Hey All — Otosclerosis Sufferer

Hi fellow members, been browsing these forums on and off for sometime and love seeing success stories.

My story is that I was diagnosed a couple of years ago (at age 32) with Otosclerosis, the reason I hear tinnitus. Pain of thing that some would see as slow torture gradually losing your hearing. For me, my left ear lost hearing profoundly and I opted for a Stapedectomy with a Dr Patel in Sydney. Surgey was an amazing success and I regained much of my lost hearing. It was such a confidence boost and my T actually dropped significantly.

Unfortunately in my situation, the Otosclerosis is evident in my cochlear after CT scan. This means the disease can continue to erode my hearing. A recent hearing test shows moderate hearing loss in both ears, which I found depressing. My hearing loss barely affects me at the moment, as my hearing is good enough to get by, however it scares me from time to time thinking I could go deaf...even worse when I know no one else who has the same disease. My family and wife are extremely supportive, but still a scary prospect to possibly deal with later in life.

My surgeon however was very positive with my hearing test and advised I should be fine for the next 15 - 20 years before needing hearing aids, which I felt good about. But there is no certainty with this disease which can either increase in accelerating or from what my surgeon hopes, has "burnt it self out"....this comment I hang onto with much hope.

This disease does tend to occupy my mind, cause varying levels of tinnitus and if your not careful, can lead to depression.

Surely, just surely something can be found that would STOP the progression of this disease. I would happily take a tablet every day to know that otosclerosis will not advance any further...happy to deal with my current levels of hearing loss.

I read articles that Vitamin D can help, fluoride can help etc but surely soon we can hopefully see something to stop this horrible disease.

I would love to hear from fellow otosclerosis sufferers and how you get by, what helps you deal with this disease and if in fact it can burn out or stop becoming active??

 

I have otosclerosis too and went through a stapedotomy about 2 years ago. My cochlea is also affected as I have sensorineural losses too.

I take heavy doses of fluoride every day hoping it can help. So far I haven't noticed a degradation of my hearing since my surgery.
If fluoride doesn't work for you you can look at bisphosphonates, but it's much more bleeding edge.

Knowing the challenges of living with this condition, I am sympathetic.

Good luck.

 

Thanks GragCA, good to meet another member who appears to be going through a similar situation as myself.

It's actually good to "hear" the progressions appears to have slowed or halted for you after surgery. I will be hoping for the same. Can I ask how much fluoride your taking daily?

I was actually readying about bisphosphonates recently that appear to show positive results.

It's actually hard to find a forum or singular point of information for otosclerosis.

 

I take 4 pills of Monocal daily. So that's 12 mg of Fluoride a day. Been on this regimen for a couple of years now.

Agreed. Even on reddit the otosclerosis subreddit is quite quiet. The info is very sparse.

 

Did you tried vitamin D?

 

I did when my levels were low. Once it reached normal levels, I went back to regular multi-vitamins, which contains Vit D, but at more reasonable levels.