posted 06-26-2003 05:44 AM            

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

posted 06-26-2003 05:03 PM            

Cora,

posted 06-26-2003 07:00 PM            

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

posted 06-26-2003 08:40 PM            

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.

posted 06-27-2003 08:46 AM            

quote:

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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."

posted 06-30-2003 08:17 AM            

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.

posted 07-01-2003 01:17 PM            

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.

posted 07-01-2003 09:04 PM            

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.

posted 07-02-2003 08:18 AM            

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.

posted 07-03-2003 09:07 AM            

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.

posted 07-04-2003 08:47 AM            

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

posted 07-09-2003 02:58 AM            

Here are my numbers of my latest audiogram done one month ago:

RIGHT EAR LEFT EAR
AIR BONE AIR BONE
250Hz 60DB 75DB
500 55 5 60 10
1000 50 15 50 10
2000 40 20 45 15
3000 30 30 55 10
4000 25 0 40 5
6000 35 0 55 0
8000 40 - 45 -

I went to the ENT yesterday and he suggested stapedectomy on the left ear first and after 6 months on the right ear.

He said that he is doing the surgery every day and sometimes more than once a day. The problem of otosclerosis is very common in the mediteranean area and he has the highest number of surgeries (about 4000 ears only for stapedectomies).
He was very optimistic about the results and said that 99% of surgeries go well.The patients solve the problem of the stapes for the rest of their lives. Any deterioration in hearing after that is a result of nerve damage due to cochlear otosclerosis or aging.
He said that my case is a classical case of stapedial otosclerosis.
I asked about the quality of the sound after the surgery and he said that it is very good after the first 3-4 months. (No cracking or popping noises. Roger I need your experience on that).
So I have to admit that I am tempted and scared of course.
I would like to find out more info about this doctor and discuss with the patients he has operated about their experience but it is not possible because everybody is keeping it a secret. How do you find information about doctors?

Caz
I asked him about Naf treatment but he said that it is and old-fashioned belief that did not turn out to be true. They are giving it to very young people but he did not suggest it for me.

So that's the news. I am waiting for your audiograms (those of you who want to share).

Cora

posted 07-09-2003 06:48 AM            

Your audio results of course show you to be an excellent candidate. The snaps and pops are novelties that have always been there from the motion of the various bones, but with their new mobility might be more pronounced. Think of a knee that hasn't been fully straightened in years and the cracks and pops it will make when it finally IS.
Between the combination of "normal" wearing down of teeny arthritic processes and the brains ability to eliminate "dross," all that is quickly gone from your awareness- or else completely gone PERIOD.

On a crack sugeon: In the US many magazines publish lists every couple years of the "BEST DOCTORS"- they are all over the web. In my case, being a mile from Manhattan I had LOT'S of recommended ENT's to winnow through. After calling one after another (many of whom DON'T specialize in stapedectomy) I got recommendation after recommendation for Dr. Fishman. I think I got the best in NYC. Of couse all my data had to be filtered through yet another VERY important list (in the USA)- DOES A PARTICULAR DOCTOR ACCEPT MY PRIVATE INSURANCE PLAN.

Alas, I have NO idea how ATHENS works in this regard to these publications.

What is your planned time-table for surgery?

posted 07-10-2003 05:48 AM            

My biggest fear from surgery was DEATH from bungled anaesthesia( pretty big, you must admit!).
My fears might have been amplified because that's what nearly happened the first time, long ago.

I found another very real fear later which I will take with me forever: ANTIBIOTICS CAN DO SERIOUS DAMAGE especially in the presence of other drugs. In the future I will wean myself from any HBP or cholesterol loowering drugs before any surgery to avoid "surprise" interactions. Quiz your doctor about what, why and how much of eveerything he's planning on using on you.

posted 07-10-2003 06:38 AM            

I am not very much afraid of the anaesthesia (possibly because I gave birth with a C-section and an epidural and I was begging for a general). I could feel everything.

posted 07-27-2003 03:14 AM            

I was just reading your posts,

I have been taking sodium flouride for a few months now. It's not very comon because the pharmacy I used didn't stock it. I haven't had any side effects/any problems but I have heard that it can be harmful. I'm trying to find more info about it on the web.

posted 07-28-2003 06:13 PM            

Taking sodium fluoride means the risk of getting skeletal fluorisis. You should be referred to a rheumatologist (or similar) to get checked over. The one I saw didn't kmow anything about the bones within the ear though - but he's supposed to be getting back to me...

Some of the side effects I have read about can be burning in the stomach, skin irritation (sometimes severe), spots, weight loss (still waiting for that one!LOL). Been taking it since March this year and am on 50 mg a day. Found my teeth very sensitive to hot & cold for a couple of weeks but ok now. Stomach burning has also eased off now.

How long have you been told to take it for? What dosage are you on? Have you already had a stapedectomy? Have you been told to take it for life?
Is it called 'Nafril' by any chance?

Questions Questions! Zip, Cora and I are all at different stages of treatment for Oto and we're keen to get as much info as poss from other people.

posted 07-28-2003 09:14 PM            

The surgery was done with a local and went greatly. I had to be awake so that the Dr. could test my hearing as he worked and make the best adjustments. After surgery, I actually complained that it was too loud. I could hear paper rustling from over 20 feet away.

I had the second ear done a few years ago by the same Dr. The second procedure was, again, another new approach to this procedure. The idea was to modify the entry to preserve a tendon that is commonly severed. I forget the tendons name, but it serves the purpose of a reactionary tightening of the ear drum to protect from sudden loud noises--similar to the blinking reaction of the eye. This surgery too was a great success and my results were suposedly published in a medical study.

I'm sorry I do not have actual numbers, but the hearing loss was around 30dB and hearing has been restored to within normal levels, although a bit lower than ideal. I do recently note that I have a hyper sensitivity to low pitched sounds. This often causes me some concern as I think I am hearing someone thumping through the house at night, or I hear humming. I also hear rushing sounds from my pulse, more so in the second ear, but it can be very loud if I get startled by something. Every once in a while, I get a piercing phantom pain, but it passes quickly. Tinnitus is rarely present, but still exists to some degree.

posted 07-29-2003 12:18 AM            

I am 34 Y.O and was diagnosed with hearing loss aprox 1 to 1 1/2 years ago. I than went to another specialist who said it was nerve damage in both ears and oto in one. I asked about the surgery but he refused to do it because the risks outweigh the benefit. Right now I am managing without hearing aids because the lost isn't real real bad (trying to put off as long as possible) I have been taking the flouride for aprox 4 months and haven't had any side effects/problems that I can tell. I was told by the pharmasist that the drug was controversal and that I should discuss it with my Dr. It's called fluotic and the dose is 60 mg a day. I haven't been told officially that I would have to take it for life but that's the gist I got while browsing the web. I haven't decided if I will continue the drug or not but feel like I'm trapped because I don't want my hearing to get worse.

Its exhausting talking about myself!

Be Cool,
Hoodlum

quote:

---

Originally posted by caz 406:
Hi Hoodlum,

Taking sodium fluoride means the risk of getting skeletal fluorisis. You should be referred to a rheumatologist (or similar) to get checked over. The one I saw didn't kmow anything about the bones within the ear though - but he's supposed to be getting back to me...

Some of the side effects I have read about can be burning in the stomach, skin irritation (sometimes severe), spots, weight loss (still waiting for that one!LOL). Been taking it since March this year and am on 50 mg a day. Found my teeth very sensitive to hot & cold for a couple of weeks but ok now. Stomach burning has also eased off now.

How long have you been told to take it for? What dosage are you on? Have you already had a stapedectomy? Have you been told to take it for life?
Is it called 'Nafril' by any chance?

Questions Questions! Zip, Cora and I are all at different stages of treatment for Oto and we're keen to get as much info as poss from other people.

Speak soon,
Caz

---

posted 07-29-2003 03:18 AM            

Thank you for the information about your successful surgeries. I have some questions for you:
1)How is your hearing(quality of sound)from the first operated ear? Did the results last for 16 years or are you having some additional loss due to the progression of oto? Some numbers from an audiogram would help.
2)Did you experience any side effects after the surgery and what?

posted 07-29-2003 01:52 PM            

I would generalize that my overall hearing is near normal. I have diffuculty in noisy environments and probably do not have linearity in frequency sensitivity. I think above 8kHz it started to drop off. I have no paperwork or test results, but I am curious to check it out and have another hearing test. Its been about 3 years.

The surgery lasted maybe a couple of hours. The only painful part was the novicane injection, and it was extreme pain for about a minute. Thats when all the hands came and pushed my body and head into the pillow to hold me down. After that, I could hear the incision through the eardrum, and subsequent popping of the small bones. Then I could hear the sizzling of the lazer cutting the tissue and melting away the growth. Then it gets loud, after the window is cut and the piston is placed. At this point, I was drifting in and out of consiousness. The Dr. awoke me and asked to repeat the numbers he speaks. He makes adjustments and asks if that is better or worse. Every noise in the OR is loud. I awake as they are taking me out of the OR. I do not recall them placing the packing, but I can still hear. That soon fades to silence as the ear fills with fluid. I wait about 2 weeks in silence until they remove the packing. Then I can hear the air pounding my eardrum. Everything is super loud. I recall that on the second ear, that there was a rattling sound for months with loud noises (or loud talkers). This passed after about a year. I always suspected that the connection was loose, maybe the clamp was not crimped tight?

The only real side effects are occasional phantom pains that pass rapidly, but can be moderate. They remind me much of the initial novicane injection. I hear my pulse rushing almost daily, more so in the evening, when excercising, or when startled, and more so in the recently surgered ear. I am starting to hear a low pitched humming almost continuously. I have minor tinnitus. Otherwise, it all seems normal to me. It's easy to completely forget that I ever had a problem.

posted 07-30-2003 06:14 PM            

Things start adjusting over a couple of weeks after having the packing removed. I think it reached normal levels within a month, but I don't recall the exact change as it was so gradual.