'hunt down the participants and ask them.' How?
A straight forward approach would be to contact the researchers at the ENT Department of Hannover Medical School, explain that you suffer from T, and since you're interested in their treatment you would like to talk to the participants in their study. Of course, chances are you would be ignored, since the participants surely have been guaranteed privacy.
If I were determined to get in touch with them, I would perhaps look at German communities for T-sufferers. Another option would be to start writing articles for some magasin or homepage for people with hearing disabilities. Once I had some articles published, I could make one about the Tinnelec implant. The opportunity to get some good PR can work wonders when it comes to make people cooperate.
But frankly, I have no interest of what so ever to have a Tinnelec implant myself no matter how well it worked out for others. I just think it's good that there are some serious attempts to adress the neurons that are messin' about. I won't try any invasive treatment until it's perfectly clear that it works and there will be no nasty surprises afterwards. I got T because I lowered my guard, and I'd rather die than repeat that mistake.
I'd rather die in any case of course, but that's not the point.
I'm scared of the side effects of drugs. Most do more damage than good. Besides, is there really any drug that can provide silence? Real silence?
Not that I know of, but perhaps you could find something that at least quiet it down a little bit, or help you to relax. But I'd be scared of the side effects as well, and I would't use anything unless I've confirmed that there are people here on TT that do, without getting any worse.
Chances are there will be an effective drug eventually, though. Normally, I'm not the one to believe that medical science will help me out, but I stumbled across a TT-member called ResonanceCeo, and after reading his background and posts, I started to wonder. The fella is about to go deaf and suffer from T himself. He's the CEO of a medical device company in Chicago, which works with some big shot at Northwestern University. Here is what he writes in his
presentation:
Even before I began to get hearing loss, I always have been unnaturally fascinated by the ear. I spent spent 3 months drilling the ear structures out of temporal bones during medical school while I was on a family medicine rotation. I would go to the lab after clinic and drill late into the night - even on weekends. I know that's weird - I don't know anyone who has ever done that.
Its really a strange coincidence that I ended up with such bad hearing loss - kind of like fate, because despite my interest in the ear, I would not have pursued this so strongly if I did not have the threat of losing my own hearing.
Now, I have all kind of strange hobbies myself, but not even I would come up with the idea of drilling bones from the ear during my weekends. Take into accout that if T never gets cured, it's his ass on the line together with all the rest of us. He also seems to believe it's his destiny to be a part of this breakthrough.
My point is that this guy is hardcore. He's the real deal. So if he tells me something, I'm not about to believe he's bullshitting me. And here is what he says:
The specific aim of the company [his company, that is]
is to provide continuous drug delivery to the ear using a pump that delivers medication over weeks.
[...]
The drug that are coming out in the next five years may not need an optimized system like mine, but for gene therapy - which needs very precise delivery, and for people like me who have low frequency hearing loss - which requires coverage all the way at the top of the cochlea, my drug delivery system is going to be vital. So if you have high frequency HL and T the upcoming drugs are going to be just fine.
Here's some other stuff he has posted:
My collaborator at Northwestern University, Claus Richter, is developing laser technology that stimulates the cochlear nerve with laser light, thereby eliminating the electrical cross-talk between traditional electrode channels. This allows more channels (i.e. a higher range of frequencies) and higher fidelity for each channel.
More stuff in the pipeline that is aiming at those god damn neurons. But there's more:
Just be patient - the drugs will be here in five years or less.
I'm a bit worried to have to put up with this T-crap for the nearest 50 years. But five years? I could to that standing on my head. Or, if necessary, beeing completly psychotic if that's what it takes.
He also writes:
There has been so much innovation in the 6 years that I've been working on the problem, that there is no way that a solution isn't just around the corner.
Like I said, usually I would't pay any attention to optimistic claims like this. I can tell when I'm done for, and getting T is it. But Dr Frankestein of late-nights-drilling-into-ear bones here sure knows more about T than I'll ever forget, so brushing him off wouldn't make any sense.
I try to hang in.. well, I am forced anyway. Although, I like your poetic words and beautiful mind -- If I had the right meds I'm craving for.. I would be free. And we could meet in wonderland; some day.
Maybe I shouldn't ask you to hang in like I do. I only do it because I like talking to you, so it's such an egoistical thing to do.
Staying in touch after death is a cool idea, and it's not new to me. But I did spend some years looking for people I remembered from one previous existence or the other, and as far as I know I never found them. So I suspect it may be hard to put into practice.
Member
Also when I work I go for meditation kind of sounds...
Don't give up though, I promise you, I felt like it was impossible, too. I, too, was and am extremely emotionally and physically sensitive person - especially to sound. It was devastating on many levels for T to happen, it was like my own personal torture because I loved silence to much and loved music - I know most of us feel that way, but just know you're not alone.
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