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Old 03-31-2011, 12:21 PM   #1
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MLVCnyc HB User
Otosclerosis...non-op? :(

This is an off-shoot of my other thread here:
http://www.healthboards.com/boards/showthread.php?t=766945

So I just got back from my dr. and I'm crying hysterically. He tells me that there's no other options for me: he believes my low-frequency hearing loss and tinnitus is due to otosclerosis. He sees a very slight amount in my CAT scan. I guess it's enough to cause the 10db hearing loss in my left ear.
He also says that it's not bad enough to operate and gave me no other options. He said that we will just have to monitor the ear and see what happens. I guess if it gets worse (which he told me it always does) that we will explore the option to operate but he said that he won't touch it and neither should anyone else.

So I'm left hopeless and frustrated and severely depressed. For the last 16 months, I've held out hope that someone would have SOME idea of what is going on. This is affecting my work (I'm a sound engineer) and all of my passions outside of work. I haven't done much with myself. I've gained weight and become withdrawn.

I don't know what else to do. Does anyone have any ideas? Should I get yet ANOTHER opinion ?

 
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Old 04-02-2011, 11:06 AM   #2
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Smile Re: Otosclerosis...non-op? :(

Quote:
Originally Posted by MLVCnyc View Post
This is an off-shoot of my other thread here:
http://www.healthboards.com/boards/showthread.php?t=766945

So I just got back from my dr. and I'm crying hysterically. He tells me that there's no other options for me: he believes my low-frequency hearing loss and tinnitus is due to otosclerosis. He sees a very slight amount in my CAT scan. I guess it's enough to cause the 10db hearing loss in my left ear.
He also says that it's not bad enough to operate and gave me no other options. He said that we will just have to monitor the ear and see what happens. I guess if it gets worse (which he told me it always does) that we will explore the option to operate but he said that he won't touch it and neither should anyone else.

So I'm left hopeless and frustrated and severely depressed. For the last 16 months, I've held out hope that someone would have SOME idea of what is going on. This is affecting my work (I'm a sound engineer) and all of my passions outside of work. I haven't done much with myself. I've gained weight and become withdrawn.

I don't know what else to do. Does anyone have any ideas? Should I get yet ANOTHER opinion ?

Hi MLVC

Don't get so upset over this. The hearing will get worse but very slowly. When it gets to the point that it bothers you, get a hearing aid. That is what I did. I have otosclerosis in one ear. It took about 2 1/2 to 3 years before I went in for the hearing aid. I have an Otolens. They took a mold of my ear canal and then made this tiny hearing aid customized to my ear. It fits totally inside the ear canal and only a tiny clear thread like piece sticks out so I can grab it and pull it out at night. I tuck that piece into my ear and no one knows I have it at all. It works fantastic with this type of hearing loss, trust me. I plan to use it until it no longer works. At that point, I will probably opt for the surgery. Anyway, the audiologist hooks the hearing aid up to the computer and uses my audiogram to customize it for my particular hearing loss. With today's technology, we are unbelievable fortunate. So for now, just live your life and once the hearing loss is bad enough or if it already is, go get the hearing aid. There are much worse things that can happen to a person really. Keep it in perspective. When your eyes are bad, you get glasses. When your hearing is bad, you get a hearing aid. You have two ears and you still have one good one. This is something that a device can help solve and if it doesn't, there is a surgery that helps 90 to 95% of the time. So keep your chin up, my friend. There is hope.
Chrimar

 
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Old 04-06-2011, 06:15 AM   #3
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Fantine HB UserFantine HB UserFantine HB UserFantine HB User
Re: Otosclerosis...non-op? :(

Quote:
Originally Posted by MLVCnyc View Post
This is an off-shoot of my other thread here:
http://www.healthboards.com/boards/showthread.php?t=766945

So I just got back from my dr. and I'm crying hysterically. He tells me that there's no other options for me: he believes my low-frequency hearing loss and tinnitus is due to otosclerosis. He sees a very slight amount in my CAT scan. I guess it's enough to cause the 10db hearing loss in my left ear.
He also says that it's not bad enough to operate and gave me no other options. He said that we will just have to monitor the ear and see what happens. I guess if it gets worse (which he told me it always does) that we will explore the option to operate but he said that he won't touch it and neither should anyone else.

So I'm left hopeless and frustrated and severely depressed. For the last 16 months, I've held out hope that someone would have SOME idea of what is going on. This is affecting my work (I'm a sound engineer) and all of my passions outside of work. I haven't done much with myself. I've gained weight and become withdrawn.

I don't know what else to do. Does anyone have any ideas? Should I get yet ANOTHER opinion ?
You have to have at least a 20 dB loss before a stapedectomy would be performed. That's normal and customary medical practice.

I have bilateral otosclerosis, and my hearing loss in both ears at lower frequencies bottoms out at 50 dB, with 5-15 dB loss in higher frequencies, which is probably age-related. I wore hearing aids for 9 years until I decided to have a stapedectomy done (I had it done on my left ear yesterday, in fact). So, you DO have options. Go to an audiologist and talk to him/her about getting hearing aids, although I suspect that with only a 10 dB loss, you'll be told to wait (which might decide to do once you get some price quotes for the aids). You can see if hearing aids help you with the hearing loss and the tinnitus, while you monitor the otosclerosis. You might get enough masking of the tinnitus to make wearing hearing aids a reasonable option until your otosclerosis gets to the point where you might need surgery. Hope this helps.

 
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