I have been diagnosed with Otosclerosis in my right ear ...

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I have been diagnosed with Otosclerosis in my right ear for over 10 years now. The condition was diagnosed whislt serving in HM Forces. There is no history of this condition inmy family and it therefore came as a surprise. I was initially offerd a hearing aid but unfortunately, it was of no use. In crowded rooms, in particular, social events, I struggle to hear a basic conversation.

I have now left HM Forces and have an ENT appointment shortly. Having read up on the condition on a number of sites, it appears that surgery may be a possible alternative. Why therefore, does the NHS not offer this alternative? I for one intend to request surgery - stapedectomy - and I would advise all sufferers to research the subject and if they feel that they qualify, demand surgery also.

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  • Posted

    I have also been diagnosed with Otosclerosis and was strongly advised by the ENT Surgeon not to have surgery as it was much too risky. I too find it extremely hard to hear conversations in crowded rooms e.g. pubs, restaurants etc., and have now developed vertigo with mine as well! Unfortuantely mine is hereditory my mother is completely deaf and her mother too, also my daughter is deaf in one ear, in fact was born with problems to her hearing. I find it is very frustrating but as I am a medical secretary at the hospital I would not contemplate surgery if a consultant has advised against it.

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  • Posted

    This surgery is available via the NHS. About 750 cases per year are performed in the UK. A small number of surgeons perform over 20 cases per year each and one or two fifty plus. In experienced hands the chance of sensorineural hearing loss (nerve deafness) is less than 2%. Facial Nerve damage is a very rare complication.

    ENT-UK the Association representing Otologists produces a good pamphlet on the condition. There are also several other sites which describe the surgery involved.

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  • Posted

    I to have otosclerosis, and have had a succesful stapedectomy 10 years ago, I now have to wear a hearing aid in my left ear, and have been offered another operation, in fact i have just cancelled it, as i am nervous about having the other ear operated on just in case it is not a success. and also being 10years older wonder wether the bone graft would be as successful. my surgeon is fantastic, and was the only doctor 10 years ago to do this operation in the kent area. good luck to you all that decide on the

    operation. but i do feel if you can get by with a hearing aid, give that a try first.

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  • Posted

    i have otosclerosis which started in my late twenties I think when I look back on the whole hearing scenario. I had a left stapedectomy 5 years ago which restored the hearing levels in my left ear to normal - fantastic news. My surgeon was Mr **** from manchester who has carried out over 250 stapedectomies. Unfortunately I got an ear infection last summer - 2005 and the tiny tiny stapes prosthesis became dislodge - moved and started to work its way out of my ear - sounds painful but I was not aware it was happening other than my hearing level started to taper off. I returned to Mr **** hoping he would tell me I had wax in my ear, but not so, he looked into my ear and was amazed to see the prosthesis sticking out of my ear drum - he removed this using a pair of pincers!! no anaesthetic needed for this and gave me the said stapes bone in a little pot - i knew the 3 bones in the middle ear are the smallest bones in the body but my word it is tiny. He is now gonig to try and reinsert a different type of prothesis under local anaesthetic next week infact - its calleda bucket handle prostthesis as its looks like a tiny tiny bucket with a handle -so heres hoping its succesfully cos at the moment I am missing i reckon 70 % of some conversation. My advice to any one suffereing however, would be definitely go ahead and give it a go if you have conductive hearing loss, nerve hearing loss however as far as I am aware is a different story altogether. ps - there was never any question in manchester about the surgery not being offered to me - this seems to be the case elsewhere and i'm sorry if that is the case for some patients.

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  • Posted

    Hi

    my daughter 10year old has just found out she has olosclerosis and we have to return to the hospital in 2weeks we are all currently having mixed emotions do you have any advice for us and should we cosider the operation with her been so young.

    Thanks gayle

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  • Posted

    Who was your surgeon in Kent? I am looking for a good one in the area... Thanks!

    [quote:2d9b3c238e=\"J. N. \"]I to have otosclerosis, and have had a succesful stapedectomy 10 years ago, I now have to wear a hearing aid in my left ear, and have been offered another operation, in fact i have just cancelled it, as i am nervous about having the other ear operated on just in case it is not a success. and also being 10years older wonder wether the bone graft would be as successful. my surgeon is fantastic, and was the only doctor 10 years ago to do this operation in the kent area. good luck to you all that decide on the

    operation. but i do feel if you can get by with a hearing aid, give that a try first.

    [i:2d9b3c238e]This message was automatically imported from the original Patient Experience[/i:2d9b3c238e][/quote:2d9b3c238e]

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  • Posted

    Hi I had a stapedectomy carried out when I was 26 years old in the City Hospital Belfast. After living with the condition almost ten years I was willing to try anything that offered me the chance to regain some of

    my hearing. So I went for it without hesitation and had the procedure carried out on my right ear. For 2

    days after the surgery I was sick and dizzy, however this subsided, also I had to wait for 5 days before the packing in my ear was removed before I could find out if the surgery was a success or not. The day

    arrived for me to have the packing removed and WOW! It was like winning the Lotto for me to be able to

    hear a normal conversation and all the normal everyday sounds that I hadn't heard in years - PRICELESS!!

    Needless to say I would recommend the procedure to anyone suffering from this condition as it will

    undoubtedly restore a better quality of life!! I am currently waiting to have my left ear done and hope it is

    as successful as the right ear! Good luck hope this information helps some for anyone trying to make

    the right decision smile

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  • Posted

    Hi Dolores1.

    That's great news! Fills me with hope - I'm on the waiting list at Belfast City and am still in two minds as to risk it. I dread the thought of being totally deaf, even in 1 ear!

    I was diagnosed 5 years ago and my hearing in both ears has declined quite a lot since then. I wear an aid in my right ear successfully and am hoping to get my left ear operated on first.

    It's a struggle - especially in work - and it really stops me initiating conversation with people who aren't aware of my condition. sad

    Thanks for your positive story! smile

    Nic

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  • Posted

    Hello all,

    I've had Otosclerosis now for about 6 years, I thought my hearing loss in my right ear was due to loud music! Lol.

    I've two girls and would love more children but am so scared to have another! I want to be able to hear my children and grandchildren one day....the hearing left in my right ear after having two children is only about 10% my left ear is normal..with slight tintius.

    Does anybody have more than two children and how is your hearing after!?

    Looking at some of theses posts the operation I was so scared of having, looks like the best option for me!

    A very broody Laura! smile

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  • Posted

    Nicthechick

    Your welcome I remember when I was first diagnosed I wished I had someone to relate to but the internet wasn't as common as it is now. Forgot to mention I have the condition since I was 18 and I am now 42. The stapedectomy was carried out 16 years ago and I have never had no bother with the ear it was carried out on. Can I just say my consultant was Mr Toner at the City Hospital, and I would recommend him to anyone, he was such a nice man and came across as having a genuine interest in the condition.

    Also I can relate completely with you I ended up having to leave my job at the time as I couldn't cope with the loss of my hearing, and at the time all I could think about was will I eventually be deaf someday sad

    Hope everything goes well for you defo post how you get on and I know the results will be worth it!! smile

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  • Posted

    Hello Everyone,

    I am set to have a stapedectomy next month on my right ear, I am completely deaf in my right ear ear, and wholely relient on an aid in my left. I know this seems a bit of a silly thing to say but it seems imposible that this operation could restore some of my hearing in my right because there is nothing at all there now.

    So I was just wondering if anybody has gone from pretty much profound deafness to being able to hear again on this forum?

    Also i have never really had the chance to talk to others with otosclerosis, and am curious to find out if it effects people the same as it has me? My hearing loss is acompanied with a constant fullness feeling in my ear that never goes away, horrific tititus which rings to the rhythm of my pulse and a strange rining/sensitive sensation when I touch my ear/neck.

    I have had ct and mri scans which show there is nowt else wrong other than the stapes but havent really heard of these symptoms before in people with this condition.

    I am really looking forward to the opperation as i dowt it can make anything any worse, and i have complete faith in my doctor. So if anyone could tell me what their condition felt like while it was progressing i would be very greatfull.

    Joe

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  • Posted

    I was diagnosed with otosclerosis in right ear after birth of first child in 2007 and then also in left ear in 2011 after birth of second child! No other members of my family, parents, grandparents have had this condition so we think it was pregnancy related.

    Hearing aids in both ears and MR Toner (Ulster hospital) performed stapedectomy in right ear in June 2012 - after having packing removed it was like magic. I knew instantly it was a success. I fully recommend surgery to anyone and Mr Toner was wonderful as I had been told by my own doctor in Erne hospital that there was NO TREATMENT FOR THIS CONDTION!!! Left ear has worsened but still not rushing into surgery until we see how right ear continues. But hearing is almost normal again.

    I was advised that taking sodium fluoride may help prevent further deterioration. Has anyone else tried this?

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  • Posted

    Hi Gillsr6,

    I took NaF for 6 months. But have been told that it is only a common treatment for people have have involvement of the cochlea due to the disease. Anyway the tablets you have to take (well me anyway) are chewable tablets which taste awful. And they are only supposed to stop the condition getting worse as you said. They don't improve it. I've now been waiting for the op 10 months in the nhs an am now almost completely deaf. In both ears (still have a bit in the left with hearing aid) because I have bone growth around my cochlea the doctor has said that I will never get normal hearing back even after the op. If you can bear taking them you might as well take NaF but never noticed any benefit. Did you have or do you you have tinnitus. An if you did, did the operation help at all. I have awful pulsite tinnitus which for me is even worse than being deaf an was wondering if anybody had had the operation that previously had tinnitus? An did it make it better.

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  • Posted

    Did you buy it yourself or get it on prescrition?

    I did have tinnitus - mine was like a very high pitched buzzing noise. It has definately been reduced since stapedectomy.

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  • Posted

    I got it on prescription. But I think what they gave me was a supplement intended to strengthen your teeth. My tinnitus rings with my heart beat did you have the op done in the nhs? An if so how long did you have to wait?
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