Tinnitus Probably Caused by Otosclerosis

Victoria76

Member
Author
Jul 23, 2019
34
Tinnitus Since
2012
Cause of Tinnitus
Unknown
Hi everyone,

First, I want to apologize for being a bit sharp when I first joined the forum some time ago. I hope you can forgive me.

Recently, I was diagnosed with osteoporosis, which has been a tough blow at just 48 years old. Since I still consider myself relatively young (and seem to be aging more slowly than most), I'm hoping to reverse it. I've already made drastic changes to my diet and started exercising with the goal of overcoming this in the next few years.

Then it hit me—my very high frequency hearing loss and tinnitus, which I've had for about 13 years, is probably due to otosclerosis. I started researching and found information about stapedectomy, but I was disappointed to learn that it doesn't restore higher frequencies, which has been the main issue for me. I should mention that I'm a serious record collector with a deep appreciation for sound quality, so dealing with this has been especially difficult at a relatively young age.

I suppose I should acknowledge a possible reason I developed osteoporosis in my early to mid-30s. I had gender reassignment surgery at 30 and was, of course, advised to take medication to reduce my increased risk. In the early years, though, I may have been a bit careless about staying on top of every dose. At the time, I thought it was one of those things that would only slightly affect the likelihood of something I wouldn't need to worry about for decades—kind of like when they say a glass of sherry can lower your risk of heart disease.

So, I'm in a difficult spot, and I'm scared. Reading about Tinnitus Quest on this forum has given me some hope for a cure in the next 5 to 10 years. But then there's the hearing loss itself. I know others are in far worse situations than me, and as a trans woman, some might see me as public enemy number one. But I've been through some horrible things in my life, and I think I deserve a second chance.

I did find a research paper about experiments with mice suggesting it might be possible to repair ossicles through diet, though that feels like a long shot. Who knows? My hearing can't be too far gone, since it's fine up to about 10k before dropping off completely. For example, I miss that little sound effect 8 minutes and 30 seconds into Fool's Gold by The Stone Roses.

Anyway, I don't feel like I have much to contribute to the forum, but I'll be checking in regularly and hoping for good news. And if I ever have money again, I'll make a donation to Tinnitus Quest.
 
Not to denigrate the sub-editor here, but I've noticed my previous post has been slightly reworded. I thought I was quite a good writer, and it's a bit weird to read something I wrote in someone else's voice. I've never come across this before. I've been rewritten for an American audience! So "I'm in a bit of a pickle" becomes "I'm in a difficult spot". Fascinating.

We don't have forums like this in the UK. Over here, there's a culture of "mustn't grumble". I think it comes from a World War II mentality.

It's ironic that all this time I was worried about whether it would one day be possible to regenerate the inner ear hair cells, while mine are probably still OK. After all, I was always careful to protect my hearing. I wonder if there's anyone else out there who has successfully rebuilt the density of their ossicle bones and recovered their hearing. It's a pretty niche category really.
 
Reading more about otosclerosis, I'm alarmed that it seems to be something that tends to result in needing hearing aids eventually. My hearing loss and tinnitus hasn't really changed much for years as far as I can tell (I had one hearing test in 2019 and it was a bit of a disaster, with noises off distracting me). I read that fluoride is good for stopping it from getting worse. I suppose the next step is getting a test to confirm that otosclerosis is indeed what I'm suffering from.

I don't just want to stop it from getting worse though. I want it to get better. What we really need is some kind of advancement in the science of replacing or regrowing the ossicles. I remember that news footage some years ago of a human ear grown on the back of a mouse. We should have made so many spare part surgery advances by now, but it just seems to have gone quiet (ha, if only!).
 

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