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Diagnosed with Otosclerosis

Posted , 4 users are following.

Guest
Guest

After finding myself irritated by people never quite speaking loudly enough I've finally been to see a consultant and have been diagnosed with Otosclerosis in both ears and am due to see a surgeon specialising in the operation tomorrow morning (22/6/7).

As I'm only in my 30's I'm rather horrified at the thought of having to wear hearing aids, however worse still am concerned that if I become pregnant my hearing could be worse still.

Currently my hearing loss makes it difficult for me to hear people on the phone and in busy environments (which makes my job a bit difficult) - so I'd like to consider surgery before things get too bad - has anyone got any success stories?

0 likes, 7 replies

7 Replies

  • Guest
    Guest

    Posted

    Hi! I was first diagnosed with otosclerosis when i was 28 (9 years ago). Just after diagnosis I became pregnant and my hearing in the left ear faded to nothing. Six months after delivery I underwent surgery which was very successful although the tinnitus has never gone away. Since that time I have noticed the gradual loss of hearing on my right side, confirmed by tests, and have a hearing aid which i HATE! My second pregnancy has left me almost totally deaf and driven nuts with tinnitus, so much so that I am now trying to pluck up the courage to have a stapedectomy on the right side. The surgery itself was not painful or distressing at all, it's just a matter of finding a convenient time whislt looking after two small children! Right now I just feel like a fool, jumping out of my skin 'cos I don't hear anyone approaching, and getting really cross with all those damn \"Mumbling Joe's\". Good luck, whatever you decide to do - I'm just off to bang my head off the wall to try to quieten the hissing noises!!
  • Guest
    Guest

    Posted

    Hello

    I too have otosclerosis in both ears. Have had it for about 15 years, and been wearing hearing aids for about 4 years. I have got used to them, can be useful taking them out at night, as I too have 2 little children! (poor husband!)

    I am now wondering about the operation.....would like to know more about it.

  • Guest
    Guest

    Posted

    Glad to read that you find noisey areas frustrating too, my consultant was surprised by me claiming this. I have only just been diagnosed and have been told that I [u:0cfd9825a4]must[/u:0cfd9825a4] try hearing aids for at least 6 months before they will consider me for operation?? sad I found this also very frustrating as noone mentioned how long a waiting list is for this procedure......does anyone here know?? Is this just a way to keep me off the waiting list for a while? I am in my 30's and have been told the loss of hearing in my left ear is very substancial, though really i didnt need any doctor to tell me that lol I thought the operation would make more sense before my condition maybe gets worse???
  • Marie_d
    Marie_d

    Posted

    Hi there, I have been diagnosed with Otosclerosis in February. I'm 30 and it's not fun to be told you're going deaf is it?

    I was given an hearing aid in April, and like Delly, was told to try it out for a few months before deciding on an operation.

    It only affected my right ear at first but since a couple of weeks, I think it's started affecting the left one too sad

    It's really annoying as I can't hear things in the house and I'm really paranoid a burglar could come in and I wouldn't have a clue.

    I also find it frustrating at work since the 2 guys I work with speak with very low voices and don't make any efforts to speak clearly and a bit louder.

    The hearing aid let's face it, is not very sexy - but it has helped a lot.

    It was a big shock when the doctor suggested I should wear one and I ended up crying. I had visions of my nan battling with hers and never being able to understand what we said...

    Anyway, it is not so bad after all and i have got used to it.

    I really want to have the operation, especially if my left ear is starting to degenerate too.

    I'm a patient at the St Bartholomew Hosp in London and I'm seeing the ENT specialist again on the 8th of August.

    I will keep posting on progresses.

    • julia14447
      julia14447 Marie_d

      Posted

      How is it going?

      I am on the list for surgery and am about to have bilateral hearing aids fitted.

      Did you have the surgery?

  • julia14447
    julia14447 Guest

    Posted

    Well? Have you had any surgery?

    How is it all going? I am very interested to hear,no pun intended, how yiu are getting on.

  • jambalaya27336
    jambalaya27336 Guest

    Posted

    Hi folks,

    I am not sure if this is the right place as I am not located in he UK but I am posting anyway in case anyone has relevant information.

    I’m a 31 year old male living in San Diego, California and recently diagnosed with otosclerosis in both ears. I’ve been given the option of going through the stapedotomy surgery or using hearing aids.

    I met with Dr. Harris at UCSD who seems to have considerable experience with this surgery. I’m still in two minds about going for the surgery because of the 1% chance of failure and complications. So, I’m reaching out to see if anybody else has got the surgery done in San Diego, through him or someone else and how the experience was or if you faced any complications or lasting discomforts.

    If the surgery was successful, how soon did the improvement in hearing show up?

    Thanks for all the support and info on this forum.

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