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Hearing Disorders Message Board


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I don't know if I can offer you any advice but I can sympathize with you for your frustrations.

In February of 2000, I had a bad upper respiratory infection (I get them frequently actually) and woke up totally deaf in my left ear and ringing. No dizziness or anything like that. Two days later I regained some of my hearing back but the ringing stayed. I saw my GP who kept saying that it was fluid in my ears and that it would clear up. Three months went by before I got in to see an ENT. It was not just fluid buildup and the ENT said that had I gotten treatment with a steroid (like Prednisone) 24-48 hours after my hearing loss, I may have restored my hearing. I had an MRI done to check for an acoustic neuroma (MRI was negative). I have been given the diagnosis of "I don't know what the he** happened to your hearing but you probably will never get it back because of nerve damage." Four years later and still 60% deaf in my left ear and still ringing.

Like I said, I can't offer much advice but I do understand your frustration.
Molly
I would skip going to an ENT if there is suspected nerve damage and if you think the inner ear is involved. You need a neurotologist. They specialize in disorders of the inner. ENT are not as specialized with dealing with the nerves and take that otosclerosis surgery very seriously and get more than one opinion before having it done. If you've been misdiagnosed then messing with that bone will only give you multiple problems.

Sudden hearing loss should always be taken very seriously and you should head to a doctor immediately. The only known thing to work is Steroids within the first 24-48 hours but usually the gp's and even some ent's do not use a high enough dose. This type of hearing loss is usually related to allergies. If you've taken pred. and had it not help then chances are yours is not related to allergies.

I awoke almost a year ago from a nap with my 2 yo son and found myself completely deaf in one ear. I kept thinking it was just plugged and it would clear soon. By 3am I had no balance and thought I had a stroke or something ear related so decided to sleep it off (didn't work). I went to 3 different docs in the first week and all told me it was viral labrynthitis and to go home and wait it out. One doc did give me steroids but it was pretty low dose. I could actually feel both ears hurting just the one with hearing loss was VERY bad. I finally ended up in the ER clinic again with ear pain so bad that I begged them to poke a hole in my inner ear and let the pressure out. To them, my ears looked fine. I spent weeks and weeks this way waiting to get into the ENT who told me the same thing and sent me home. Had the MRI. I finally ordered my family doc to try a round of antibiotics and I did begin to feel better but all bloodwork showed no infection so who knows?

I finally got up the courage to go and see a neurotologist who did extensive hearing and balance tests. I have a complete hearing loss on left side with no word discrimination. I also have excess fluid in my inner ear that was a specialized test that very few do. What was astounding to me was my good ear tested out as having about 25% hearing loss and also excess fluid. I had no idea I had hearing loss in that ear. I have what is called hydrops which will now be a lifelong illness that is a direct result of 'the virus' or 'the stroke' that the doc thinks I may have had. My balance nerve was also effected and I test as having a vestibular dysfunction which means that almost a year later, I feel as if I'm being spun in a dryer over small movements. I loose balance in the dark, I have HORRENDOUSLY loud tinnitus and of course I'm still mourning and learning to live with the hearing loss which is progressive and I will probably end up completely or near completely deaf depending on the course this illness takes which has not been good so far. No hearing aid will help my bad ear because of all the nerve damage but I'm looking into a baha implant.

So please see a neurotologist because so much more can be going on than a regular doctor or even an ENT can see. Many people have something called Menieres that can take years and years to diagnose and it can have fluctuating hearing loss that worsens over time. Neurotologists specialize in the hearing nerve and inner ear.

BTW, with hearing loss (particularly single sided loss) crowded rooms are a REAL challenge to hear in since voices and specifics of speech are harder to distinguish. I only have mono hearing from the one side and can't tell where sounds are coming from and I have given up trying to hear a conversation in noisy restaurant. As for music, I've had a hard time with that too since we love music. I only have the distortion in one ear. It sounds to me like a blown speaker or being trapped in a charlie brown cartoon. The sounds are real scratchy and irritating. I use an ear plug in one ear to drown out most of it. Plus for me it helps those around me know which side to stand on so I can hear them. My kids tend to forget.
I can't believe this, I just wrote you a long reply and then lost it! Don't you hate that! OK, here goes again. I'm sure there is a medical term for distorted hearing, but it escapes me right now. "Recruitment" is the term for when sound hurts the ear, and I also experienced that with my hearing troubles.

My hearing (and other) problems did turn out to be due to an autoimmune disorder, Cogan's Syndrome to be exact. Cogan's is like having autoimmune ear disease but with autoimmune eye issues as well. It all began about 4 years ago when I suddenly felt very ill, extremely fatigued and lost my sense of balance (couldn't walk by myself). I was losing the hearing in both ears (one was worse than the other) by the hour, and developed tinnitus, distorted hearing and recruitment. I was treated with high dose oral prednisone and serc and very slowly recovered over the next 3 months. During those 3 months I also developed autoimmune eye problems, which I won't go on about here. It took about a year for my walking to at least look normal (even though it didn't feel it).

But, after recovering from that first attack there were many more to follow over the next 3 years. Initially both ears were attacked and then later only the left one was. My eyes were the other way around. First only one became inflamed and then in later attacks it was always both of them. Why? Who knows! I ended up getting steroid injections into my left ear at a time when it looked as though I was going to lose my hearing altogether. (The prognosis for hearing with Cogan's is poor). After only 2 injections I had quite a remarkable improvement in my hearing which was a pleasant surprise for both me and my ear doc. (He admitted later, that he really wasn't expecting such amazing results). Luckily I am what they call "steroid responsive". Wp1, if you are also reading this, I also had the hydrops test, with a positive result. All my balance tests showed that I had lost virtually all sense of balance in one ear, and a lot in the other. Blood tests have shown higher than normal ANA and CRP. These are non specific results, but indicate that inflammation is present.

Tina, I hope your upcoming appointment goes well. If you are unhappy with it, be pushy about seeing someone urgently, as some hearing problems need immediate treatment.

Keep us posted,
Susie
[QUOTE=mollyd1234]I don't know if I can offer you any advice but I can sympathize with you for your frustrations.

In February of 2000, I had a bad upper respiratory infection (I get them frequently actually) and woke up totally deaf in my left ear and ringing. No dizziness or anything like that. Two days later I regained some of my hearing back but the ringing stayed. I saw my GP who kept saying that it was fluid in my ears and that it would clear up. Three months went by before I got in to see an ENT. It was not just fluid buildup and the ENT said that had I gotten treatment with a steroid (like Prednisone) 24-48 hours after my hearing loss, I may have restored my hearing. I had an MRI done to check for an acoustic neuroma (MRI was negative). I have been given the diagnosis of "I don't know what the he** happened to your hearing but you probably will never get it back because of nerve damage." Four years later and still 60% deaf in my left ear and still ringing.

Like I said, I can't offer much advice but I do understand your frustration.
Molly[/QUOTE]



Molly,

Did you ever go back to the doctor after that or did they make any suggestions to you on what you should do (i.e. was a hearing aid every recommended to you)? The ENT now says I have otosclerosis and I could try a hearing aid or have surgery, but I am going for a second opinion. The symptoms I have read for otosclerosis just don't seem to be the same as what I have. I don't have tinnitus but have more of "distorted sounds". I also can't hear better in a crowded room, which I have read that most people with otosclerosis CAN hear better in a crowded room. Anyway, I guess I will just wait and see what they say. I really don't want to have the stapedectomy surgery so I might try a hearing aid first. I'm sure the stapedectomy has worked well for a lot of people, but I'm just a big wimp......

Tina
[QUOTE=wp1]Tina - it's not in your head (pardon the pun). Don't let anyone tell you it is. The funny noise is the way your brain is getting the signal from the inner ear. If there is damage to the hearing part of the inner ear, the signal is scrambled and you hear noises as distorted. Mine are VERY distorted in one ear but not the other. Have you had a formal hearing test by an audiologist? They should test for word discrimination which is your ability to repeat back a series of words. I can hear sounds greater than 70dbls but I can't make out any of the speech. Out of 5 words said to me in that ear, I can repeat back zero. Speech is too distorted to make out. Things like running water sounds like crackling. Music is just plain annoying. Hang in there and try a neurotologist.[/QUOTE]

wp1-Thanks for the vote of confidence. I WAS beginning to feel like maybe I am just crazy. The ENT that I have been going to has audiologist on site and they did test my hearing. I have my records but these reports are not easy (at least not for me) to make out what they mean. They did the word discrimination test and I don't really remember how many words they said to me, but out of my bad ear (right ear) I know there were at least 3 or 4 words that all I heard was wonwon. There was no way I could tell what word they said. I just pulled out the paperwork and here is what the audiological summary shows (which I have no idea how to interpret):

Speech Threshold: "Spondee" has a check mark beside it and for right ear it says 10 db. For left ear it says 0 db.

Discrimination: "LV" has a check mark beside it and for right ear it says 100% @ 60 then it has an asterisk beside the 60 which appears to mean "opposite ear masked for speech test". Left ear shows 100% @ 40.

There is also a pure tone audiometry on the same paper but it has a lot of symbols and I REALLY have no clue how to read that one. The only thing I do notice is that the symbol for right ear masked is on about the 55 decibel line under 250....whatever that means. I can give you more info if any of this makes sense to you (or anyone else).

Do you think I should just skip the 2nd opinion with another ENT. I just really don't think I have otosclerosis but after reading all these posts on healthboards, I am really discouraged at how many different doctors some people have said they went to before receiving the correct diagnosis. Thanks again for your response.....

Tina
tina - from what I can tell from your report...it is your right ear that is bad which when I looked up is the one you indicated. You can hear speech in your bad ear when it is above 10dbs in your right but you hear all speech in your left. To make out the speech in your right ear, it has to be at least 60dbs which is pretty loud so you really are having a lot of distortion in that ear. My bad ear is 0% at 70dbs which is usually loud enough to vibrate your head. I do feel for you. The distortion does not go away. I really do suggest a neurotologist...can't stress that enough when you have these types of problems. Don't let anyone do that stapendectomy (sp?) if you have any questions about the diagnosis. Also, hold hope that a hearing aid can help. I have no hope of that and my only choice is an implant.... the ugly haircut you have to sport around for months is enough to make me steer clear of that ;)
[QUOTE=wp1]tina - from what I can tell from your report...it is your right ear that is bad which when I looked up is the one you indicated. You can hear speech in your bad ear when it is above 10dbs in your right but you hear all speech in your left. To make out the speech in your right ear, it has to be at least 60dbs which is pretty loud so you really are having a lot of distortion in that ear. My bad ear is 0% at 70dbs which is usually loud enough to vibrate your head. I do feel for you. The distortion does not go away. I really do suggest a neurotologist...can't stress that enough when you have these types of problems. Don't let anyone do that stapendectomy (sp?) if you have any questions about the diagnosis. Also, hold hope that a hearing aid can help. I have no hope of that and my only choice is an implant.... the ugly haircut you have to sport around for months is enough to make me steer clear of that ;)[/QUOTE]

wp1-I really do appreciate you reading my post and taking the time to look at my report. I am getting ready to go on my insurance company website and see if I can find a neurotologist that particpates with them. I guess I'll have to call them to make sure it's covered first since that's how it goes with insurance....

Anyway, do you ever plan on getting the implant? What would be your possiblity of recovery on your hearing with the implant? I really am learning so much about hearing on these boards and the internet. Thanks again to such nice people like you who take the time to hear other people's complaints.

Tina





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