MemberWell, I don't know if I'd call it harassment. We seem to have a friendly email exchange going back over the past decade. I guess she's used to hearing from me. She must be a very caring individual because all I get from a lot of people far less important than her is radio silence!
New University of Michigan Tinnitus Discovery — Signal Timing
- Thread starter Hudson
- Start date
This email response of hers only makes me feel even more like help is on the way. Hopefully not much longer now!
- Mar 2, 2018
- 280
- Tinnitus Since
- 2/2018
- Cause of Tinnitus
- Rock 'n Roll
Omg that's amazing. I feel like her divulging that is a big step. Did she respond to you this week?
AfroSnowman
Member
- Jul 23, 2019
- 1,071
- Tinnitus Since
- 04/2019
- Cause of Tinnitus
- Nonnatural energy source
I don't give much credence to TFI. On a good day I could probably score a 30, on a bad day I'm closer to 80. We see in all kinds of low value tinnitus research and treatment a focus on TFI (looking at you Lenire).
Now a 50% reduction in volume, and remember they only did it for 4 weeks with an increasing effect as the weeks went on, so maybe we can do better than a 50% reduction, that is what I get excited about.
Karen1979
Member
- May 5, 2021
- 19
- Tinnitus Since
- Feb 2021
- Cause of Tinnitus
- Noise damage /Acoustic trauma?
Study design, participants and many studies. The NHS would only fund this if it proves very viable and affordable, plus it would need more studies for them to be able to fully grade it. (We've got 15 years of evidence for one of our services and our funding is still poor at best.) I cannot see them bringing patients in for daily treatment, and they would not be at a point to supply the devices (for patients to take home) unless they were very affordable...
I think even if this device proved good results, it would take many years for it to find its way into the NHS.
As a person who also suffers from hyperhidrosis, I am already used to using a machine daily to relieve symptoms. As long as you can have a good schedule, it helps a loooooot. That's if we can take it home though.
It wouldn't surprise me, and it's bullshit, isn't it. We have a symptom with no treatment, that at last check costs the NHS 750 million a year, yet they may not approve it. I'm about done with the NHS.
This is of course assuming Phase 2 results are strong!
Karen1979
Member
- May 5, 2021
- 19
- Tinnitus Since
- Feb 2021
- Cause of Tinnitus
- Noise damage /Acoustic trauma?
The reality is that I have patients who can't get hold of drugs that could potentially lengthen their lives! I've got patients who are deemed too healthy for lung transplants ("come back when you're nearly dead.")
That being said, I am a believer in Dr. Shore's device. A video was posted earlier in this thread and the presenter who spoke about her device did say something along the lines of he'd heard Phase two results were good! So let's cross our fingers.
This is great news for those of us who have more severe hyperacusis in one ear than the other. Awesome.
@dj_newark, it seems cochlear implants can have the same bilateral effect.Dr. Shore said:
"During the periods in which the device was in operation, improvement or disappearance of tinnitus was evidenced in the ipsilateral ear in 65% of patients, and in the contralateral ear, in 50%. In 10% of the patients, a new tinnitus appeared in the ipsilateral ear."
The cochlear implant as a tinnitus treatment
The cochlear implant as a tinnitus treatment
Basically I thought we had two separate auditory systems prior to this and that hearing loss/trauma in one ear could not cause tinnitus in the other. Now it seems it can. I don't know about anyone else but this is COMPLETELY NEW KNOWLEDGE to me!
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.
DoesItStop
Member
- Feb 19, 2022
- 22
- Tinnitus Since
- 09/2021
- Cause of Tinnitus
- Visual snow, amitriptyline
Very true. For all the references to Dr. Shore's device, do we have any idea when the hell it will be available to try? Everyone says we are so close, but I've never seen an actual date. You can go back 3 years on Tinnitus Talk and people are saying we're just about to have access to Auricle. I would love a link or some actual reference to a specific date as to when the common man will actually be able to try this device.
- Jul 8, 2019
- 1,140
- Tinnitus Since
- 1991
- Cause of Tinnitus
- Loud Music / family history
Check out the work of Prof. Heidi Olze. She's involved in the INTAKT Project that is aiming to diversify cochlear implant surgery and utilise their findings as a system for reducing tinnitus.
I *think* her work is similar to that of Hamid Djalilian although I stand to be corrected on that.
A down side though - I seem to remember reading somewhere the statement, "within the next 10 years"!
@Fightthearmy, cochlear implants are for severe to profound hearing loss. Do you have that? Plus they damage some residual hearing so unless you have severe hearing loss, is it worth it? Plus it's not a guarantee, however in around 80-90% cases it helps reduce or eliminate tinnitus, but again this is in severe or profound hearing loss cases.
@DoesItStop, I posted a video in this thread which answers your question on the timeframe. It starts at 27 minutes in and you have a likely answer.
No, I don't have severe hearing loss, but with that reasoning, I almost wished I had. 80-90%! I'd take those odds in Deer Hunter if Dr. Shore's device doesn't start to deliver. There's no way in Hell I would put up with this another 5 or 10 years if there is presently a possibility of relief.
Is it worth what? A meager decrease in hearing in order to not hear the same thing 24/7? Consider that there are very severe cases on this forum whose posts are sickening to read, and frankly 10 years in, I'm sick of it too.
@DaveFromChicago, her device does the opposite. It 'depresses' the activity of the fusiform cells in the DCN.
- Feb 11, 2019
- 801
- Tinnitus Since
- 01/2014
- Cause of Tinnitus
- Headcold/Flu
Thanks for the correction. I only skimmed over her technical reports.
In Saul Bellow's novel "The Victim", he quotes and old Jewish saying:
"Call me Ikey,
Call me Moe;
What's it to Me?
Where's the Dough?"
I don't care if it makes me feel like eliciting high-pitched simian mating call sounds, as long as it reduces or eliminates tinnitus.
@DaveFromChicago, I think 95%+ on here agree. I still find it hard to believe that a treatment could be available in a year that reduces the volume and intensity. It's sort of like a silly fantasy that can't surely be true? So many potential treatments have progressed through the pipelines only to suddenly fail spectacularly. Or make it through suddenly but for the vast majority are fool's gold (Lenire) and junk.
There's no actual date to expect the device to be available. But let's look at the facts. The last human trial that's required before the device can be commercialized finished last August. She will be presenting the results of that trial in about 2 weeks at the Palm Springs Hearing Seminar.
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. And Dr. Shore said that the last step before commercialization was publishing the results! A company has already been started to sell the device (Auricle Inc) and they've started the FDA process years ago!
Of course they can't get final approval for the device until the commercial version is available. But FDA approval for devices goes fast compared to medications. Usually the FDA can approve a medical device in six months or less!
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! She's also closing the seminar with the last session of the conference. That could mean that they are saving a "big reveal" for the end. And I think there's a possibility she will be able to talk about timelines for delivering the device. She's never had that freedom before, but with the conclusion of the recent trial I think having timelines announced is a distinct possibility!
They also have patents in the US and several countries around the world. All their ducks are in a row! Just because we don't have active updates about what's happening doesn't mean things aren't happening. I think we will learn a lot a the Palm Springs Hearing Seminar.
- Feb 11, 2019
- 801
- Tinnitus Since
- 01/2014
- Cause of Tinnitus
- Headcold/Flu
My all-time error was being inveigled into spending $6,100.00 on that Desyncra, who are no longer in business and whose 36 week "treatment" was no more effective than shining a flashlight on my head would have been.
My wife read me "The Riot Act", and said, "Don't you f**king dare withdraw any more money from your 401k to pay for some hyped-up zerosville placebo."
Want to hear something that astounded me? Our WBBM News Radio 78 had a program about how Americans will do more drinking on the night before Thanksgiving than even on St. Patrick's Day or New Years Eve. A guy who knows several bartenders told me that they even call it "Black Wednesday."
Be aware of this if you're driving tonight.
I suppose that this is indicative of the pervasive terrible loneliness that afflicts Americans.
- Jul 21, 2013
- 842
- Tinnitus Since
- 01/2013
- Cause of Tinnitus
- Acoustic trauma from headphones
This is how I feel.
When I listen to Susan talk about her research and auditory pathways, it's obvious she's a brilliant scientist who knows what she's doing. She gives off classic genius scientist vibes when she talks about her work. But that doesn't mean that this is going to be a slam dunk solution.
I have no idea whether it's going to succeed or fail, but I have seen other really smart researchers put forth their best efforts and not get good enough results. For the sake of my own emotional state, I can't let myself get optimistic about any treatment until it's approved for use by me.
At worst, this will be a step in the right direction. It's hard to believe that at its best I will literally be able to hear less of my own tinnitus, but if that happens I'll be the first to admit I was being pessimistic and I will be gracious for any sort of reduction I get.
I viewed the published review of the Phase 1 trial with interest. One thing I couldn't find was a breakdown of individual subject improvement, only the mean scores. I wonder how many of the 20 had improvements and by how much. I know 11/20 had improvements of >13 points on the TFI but always wondered if the other 9 had improvements to a lesser degree.
I couldn't find an appendix of this information.
I couldn't find an appendix of this information.
Let's just wait until December 3rd and hope for the best. Everything is gonna be alright 
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.