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
“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 audiograms 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 ENT 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 CT 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
Ah sorry: that’s me cross reading threads.:o
In any case that’s a reverse cookie-bite sensorineural loss, which still is atypical for Otosclerosis.
Who has the reverse cookie bite?
Yours is, per your audiogram above.
I thought so. Thanks for confirming. 
is there anything else that could cause a reverse cookie bite?
Hi Becki;
Thanks for clarifying. I was really confused when Um bongo said that I have a reverse cookie bite hearing loss! I’ve been reading a lot on the different types of hearing losses, so I was pretty sure mine wasn’t that kind of loss.
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 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.
Do you have a link where you have read this ?
No because I met her in person, I didn’t read it on line.
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 HA’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 ENT 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
A simple google search does say that Otosclerosis can start damaging your cochlears if you leave it too long…but I have no personal experience of otosclerosis.
I have done the same simple google search and found nothing that says this.
— Updated —
I have done the same simple google search and found nothing that says this other than this chat board. If you have found a link, I think we all would be interested in substantiating this discussion on this. Removing the stapes I believe does not guarantee no progression to the cochlea.Here is the link to end this belief.
https://www.bcm.edu/healthcare/care-centers/otolaryngology/procedures/stapedectomy
“Surgery does not stop the growth of otosclerosis, but usually results in correcting the hearing loss.”
— Updated —
Here is the link to end this belief of surgery stops otosclerosis linked from Baylor College of Medicine.
https://www.bcm.edu/healthcare/care-…s/stapedectomy
“Surgery does not stop the growth of otosclerosis, but usually results in correcting the hearing loss.”
This is in total agreement of what my ENT told me.
I have the same question. I know that hearing loss progresses at different rates from person to person. It might be somewhat useful to know the standard deviation and variance of this rate. I’ll have to ask the doctor the next time I see her.
As for me:
Knowledge of my hearing loss began in 2006 - that was the first time I noticed that I had slight hearing loss. At the time I was in a quiet park when I had noticed my friends could hear distant airplanes and cars approaching, but I could not hear either. From 2003 to 2009-ish I also experienced tinnitus, but thought I was hearing motors outside at night (it was a low frequency hum that I would typically notice at night or when everything was quiet). It wasn’t until I moved in 2008 that I realized the sound was in my head. I never correlated this symptom with hearing loss until around 2010. For many years I knew I had slight hearing loss, but wasn’t very concerned until I began to notice it was low frequencies that I could not hear - such as that low frequency boom sound that fireworks shot high in the air give off.
Last September (9/2013) I visited both an audiologist and an ENT surgeon. My hearing loss was finally confirmed and my initial diagnosis is otosclerosis. I have not had a CT scan. My next hearing test is in March. At this time I am considering buying hearing aids and have been using a demo pair for the last two weeks (as of 1/5/2014).
David