Because cochlear implants are expensive, remove all your hearing; even the healthy part. Then, it is still "artificial hearing" and it is a lottery at the moment for tinnitus. There are even some people who had their auditory nerve sectioned in one ear and still have tinnitus in that same now deaf ear.What am I seeing? Are you saying that for ten years, there has been knowledge of a treatment which can reduce tinnitus considerably, and severe tinnitus sufferers have not been offered it? How do we convince doctors to offer this ASAP? That this is not approved for tinnitus, and that healthcare professionals say there is no treatment for tinnitus, that's not only cruelty; it's pure malice! Some people will remind us that it's a rather invasive option. Option to WHAT? I just don't want to suffer anymore.
@Stanley Samwise, fully published... no. I think there may be preliminary findings released though, i.e. was it successful.Do you really think we'll see the published data in the next week or so before the conference? I have a hard time believing that, as much as I'd love to see it.
@hopes, this is precisely why cochlear implants do work. Cutting off the auditory nerve has the opposite effect, it reduces input!There are even some people who had their auditory nerve sectioned in one ear and still have tinnitus in that same now deaf ear.
Some scientists abide by the principal of giving their research to society to improve it. Susan may or may not be that but until the final result of her research (whatever this device is) comes out, we shouldn't judge yet. You're right that all professors work to get grant money but it doesn't mean they plan to withhold their research results behind a paywall. A patent on the product will protect her IP and let us see how it works.I have a hard time believing in "hey, watch what we have discovered and made work" type of information being published just like that without a ready product for manufacturing and distribution, unless some key points won't be disclosed?
I mean think about it: Dr. Shore had somehow her research funded, spent 15 or so years on figuring this puzzle out and now is just going to give it free to the world? As much as I like that to be true - not happening. It either ain't working at all and it is all valuable research without an answer, or some "secret sauce" won't be given out.
We know that tinnitus is phantom noise generated by our brain due to lack of impulse from cochlea (hair cells). Whatever is the underlying reason for it, phantom noise = chaos in DCN which could be manipulated on either by some external input or chemical compound that would "level things out" in DCN (like Trobalt or similar).
I hope her research has some real valuable information in it and brings something in to silence this fkn noise in our heads.
As long as it is commercially available ASAP, I've got no problem with her getting rich and protecting her IP. If it actually works, I'll take out a loan if I have to. I do believe this is in part publicly funded research, so though she probably can and will patent her device and specific settings, the information will be made publicly available, then other researchers take the next steps from there.Some scientists abide by the principal of giving their research to society to improve it. Susan may or may not be that but until the final result of her research (whatever this device is) comes out, we shouldn't judge yet. You're right that all professors work to get grant money but it doesn't mean they plan to withhold their research results behind a paywall. A patent on the product will protect her IP and let us see how it works.
Dr. Shore obviously has patented her treatment or you would see Neuromod do it.As long as it is commercially available ASAP, I've got no problem with her getting rich and protecting her IP. If it actually works, I'll take out a loan if I have to. I do believe this is in part publicly funded research, so though she probably can and will patent her device and specific settings, the information will be made publicly available, then other researchers take the next steps from there.
One good thing if she makes a killing on this research is that it might prove to some deep pocket companies that there is money to be made in tinnitus treatment.
I'd guess that most presentations at academic conferences are unpublished studies. The American Psychological Association's conference's rule for submission state:There is a high likelihood that she'll be published by then, because there's no way a scientist like her would present the results of a trial until they've been published.
At her level of within the creation of knowledge, finding out what doesn't work is very important information. Any good academic tries to move the field forward with new breakthroughs, BUT they also understand the importance of reporting failures in order to prevent others from going down the wrong path/hoping others will help figure out why their solution didn't work. Any good academic shares results that don't support their hypothesis.The fact alone that she's presenting the results at a conference must mean they are good! No way would anyone present bad trial data in a conference setting!
Yes, I can kind of relate to that. A year that promised much (OTO-313/OTO-413/Hough Ear Institute/Oxytocin) has so far delivered no improvement. People were touting this as a big year, well and every year before for the past 10 years too.
That is precisely what I am scared of
@Jerad, hard to know. It's the leap of faith based on a 50/50 improvement of a similar drug (Retigabine) being translated to something similar. Neither drug was trialled for tinnitus so it's hard to really believe this could be helpful. It 'could' though.What about XEN1101?
Theory is, both Dr. Shore's device and XEN1101 target the DCN, right? So they should both hopefully work.@Jerad, hard to know. It's the leap of faith based on a 50/50 improvement of a similar drug (Retigabine) being translated to something similar. Neither drug was trialled for tinnitus so it's hard to really believe this could be helpful. It 'could' though.
I could not disagree more. I've been encouraged these recent weeks with all the activity going on in the Research News forum. There's tons of new stuff popping up in regards to knowledge around this affliction. Accessing the cranial nerve for hearing, new understandings of how hearing works on the cellular level, new treatment ideas (the auditory mirror therapy study). Frequency Therapeutics ISN'T dead, XENON PHARMACEUTICALS offers huge hope, and Sound Pharmaceuticals is promising.That is precisely what I am scared of
If Dr. Susan Shore's device doesn't help us, or if it doesn't help us enough to enjoy life a little bit as before, there will probably be nothing for us in our lifetime.
It's terrible to live with the idea that we will probably have to deal with this hell in our heads for the rest of our lives.
I can understand your skepticism, Toby. Whether this is effective rests with the results of the 2nd clinical trial. If they are good, I cannot think of anything else that has come to market that has succeeded in two human placebo-controlled, double-blinded studies that also used decibel reduction as a measure. Can you or anyone else cite another product?I'm just the skeptic here. There are so many tinnitus studies where the participants give better values at the end, purely for psychological reasons (oh yes, someone wants to help me, I will help them too, this complicated technology, the expensively developed medication must help... etc.). It could be that we will also see minimal to moderate improvements with the Dr. Shore device, then the topic is over for me once again.
If Dr. Shore's device were clearly helping, this would have been leaked long ago. At least I would be one of those saying "I'm not allowed to say anything as a study participant, but basically, there's something helpful in the pipeline."
I am slowly retiring from this forum because my main candidates Frequency Therapeutics and Otonomy have failed. In exactly 5 years, when I hopefully won't be in a hospital or in a coma, I'll quote this post and call all optimists, nice that you believed in it and spread good vibes...
I also know, just as physiotherapy was recently unable to improve my meniscus and cartilage damage in my knee, that there will be nothing "that little external influence" that will cure my tinnitus.
Another broken record, great. Maybe a few people were really enthusiastic when this thread was started. That was in 2013. I have a hard time believing most people would nowadays find much consolation in new ideas. No use saying that trials, especially the funding rounds, are gonna be quick.I could not disagree more. I've been encouraged these recent weeks with all the activity going on in the Research News forum. There's tons of new stuff popping up in regards to knowledge around this affliction. Accessing the cranial nerve for hearing, new understandings of how hearing works on the cellular level, new treatment ideas (the auditory mirror therapy study). Frequency Therapeutics ISN'T dead, XENON PHARMACEUTICALS offers huge hope, and Sound Pharmaceuticals is promising.
There's a lot going on. It isn't Dr. Shore's device or bust. Hang in there man, it's going to happen sooner rather than later.
@Fightthearmy, are you pessimistic about Dr. Shore's device? If so, why?Another broken record, great. Maybe a few people were really enthusiastic when this thread was started. That was in 2013. I have a hard time believing most people would nowadays find much consolation in new ideas. No use saying that trials, especially the funding rounds, are gonna be quick.
I'll speak for myself, but I know the answer to this one; because nothing, no matter the promise shown in any study has ever been created to actually treat tinnitus. Sure hope that this will be the first, but with the history of tinnitus treatments I wouldn't bet on it.@Fightthearmy, are you pessimistic about Dr. Shore's device? If so, why?
That's not what I said, I'm just making a point for what it's worth about how long these numerous "new ideas" would take from conception to clinic. When you've come as far in development as Dr. Shore, I'm all ears, before that (with new ideas) it's just a distant fantasy that's not going change the fact that my best years will be spent horribly.@Fightthearmy, are you pessimistic about Dr. Shore's device? If so, why?
Thank you very much for your hopeful comment, it is to see this type of comment that I consult Tinnitus Talk several times a day.I could not disagree more. I've been encouraged these recent weeks with all the activity going on in the Research News forum. There's tons of new stuff popping up in regards to knowledge around this affliction. Accessing the cranial nerve for hearing, new understandings of how hearing works on the cellular level, new treatment ideas (the auditory mirror therapy study). Frequency Therapeutics ISN'T dead, XENON PHARMACEUTICALS offers huge hope, and Sound Pharmaceuticals is promising.
There's a lot going on. It isn't Dr. Shore's device or bust. Hang in there man, it's going to happen sooner rather than later.
If there's anything truly interesting to report, like results or discussion of the second trial, we will pretty much live update on that, so no need to wait a few days. A more in-depth write-up will obviously take longer but snapshots can be immediate.I'm expecting a nice anti-climax coming Saturday without anyone live reporting, I don't see how the news can reach us that day. I'm making the assumption that it will take @Markku a few days at least.
@Markku, can I extend my general thanks, and I am sure that of many here. It is this kind of service and dedication not just from yourself but other members helping each other why I decided to finally make a donation. I would ask anyone intending on following to do the same, if you can.By the way, we are actually attending nearly all the sessions (so not just Dr. Shore's), both today and tomorrow, so we'll have coverage of those too.
Thanks so much for doing this Markku.If there's anything truly interesting to report, like results or discussion of the second trial, we will pretty much live update on that, so no need to wait a few days. A more in-depth write-up will obviously take longer but snapshots can be immediate.
We could even have set up a live stream with live commentary, but I don't think that's appropriate given the nature of these scientific conferences, how you need to pay to take part in them, privacy, confidentiality, etc. So the next best thing is that we'll update live of anything worthwhile.
By the way, we are actually attending nearly all the sessions (so not just Dr. Shore's), both today and tomorrow, so we'll have coverage of those too.