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Otosclerosis - anyone want to talk?

32 replies

mousiemousie · 01/11/2006 17:19

Does anyone else suffer from this condition?

OP posts:
Peggotty · 05/12/2006 22:18

Coppertop just saw your other post - sorry!! Yes, I do speak very quietly as well! I was always a bit of a 'mutterer' iykwim but people are constantly asking me to repeat myself, as am I asking them to repeat THEMselves - it's a bloody farce sometimes!!

Also, just wondering if anyone - mousie, you should know this- knows if the op is on the NHS or not, I've heard that it isn't? Have BUPA health insurance but not sure they'll cover it. How much is op if not on NHS? Sorry, I am the woman of a million questions...

mousiemousie · 06/12/2006 17:47

Pegotty some surgeons would urge that you have the op sooner rather than later as it can be harder to operate once the condition has progressed further.

This certainly is an operation which is available on the nhs as losing your hearing is not exactly a cosmetic problem! You will have to wait up to 6 months for it though. As for private healthcare - it will be a 1 night stay but I have no idea of prices really...perhaps around £2k per op?

I wasn't impressed much by my hearing aid. You need to wear it most of the time to get the benefit and it will take a week or so to hear properly as your brain needs time to adjust to a new sound input. You will need to keep going back as your hearing deteriorates to get the aid adjusted. I'm no expert on hearing aids though - I didn't like them. Digital aids will probably cost at least £1k each and you will need 2 I would expect.

Most young people with this condition opt for the corrective operation rather than hearing aids and I would definitely advise you to consider this option.

Coolmama, I'm glad you have just the one ear affected. With one ear corrected and one still hearing very badly (ie after my first operation) I found locating sounds impossible and could no longer enjoy music as I couldn't hear in stereo. I also couldn't hear anyone approach from the affected side and had some overall hearing problems - some trouble with speech and needing the TV very slightly louder than other people. Do you think this condition has knocked your confidence? This was the biggest thing for me.

If there is anything anyone wants to ask me I would be happy to answer questions about my personal experience

to all fellow sufferers,
mousie xxx

OP posts:
coolmama · 06/12/2006 20:12

I haven't found it too disturbing in my day-to-day world, but I am more conscious of it when I go to sleep and am alone in the house - constantly thinking about if I will hear DS in the night if he needs me or anything else. That's really the part that gets me the most as I probably sleep "with one eye open" as my dad used to say and after a few nights like that I am generally knackered!!

Peggotty · 07/12/2006 21:27

Thanks Mousie, it's really good to get your experience/opinion on things. It's helping to get things a bit clearer in my mind. I DID have an appointment on this coming Wednesday to see someone about getting hearing aids, however I think I'll just postpone that now as I've also got another (NHS) appointment to see a different ENT consultant on the 7th Jan. I will write down the MANY questions I have, including the ones you have raised about the possibility of having the op sooner rather than later. THe hearing aid consult was going to cost £80 and there's no point paying that, let alone the (at least) couple of grand for hearing aids until I FULLY know all my options. Am feeling more and more pissed off with the bloody private consultant I saw, who diagnosed me and all but told me I COULDN'T have the op, and would have to have hearing aids. Warning bells were ringing when he said things like 'now... when your little baby girl was growing inside your tummy...' when he was describing how pregnancy had made the otosclerosis worse. FFS what am I, a half wit!!! Talk about patronising!!! Anyway, I am digressing !

Although my hearing is pretty bad, I can live with it a bit longer if I need to wait a bit for the op. My family and friends all know and can now make allowances for my terrible hearing at least. My poor DH has to sometimes answer questions for me if we're out and about, the latest being in Pizza Express when a waitress asked, 'would you like one or two balloons for your little girl?' to which I replied 'oh no we haven't booked' . I find I am half lip-reading half guessing what people are saying in certain situations!

Anyway, sorry to ramble, it's just nice to talk to people who surely understand!!

mousiemousie · 02/02/2007 21:59

Pegotty how did your appointment go?

OP posts:
DarthVader · 16/11/2007 17:39

It's a year since I had this op - just thinking about how other sufferers are getting along, anyone else had a stapedectomy?

rainForest77 · 12/05/2017 11:46

Hi all,
I have been diagnosed on both ear with otosclerosis.
In my 20' one of my ear has been operated but I do not think any better at my 40's.

I choose to have hearing aid.
Could you please share your experience.
Thanks

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