Otosclerosis

[tjaybanx]

Just found this site so thought id join after being diagnosed with Otosclerosis in my left ear of which I'm virtually deaf so any advise would be great 😊 have two options, surgery or hearing aid, I'm a 51 yr old lady with alot of medical problems and now this as well. Its all very scary and I'm not sure which route to take and just want to regain my hearing, its very frustrating and frightening to loose sound and its a struggle each day with communication, anyone out there with this that has had the op ? Advise welcome please 😞

[gasconAlex]

I'd go with the surgery, which should be relatively quick and if there are any other problems in the middle ear the surgeon should be able to recognise and hopefully stop the damage.

I had surgery for this and other ear issues many years ago and ended up with prosthetic ear bones, which reduced the deafness. At 51 you have a lot of years to put up with a hearing aid if the operation can put it mostly right.

Another issue is where the surgeon intends to cut, I've had one surgery where all the work was done via the ear canal - this was very quick to heal. Ask the surgeon which route they intend to use, and the reasons why.

[tjaybanx in reply to gasconAlex]

Hi, thanks for your reply, my twin sons are saying the same to me and go with surgery, I hadn't thought of that its for the rest of my life if I settle for heating aid, I think surgery is best option, thanks for opening my eyes, I should have taken someone with me to my appointment as its a lot to take in, I've had so much surgery done in the past 15 yrs along with a haemorrhage and stroke so I think my answer was of haste and fear, but realistically I'm better off having it done now rather than later, thanks, you have been a great help, keep you posted

[Latkinson in reply to tjaybanx]

Hi, I had the operation for otosclerosis about 10 years ago, it wasn't painful & healed quickly, I didn't regain full hearing, but it was certainly an improvement. Unfortunately last year I suddenly lost my hearing again in the same ear. ENT couldn't say for sure why. Hearing test revealed it isn't same problem as before but likely to be down to nerve damage?? I am sceptical but have been told there's nothing more they can do. I hope your operation goes well because it did give me 9 years of improvement.

[Melita17]

Hello tjaybanx, have you had the operation? Just wondered as there is an article in the Daily Mail (2 May 2017) about this operation. Also, can you tell me how you were tested for otosclerosis. Thanks.

[Mrshanson in reply to Melita17]

Hi, I too have otosclerosis and am weighing up the operation, got hearing aids at the moment which are great but I'm only 38 and the thought of having them for the rest of my life is daunting-Bev x

[tjaybanx in reply to Mrshanson]

Hi, yes I know what you mean, I'm 51 but a young 51 😀 I am giving the aid a go for 6 months but I think my mind is made up to have the surgery in the hope of restoring the hearing loss completely.

[tjaybanx]

Hi, no I have not had the operation yet, I'm trying the hearing aid for 6 months but I must admit I can't get used to the tin sound, it sounds artificial if you know what I mean ? It's good to have hearing again if I could get over that sound ! I was having tests at the genealogy clinic and they asked if I had any problems, I said yes my left ear always seemed blocked so they sent me to ENT for hearing tests and was diagnosed there.

[Melita17 in reply to tjaybanx]

Hello tjaybanx,

It seems that your hearing problem is being handled really well by ENT. I have never been tested for otosclerosis but unlike you, my ears only get blocked when going downhill in the car, very much like being on a descending aeroplane or when I blow my nose. It takes quite a while to for that blockage to unblock. I've been twice to the nurse at my surgery but there is absolutely no wax so it beats me as to what else it is. And, I know exactly what you mean about the tinny sound when using the hearing aids. Absolutely nothing sounds natural with them on and for the life of me I cannot understand what people are saying to me, almost as if they are talking another language, so I have to look at their mouths and even then I say 'eh!'

Do I have to go back to the doctor to get a referral to ENT? I hate to go back to him as lately I've had a few problems nothing to do with hearing. By the way, one of the things said in the Daily Mail article concerning otosclerosis is that some people have vertigo and tinnitus, I have both. The vertigo is something I've had for about 15 years, long before I started to lose my hearing. And the tinnitus even longer.

Any advice from my fellow sufferers would be welcome. Thanks.

Annie