MemberSo why on earth aren't there any timings on Lenire? I can't get my head around this...
University of Minnesota Tinnitus Research with Acoustic and Body Stimulation
- Thread starter kelpiemsp
- Start date
- Mar 1, 2018
- 871
- Tinnitus Since
- birth/ recent spike 2/2018
- Cause of Tinnitus
- Born with ETD, several acoustic traumas, most recently ETD
Because I spent a year in the UoM research lab being tested as guinea pig both before the actual trial and during the trial. I've met Lim, the whole research team, and have been able to view some of the data (I am a research scientist myself).
- Mar 1, 2018
- 871
- Tinnitus Since
- birth/ recent spike 2/2018
- Cause of Tinnitus
- Born with ETD, several acoustic traumas, most recently ETD
Who knows??! Maybe it's impossible to predict, maybe it's hard to replicate the device, I've always assumed they are dealing with struggles in Bluetooth latency.
- Jul 8, 2019
- 1,162
- Tinnitus Since
- 1991
- Cause of Tinnitus
- Loud Music / family history
This is absolutely one of the key points that has had my mind in knots too. The only reason I can think of is that UMinn hold Lim to some kind of, key-man clause, that prevents him porting certain research data over. Wild speculation of course but what else can we do when Lim, Shore, O'Neill et al leave us so short on detail?
frpp
Member
- Sep 17, 2020
- 196
- Tinnitus Since
- 2010
- Cause of Tinnitus
- Tmj, Nihl, ototoxic drugs, nerve/ vascular issues
If it turns out that Bluetooth latency is a major source of problem for them, that's probably one of the most unfortunate own goals in treatment history.
frpp
Member
- Sep 17, 2020
- 196
- Tinnitus Since
- 2010
- Cause of Tinnitus
- Tmj, Nihl, ototoxic drugs, nerve/ vascular issues
@kelpiemsp when your visual snow syndrome cleared up, was it gradual or was it really quick like over one or two sessions?
- Mar 1, 2018
- 871
- Tinnitus Since
- birth/ recent spike 2/2018
- Cause of Tinnitus
- Born with ETD, several acoustic traumas, most recently ETD
I wish I could say. Experiencing silence was/is so overwhelming many of my other struggles slowly faded out of my awareness. I do know that it seemed to become higher resolution, less moving. It's like I went from 1080p to 4K.
frpp
Member
- Sep 17, 2020
- 196
- Tinnitus Since
- 2010
- Cause of Tinnitus
- Tmj, Nihl, ototoxic drugs, nerve/ vascular issues
100000% this is literally why the Minnesota device needs to happen. Thanks @kelpiemsp.
This gives me hope that regenerating the cochlea will stop VSS. It would make sense given it's due to over firing neurons.
Dr. Shore's research is actually spot on about the ear causing issues like this with the brain. Thus there seems to be a real likelihood that if you either stimulate the right things or you regrow the stuff in the ear it will overcome these problems. She's done some very good research in this area and as a result it is going to be beneficial very widely in this space.
I have emailed them with this specific question almost a year ago and got this response:
Throughout development Neuromod has taken steps to ensure that the relationship between the sound and tongue stimulus is well defined and reliable. These steps involved characterising the delay of the Bluetooth link to the provided headphones (AKG K845BT headphones) and compensating for this delay during treatment sessions. Neuromod has performed extensive validation to ensure that the required timing relationship is consistent and repeatable. This is currently one of the reasons why the Lenire® device restricts operation to just the AKG headphones – use with other Bluetooth devices is currently not possible.
I'm not tech-savvy enough to know if it is indeed possible for the compensation of this delay to be "consistent and repeatable", but it sounds like they've put thought into it.
Sorry for asking another question about visual snow and maybe you have already answered it. But, is visual snow something you had since a child or did you get it later on in your life?
- Dec 18, 2015
- 618
- 45
- Tinnitus Since
- 03/2015
- Cause of Tinnitus
- Noise induced, loud rock concert
They had to reply like that. Even if they made a strategic mistake by using Bluetooth instead of wire, they will refuse to admit it in order not to lose credibility in front of hundreds of customers they already sold the device to.
frpp
Member
- Sep 17, 2020
- 196
- Tinnitus Since
- 2010
- Cause of Tinnitus
- Tmj, Nihl, ototoxic drugs, nerve/ vascular issues
I agree. Neuromod's Lenire are crap and a scam. You'd probably get better results and save money just by sticking your tongue on a cattle prod while blasting Baby Shark in your ear.
Seeking to get FDA approval could be potentially perceived as a smokescreen to make it look lots better than it is.
frpp
Member
- Sep 17, 2020
- 196
- Tinnitus Since
- 2010
- Cause of Tinnitus
- Tmj, Nihl, ototoxic drugs, nerve/ vascular issues
Let them try. I hope they apply and fail hilariously and then Lim can go back to finishing things that work.
It was more a question of "how" rather than "did you even think of this".
Now, a year later, it's obvious to me it's not working as supposed to, but it could be for any number of reasons and I personally don't think Bluetooth latency is the problem.
Maybe a more tailored approach as @kelpiemsp described? I'm kind of skeptical that Neuromod could just work with a couple of preset stimulation programmes. Everyone seems to start out on the first timing program as well.
@kelpiemsp,
Hi, I had a couple questions I hope you wouldn't mind answering.
Hi, I had a couple questions I hope you wouldn't mind answering.
- where exactly was the electrode? I saw a little diagram on the University of Minnesota website that made it look like it was just on the bottom on the lobe. Is this accurate?
- How often were the sounds played and how did that correspond to when the electrode was turned on? E.g. electrode and sound at the same time, electrode a little after the sound etc...
- How loud was the sound?
- How powerful was the electrode?
Thanks for coming back to chime in, @kelpiemsp. Common sense would dictate this is a key deficiency in Lenire.
I think if Tinnitus Talk does re-interview Neuromod that your testimony and description of the Minnesota device compared to Neuromod would be high on the list of bullet-points, maybe even higher than the disconnect between trial hype and Tinnitus Talk Lenire User Experience reports.
Note that Neuromod never claimed to eliminate tinnitus and yet you report results that are essentially complete elimination. It's almost like they were defeatist from the start, like they weren't even aware outcomes like yours were even POSSIBLE. Then again, your report is not that different from ClareB who says hers is gone. So it's mysterious.
- Jul 8, 2017
- 711
- Tinnitus Since
- 6/2017
- Cause of Tinnitus
- Neck/Jaw misalignment
Isn't this the same shit people were flying to Ireland for (Neuromod's Lenire) and it didn't work well?
- Jul 8, 2017
- 711
- Tinnitus Since
- 6/2017
- Cause of Tinnitus
- Neck/Jaw misalignment
Funny how if University of Michigan and Hubert Lim worked together things would get sped up... Everything is about money, everything.
- Aug 21, 2014
- 5,049
- Tinnitus Since
- 1999
- Cause of Tinnitus
- karma
This is mostly obnoxious to me because it's like they drummed up a solution in need of a problem. A wire is fine, and, a wire of the same length at room temperature ranges delivers the same information at the same speed, all else be damned. I'm not nearly enough of a signals guy to understand if you can really meaningfully overcome all the latency issues Bluetooth presents, but I'm enough of a systems person to know that you shouldn't make your medical device wireless unless there's a medical need to because it introduces a ton of complexity.
@kelpiemsp do you know if these devices work for sudden hearing loss or are they more for noise induced?
- Jul 8, 2017
- 711
- Tinnitus Since
- 6/2017
- Cause of Tinnitus
- Neck/Jaw misalignment
Based on your experience, could what was done for you be standardized/generalized into something easily deployable for the general public? To clarify, do you think what was done for you is scalable, or was it highly idiosyncratic?
If I email Lim and offer him $50k to do the same thing for me as was done for @kelpiemsp, as a "consultation" in his off hours, I wonder what he would say.