Hi all I have been diagnosed with otosclerosis about 5 ...

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Hi all

I have been diagnosed with otosclerosis about 5 years ago, I am now in my early 30s. My right ear is quite bad, I can't use it to speak on the phone and I always have to place myself in meeting rooms / social occasions so that people stand on my left side, otherwise I can't hear.

I had an appointment at the RNTNE hospital in Kings Cross London yesterday and decided to go ahead with a stapedectomy, it is going to be performed by Mr Lavy or someone in his team. Apparently they do about 60 a year. I am quite scared about the "1%" risk of total hearing loss and wondering if there is anybody unfortunate enough who had this happened. I can't really imagine what life would be like with total hearing loss in one ear especially if the other ear is going to get worse in time. However if there is a 95% chance of improvement (which I understand is their current success rate) I am willing to risk it. Has anyone had a stapedectomy at the RNTNE before, what was it like?

Best of luck to all

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  • Posted

    HI there,

    I think you are being very brave and I want wish you all the best with the 95% of good results and much more....please come back at tell what it was like....I think we all need it....I just don't seem to gather my courage to make that final decision.

    Like you I'm also linked to the RNTNE in KIngs Cross but been offered stapedactomy by Mr. Brookes. I was under the impression he was the only one performing the op at Kings Cross. Is Mr. Lavy part of Mr. Brookes clinic or does he run his own at the RNTNE?

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  • Posted

    Hi

    I have meanwhile been in contact with other ex-patients, having just discovered there is a forum on yahoo groups on otosclerosis. Met some great people there and it's a great exchange of experience, I recommend it.

    Mr Jeremy Lavy has a clinic at RNTNE I believe it's called Mr Lavy & Lund, but I'm sure there may be others. I believe RNTNE do most stapedectomies in the UK, they told me they do about 60 a year, so they must be quite experienced. Everybody adviced me to get in contact with ex-patients and this is what I did, I have been in contact with 2 ex-patients of Mr Lavy so far, both very very pleased so it's encouraging.

    Yes it takes loads of courage to make the decision and I too feel the need to speak to other people who are going through the same experience. It's not enough to discuss with family and friends no matter how much they love you, they just don't know exactly how it feels!

    I will update this site with my experience, it may be a while until I get my appointment but will be back with news. Meanwhile if you want it would be useful if you joined the yahoo forum

    All the best

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  • Posted

    Hi there and thanks so much for writing back, I will explore the yahoo forum.

    Mr. Lavy seems to have nothing to fear as he already put you in touch with 2 of his patients. Sounds very promising.

    Mr. Brookes on the other hand only introduced me to 1 of his patients in 9 years I've known him! (That is how long I've been contemplating spatedectomy).

    I'm still wondering if 60 ops per year divided into 'however many surgeons' at RNTNE is enough to guarantee (95%). If it's only Mr. Brookes & Mr. Lavy then it may be approx 30 each...but now I suspect it could be more then 2 performing that op.

    I might be scheptical but did you know that Stapedectomy was invented by a French (now dead) surgeon? His name 'Jean Bernard Causse' is also the name of his Hospital in the south of France. (www.clinique-causse.com)

    Being the pioneers of Stapedectomy I can only assume they performe a lot more ops per year. Unfortunately they are not cheap.

    Please keep writing any news or views you may have and thanks a million again.

    Kindest Regards

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  • Posted

    Hola

    I'm writing this from Spain, thank you for the information. I don't know whether I am a patient for stapedectomy but hope to make an apointment with Mr.Lavy quite soon. I have only just been made aware of the operation and it would be wonderful to get rid of at least one hearing aid!! I've had tinnitus for about 15 years and gradually my hearing has deteriorated to such a level I have to do something - I'm in my seventies, so I know it's now or never!

    I really do wish you all the very best, please let us know how you get on!

    Best regards

    PS Does anyone have any information on costs they can share with me?

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  • Posted

    Hi,

    A few months ago, I didn't even know what otosclerosis or a stapedectomy were. A friend mentioned that her hearing had been degenerating for 10 years and that she had spent over £10,000 on hearing aids during that time. Her audiograms were getting worse and she too was told that surgery was a risky procedure with 1% chance of going deaf... the prospect of going deaf at 40 it made her feel quite down.

    I decided to look into it and spoke to old doctor friend of mine who knows most of the good (and not so good!) surgeons in France. He put me in touch with a very good ORL surgeon specialised in auditive problems and my friend came down to see him for a check-up and to see what could be done. He was astounded by her audiograms and said that she should never have been fitted with hearing aids given that her inner ear was fine and that the loss of hearing was basically a mechanical problems easily resolved with a stapedectomy . He even went as far as to say that if he had referred her to a hearing clinic for aids, they would have seriously questioned his competence!

    He then went on to say that 1% chance of total hearing loss and the idea that the operation may only be good for a few years was valid...but 15 years ago. Nowadays it is around 0.2% in France overall, that is to say including good/bad surgeons, other complications etc. Personally he has been doing 20-25 stapedectomies a year and has never had a patient lose their hearing (touch wood!) or have to wear aids. The procedure itself takes about an hour and no overnight stay is required.

    Needless to say, my friend is really thrilled and is planning to have her first stapedectomy before Xmas when work calms down (otherwise there would be no waiting time!).

    The French medical system is undoubtedly one of the best in the world but the language barrier and laws prohibiting advertising of medical services make it difficult for Brits to take advantage of it.

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  • Posted

    HI there,

    What is the name of your friend's surgeon and which Hospital/Clinic in France is she going to have the op?

    Your friend story sounds familiar...have been contemplating stapedectomy myself but I am still frozen with fear to be able to make a decision. It seems impossible to get any real statistics about surgeons and stapedectomies performed...they all claim to be operating often but no written proof in signt that they do it successfully.

    Any info you can pass on is greatly appreciated.

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  • Posted

    Hi, I have just revisited this site and read with great interest your message as I am about to go for another audiogram and visit with my consultant. So far it appears that I have a problem in the left ear only but the tinnitus and hearing loss are deteriorating fairly rapidly. My consultant painted such a gloomy picture about the success rate of stapedectomy operations in England and virtually advised me to not bother and put up with the deafness! However,I am heartened by your message particularly as I have a house in France and spend a fair amount of time there. Would you be kind enough to give me the name and any contact details of the surgeon in France? I am feeling fairly depressed about my prognosis and at my relative young age I feel I cannot just give up and do nothing. Many thanks, Sarah

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  • Posted

    Hi Sarah,

    I am in a similar boat to you, when i was in my mid twenties i developed otosclorosis in my right ear which i was advised to forget about as my left ear was working fine. The tinnitus subdued in time "two years or so" but this time was quite difficult.

    Ten years later the tinnitus became much worse and i was diagnosed with otosclorosis in my left ear also, this time was really difficult and i had counselling to help!!

    Again the surgeon focused primarily on the operation going wrong and offered a 98% success rate. My cochlear function is brilliant, some ten years better than my age, so a successful operation would hopefully see me back to my best.

    I have now been given a role on TV and am worried my hearing and my two miniature hearing aids will hold me back in that new role, yet cant stop thinking of the downsides to my life as a professional sportsman if the operation went wrong.

    Any further help and advise would be most appreciated.

    Andrew.

    PS. Have you ellected to go for the operation or wear aids?

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  • Posted

    [quote:dd84a8671a=\"X.\"]HI there,

    I think you are being very brave and I want wish you all the best with the 95% of good results and much more....please come back at tell what it was like....I think we all need it....I just don't seem to gather my courage to make that final decision.

    Like you I'm also linked to the RNTNE in KIngs Cross but been offered stapedactomy by Mr. Brookes. I was under the impression he was the only one performing the op at Kings Cross. Is Mr. Lavy part of Mr. Brookes clinic or does he run his own at the RNTNE?

    [i:dd84a8671a]This message was automatically imported from the original Patient Experience[/i:dd84a8671a][/quote:dd84a8671a]

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  • Posted

    Hi, just to say you are all brave!! I have had otoslerosis for about 9 years and i am too chicken to think about surgery. However I am quite a modern 44 year old and have been wearing hearing aids for years and they have been fantastic. Especially since I have the digital ones. My tinnitus seems extra loud when i first take them out but I have got used to it. Good luck to whatever you decide.
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  • Posted

    [quote:b6725403c0=\"A.\"]Hi all

    I have been diagnosed with otosclerosis about 5 years ago, I am now in my early 30s. My right ear is quite bad, I can't use it to speak on the phone and I always have to place myself in meeting rooms / social occasions so that people stand on my left side, otherwise I can't hear.

    I had an appointment at the RNTNE hospital in Kings Cross London yesterday and decided to go ahead with a stapedectomy, it is going to be performed by Mr Lavy or someone in his team. Apparently they do about 60 a year. I am quite scared about the \"1%\" risk of total hearing loss and wondering if there is anybody unfortunate enough who had this happened. I can't really imagine what life would be like with total hearing loss in one ear especially if the other ear is going to get worse in time. However if there is a 95% chance of improvement (which I understand is their current success rate) I am willing to risk it. Has anyone had a stapedectomy at the RNTNE before, what was it like?

    Best of luck to all

    [i:b6725403c0]This message was automatically imported from the original Patient Experience[/i:b6725403c0][/quote:b6725403c0]

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  • Posted

    Hi just read your comments about stapedectomy. I went to see ****** **** last year with otosclerosis and after usual tests was offered an operation. It didn't take me long to decide to have it done. I was very nervous on admission to the ward but felt I had'nt much to lose because my hearing on the left side very poor. The treatment and care was fantastic. Walked down to theatre put at ease, talked to by anaesthetist during op. Felt operation only took a few minutes but it wasn't according to staff, before I knew where I was I was back on ward with cup of tea and lunch! Although the first few days were uncomfortable there was not any pain as such. After 2 weeks back to get the pack out and out walking in the London traffic the noise deafening but great. I can only say I am so glad I did it I can now hear normal conversations and back in the real world again.

    [color=red:01a4d6e935](Sorry but Patient Admin have removed either a Consultants name, a Doctors name and or a Hospital / s name / s from this posting as it is the policy of Patient UK not to publish these on this forum. If you wish to communicate directly with people, you should register, for free, with the forum (click Register in the menu list below the green banner above). You and other registered members will then be able to communicate with each other via Private Messaging (PM) or e-mail.)[/color:01a4d6e935][size=9:01a4d6e935][/size:01a4d6e935]

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    • Posted

      Just wondering if you can register here so we can see the name of the doctor you mentioned in your post (which was removed by this site)?  I have a very serious ear operation coming up and extremely nervous about it, so just wondering who you had!  Thanks.
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    • Posted

      Jeremy Lavy is brilliant. Excellent surgeon and a genuinely caring person. He works out of Royal Ear Throat Nose in London and also private practice in 107 Harley Street. He specialises in stapedectomies. He's the best I've come across. You'd be in very good hands and a really nice decent guy.
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