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Thread: New member with otosclerosis

  1. #1

    Default New member with otosclerosis

    Hi I am 35 M and I have been recently diagnosed with otosclerosis. My left ear is really bad and has a ABG of upwards of 40db at most frequencies with a Carhart notch. My right seems to be normal.

    I am a bit sad due to this but cannot really help it as it is perhaps genetic, my mom has it too. My hearing was flawless even 2 years ago. It seems that that just in 2 years I went from 100% to almost no hearing in my left ear. I am going to get an HA to correct it. I am also contemplating getting a surgery and heard really good things about Dr. McKenna at MGH in Boston. My questions were

    1) For people who have had surgery it does seem that even if its successful, the effects seem to wear off, is that true?

    2) Any people here who saw Dr McKenna and got operated? Thoughts on how it went and things that I need to watch for?

    3) I have predominantly conductive loss in my left ear and am considering the Resound at Costco. I want discrete ones so will perhaps try and get the IIC ones. I was wondering if any one had thoughts there too?

    Many thanks.

  2. Default

    People I have seen who have gotten the surgeries are generally very happy. The effect can wear off over time because the disordered bone growth continues and there are diffences in the surgery that they will do depending on what they find. It is often possible to get a second (or third) surgery later. Or you could get a BAHA if the surgeries stop working or don't go well; in my limited experience, people prefer the sound quality of the BAHA over that of hearing aids for a primarily conductive loss.

    If your ear is big enough to fit the required speaker, and IIC would be a reasonable choice. Conductive loss generally needs a bit more power than a comparable sensorineural loss, and you'll need to close off the ear canal to get the low frequencies in, but if your hearing is still normal in the cochlea (otosclerosis can cause sensorineural loss, too) then you don't need a lot of the fancy processing that high end modern hearing aids have because your brain can still do that well on its own. Ask Costco about their cheapest IIC (and then act like that's difficult because as far as I know they DO have some wiggle room on their pricing, so haggling might work).

    I have been told by an ENT that I probably have otosclerosis (and have had it confirmed by otosclerosis researchers), but it was an early catch and at this point the loss is too mild for me to really do much about it. It's intersting to hear that your one ear went so rapidly. Did your hormone and/or autoimmune status change in the past two years? It's a bit nerve-wracking to imagine that my hearing might decline all of a sudden like that. I'm about your age.

  3. #3

    Default

    Thanks for the note Neville. That is good advice. Any thoughts on MGH Dr. McKenna, from what I can tell he seems one of the best and is highly regarded. He also happens to be someone who has done a lot of research on otosclerosis.

    I do read that about 30% of the people will eventually get sensorineural loss and women are more prone. Is that consistent with your understanding?

  4. Default

    I don't know Dr. McKenna.

    That is consistent with my undertanding. There's also a fairly prevalent myth that otosclerosis is make worse by pregnancy, but there's no good science to back it up.

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