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Otosclerosis..... How quickly does it affect people?

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I am creating this post in the hope that I may help other people in my situation. I have just been diagnosed with Otosclerosis, and my biggest question (amongst other smaller questions) has been; How long will it take to become a significant hearing loss.

S, I want to know; how long since you first noticed a hearing loss did it take to get your hearing to the point it is at now? I know I (and others) likely won’t be affected in the same way, but what would really help me is knowing how other people have been affected by otosclerosis. So, if you have Otosclerosis, please reply and that will really help me and probably others in the same situation that I am in. We could then work out an average and perhaps give people more of an idea of how long it may take. I know that everyone is affected differently, but that is what averages are for.

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Hi,

Please don’t take this the wrong way, but what you’re asking is unlikely to yield an answer that helps you.

Otosclerosis is not typically illustrated by your loss: more often hearing losses present with a characteristic 2Khz dip (Carharts Notch). You mentioned in the other thread that you have a mixed low frequency conductive and high frequency sensorineural loss. This might be down to tympanic membrane issue, ossicular chain deformity or could be some form of stapes fixation or just two other underlying coincident conditions.

Asking for progression of otosclerosis, is unlikely to be beneficial if that’s not what you have. I’d suggest that you seek the advice of another professional to get a more positive diagnosis: ideally a specialist in the field.

As for Otosclerosis, it’s dependent on lots of factors, including the condition of the pathology, your genetic predisposition to the disorder, disease and possibly to some extent factors like diet, age and lifestyle. Collective data wouldn’t be entirely meaningless, but it would only serve to tell actual victims of the condition whether their progression was average, below or above.

@Um_bongo said:

Hi,

Please don’t take this the wrong way, but what you’re asking is unlikely to yield an answer that helps you.

Otosclerosis is not typically illustrated by your loss: more often hearing losses present with a characteristic 2Khz dip (Carharts Notch). You mentioned in the other thread that you have a mixed low frequency conductive and high frequency sensorineural loss. This might be down to tympanic membrane issue, ossicular chain deformity or could be some form of stapes fixation or just two other underlying coincident conditions.

No I didn’t mention that… I don’t have any sensorineural hearing loss.

@BeckiKinsella said:

I am creating this post in the hope that I may help other people in my situation. I have just been diagnosed with Otosclerosis, and my biggest question (amongst other smaller questions) has been; How long will it take to become a significant hearing loss.

S, I want to know; how long since you first noticed a hearing loss did it take to get your hearing to the point it is at now? I know I (and others) likely won’t be affected in the same way, but what would really help me is knowing how other people have been affected by otosclerosis. So, if you have Otosclerosis, please reply and that will really help me and probably others in the same situation that I am in. We could then work out an average and perhaps give people more of an idea of how long it may take. I know that everyone is affected differently, but that is what averages are for.

The problem with your post is Otosclerosis affects some people faster than others and with others it comes on slowly, so what your going to get is data that basically shows that with some people it came on very suddenly and with others it took years to develop. In the U.S. only .5% of the population develop Otosclerosis during their lifetime, yet post mortem studies have shown that 10% of the people had Otosclerosis like lesions yet never had symptoms of the disease, so for a vast number of people with the disease they are asymptomatic.

I would take Um Bongo’s suggestion of going to someone who specializes in Otosclerosis and get their input into how to best manage your disease if it is indeed Otosclerosis.

I can’t help answer your question, I just want to give you a hug and say “There, there. It will be ok.” I understand your need to talk with someone who is going through the same thing. Um Bongo is right that it probably won’t help your intellectual side to know how other people’s disease progressed, but I think it will help your emotional side to know you’re not alone.

–Beth

In reply to @Um_bongo

“You mentioned in the other thread that you have a mixed low frequency conductive and high frequency sensorineural loss. This might be down to tympanic membrane issue, ossicular chain deformity or could be some form of stapes fixation or just two other underlying coincident conditions.”

Um bongo;

I’m the one with the low frequency conductive loss and “possible” sensorineural hearing loss in the high frequencies. Three of the four I’ve had done in the last four months showed conductive loss in my “bad” ear; one audiogram showed what my new audiologist believes is a conductive loss in the lower frequencies and a sensorineural loss in the higher frequencies. All four audiograms have shown the Carharts Notch. The I saw is quite convinced that, at least in my “bad” ear, it is otosclerosis. He advised me that otosclerosis can also have a sensorineural component at the same time as a conductive component, and certainly many of the articles I’ve read suggest the same thing. That said, I’m waiting on a scan, and have been referred to two neuro-otologists who will hopefully be able to give me an “official” diagnosis and point me in the right direction as to whether or not there is any treatment available for my condition.

Becki…Sorry to hijack your thread. I just wanted to address what Um bongo had said:)

Kerry

Hi BeckiKinsella,
I was diagnosed with otosclerosis way back in the 70’s
I had my first left-ear stapedectomy in 1980 and my right-ear in 2001, both were very successful!
The reason for the 21 year interval was that at that time ’s firmly believed one should never operate both ears (in case one ear went bad you had the other)
Well, now, it is my right ear that is doing poorly. The ENT who did the surgery in 1980 has said to not wait, but most other ENT’s disagreed- I waited, my bad!
So, to me, my early LE stapedectomy did seem to halt otosclerosis from progressing in my L inner ear, not so lucky with my RE.
Bottom line: see a GOOD ENT, if otosclerosis, do not wait, otosclerosis is insidious! Inner ear damage (at least for now) is irreversible.
Take care, JS

In reply to @JFS

@JFS said:

Hi BeckiKinsella,
I was diagnosed with otosclerosis way back in the 70’s
I had my first left-ear stapedectomy in 1980 and my right-ear in 2001, both were very successful!
The reason for the 21 year interval was that at that time ENT’s firmly believed one should never operate both ears (in case one ear went bad you had the other)
Well, now, it is my right ear that is doing poorly. The ENT who did the surgery in 1980 has said to not wait, but most other ENT’s disagreed- I waited, my bad!
So, to me, my early LE stapedectomy did seem to halt otosclerosis from progressing in my L inner ear, not so lucky with my RE.
Bottom line: see a GOOD ENT, if otosclerosis, do not wait, otosclerosis is insidious! Inner ear damage (at least for now) is irreversible.
Take care, JS

I find this interesting.
My told me that putting off the surgery would not affect anything detrimentally, no problem in waiting. But now I read you post that says your Ent said not to wait to stop it from progressing to the inner ear. My ENT actually teaches this op at hospitals and is very credible, so I am very confused.

@wantohear said:

I find this interesting.
My ENT told me that putting off the surgery would not affect anything detrimentally, no problem in waiting. But now I read you post that says your Ent said not to wait to stop it from progressing to the inner ear. My ENT actually teaches this op at hospitals and is very credible, so I am very confused.

I recently met someone who has had otosclerosis for the last 20 years but as she has had no insurance, she has never had any treatment. It progressed to her inner ears about 8 years ago and again as she has no insurance, she didn’t get any treatment but hearing aids. In the last 3 weeks, she has now gone completely deaf where’s no hearing aid will work and she is no unable to get cochlear implants now because of the otosclerosis damaging her cochlea’s too much. She is struggling to come to terms with the fact she’s left it to late to even get cochlear implants and hearing aids have stopped working.

@Zebras said:

I recently met someone who has had otosclerosis for the last 20 years but as she has had no insurance, she has never had any treatment. It progressed to her inner ears about 8 years ago and again as she has no insurance, she didn’t get any treatment but hearing aids. In the last 3 weeks, she has now gone completely deaf where’s no hearing aid will work and she is no unable to get cochlear implants now because of the otosclerosis damaging her cochlea’s too much. She is struggling to come to terms with the fact she’s left it to late to even get cochlear implants and hearing aids have stopped working.

Do you have a link where you have read this ?

@wantohear said:

I have searched high and low for this and cannot find anything to substantiate this. Hope I am, and my ENT are right.

I too have met someone who has had their otosclerosis go into their Cochlear and their getting to the point where ’s are no longer helping much and they are effectively deaf. Some people believe Beethoven went deaf from otosclerosis. Women seem to be effected by otosclerosis a little worse than men and they seem to progress faster because of hormone changes especially during pregnancy.

I’ve had two stapedectomies, and after the first my said to not wait too long because otosclerosis does progress
I let 21 years go by before I had my other ear operated, and it is this ear that I am now loosing neurosensorial hearing
IMHO, as with any disease, waiting is to invite trouble.
JS

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