I was diagnosed with otosclerosis 15yrs ago

Posted , 3 users are following.

This discussion has been locked due to a period of inactivity. Start a new discussion

I was first diagnosed with this at 40 years of age.  Before I had children I should add.  At the time, there was a high risk of becoming permanently deaf, so I learnt to live with it.

I eventually decided that I would enquire about hearing aids ten years ago, as members of my family were complaining I was saying 'pardon' too much!!  I got some from Hidden Hearing, and after much tweeking, had these for around 6-7 years.  When they started to go wrong, I couldnot afford to go 'private' again, so went to Specsavers. 

The aids I got from Specsavers were nothing like the ones I'd had before, and I had to have them changed three times before I found ones that were "comfortable".

Then literally one morning around 8 weeks ago, I woke and couldnot hear anything from my right ear.  GP checked for wax, the aids were working ok and after another hearing test @ Specsavers, audiologist said he was going to have to refer me back to GP as the aid was turned up as far as it could be and he suggested the otosclerosis had worsened and the bone had calcified.  

So I am now waiting for my GP to refer me to ENT in London.

As I am at the moment, I wouldnt have any second thoughts about having a stapedectomy done as even if I was one of the 5% that lost their hearing altogether, it would make no difference as I cant hear out of my right ear anyway.

Someone has already recommended Mr. Jeremy Lavy to me, so I am going to ask if I can see him.

My questions are:- Is there alot of pain when its been done?  Are there any specific instructions (other than the obvious i.e. swimming) that you have to follow post op, how long you are in hospital for and did you have to take any time off work??

I cannot wait to get my hearing sorted out.  I love having a good chat on the phone, but cannot do that as I simply cannot hear them.  My left ear has deteriorated too, but I can cope with that, but I hope the otosclerosis does not manifest itself in that ear too.

I presume they do not operate on both together again for the obvious reasons of balance etc.

I so so want it all sorted out.  I want to be able to hear properly.  

If anyone could help me with my questions, I would be very very greatful.

Thanks

0 likes, 4 replies

Report

4 Replies

  • Posted

    Hi woowoo 

    well my name is Nadine i so feel for u and understand all the frustration ur going though it's harder for u due to u have children and u would be missing out so much on what there doing I feel for u so very much.  I'm 38 And I too have scolrisco but in my left ear and the same thing as your self people would be say what did u say or why are u yelling when talking so I was sent to an ent in In December of 2013 and in January 2014 he put me into hospital and put grommets in both of my ears and on the 10th of this month they were removed my right ear seems to be ok but my left ear is just so sore I have a follow up with him on Monday the 17th to have all packing removed and fine out more then. They have not tried hearing tests on me as yet but I'm starting to think that's what will end up been on the cards so I just have to wait until I speake again with him next week but I whiich u all the very best with everything ur going though xx 

    Report
  • Posted

    Hi woowoo

    I was diagnosed with otosclerosis in 2011 when I was 19 and I had stapedectomy surgery in April this year.

    In regards to the operation, it was not painful at all. I woke up after the operation and I can't even begin to describe how loud everything was. I could hear nurses talking that were on the other side of the room like they were speaking through a microphone. Everything was rattling and I almost wanted to make everything shut up! At the same time - amazing feeling!

    You're allowed to leave hospital that day but I suffered quite badly with bleeding and dizziness (more than most people) however I was anxious to leave hospital and get home. I went home for a night but had bad sickness and developed healring loss again so had to go back to hospital as these are the bad signs to look out for. I stayed there for a few days while they decided whether to re-operate (however I think it was just from the blood blocking my ear). My advice - don't try to rush your recovery, and remember that me returning to hospital is uncommon. You need someone to walk you everywhere afterwards and that's what I found extremely hard getting used to as you just want to do everything you normally do! I didn't wash my hair for two weeks out of caution and no blowing your nose hard etc. No flying for something like 6-8 weeks. No scuba diving after the op ever! I took about 3 weeks off work, i would say take two weeks minimum!

    Unfortunately my hearing now is still a bit iffy but this could be for a whole number of reasons. It's an operation not to be taken lightly but it sounds like you are in the right place, especially if you have nothing to lose! Definitely speak to your surgeons and ask all the questions you can think of. Don't be afraid to ask for their success rates! I went through the internet and developed lists of questions you should ask before having this operation. After all this, I am glad I had the operation, but would not consider operating on my other ear if it was to worsen. Some doctors think it's best to leave one ear and I'm inclinded to agree with them.

    I hope this helps

    Report
    • Posted

      Thankyou very much for your reply.  You have certainly given me some food for thought! I'm alot older than you so it's great to hear that the operation itself has a higher success rate than it used to have.  The thing I dread is the giddiness and the 3wks recovery!  But I would rather know now than when I got to the hospital! What websites did you find the most helpful?? I went on stapedectomy. Com that was very basic.  I'm a nurse so I always research if I'm ill lol. But your message wa 
      Report

Join this discussion or start a new one?

New discussion

Report as inappropriate

Thanks for your help!

We want the forums to be a useful resource for our users but it is important to remember that the forums are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the forums is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.

newnav-down newnav-up