Pittsburgh area - need second opinion - who do you recommend?

[myrtle59]

I have a puzzling hearing disorder for the past 3 months. It is in my only hearing ear so it's distressing. The oto has tentatively guessed/diagnosed it as early meniere's but I have a lot of autophony and distortion that is not explained. Possibly PET but that is not certain either.

I would like to have a second look with new eyes from another specialist just to see if they might see something different.

Who do you recommend in the Pittsburgh area?

Thanks.

[Remmy]

Hi Myrtle.

In my opinion, the man for you is Dr. Poe, since it is very difficult to rule out PET and a real expertise about it is needed.

Bye

Remmy

[Floridagirl77]

Myrtle,

I am sorry to hear about your situation. I do not know any specific doctors in the Pittsburg area but I recommend you see a Neurotologist. They specialize in only ears and have further training than an Ear nose throat doctor. YOu can ******* Neurotologist for ones in your area. They are not very common but I know there should be a few near you.

Lastly, why I wanted to reply is I have had the same thing. It started back in 1993. Everything I heard from my left ear was very distorted. Every person sounded like a computer voice. (hard to describe) It was very upsetting to say the least!

To make a long story short the doctor diagnosed me with an Atypical form of Menieres disease called cochlear hydrops. Usually in Menieres the excess fluid pushes on the vestibular nerve but in this atypical form it pushes on the hearing portion of the inner ear.

My first run in with this lasted about four months. I was put on a low salt diet and a diruretic. That seemed to do the trick. Since then I maybe have one flare up a year where I have to go back on the diuretic, etc. but inbetween attacks my hearing has always recovered and gone back to normal.

Lastly, I should mention that other doctors I've seen through the years (I've moved four times since then!) have either agreed or disagreed with my diagnosis. So who really knows? The inner ear is a complicated thing. I just want to say that I too had those awful distorted voices but they did eventually go away. Hope this helps, hang in there and feel better soon!

[myrtle59]

Thank you for your reply! It is indeed encouraging that you had remission of symptoms after 4 months. I am at about 10 weeks and feeling this is permanent. It gives me some hope.

The dr who is treating me and his whole practice have the specialty you mention. One of the dr's there was part of the team that removed an acoustic neuroma from the now non-hearing ear 10 years ago. I have confidence in their training. My dr believes it is a form/stage of Meniere's as well but does not rule out PET when I tell him the symptoms of echoing of my own voice. It is not observable though so it's iffy. Objectively all he sees is a mild sensoneuro hearing loss with a curve that looks like Meniere's. What I experience is not mild and the loss of hearing due to distortion of incoming sounds as well is not in the least mild. My wanting to see another dr is simply wanting a different vantage point just in case. He will be doing some more tests next time I go but from what I read none of them are definitive.

May I ask you a few questions if you have time?

Did you also have an echoing of your own voice when you spoke when your symptoms were active?

Did the degree of the symptoms fluctuate from minute to minute and hour to hour all day long? Mine seem to do that and be especially hypersenstive to air pressure.

Did the improvement with the diuretic and low salt happen gradually or all at once ? What was your target daily sodium intake? Did you have any leg cramps or other problems with the diuertic? Do you feel over the years that your experience bears out that it is the diuretic/low salt that puts the symptoms into remission rather than just something that would have gone away on it's own?

I have tried the low salt/diuretic but only briefly and seen no change.

Thanks for answers to my questions when you have time. Continued good health and hearing to you!

[Floridagirl77]

Of course you may ask questions! I am happy to help with anything I can. I am sorry to hear about your other ear and the neuroma. First, I just know that this will not be permanent for you. That is exactly how I felt. I know it is so distressing! I never had echoing of my own voice. You're right that it can be PET because of that, so I am not sure exactly. Of course, it could be two things going on too. My voice always sounded distorted to me, really weird like it was someone else talking. The best way I can describe it was like hearing a synthesized voice. Not pleasant. Some people's voices sounded worse than others. I think Men sounded worse, maybe because they have a lower tone. I also had something called feedback. When I would put something near my ear, like a brush or my finger, my ear would get very full feeling and kind of hum back at me. Like when tv used to go off the air in the middle of the night, way back in the day. I also have had clicking going on in that ear, etc. I think it is good to get a second opinion. I did back in 1993 when I was first diagnosed. YOu just never know who might have had experience in a certain thing, or has an idea just how to treat whether conventional or not. I have to say I don't think my symptoms fluctuated minute to minute or hour to hour. Rather, each day was the same with a very small tiny improvement every week. I had to meausre my progress in weeks as there was no noticeable difference in days. My ears have always been sensitive to air pressure and loud sounds. I use cotton in my ears a lot, just because I think it helps protect them. I don't go to concerts at all but if I go to the circus or an ice skating performance I have to wear cotton in my ears. It just seems so loud to me. Anyway, the first diuretic I tried, dyazide, did not have any noticeable effect on me. After a month the doctor switched me to a low dose of Lasix. That is a more powerful diuretic and I don't think should be used long term. Within two or three weeks I noticed a difference. The improvement was slow and gradual. As much as I wanted to, I never woke up and said, "wow the distortion is gone!" Instead it was kind of like, "My husband doesn't sound as distorted as he once did." I don't remember exactly my target sodium intake but I cut out most canned goods and then never touched the salt shaker. To this day even when I do not have my distortion I never use the salt shaker and I rarely cook with it. Even when a recipe asks for salt, I almost never put it in. My husband has gotten used to salting his own food. Instead I try to spice things up with mrs. dash salt free blend, etc. I can't say for sure that the low salt and diuretic has made my symptoms go away for sure, or maybe they would have gone away on their own. It's hard to say for sure, it probably can't hurt to try it though to see if you get results. I do know that when I was pregnant I got the distortion really bad and I couldn't take my diuretic becasue of the pregnancy. I had it my whole last trimester, not fun. It did go away after I gave birth but who knows if it was the medicine or the fact that my body was no longer retaining fluid from my pregnancy. Sorry, I know that doesn't help a whole lot. One last thought though...... I can tell you one thing that I think plays a big role in my relapses. STRESS! When I get to feeling stressed that brings on relapses. Not easy for me as I have a tendency to get stressed and anxious over health issues! My first time being diagnosed I was on the tail end of graduating from college and felt a lot of stress from final exams, etc. I also had another episode when my husband was laid off from his job, etc. Anyway, sorry about the book here. I hope you feel better soon! Hang in there!