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In June 2002 I had a stapedectomy which seemed to go well but my hearing did not improve. It got worse. In both ears. I have just had a CT scan which shows otosclerosis 'peppered' around both inner ears.
My consultant says it is the worst case he has seen and has prescribed a two-year course of sodium fluoride. This has not been used in the UK for 20 years and it is not even available here - has to be imported from Germany. This is due to the controversial side effects.
Is there anyone out there who has had this treatment and can tell me how they got on please??
Thanks, Caz

[This message has been edited by caz 406 (edited 02-16-2003).]
Well I seen the consultant yesterday, and guess what he has suggested......Sodium Fluoride!
Said the number of people he has done stapedectomies on he could count on hundreds of hands, but the number of people he has referred onto Sodium Fluoride he could count on one hand. Said would have to take for rest of live which is why it is unpopular in the UK, not that it is banned or anything.
Also suggested I look it up on the internet, but can't seem to find anything of any relevance to Otosclerosis (or am I looking in the wrong place). Am leaving the tablets for six months to see if hearing gets any worse first.
:wave: \Hello Zip

I haven't been in here much recently due to working all hours but I do have a quick look through every now and then to see what's what.

How are you getting on? Your Stap thread is over 20 pages long- shows how common it is I guess and all the same worries.

I go back to my ENT consultant on Friday to see what he thinks after a whole year on the Naf. Awaiting results of blood tests to see if my vital organs are ok and bone density scan to check on the state of my skeleton.

Hopefully it will all be ok and I'll carry on with it for the second year. Oh yeh - got a 'pure-tone' test and a 'speech auditometry' test on Fri too. Still got an aid in my stap'd ear and I reckon I need it tweaking a bit - some things are getting very hard to hear sometimes.

Well, hope all is well with you.
Speak soon,
Caz :)
I'm good, caz.

Ear hears very well but the tinnitus is very loud...I just have to accept it. Partner is going deaf - nerve now I am the one shouting. Turnabout.

I read your post on the burn with acidic food and the NaF. That's my main fear for you.
I'm a chemist who once worked for a hydrofluoric acid manufacturer. It's the only chemical that will attack glass (and even GOLD) must be stored in PLATINUM.

NaF + HCl (stomach acid) = NaCl + [b]HF[/b]

A worker dropped a flask in the lab and never made it out alive...the clock and windows were all etched white....he tried to exit a locked door and crushed the doorknob in his hand before dying....Imagine the horror of it!

Hint: take the stuff with much food; better yet, immediately AFTER a meal and use antacids liberally.
Good to hear from you and thanks for the advice.

I've found if I take it even an hour after eating it really burns so now I wait until the next meal or even leave it until next day rather than take it on an empty stomach. Having to take it for two years I've sort of fitted it into my routines most of the time. Sometimes I don't take it for several days at a time if I'm really busy and just having snacks here and there. Maybe a little break from it isn't a bad thing.

Overall it's ok. Looking forward to seeing the doc tonight and having hearing tests done. Be interesting to see if there's been much difference after a year of naffing Naf! Still waiting for the side effect of weight-loss to kick in LOL

So do you take anything for your tinnitus? Mine has also stayed as bad as it ever was. Stress definitely makes it worse so I go to yoga every week and stay calm - not always easy when you're a driving instructor!

Keep smiling :)
Hi Caz, I have been reading your postsfor the last few months.
I was told that I had otosclerous, in june last year, I started of with this viberating noise in th eleft ear, and a feeling of fullness in the right one.
I get very dizzy, and of balance, and my head is all *****, like it is cloudy.
Some days I have a job to go to work, as I feel like I am drunk.
When my doctor said what was wrong with my ears, he just said,go hom eand look this up on the net, he did not say what could be done, or what I could do to help my self, nothing at all, I was so upset about it.
I feel like crap every day, I dont want to go out, and go to work, as people dont understand what is wrong with you, you look ok, but the brain does not want to work, it is very depressing.
The doc also said to have a hearing test, which I did, came out none the wiser, and have not been back since, all sounds echo in the ears, and it i svery hard to sleep.
How are you going with the drug, that you have been taking.
all the best boomerue
Hi Boomerue,

Although my stapedectomy didn't work, I'm still happy with the fact that I gave it a shot and the sodium fluroide seems to be keeping things on an even keel at the moment.

I would urge you to go back to your doc - or a different one - and ask for further action. Get another hearing test and and ask for a referral. Your symptoms are not like mine - I just can't hear! I get constant tinnitus too, but that's the extent of my oto symptoms. It sounds like you have been fobbed off. I'm certainly no expert but it's possible the dizziness etc. could be related to something else.

Don't be afraid to ask them to explain stuff to you if you don't understand it -sometimes the medics reel off loads of jargon and I always ask them to say it in words of one syllable that I can understand - I even write down a list of questions I want to ask so I don't forget anything. Take someone with you when you go to the appt so they can remember what has been said and give you some support - it's always nicer to sit and chat with someone while you wait to see the doc. I usually take my Mum with me and it's a good excuse to make an afternoon of it and go for a coffee or do a bit of shopping too!

Let us know how you get on, but DO something - you will feel better just making the appointment...good luck,
Thank you for your reply.
When I had my hearing test done, she said that I had lost a lot of hearing.
When I first got the symtons, I was exposed to some loud noise, and the next day, I was so dizzy, and had very bad vertigo.
A few months later, they said that my thyroid was out of wack, so I now take tablets for that , have been on thyroxin for 12 years, and then I started to feel a lot better.
Then in January last year, I kept getting this viberating noise in the ear, then it would go away, and then in july it came back, and I have not been the same since.
Plus at the same time I had the thyroid trouble, I was going through the menapause.
Then for a whole year, I was fine, and got my life back, but since july, I have got a ***** head, my eyes wont focus very well, and bad headaches, and feel like I am floating.
Some days I wake up, and I will feel fine, and then about 8 out of 10 days, I feel so bad.
Some times the viberating noise is there when I go to bed, that means I dont sleep all night, and then every morning, when I wake up, it is there, and then when I have been up for a few hours, it goes away, but I am left with the ***** head, and of balance all day.
I went for a eye test in august, and he said that my eyes had not changed, was happy with that, then about 6 weeks ago my eyes were going funny, with pains behind the eyes, so went and had another eye test, and I have to have new lenes in my glasses.
I wounder, if my eyes are feeling funny because I needed ne wglasses, but that would not give you the ***** head, and the blocked up hears.
He said that when I was young I must have had a lot of ear infections, but I told him I did not.
He said the skin around my ears was very thin inside, and the oscol had done that, plus arthrites in the bone.
He said that it runs in the family, well I dont know about that as all my family live in the uk, so I dont know much about the history I know some have heart troublw.
I will go next week, and get my thyroid blood test done, as I have not been since last july.
Thank you for writing back.

Hoping Zip can help me with this one please - have been prescribed some tablets for a toenail fungal infection (eeuugghh!) and wondered what curious chemical it might make mixed with the Naf.
It's called Terbinafine Hydrochloride or Lamisil. Each tab is 250mg.
Because there's no info on Naf in the UK my GP can't tell what it might do but he hopes it will be ok - ha ha. Apparently the terbinafine can cause liver dysfunction but it's rare...
Any ideas/suggestions/comments etc?????

Hi Caz,

Just new to this whole experience, and I signed on expressly because of what I read regarding your otosclerosis and fluoride treatment. I am a medical geologist who specializes in fluoride toxicity, so I am sitting here absolutely stunned that the stuff gets prescribed for oto, given that there's a very real possibility that oto may be the RESULT of chronic F over-exposure. I am very curious to know more about your oto story and how you are getting on with the NaF treatment.

Incidentally, osteoarthritis, osteoporosis, thyroid disorders and mottled teeth are also symptoms of F toxicity. I noticed that Boomerue mentioned the thyroid probs. How about you?

Hi heath, just reading your post on the boards, I went to the doc on saturday, to ask him whyI am having these problems with my eyes, as I had already been to the eye guy thinking I needed ne wglasses.
My doc seems to think that I could have sjogrens, what ever that is, the thyroid can cause this problem.
Today I have been for my blood test, and will get the results on friday.
My right eye, ha dthis pain behind it, for about 3 weeks like a eye strain, and then after I got my new glasses, it started to feel gritty, and itchy, and it feels like my glasses are dirty, and I have this pain above my eye brow, and on my temple.
So I will let you know the results of the blood teast
Hi Heath,

Thanks for your interest in this.

As far as I know I don't have any thyroid problems - but to be honest I don't really know what to look for. Have definitely found it hard to lose weight over the past year but have just put that down to getting a bit older and being a driving instructor I'm sat down all day.
My paternal grandmother had thyroid probs - I know she was on thyroxin for some years. No idea of medical history on maternal side as my mum was adopted from birth.

As I have said in all my earlier stuff I seem to be tolerating the Nafril really well. Have recently had a bone density scan which showed a slight reduction but "nothing to worry about".
My teeth are in pretty good nick - no mottling.
I eat a fairly healthy diet - well most of the time anyway! I don't drink much alcohol - that really does disagree with the Naf - burns like hell. I do sometimes take a calcium supplement but only when I think about it. Only ever drink skimmed milk, which, from what I have read has slightly more calcium than full fat milk??

My general health is good - I think. I play squash twice a week and go to a yoga class once a week.

So should I be looking out for any thyroid stuff going on? What sort of symptoms? Are there any other things I should keep an eye on?

It's interesting to get a different angle on this. Please tell me as much as you can from your perspective and if there's anything else I can tell you, please ask.

Caz :)
Sodium Fluoride does seem to help re. otoslerosis, however, when I took it, it gave me terrible stomach upset that I had difficulty eating and keeping food down. So if you have stomach problem and your taking the sodium flouride, I would check into that as a reason. From the time I discontinued the use of it, my stomach aliments went away. I believe it raised the acidity in my stomach and was causing a contraction of the esphogus(sp). But everyone system is different and poss. you can tolerate the sodium fluouride.
Hi Just found this thread. I had two stapendectomies one on each ear. The first in 1969 and the second in 1974. About five years ago I noticed I wasn't hearing as well as I had so I sought help. I got a hearing aid and have used it for the past five years successfully. I went to get a new one and was referred to an ENT. His evaluation is that the disease is progressing and I am now instructed to use Vitamin D, Calcium, and Fluoride. This I am told will stop the progression and perhaps restore some of my loss. I am interested in the comments on this thread. Can anyone tell me if they have been successful with this treatment?

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