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Otosclerosis - anyone want to talk?

(33 Posts)
mousiemousie Wed 01-Nov-06 17:19:30

Does anyone else suffer from this condition?

coppertop Thu 02-Nov-06 22:46:04

Hi mousiemousie. I've only just spotted your message on the BigMoFos thread.

I started losing my hearing in my early-mid 20's. The consultant told me that although they can't be 100% certain until they see inside the ear it looks as though I have otosclerosis.

You said on the other thread that you've just had the op. How did it go?

coppertop Sun 05-Nov-06 12:23:48

bump!

coppertop Thu 09-Nov-06 19:57:40

another bump!

Coolmama Thu 09-Nov-06 20:01:43

Hi there - sorry, have also just seen this thread - have fairly severe otosclerosis in my right ear but, as the left ear is still really good, have opted out of surgery and am taking a "wait and see" approach. Aside from a slight constant ringing, it's not too much of a pain. Th upside is that if I want to sleep and DH is watching some awful prgramme on TV, I just pick the appropriate side to sleep on and don't here anything at all!

sallycn Thu 09-Nov-06 20:49:41

i have it too - thought it was just one ear but turns out is both. I'm seeing a consultant next week to sort out a date for an operation. It's got steadily worse over the last couple of years - when it was just not hearing the bad tv programmes when it bed it was ok - now i have trouble keeping up with conversations - which makes me look particularly stupid at times, you know nodding when you should have been shaking your headsort of thing!

coppertop Fri 10-Nov-06 12:05:36

I know what you mean about the head-nodding instead of head-shaking thing.

Mine affects both ears. It stayed at a mild/moderate level for a couple of years but is now much worse. Even having 2 hearing-aids isn't helping much. I'm going to have to be brave and ask to be referred back to the consultant. Eeek!

wherethewildthingsare Fri 10-Nov-06 12:53:37

Hi, I have never seen this discussed before, it is hereditary in my mother's family. My grandma (now 94) has had ops with variable success. My mother has not (now 71) and is 80% deaf in one ear and 50% in the other. My sisters and I are waiting to see which of us gets it although we are now aged 37-44 and would probably have problems by now. I think I am a little deaf and it's why I tend to talk very loudly!

wherethewildthingsare Fri 10-Nov-06 12:55:14

Oh and my mum has ecxellent new hearing aids and has learnt to lip read. She did have terrible tinnitis for a while and had to go to bed with a walkman on, playing classical music so she could drop off.

wherethewildthingsare Fri 10-Nov-06 12:55:14

Oh and my mum has ecxellent new hearing aids and has learnt to lip read. She did have terrible tinnitis for a while and had to go to bed with a walkman on, playing classical music so she could drop off.

mumofteens Mon 13-Nov-06 14:46:15

I've got otosclerosis. I'm now in my mid-40s and noticed the hearing degenerating in my left ear in my mid 20s. Although I have pretty serious hearing loss in this ear, the hearing loss in my right ear is only mild, so I get by. However, I am told that you usually get it in both ears. I am hoping there will not be further degeneration in my "good" ear, as I don't really fancy the operation. Anyone else with this problem - does the hearing loss continue for ever? What's the op like? I've never tried a hearing aid, although I know it would help in my left ear. The number of times I ask people to repeat things....

Peggotty Sun 19-Nov-06 20:14:37

I'm ressurecting this thread as I was diagnosed with otosclerosis yesterday and am feeling pretty down about it. It's so vain and shallow but I am 30 and will have to wear hearing aids probably for the rest of my life, if I don't go for the op. There's a good chance I'll end up completely deaf without the operation -spadectomy, I think it's called. THe condition is 'active' in me at the moment so the consultant wouldn't want to perfrom the op until we've finished having our family. Just feeling down and a bit self-pitying about it all . Is anyone around at the moment who knows about/suffers from this condition...?

mumofteens Fri 01-Dec-06 17:25:50

Have you researched the op? I might consider having it in my "bad" ear which is really pretty bad - I can hardly hear in it at all. But the other ear is pretty good so I get by. I just can't bear the thought of a hearing aid although the ENT specialist obviously thinks I should use one. I noticed my hearing deteriorating in my mid 20s and I am now in my mid 40s - does it carry on getting worse or level out? I haven't seen the specialist for ages. I suppose I should go back but couldn't face any worse news!

mousiemousie Fri 01-Dec-06 17:43:20

Ooops! I have only just noticed the posts on this thread that I started!

I have now had stapedectomies on both ears - one very recently, and one in 2001.

I now have normal *hearing in both ears!*

Although there are some risks to the operation, I would advise all suffers to seriously consider having the op. Hearing aids aren't exactly wonderful in terms of sound quality and the idea of wearing them made me feel old. Having poor hearing was miserable and really affected my confidence.

I would advise anyone suffering with this disease to go to a surgeon who has done a lot of stapedectomies, at least 500 and preferably 1,000. Once a surgeon has done this many the risk of it going wrong tumbles from 2% to something really tiny.

This is a miserable condition and I would be happy to try to help anyone who suffers

mousie
xxx

mousiemousie Fri 01-Dec-06 17:47:28

Pegotty I was diagnosed after my pregnancy, at 32. Some doctors think hormones accelerate this degenerative condition but some disagree, so maybe you could have the op before completing your family if you want to.

I can recommend an excellent surgeon in E Anglia if anyone would find this useful.

coppertop Fri 01-Dec-06 22:19:12

Mumofteens - It seems to vary, I think. My hearing levelled out after a few years and the consultant discharged me from his list. When I moved to another city I was referred to a new consultant who said that my hearing had since deteriorated from a mild loss to a moderate loss (my audiology records were forwarded from the previous hospital). My hearing then stayed the same for 2 years in a row so I was discharged again, but I know that it has since got worse. I really should ask for another referral but I just never seem to get around to it.

Peggotty - I was given a diagnosis of otosclerosis about 4 years ago. Before I moved to a new area the previous consultant just gave me a hearing aid. The new consultant made the diagnosis as apparently my quiet voice gave it away. As you probably know already, people with other types of deafness tend to shout because they don't hear how loud they are. To me my voice sounds very loud. How are you feeling now? Sorry I didn't see your post earlier.

Mousiemousie - I remember reading somewhere that after you've had the op you have to be somewhere relatively quiet for the first couple of weeks while you get used to it. Is that true? As I said, I still need to get around to asking for another hearing test but the consultant told me last time that he wouldn't recommend the op until I'd got to a point where I had very little hearing left to lose. Did you get that stage first or did you decided to go for it before things got too bad? I'm at the point where I can hear little or nothing without hearing aids in.

mousiemousie Sat 02-Dec-06 11:19:13

Coppertop - re recovery from the op - you need to take things really easy for at least 2 weeks but you don't need to be in a quiet environment. It took 4 weeks for me to feel fully recovered but some folk go back to work after 2 weeks. You will have packing in your ear afterwards for 2 weeks so the return of hearing only comes once this is removed.

I recommend you change consultants - find one who does lots of stapedectomies for another opinion. Some consultants are very cautious and wouldn't allow patients to have both ears operated on...and if they don't do many of these ops then frankly they won't be particularly good at it and the risks will be higher.

I had my worst ear operated (they always choose the worst ear first) once I knew I was finding it difficult to hear at work - I felt too young and self concious to have 2 hearing aids. Having the first op was fabulous - made such a difference. But my unoperated ear got worse such that I couldn't hear on the phone with that ear, and I couldn't hear music in stereo or locate the direction of sounds. I briefly tried a hearing aid but didn't like it, then plucked up courage for the second op. The operations aren't much fun but the results really are lifechanging.

My biggest message to other sufferers is to go to a consultant who does a lot of these ops - the risk of it going wrong falls dramatically and the benefits are massive.

Mousie
xxx

COPPERfeelunderSantasTOP Mon 04-Dec-06 16:35:37

Thanks, Mousie.

Getting myself back on to the audiology list is something I really need to do.

mousiemousie Mon 04-Dec-06 17:19:14

coppertop do it now as you will have to wait ages for an appointment anyhow...please think about looking into the possibility of a stapedectomy again...I can talk to you about my experiences if that would be useful...I needed my family to give me the push to have the ops as I found it a hard decision to make but I am so pleased now that I went for it.

Mousie xxx

mousiemousie Mon 04-Dec-06 17:20:53

I did think that if all those silly celebs have endless cosmetic surgery why was I hesitating about surgery for something really important!

coolmama Mon 04-Dec-06 22:24:48

Hi all - for anyone considering surgery - although this is an American website, it is very inforamtive - I found it very useful and although I won't be having the op in the new future, this was very interesting to scroll through. here

coolmama Mon 04-Dec-06 22:52:57

mousiemousie - thanks also for your posts - found them really helpful.

COPPERfeelunderSantasTOP Tue 05-Dec-06 10:52:04

Mousie - I think I will. In any case I must surely be somewhere near the stage the last consultant was talking about anyway. With 2 hearing aids in I can just about follow a conversation if I can lipread at the same time. Without hearing aids I can't really hear anything.

mousiemousie Tue 05-Dec-06 19:27:29

coppertop let me know how you get on! You sound as though you have even more to gain from the op than I did...but I know it can be difficult to make the decision for the op. Somehow I hadn't realised how much more I had lost than just my hearing - I had lost a lot of confidence too...and I didn't recognise that it had been lost until I got it back. As I said, for me it was life changing and that is why I would like to share my experiences with other sufferers - because I would have liked someone to talk to when it happenend to me.

coolmama, really pleased if this helped for you...do you have the same condition? What is your story?

mousie
xxx

coolmama Tue 05-Dec-06 19:42:34

I realised the hearing in one ear was going last September when DH woke me in the middle of the night and as I sat up, I heard DS crying - had been sleeping on the "wrong " ear and didn't hear a thing. At first I thought it was just blocked and so tried unblocking, sprays, actifed and cranial osteopathy. Finally, in Sept this year, I went to see an ENT guy who diagnosed otosclerosis almost immediately. My mother went deaf very early in life and I guess that genentic fact and the birth of DS made me a "sure thing" ( as it were!) Anyway - as only one ear is affected, I will wait to see what happens before deciding on surgery etc. The humming is not too bad - a bit like a blocked ear when you have a cold and am only really concious of it when it is really quiet - doesn't bother me much during the day. I have to admit I was a bit unprepared for the diagnosis and when the specialist was talking about hearing aids, all I could think was that I was too young to be having this conversation!! - But, such is life and so we go on day by day - I am now just a lot more aware of how deaf I am on the one side and do feel strangely vulnerable - weird!

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