ENT Second Opinion-Inner Ear Disease | Arthritis Information

Some of you may remember the awful experience I had with the ENT specialist who blew me off as "preoccupied" with my symptoms of ringing in my one good ear. I saw another doctor for a second opinion and, although he couldn't give me much comfort by telling me it's not autoimmune inner ear disease, he did give me a prescription for 60 mg. of prednisone to take for three days if I suddenly lose the hearing in my good ear. (Much stronger than what the RD gave me). He also, (get this) told me to CALL HIM AT HOME ANYTIME...NIGHTS OR WEEKENDS, if I have an emergency situation with my ear. No doctor has EVER said that to me, but he is taking this seriously and I feel much better. I have his home phone number if I need it and an emergency prescription if he's out of touch by phone, to hold me until he gets home. He also ordered another audiogram and if this shows any additional hearing loss he's going to refer me to a otioligist (sp?) an ear specialist at Wake Forest University in NC.

I'm still worried about becoming totally deaf since my left ear is already useless, but at least I feel like I have a fighting chance now, with a doctor on my side. It makes all the difference.

Wow! A doctor on your side, no kidding!!!

From what you said, it sounds like this guy thinks this is fixable, and he really doesn't want you to lose your hearing. YAY

Lets hope they get this nailed and taken care of! *hugs*
That's wonderful! I'm so excited - you found a keeper! Kinda restores your faith in doctors a bit!Thanks Kaite, but unfortunately, he said treatment only works in 1/3 of all cases, and last time, it didn't work for me, but I didn't get the prednisone until 72 hours later, and that could be why. Overall, he couldn't tell me what I wanted to hear (that it might be something other than autoimmune disease causing this, or that a hearing aid might work this time if I lose this ear too) but at least I feel like I've done what I can and a doctor is working with me too. I'll take what I can get and hope for the best.

Hillhoney, I think we were posting at the same time. Thanks for your post.

Jesse882008-02-26 17:55:03Aw boo. :( Well, ya know. *sigh* Sorry! LoL

But yes, good doc and you're on the right track. *hugs*
At least you have improved your odds of restoring the hearing if this happens since the dr is taking it seriously and being so helpful. It sounds like you have found a really good dr. I'm glad it went well. So, it could be worse.

Jesse882008-02-27 07:36:34Jesse, do you get used to it so that you can hardly notice it? Like a florescent light, you know how it'll be buzzing along in the background but you never notice it till all is quiet?Glad to hear you found a doc that will work with you. And gives you the chance to call him should the need arise. Still keeping my fingers crossed for you.[QUOTE=Linncn]Jesse, do you get used to it so that you can hardly notice it? Like a florescent light, you know how it'll be buzzing along in the background but you never notice it till all is quiet?[/QUOTE]

Yes Linncn, that's true of the new ringing in the right ear because it's low level ringing. But the deaf left ear is loud static with a bit of cricket noise, bells, chirping and roaring mixed in occasionally. And it gets louder, the louder my environment is. So when I'm in a noisy room, it's almost impossible to hear because of the roaring noise in my head. Still, on most days when I'm not in a noisy situation, I often forget it's there. It's amazing how the mind/body can adjust. I guess it was either adjust or jump off a bridge, and I'm not gonna do that!!

For your deaf ear, this sounds dumb but I'm asking anyway .... lol

Does an ear plug do anything for the roaring noise???

No, because the noise is inside my head. How I wish there was an operation to stop that noise. I would be able to hear so much better without it. I remember when I first lost the left ear, for a couple of weeks it was just deafness and nothing else. That was bad, but the real trouble started when that damn noise started. Hi Jesse, your new ENT sounds like a dream come true, that's wonderful news. I'm seeing my PCP for tinnitus in my right ear next week. I'm on Plaquenil, and wondering if that's the cause. Did you ever take that?

Andrea

Well don't any of the doctors latch onto your statement about how it gets louder when you're in a loud place????

That just SCREAMS "pay attention to me!" Or is it just me?

I read a story about a boy once who was deaf from a very young age until he was in middle school. He got knocked in the head and something fell out of his ear. It was like a toy car (miniature) or something. He's had normal hearing ever since. And no, they never did see the stupid toy on any scans they did of him.

Weird, eh?????????

Hi Andrea,

Yes, I've been on 400 mg. daily since May of last year and I immediately thought that was the cause too. It's listed as a side effect but the RD, two ENT doctors and a neurologist also said that's not the cause. I don't know how they can be so sure, but when I asked the RD why he thought it was the disease process, he said because every time he takes a patient off of Plaq. because of ringing, it still doesn't go away. I tried to test that theory myself, but even just cutting the dose in half resulted in major arm pain within two days so I had to go back up to full dose. The only reason I'm not trying it again and using pain killers instead for a while, is because I'm afraid the Plaq. may be one of the things controlling the disease and then cutting the dose could cause the disease to get worse. I know MTX is used to treat autoimmune inner ear disease, but I'm not sure about Plaq. so I'm nervous about stopping or lowering it now. It's hard to ignore the advice of several doctors.

Jesse I don't know how you can stand that. I remember reading a long time ago that Barbara Streisand had tinnitus. I always thought that seemed unbearable, but yours sounds even worse. But I guess you're right. You can stand it if you have to. What's the alternative? Since the bridge is a bad idea. Very bad.Sort of off topic, years ago i read of a young girl she was supposed to be autistic and mentally retarded. Her mother noticed that she was alot worse when they were near the ocean and a few other things that made noise. She took her daughter to a doctor in a different country and had the girls hearing adjusted. Turns out she was not autistic or mentally retarded at all. When she was a baby the sound of her parents vioces was enough to drive her mad. She just had very excelerated loud hearing. She did not get fixed until she was 12 years old. So Jesse i bet that noise is really uncomfortable, but you wonder if someone somewhere could fix it? At least we will pray for you to get some help for this and it cann't hurt for us to help look around and ask our ENT's if they have any knowledge.

Yes, I sure do hope some day something can be done. But there's nothing now. I've read of people who have insisted on surgery to remove everything in the ear canal to try and stop the tinnitus and it not only doesn't work, sometimes it makes it worse. And then, you have no hearing organs at all to use if science comes up with a solution later on. Tinnitus is a very complicated issue that is not fully understood. The inner ear has been damaged, so the brain can't make sense of the sounds entering the ear canal and that causes the ringing, chirping, roaring, etc. If it was just the ear involved, the surgery might fix the noise. But with the brain being involved, all bets are off. (Sigh) So I wait and hope for some help in the future.

Milly, your offer of help is very much appreciated. I would be so thankful for any information that would end this problem. Maybe I should offer a reward?