Lenire — Bimodal Stimulation Treatment by Neuromod

[Manny]

Wow, the video quality is top-notch. Thank you to the team that put this out, and looking forward to the others!

Dr. Shore mentions that her treatment stimulates the trigeminal nerve via the cheek (in one configuration).
That's the same nerve as Neuromod stimulates. Interesting; perhaps a positive sign overall.

And it is very gratifying to see her immense care to control for placebo.

 

[Pawel1]

What is the Brai3n clinic? Is that a typo? I've googled, and am not coming up with anything.

https://www.brai3n.com/en/department/

 

[ChrisBoyMonkey]

Yes they measured Tinnitus Loudness Matching (TLM) and Mean Masking Level (MML) but there is no standardisation for clinical significance and method in these like there is with THI.

In the safety and feasibility study (predecessor to TENT-A1) they found the device gave an average of 7.5dB reduction in TLM for compliant patients.

7.5 decibels is pretty good... If 12 decibels is about a 50% reduction (according to Shore's research with her device), then we can expect about an average reduction of 30% from TENT-A1 results. Since TENT-A2 results are supposedly better, then so should the reduction...

 

[AfroSnowman]

7.5 decibels is pretty good... If 12 decibels is about a 50% reduction (according to Shore's research with her device), then we can expect about an average reduction of 30% from TENT-A1 results. Since TENT-A2 results are supposedly better, then so should the reduction...

Well this is all why we are waiting and mostly underwhelmed with the reports so far in this forum. For me personally I range from a THI on 40 on my best days (<10% of the time) to 80 on my worst (~30%) and I swear the actual difference in volume is slight between the two extremes. I could completely imagine that a decrease of 10 dB would translate into a reduction of 20 THI and be enough for me to get my life back even though I wouldn't have silence.

I am an optimistic person by nature and continue to look forward to user reports while I wait for an appointment. If I recall in the interview and in other reporting on this site that people responded in as little as 6 weeks, but many didn't respond until the tail end of the 12 weeks or even beyond. If I had an appointment scheduled for next week I would be really torn about going as I live way way way far away from Ireland and the expense of the device would be trivial compared to time and expense of travel. For better or worse I will have a chance to see fully how people respond to this before having to pull that trigger.

 

[Heinrich_S7]

7.5 decibels is pretty good... If 12 decibels is about a 50% reduction (according to Shore's research with her device), then we can expect about an average reduction of 30% from TENT-A1 results. Since TENT-A2 results are supposedly better, then so should the reduction...

Didn't Ken claim a 17dB reduction on Facebook? That would make it more effective than Shore's Device wouldn't it?

Perhaps he's a rare instance of a huge improving case though.

 

[Chriscom]

Can we stop to enjoy @Hazel interviewing Dr. Susan Shore at the TRI conference in Taipei? Special thanks to @Autumnly for providing her magical touch; her editing work is impeccable. (Psst, we will publish more TRI mini interviews in the coming days, keep an eye on the Tinnitus Research Initiative (TRI) 2019 Conference thread).

All this while the next Neuromod interview is being worked on. I will be spending many hours in the editing room on that one - the perfectionist that I am... You can look forward to the interview being released in the next couple of weeks, unless something unexpected happens It takes quite a bit of team effort. We have fantastic people like @Liz Windsor helping, she is the Goddess of transcribing. Yeah, we won't forget those hard of hearing or others who prefer reading over listening.

Sometimes we wonder though why do we bother, is our work really appreciated? I'm not specifically talking about this thread, I'm talking about the overall tinnitus community; there's so much negativity, complaining, and blaming others. If only more of you volunteered your time and skills, helped with our projects, or became benefactors... Maybe take a minute and reflect on what YOU could do for the cause. And then PM me.

Outstanding, professional video! Greatly looking forward to the Neuromod interview. Your work really is appreciated, and I just re-donated. This place has been a lifesaver.

 

[AfroSnowman]

Can we stop to enjoy @Hazel interviewing Dr. Susan Shore

Wow, her saying with confidence that there would be treatment for everyone within a decade literally brought a tear to my eye. Thanks for the pep talk Susan!

 

[ChrisBoyMonkey]

Well this is all why we are waiting and mostly underwhelmed with the reports so far in this forum. For me personally I range from a THI on 40 on my best days (<10% of the time) to 80 on my worst (~30%) and I swear the actual difference in volume is slight between the two extremes. I could completely imagine that a decrease of 10 dB would translate into a reduction of 20 THI and be enough for me to get my life back even though I wouldn't have silence.

I am an optimistic person by nature and continue to look forward to user reports while I wait for an appointment. If I recall in the interview and in other reporting on this site that people responded in as little as 6 weeks, but many didn't respond until the tail end of the 12 weeks or even beyond. If I had an appointment scheduled for next week I would be really torn about going as I live way way way far away from Ireland and the expense of the device would be trivial compared to time and expense of travel. For better or worse I will have a chance to see fully how people respond to this before having to pull that trigger.

Well that's why you gotta be patient and hope for more people reporting good results. No one is done yet but the time will come and we'll have a better idea if it has helped them after the 12 weeks. So far the early results on our forum aren't too bad.

@Redknight has said that Neuromod is seeing positive results from most if its people but we only have a few of the people receiving the treatment on here, and probably even less reporting regularly.

Mine is moderate to severe all the time now, pretty much a 5-7 daily so I'd be happy just got go back to the 3-5 I used to be. Judging from the initial results, assuming I would be a responder, it's a reasonable expectation.

As for decibels, as I said earlier, we must have patience. I know it's so hard to be patient, I myself feel funny saying it, but there's nothing else that can be done at this point. We just gotta find a way to pass the time, and babbling about who is right or wrong about Neuromod when it's still in very early days with only a tiny bit of people actually telling us if it's helping or not is not the right way to do it.

As for money, everyone's situation is different and weighs the risks / benefits / costs differently. I'm broke as shit and nowhere near Ireland but I'm sure as hell gonna find a way to pay for this if and when I get the chance because I deem it worth the chance for a reduction based on what I've seen so far. If your choice is otherwise that's all you, but no one should be pushing their agenda on anyone else or trying to sway others that their position is the only right one at this time, especially when what we are seeing seems to fall in line with Neuromod's claims.

 

[AfroSnowman]

As for money, everyone's situation is different and weighs the risks / benefits / costs differently. I'm broke as shit and nowhere near Ireland but I'm sure as hell gonna find a way to pay for this if and when I get the chance because I deem it worth the chance for a reduction based on what I've seen so far. If your choice is otherwise that's all you, but no one should be pushing their agenda on anyone else or trying to sway others that their position is the only right one at this time, especially when what we are seeing seems to fall in line with Neuromod's claims.

May I just say, hear hear . Make the best choices we can for ourselves and support others in doing the same.

 

[AfroSnowman]

Redknight has said that Neuromod is seeing positive results from most if its people but we only have a few of the people receiving the treatment on here, and probably even less reporting regularly.

That is the other thing with self-selected reporters. If I were magically cured by Neuromod I'd come back here to tell you all and then erase this link from my browser and try to never think about tinnitus again. What I mean is that typically for any condition people stop coming to chat rooms if it is no longer bothering them.

 

[Heinrich_S7]

That is the other thing with self-selected reporters. If I were magically cured by Neuromod I'd come back here to tell you all and then erase this link from my browser and try to never think about tinnitus again. What I mean is that typically for any condition people stop coming to chat rooms if it is no longer bothering them.

I had chronic GERD, had surgery to correct my hiatal hernia and the LINX device installed around my lower esophageal sphincter earlier this year, and I can honestly agree wholeheartedly with this.

I never want to hear about GERD again now that I'm cured. When tinnitus has a treatment, I feel that I will do the same, I'll give my testimony, answer people's questions, then check out and protect my hearing forevermore and forget about tinnitus.

 

[Bartoli]

If your choice is otherwise that's all you, but no one should be pushing their agenda on anyone else or trying to sway others that their position is the only right one at this time, especially when what we are seeing seems to fall in line with Neuromod's claims.

Agree that everybody should do as he or she pleases. As for interpreting the actual results of the users in this forum and whether or not they fall in line with the claims, I'll leave that open to the individual's opinion. Really, the user group on here is too small to draw much of a definitive conclusion I think. I appreciate the efforts of the Tinnitus Talk team to channel the user reviews into a separate controlled thread while also extracting useful data from the reports. It's all very well executed and a prime example of the community of sufferers contributing to research. While some would be quick to dismiss this as not on par with academical standards, it should at least give the future patients a good idea of what to expect realistically.

I do have a problem however with people trying to polarize the comments on here, or mentally dividing people into different camps. In my view this is a place where people can vent, ask whatever question they seem fit on the topic, and even change their minds as we go along. We are human beings. We have hopes and emotions and sometimes they get crushed when reading a bad user review. We don't have much data to go by at this point. We are curious and impatient and it's normal that people react the way they do and they should be allowed to do so without being called a pessimist or an idiot of whatever.

If we should all wait until the final results are out before we can have our say then what good is this thread for?

So yeah, I have a problem with people telling other people how they should feel on the subject.

 

[Chriscom]

Agree that everybody should do as he or she pleases. As for interpreting the actual results of the users in this forum and whether or not they fall in line with the claims, I'll leave that open to the individual's opinion. Really, the user group on here is too small to draw much of a definitive conclusion I think. I appreciate the efforts of the Tinnitus Talk team to channel the user reviews into a separate controlled thread while also extracting useful data from the reports. It's all very well executed and a prime example of the community of sufferers contributing to research. While some would be quick to dismiss this as not on par with academical standards, it should at least give the future patients a good idea of what to expect realistically.

I do have a problem however with people trying to polarize the comments on here, or mentally dividing people into different camps. In my view this is a place where people can vent, ask whatever question they seem fit on the topic, and even change their minds as we go along. We are human beings. We have hopes and emotions and sometimes they get crushed when reading a bad user review. We don't have much data to go by at this point. We are curious and impatient and it's normal that people react the way they do and they should be allowed to do so without being called a pessimist or an idiot of whatever.

If we should all wait until the final results are out before we can have our say then what good is this thread for?

So yeah, I have a problem with people telling other people how they should feel on the subject.

Everybody feels whatever they feel. What matters is what you do with it.

Tinnitus is a devastating condition, and those who suffer the worst of it deserve to be cut some slack. But in the short time I've been a member of this community, I've seen personal attacks that don't benefit the target, usually don't benefit the accuser, and certainly don't benefit most of us here. If ever there were a place to be gentle, this is it.

Fortunately although there are flareups, also part of the human condition, they don't represent the normal tenor here. At least since I joined!

 

[ruud1boy]

What week are you on with your treatment?

Week 10 now. Twice a day, without fail.

Out of curiosity, how much hearing loss do you suffer from... i.e. on an audiogram, is it mild or severe?

Attachment below.

FWIW, I've had another good day today. I caught myself thinking 'can I hear it?'. I found it soon enough, but then rapidly backed away from searching for it - not a good idea.
My whistling friend hasn't been as quiet today as he was on Saturday, but I don't think I've ever had 2 good days so close together before. Hope springs...

 

[Bndsmheowqhe]

Can we stop to enjoy @Hazel interviewing Dr. Susan Shore at the TRI conference in Taipei? Special thanks to @Autumnly for providing her magical touch; her editing work is impeccable. (Psst, we will publish more TRI mini interviews in the coming days, keep an eye on the Tinnitus Research Initiative (TRI) 2019 Conference thread).

This video reaffirms my faith that this technology has tremendous potential when it's being handled by individuals like Dr. Shore and also the folks at the University of Minnesota. I experience absolutely no uneasiness with their slow and steady wins the race approach. She's got this thing beat and you can see it in her body language as opposed to the Nathan Thurm style of body language we've seen elsewhere.

 

[Don Tinny]

Wow, her saying with confidence that there would be treatment for everyone within a decade literally brought a tear to my eye. Thanks for the pep talk Susan!

In science "ten years" is ten years every year. Haha.

 

[Heinrich_S7]

This video reaffirms my faith that this technology has tremendous potential when it's being handled by individuals like Dr. Shore and also the folks at the University of Minnesota. I experience absolutely no uneasiness with their slow and steady wins the race approach. She's got this thing beat and you can see it in her body language as opposed to the Nathan Thurm style of body language we've seen elsewhere.

The problem is we don't know if her version will be out in 2020 or 2024...

 

[F-u-T]

I believe in the bimodal stimulation technology. I also believe Lenire is an effective device and will certainly help many people. I do have concerns about the reports of tinnitus worsening from Lenire though.

I understand Dr. Shore holds a patent on her bimodal stimulation work. I wonder if it covers specific signal timing that could prevent Neuromod or others from using the same signal timings?

 

[GlennS]

I experience absolutely no uneasiness with their slow and steady wins the race approach. She's got this thing beat and you can see it in her body language

So that's what it's come to? Reading body language? Look, it's easy to have faith in a treatment when it may not be out for years (and is therefore not facing its moment of truth the way Lenire is now). And the reason it won't be out for years, IMHO, is the way she's going about it is sluggish and inefficient. The ideal would probably be somewhere inbetween Neuromod and Susan Shore rather than one extreme or the other, both of which have drawbacks. The drawback that matters most to me is the fact I'm 49 and so every year that goes by is one year less of hypothetical quality of life I could obtain if a treatment delivers salvation. So it makes me a little upset if one of these projects seems to be dragging more than it really needs to.

For instance, if she's having trouble finding candidates, why can't she work remotely? Setup shop here at Boston Eye & Ear and I'll volunteer to be a test subject. It's the 21st century. Why does everything have to be done through her office and only her office? Believe me, there are ways to expedite this if she really wanted to do so rather than being at the mercy of local demographics. Not enough money? GET the money. There are ways to do that but I don't think that's her core competence.

 

[DaveFromChicago]

As much as I wish this were not the case, GlennS has some very cogent points.

I am 65 and 10 years is far too distanced a carrot to hold out before me in regard to seeing a light at the end of this very dismal tunnel.

I thought that someone posted that her device would be available next year. Perhaps she did not actually say that in the interview only because she relies on conservative projections (?).

 

[Sytex75]

As much as I wish this were not the case, GlennS has some very cogent points.

I am 65 and 10 years is far too distanced a carrot to hold out before me in regard to seeing a light at the end of this very dismal tunnel.

I thought that someone posted that her device would be available next year. Perhaps she did not actually say that in the interview only because she relies on conservative projections (?).

Hey Dave, fellow windy city guy here, left years ago for the sunny shores of Florida but did my stint at Ohare for Northwest Orient Airlines, hence the tinnitus 30 years later...

You bring up a great point about @GlennS' assessments and as much as I too hope for the best on new treatments, my age dictates that perhaps a little relief is worth the puddle jump I will take when my turn arrives in an email...

 

[Harley]

As much as I wish this were not the case, GlennS has some very cogent points.

I am 65 and 10 years is far too distanced a carrot to hold out before me in regard to seeing a light at the end of this very dismal tunnel.

I thought that someone posted that her device would be available next year. Perhaps she did not actually say that in the interview only because she relies on conservative projections (?).

I wish that someone would ask her the million dollar question, which all of us are waiting for.

When is her device supposed to be available?

 

[Chriscom]

I sure can see why she usually doesn't grant interviews, preferring to focus on the research. She's one of the few leaders in this area actually making tangible progress to overcome a disability that has eluded a reliable cure for, far as I can tell, all of human history. I guess it's inevitable that some of the reactions are going to be "you're not going fast enough," but geeze if I were her reading some of this I'd be saying to myself why bother.

It comes from real frustration and pain, I get it. I'm 63 and had just achieved a competent level of musicianship on guitar and voice after two years of work--reviving a lifelong dream--when I got pulverized with hearing loss and tinnitus. I am all too well aware I have a limited amount of time to fully live in that world again. Tick, tock. Hope everyone can hang in there.

 

[GlennS]

I sure can see why she usually doesn't grant interviews, preferring to focus on the research.

I appreciate the research, but research moving at this pace isn't of any use to us. She isn't getting any younger either. If she has any intention of seeing this through to completion within her[/I ]lifetime she might want to look into ways to pick up the pace, because I can assure you, there is room for improvement.

 

[Harley]

I appreciate the research, but research moving at this pace isn't of any use to us. She isn't getting any younger either. If she has any intention of seeing this through to completion within her[/I ]lifetime she might want to look into ways to pick up the pace, because I can assure you, there is room for improvement.

I agree with that.

When she made the "decade" rerference, it gave me a sinking gut feeling.
I'm not sure if she was alluding to her own device being released, or if she meant it in general, but that decade could easily become two decades.

If the main problem is with FDA approvals and government red tape, maybe we could help her with starting some sort of a petition to speed things up?

There are around 2 million people just in the US alone, whom are completely debilitated by this wretched condition which I wouldn't hesitate to call a medical emergency at the severe level.

I don't think that a petition containing around 2 millions of signatures could be easily ignored.

 

[ajc]

I don't think that a petition containing around 2 millions of signatures could be easily ignored.

How are you gonna get 2 million signatures? Unless you defecate gold bars and can afford a multi-million dollar online and tv ad campaign? This is the same line of thinking as "if everyone with tinnitus only each donated $1 to research!"

I don't think Dr. Shore's slowness is about red tape or FDA. More that she's old school researcher wanting to do everything perfectly on her own. She doesn't cut corners.

 

[GlennS]

I don't think Dr. Shore's slowness is about red tape or FDA. More that she's old school researcher wanting to do everything perfectly on her own. She doesn't cut corners.

Hasn't it already been established upthread that one of the excuses is she can't find enough candidates with the exact tinnitus she's looking for near her area? If that's the holdup, it's solvable either by broadening the acceptance criteria or finding a way to run trials elsewhere. Bottom line is if Neuromod was able to run hundreds of trials in Ireland then she should have been able to do likewise by now. But just sitting around for weeks and months passively waiting for a trickle of candidates to materialize is a waste of time. For instance, why do candidates have to be "somatic"? Just let anybody with T try it, since in the end anybody with T will be clawing down the doors to get it regardless.

 

[Bob90]

@Harley, I read elsewhere, I believe on the last couple pages of the University of Michigan thread, that her timeframe is 2020-2024 for her device and she's apparently been maintaining that stance since 2014, if I remember right.

The 10 year timeframe should be in reference to all current tinnitus research leading to treatment(s) that help most (but hopefully all) sufferers within 10 years.

While Dr. Rauschecker made a similar claim 10 years ago, as stated in the Tinnitus Talk podcast, it's far more encouraging to hear it now than then because there are more researchers and companies doing work towards treatments than there were 10 years ago.

Btw, I notice a lot of people want pressure on Susan Shore to come out with her device but don't see a similar amount of pressure sent University of Minnesota's way. Can someone who's more informed on the University of Mnnesota device explain why that may be? Thanks.

 

[Harley]

How are you gonna get 2 million signatures? Unless you defecate gold bars and can afford a multi-million dollar online and tv ad campaign? This is the same line of thinking as "if everyone with tinnitus only each donated $1 to research!"

I don't think Dr. Shore's slowness is about red tape or FDA. More that she's old school researcher wanting to do everything perfectly on her own. She doesn't cut corners.

I don't think that gold bar defecation would be required for this one.

I'm willing to bet, that if Susan Shore made an appeal to the tinnitus community, it would spread like a wildfire through all the social media, hubs and forums.

And of course we would spring into action.

 

[GlennS]

don't see a similar amount of pressure sent University of Minnesota's way.

Correct me if I'm wrong but they haven't been working on their project as long as she has. They are also prepping/running a new trial now so the project just seems more active (albeit pretty grass-roots).