteria are to actually do the dilation? Did he say? Did he say you didn't have ETD? Looking forward to hearing from you soon.

Jen

 
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Old 04-10-2013, 11:29 AM   #10
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Re: Eustachian Tube Dysfunction

Hi Jen,
I have always had trouble with my ears clogging when flying when the plane is coming down. I had problems on our Colorado trip in 20ll when coming down from high elevations. Because of the clogging I went to the ER twice and had drops put in. After returning home I had a cold and that settled in my ears. Since then I have had problems with them being clogged.

Ever since the ETD happened I can't seem to concentrate on things I liked to do like reading. I watch a lot of TV which distracts me from my problem. When involved in groups like our bible study with other people I can pretty much forget about my problem. what do other people do to distract from the problem?

I have tried Ear Doc but it didn't work. Couldn't use OtoVent. Couldn't get enough breath.

I had thought of the tube dilation but its so expensive and sounds like it might not be reliable. Price of tube and office visit in New York is over $4,000.How does this compare with other prices in the country?

This started out in the left ear and now the right ear is somewhat effected. I have tinnitis in the right ear but not in the left. Somtimes get a very slight pain in the left ear. I don't know what is going on. We are expecting rain later in the day and I'm wondering if the weather has any effect on your ears? I just keep praying for healing or the ability to persevere if not. Ears can give you a lot of problems. One thing I can be thankful for is I have no hearing loss.

P.S. I tried the valsalva method and nothing happened. Also when I swallow I can hear my ears popping. Also my dentist checked me for TMJ problems and did not find any problem. Visit to chiropractor with no positive results.

 
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Old 04-10-2013, 12:00 PM   #11
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Arrow Re: Eustachian Tube Dysfunction

Hi edlend-
That's good that you have some distraction with your bible group. I have a hard time concentrating too when it's acting up. I have no idea how anyone deals with this for so long, especially years and years. The dilation procedure wasn't too expensive here in Chicago but not many docs do it out here, I paid maybe $1500 total with the prior exams, the dilation instrument, and the actual work of the dr. I honestly have no idea if it truly works long term or not. It does accomplish widening of the e tubes I think because I couldn't pop my ears before and now I can. But they still get stuffy and feel clogged even if I pop them several times a day. This seems like some strange phenomenon to me honestly. It makes no sense that your ears could feel clogged if they aren't. I know they aren't because they pop. Makes no sense at all. I have thought that my diagnosed environmental allergies play a big role in this but am no longer so sure. I'm attacking my allergies with everything I can and still having symptoms so again, it makes no sense. Maybe it's a muscular problem with regards to the muscles that open and close the Eustachian tubes?
I'm not sure if I'm very affected by the weather- I do have ears that are very sensitive to pressure changes, so it's possible. We have some rain and thunderstorms going on out here today, so ill see if I notice any difference in the way I feel on the next sunny day.
The only way I can deal with this is to just 'keep moving'. If I stop and think too much I end up anxious and upset for days. I take something for anxiety as well, so when I feel really bad I don't lose it. I also pray alot just the same as you- for healing or the strength to deal with it. I guess what angers me is that I've had it go away completely for awhile 2x. Why? What causes it to go away? I wish I knew. It makes me go crazy checking every avenue to try to figure it out. I will see an ent who specializes in allergies may 7th. I'm hoping she can help me figure this out somewhat. I know my allergies play a role, but how much I don't know.
Have you been checked for allergies at all? I know it seems a little silly but they can wreck havoc on your upper respiratory system. I too tried the chiro last year without success. I'm currently trying a natural anti inflammatory called zyflamend to see if it helps. My thinking is that something maybe is inflamed up there and causing this. I don't tolerate NSAIDs so this is kinda my alternative. Ill let you know how it goes, I've been trying it for a few days now.
Jen

 
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Old 04-11-2013, 11:07 AM   #12
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Re: Eustachian Tube Dysfunction

Hi Jen

You mentioned you pop your ears. Do you do it by swalloring or by valsalva? I have only been doing at by swallowing and I can hear them pop when I do that. I have never had an allergy test.

 
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Old 04-11-2013, 11:55 AM   #13
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Re: Eustachian Tube Dysfunction

Edlend-
I can pop them by valsalva or simply swallowing, though they kinda make a loud sound like they're banging open and shut when I swallow. Or yawn. I basically try to avoid anything that jars them too much unless I absolutely have to. It's strange, but no amount of popping relieves that stuffy sensation. I tell my husband I honestly sometimes think I'm going crazy and just imagining it. Today is rainy like yesterday and my husband and older daughter are complaining of itchy stuffy ears. I'm still not sure if the weather plays a role yet. My latest experiment with this is to stop taking Zyrtec for a few days to see if it changes anything. So far, I'm only noticing itchiness in my nose but no swelling (congestion). No change in how my ears feel. I'm also adding in omega 3 fish oil which is supposed to help calm inflammation. I don't think ill be taking anymore zyflamend because it causes this reflux sensation in my throat which makes it burn and in turn causes my ears to feel that burning sensation. This is strictly related to the zyflamend though. No burning any other times. Today I'm going to restart on Flonase, a nasal steroid I've used in the past but wasn't sure of its effectiveness due to forgetting to take it everyday. I'm looking for a non antihistamine approach to try dealing with the allergic symptoms because honestly I think the Zyrtec dried me out too much. I'm going to try the Flonase for a couple weeks and see what happens. The problem with this disease, and many other chronic diseases that are inflammatory in nature is that most of the treatment is guesswork/trial and error. I have a bladder condition called interstitial cystitis that causes chronic bladder inflammation and basically feels like a bladder infection 24/7. I went thru the same trial and error process with that too. Eventually I stopped all meds because it was not helping and I literally was taking daily low doses of morphine from a pain mgmt dr who didn't seem to mind that I was taking it everyday. I decided to stop and the symptoms never changed for the worse. The year before this ear stuff started I was completely in remission and its like I never had it. Strangely,I'm now having another inflammatory condition (allergies) that led to the ear thing which I never had before. It's like it moved from one area of my body to another. Alot of drs think that an over reactive immune system is the cause of several chronic inflammatory conditions, and I would agree. Allergies are proven to be caused by the immune system reacting to harmless substances. It's just such an eerie coincidence for me. I also tend to improve on oral prednisone which is an immunosuppressant. Obviously I cannot stay on that long term, but its a clue that whatever's happening is related to inflammation.
I really hope I can work out what's causing this. Did your ear troubles come before or after your other diagnoses? I always find the connections to be helpful, if there are any. I wonder if there are any for you.

When you tried valsalva and nothing happened, were you trying and trying but they just wouldn't pop open? My husband also cannot pop his ears with valsalva, nor could I till I had the dilation surgery. Are your drs telling you what they think causes your ETD?

Jen

 
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Old 04-15-2013, 12:24 PM   #14
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Re: Eustachian Tube Dysfunction

Hi Jen2,

My ear problems came several years after my other problems. My heart operation was in 2004 and my breast cancer was in 2007. I think my ear problems had its beginning on our Colorado trip. I think the cold I caught was the final straw.

I have not tried the valsalva procedure to any great degree. Maybe I should try more often. As I mentioned I can hear my ears pop when I swallow.

The only reason the doctor said could be a cause for my ETD was a narrow eustachian tube due to being thin.

I just recently read an article by Dr. Poe on eustachian tuboplasty. This article was from 2009. I have not read anything more about it. Have you ever heard of this procedure?

Today my tinnitis is bothering me in my right ear than the clogness. Hope you are doing well today.

 
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Old 04-15-2013, 12:54 PM   #15
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Re: Eustachian Tube Dysfunction

I hear Dr. Poe is quite good. I am from upstate NY and have thought about the trip to see him. It appears my eusutachian tube may not be my primary trouble. More inline with the inner ear misfunctions. Although tinnitus is prevelent, I have Autophony/Hyperacusis also! I am investigating acoustical noise as a probelm. It seems when I am outside away from walls or hardwood floors the ringing almost stops.

 
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