Super quick read... and I consider you the genius. I will read again. After a super quick scan, because I need to get my kids from school, sounds like BDNF is crucial in the embriotic stage and early development. NT-3 sounds like the shit we need. Again, 5 minute scan from a certified lunatic, but that was my impression.
What do you think FGG, you're easily one of the brightest scientific minds on this forum.
What are your thoughts?
Daniel
So sorry for your losses but you still have hope! I've been hanging on through many spikes. You have a family on Tinnitus Talk and your contributions are enormous. Research is light years beyond 10 years ago. I hope for a cure for hearing loss but I'd forgo getting my hearing back just to lower or stop the tinnitus.I was devastated about losing my career, marriage and music.
Thanks for your feedback, very enlightening. And hats off to Liberman for getting back to you, Steven Heller at Stanford took some time out to write to me as well. These guys are scientists, tend to be pretty cool, and caring people. 5 years is awesome for my own optimistic projections.Okay, found the reference to a study from 2014 about BDNF and NT-3. Looks like Liberman was one of the authors.
I had written to him (Liberman) months ago and explained I had widespread synapathy and inner hair cell damage (and outer hair damage at higher frequencies) with resultant tinnitus and marked hearing distortion.
I asked him (Liberman) if he could give me any kind of hopeful statement since I was devastated about losing my career, marriage and music. He told me that he can't obviously guarentee anything but that Frequency, Otonomy and Decibel all had good ideas about hearing loss, hidden hearing loss and tinnitus and he felt optimistic at least one of them would have a positive trial within 5 years.
FWIW, I wrote to about 10 researchers and he was the only one who responded. He didn't say much (as expected, he must be extraordinarily busy) but he seemed genuine and empathetic by his tone.
I now see an otologist the Hough Ear Institute since my vestibular case is so complex and asked him if he shares Dr. Liberman's optimism for hearing regeneration and he said that he did.
I miss music so much. My favorite band was Magnolia Electric Company and they had a song called "Hope Dies Last". That's where i am right now but I am holding on to these studies.
Thanks for your feedback, very enlightening. And hats off to Liberman for getting back to you, Steven Heller at Stanford took some time out to write to me as well. These guys are scientists, tend to be pretty cool, and caring people. 5 years is awesome for my own optimistic projections.
We have to accept we won't be cured, but our pain and quality of life may improve. Thanks for getting back FGG, you're awesome. Stay strong, eat well, do saunas and relaxation stuff and know you're a star.
See you around the block, take good care,
Daniel
Thanks @FGG. I'm concerned about the OTO-313, the thi reduction of 10 points. I'm going through a horrible phase and that drug is my only hope to be fully functional again. What are your views?
If it works, well then yeah. It looks to me like you'd have to go get a new shot of this stuff every few weeks.The big question for me on Oto-313 is if it is useful for chronic tinnitus.
Thanks, I've applied to my local one 2 weeks back. No response. I'll send them all a message then, I'm willing to travel. Anything for a slight reduction.Otonomy has increased their clinical trial locations and are still recruiting. A good sign for efficacy? Check out the newly added centers, there might be one in your area if you are interested.
Contacts
Contact: Clinical Study Manager otonomyclinicaltrials@otonomy.com
United States, Colorado
Colorado ENT and Allergy Recruiting
Colorado Springs, Colorado, United States, 80909
Contact: Deborah Bothwell 719-867-7810 dbothwell@coloradoent.com
United States, Illinois
ChicagoENT Recruiting
Chicago, Illinois, United States, 60657
Contact: Ninos J Joseph 773-289-1823 njoseph@chicagoent.com
United States, Kentucky
Advanced ENT and Allergy Recruiting
Louisville, Kentucky, United States, 40207
Contact: Ellie Fridell 502-213-3858 ext 1185 Efridell@advancedentandallergy.com
United States, Louisiana
Tandem Clinical Research, LLC Recruiting
Marrero, Louisiana, United States, 70072
Contact: Tammy Johnson 504-934-8424 tjohnson@tandemclinicalresearch.com
United States, New York
Northwell Health at ENT and Allergy Associates Recruiting
White Plains, New York, United States, 10605
United States, North Carolina
Charlotte Eye Ear Nose & Throat Associates Recruiting
Charlotte, North Carolina, United States, 28210
Contact: Sherry Fredenberg 704-295-3389 sfredenberg@ceenta.com
Piedmont Ear, Nose, and Throat Associates Recruiting
Winston-Salem, North Carolina, United States, 27103
United States, Texas
Worldwide Clinical Trials Recruiting
San Antonio, Texas, United States, 78217
Contact: Andrea Velasquez andrea.velasquez@worldwide.com
Sponsors and Collaborators
Otonomy, Inc.
https://clinicaltrials.gov/ct2/show/NCT03918109?type=Intr&cond=Tinnitus&phase=012345&lupd_s=07/06/2019&lupd_d=14
So they only want acute cases? Or are they inducing tinnitus on people without it to test the drug?Yep just got off the phone with Deborah from the Colorado trial. They want people with no prior history of tinnitus, so it looks like another wait and see scenario.
I wonder if their goal is to see if it works in acute cases and then expand the inclusion criteria for chronic during the next phase.
One thing she did note is that you have to be at the location several times over the course of 6 months, so I think they prefer you to at least be within state.
So they only want acute cases? Or are they inducing tinnitus on people without it to test the drug?
The latter sounds like madness.
Haha okay. Well I would give it a shot except I'm also in California.Lol no my bad. I meant they only want people who have never had tinnitus before and that this is their first time experiencing it - so yeah acute cases only atm. They're not giving anyone T (well at least not intentionally).
Oh and in case you are interested, UC Irvine is also doing a clinical trial of electrical stimulation either by needle or cochlear promontory stimulation for people with normal hearing. The eligibility is having tinnitus for at least 6 months and be able to go back for regular visits.Lol no my bad. I meant they only want people who have never had tinnitus before and that this is their first time experiencing it - so yeah acute cases only atm. They're not giving anyone T (well at least not intentionally).
Oh and in case you are interested, UC Irvine is also doing a clinical trial of electrical stimulation either by needle or cochlear promontory stimulation for people with normal hearing. The eligibility is having tinnitus for at least 6 months and be able to go back for regular visits.
Exactly. From what I was reading, they will be doing acoustics too. I don't think there is one, go ahead if you'd like.Is there a thread on this? I couldn't fine one. Might make one to track progress. It sounds like a variation of what Neuromod and Susan Shore are doing, but with the focus being on electrical pulses to the cochlea and not the trigeminal nerve.
Yes I believe they stick an electrode in and see what happens. I've mentioned this before, Neuromod, Shore just sends an electrical signal up somewhere. I believe they're just mimicking an internal CI which is only 70% probable to at least suppress tinnitus. Honestly I don't think any of them know what's going on. I really wish somebody could figure out what it is for certain to attack the root of the problem. But I guess it's good they are at least trying.