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Old 06-26-2003, 02:44 AM   #1
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Post OTOSCLEROSIS POLL-2

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

 
Old 06-26-2003, 02:57 AM   #2
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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.

 
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Old 06-26-2003, 02:03 PM   #3
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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!)

 
Old 06-26-2003, 04:00 PM   #4
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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


 
Old 06-26-2003, 05:40 PM   #5
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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.

 
Old 06-27-2003, 12:12 AM   #6
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Well you are right I am afraid of the surgery. I would like to preserve my situation like it is now and have the surgery as a backup for the future.
I will visit another ENT on the 7th of July and let you know what he suggests.
Caz
Could you please give us the numbers of your audiograms before and after the surgery? I wonder where you bone curve stands. If it is below 30DB I think they are not doing a stapedectomy. Also if the air-bone gap is less than 30DB it is not worth doing it. I cannot understand why the doctor who did the surgery could not evaluate the situation better before doing it.Or maybe it was not possible?

Keep waiting,
Cora

 
Old 06-27-2003, 05:46 AM   #7
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Quote:
Originally posted by CORA:
Well you are right I am afraid of the surgery. I would like to preserve my situation like it is now and have the surgery as a backup for the future.
Cora,

That's why God gave us 2 ears: one to stapedectomy, the other to hold in reserve.
I did one in 1979, and the other in 2003!
My first surgeon(now dead) said "If you wait til you're 60 to have the other ear done you'll hear better than any of your peers."

He was absolutely right!

But on the other hand, you know yourself. There will come a point where you'll say "WHAT?" once too often, or miss most of a once in a lifetime theatrical performance, and that will be your breaking point.
Unfortunately you will also say "Lord, why did I wait so long."


 
Old 06-30-2003, 05:17 AM   #8
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Caz

A friend of my mother has a daughter who is now 27 years old. She was diagnosed with otosclerosis when she was 7. Only one ear was affected with the disease then and she inhereted it from one of her father's cousins. She has been taking sodium fluoride for many years and according to her mother the other ear has not been influenced at all and she can hear without the help of hearing aids although the affected ear has worsen.
To tell you the truth because I have not met the girl personally I cannot verify her mother's story. I am not sure if the other ear is not affected due to the fluoride or it was not going to be affected anyway or maybe it will be affected in the future. The problem with this treatment is that nobody knows what would have happened without the fluoride taking. But I do not think it hurts to give it a try.

Still waiting for your numbers.

Cora

 
Old 07-01-2003, 02:40 AM   #9
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Dear Zip

Could you ask Dr Fishman for his opinion about Naf treatment. Is it possible when used in the very beginning of the disease to stop the worsening of hearing?
I have a great respect for his opinion as he seems to know a lot about otosclerosis.
Maybe we can all take Naf to preserve our hearing as it is now.
Thanks in advance

 
Old 07-01-2003, 10:17 AM   #10
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Cora,

I will ask when I see him probably this week.

Know well though, NaF is SERIOUSLY POTENT STUFF and not without systemic and gastrointestinal risks.

Roger

 
Old 07-01-2003, 06:04 PM   #11
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Hi Cora,I noticed my hearing loss atarted getting bad about a 1 1/2 ago..especially in my right ear with popping and cracking sounds.My hearing tests were: right ear:50DB left ear:35DB RHL=90 LHL=80 I mixedHL;air bone gaps @500,1000,2000:4000 I got this off my reports.If i remember correctly i'm around 25db in my right ear now after surgery 6 mths ago.

Zip2play and Cora, Are you going to continue with florical?Do any of you have any other probelms like popping ,cracking noises? Zip2play,How about your corrected ear..do you hear any noises?Thanks for all of your help.


 
Old 07-01-2003, 11:56 PM   #12
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Dear Texan

Thanks for your answer but I do not understand what RHL=90 and LHL=80 means. Also you mention "I mixed HL" and you do not give us the air bone gap numbers before your operation. Could you please explain?
As for the cracking noises I was diagnosed 10 years ago and the first thing I noticed was sound sensitivity to certain noises (i.e. some male voices, an airplane passing by, dishes in the kitchen. My hearing was quite good then <20db loss. The disturbance from the noises went away when my hearing loss increased. Now I do not have noise sensitivity. I am also wondering if it will come back if I have stapedectomy.
Zip
Thanks for asking your doctor about Naf. I read that it is not a drug just a food supplement and that it also prevents dental cavities. How bad can it be?

 
Old 07-02-2003, 05:18 AM   #13
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Wow, Hello Texan...ANOTHER stapedectomy (hooray)

Did you have much dizziness, vertigo for a couple weeks later?
Was there much change in your tinnitus before and after?

To answer your question, yes there is some popping and crackling which I attribute to the motion of the incus and malleus doing there normal thing- not annoying. A VERY SLIGHT inflation/deflation can make them "creak" a bit. I'm sure it's been always there but without decent conduction to the oval window I was unaware. Now that I think about it, my right ear (done a quarter century ago) does the same thing.

I'm still in the healing stage and was unhappy to get, on Saturday (16 days after surgery), a return of tinnitus with some dizziness on footfalls. Nuts, I thought the tinnitus was gone (and it WAS considerably diminished) for two weeks after the surgery.
It sdoesn;t effect the excellent hearing but I'm going to see the doc soon about it....currently taking some prdnisone to control any possible labyrinthitis.

In any case, Welcome aboard.


[This message has been edited by zip2play (edited 07-02-2003).]

 
Old 07-03-2003, 06:07 AM   #14
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CORA/Caz,

I asked my surgeon about NaF treatment to prevent the proliferation of otosclerosis.
He said, "it can't hurt."
He added that that's what the consensus is but the evidence for much effect is very scanty. But there is nothing else so it's worth a try.


 
Old 07-04-2003, 05:47 AM   #15
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Rog/Cora et al,

You're right - 'there's nothing else' so got naff-all (pardon the pun!) to lose by giving it a go.

Seems the side effects I experienced in the first few weeks of taking it have all but gone. Can't drink alcohol with it though - that's for sure! Acid city!

I'm quite happy to keep taking it for the next 20 mths as prescribed. I know my hearing won't improve but as long as it doesn't worsen then that's ok by me. They reckon sometimes it improves the tinnitus - but so far I have not found that to be so...would be an absolute Godsend if it did.

Ah well, keep taking the tablets as they say! : )

Caz

Cora - haven't forgotten about getting the test figures - just haven't been able to get hold of the audiologist bloke yet.

 
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