OTOSCLEROSIS POLL-2 - Hearing Disorders Message Board

CORA · 06-26-2003, 03:44 AM

Hi guys

Something happened and I cannot open the topic OTOSCLEROSIS POLL. Could your please reply here? I missed the last reply of today.

Thanks

CORA · 06-26-2003, 03:57 AM

OK

I opened the topic now. I am wondering what is wrong with my computer.
I read your reply Roger. You are right I did miss the 45 Db improvement in the 500Hz. That was quite amazing!
Another thing I want to add. They say that pregnancy speeds up the process of oto. I did not notice that as I was pregnant last year (gave birth 10 months ago)and my condition was not influenced by pregnancy.
Another thing a doctor told me is that if you study the audiogram of the person from which you inhereted the oto you can predict what will happen to you. In my case that is not possible as I inhereted it from my father who has passed away.

zip2play · 06-26-2003, 03:03 PM

My father's loss came on fast (by 40) and then STOPPED getting worse...he died young at 66. Blissfully I have a while to get there but I'm reasonably certain that the hearing I have oto-wise will be the hearing I take to the grave....
The super highs are bad and are likelty to stay bad...if THEY get worse as they probably will, I doubt I will notice.

Cora,

Stop diddling....get the stapedectomy. I COMMAND it! It'll be the best thing you'll ever do for yourself (unless you marry a shipping heir!)

caz 406 · 06-26-2003, 05:00 PM

Hi,

In answer to your questions - I had hearing probs as a kid and had my adenoids removed and grommets for drainage for 6 mths at age 5. All seemed ok until about 7 or 8 years ago when I found I was really struggling to hear if there was any background noise. Went to GP who referred me to ENT who said hearing loss was minimal - couldn't give me an explanation and said I could have an aid if I wanted one! Said I didn't WANT one but if it would help then yes please I would go ahead. They gave me an over-the-ear monstrosity which only magnified EVERY noise, gave me a headache and, even then at 30 I still had a bit of vanity and felt like a right geek wearing something associated with the over-70s! So I stopped wearing it. Hearing got worse and worse so went to an audiologist who referred me to a different ENT who ultimately did the stapedectomy. In the meantime I have got a digital aid which is 'completely-in-canal' and having long hair it is virtually invisible. Age now is very nearly 37.

The stapedectomy was exactly a year and a week ago! The ENT was disappointed after the surgery when my hearing was still crap so he sent me for CT and MRI scans to get a better picture (literally!!LOL) of the problem. This was when he realised how extensive it was. His expression was that the entire inner ear cavity is 'peppered' with oto. He showed me the slides and where the cochlea should be really black you could see it was only grey and where the surrounding area should be stark white in contrast you could see it was light grey. He was shocked by this as it's the worse case he's seen. He has spoken to the UK national ear guru about it apparently and decided on the two-year course of Nafril as (hopefully) the only way of stopping the growth of any more oto. It won't improve the hearing but should stop it getting any worse. They reckon it COULD reduce the tinnitus - no sign of that happening yet unfortunately! But something is definitely going on with my 'good' (rofl!!) ear - the tinnitus has changed and my voice sounds really nasal and tinny - weird. Will go to docs next week if it doesn't change - have had a bad cold over the last couple of weeks so not sure if it's just the tail end of that?

So that's my story! Considering they reckon 1 in 10 people get oto I am surprised at how few there seem to be on this site. Admittedly many people get it but don't realise for some time, but even so, am surprised that not one person so far has replied to my previous post about having any Sodium Fluoride experience...I live in hope!

Anyway, Roger (ZIP) is right - you MUST go ahead with the stapedectomy!!! I command it too!! When I was faced with the choice I thought that if I didn't have it and my hearing got steadily worse I would always wonder if it would have got better if I'd had the surgery. Even though it didn't work for me I'm glad I had it done or I should always wonder....SO DO IT!!!

You said about the oto and pregnancy - have read this before during my trawling of the www to get info about oto. I have endometriosis (gynae condition) and I have e-mailed a couple of UK universities to ask about them doing research into gynae conditions and their relationship with hearing issues - haven't had much joy though, but surely someone, somewhere must be investigating it??

Speak soon,
Caz

zip2play · 06-26-2003, 06:40 PM

Caz,

If it weren't for the INSURANCE/PAYMENT problems I'd recommend you take a weekend flight to NYC and have your other ear done by my WIZARD, Dr. Andrew Fishman at NYU Medical. His hands came straight from a merciful God! I'm sure he'd give you a good result- I really mean that.

Lord, I just thought about another BIG wrinkle: you'd have to go back on the QEII because of the 2 month prohibition on air travel afterwards.

You know, Cora brought up something interesting for you. Findo out your mastoid hearing deficiencies. If they are slight, then the "peppering of the cochlea" is just a red herring signifying nothing. But the ROUND WINDOW involvement IS a serious impediment....think about reexamining those pix and audiological tests.