AfroSnowman
Member
- Jul 23, 2019
- 1,075
- Tinnitus Since
- 04/2019
- Cause of Tinnitus
- Nonnatural energy source
Has anyone who got the email saying 2019 appointments are filled up had any follow up contact from Lenire?
Lenire — Bimodal Stimulation Treatment by Neuromod
- Thread starter Tinnitus Talk
- Start date
I haven't received anything else since the email saying they will try to get me in 2019 depending on confirmations, if not, then early 2020.
Fabrikat
Member
- May 1, 2017
- 416
- Tinnitus Since
- 1973
- Cause of Tinnitus
- Otosclerosis then volume then viral infection
I hope this is true. And I agree with you that Lenire doesn't represent the levels of price abuse of devices such as Epipen. This is heartening.
But I can't help questioning why Lenire have made the tonguetip a wear and tear consumable item. I can appreciate your argument that customers must pay for the R&D involved in Lenire. But the tonguetip is not their invention. There are other tonguetips out there used by similar neuromodulation devices, for different conditions. Why not sell a tonguetip that doesn't need replacement?
It's reasonable to conclude that a replaceable tonguetip could be part of a longer term business strategy. A bit like built in obsolescence with so many things we buy these days.
And then there's the cost of a replacement tonguetip. I can't find it, but I know I've seen it somewhere in these pages. I'd appreciate someone reminding us exactly, if they know. It's over a hundred euros as I recall, eye watering really, for a piece of plastic and wire. It suggests that there's a potential income stream in after sales.
If Lenire works as promised, none of this is going to stop any of us from dipping into our wallets anyway. We want relief. It's just interesting to analyse the mysteries and inner workings of the small, ground breaking startup that is Lenire.
Member
@JohnAdams said something to me a few weeks ago, and I think he's onto something here when it comes to Neuromod's business model.
Basically, this 'soft launch' seems more like a third trial in that they aren't ready yet to tell who the Lenire does and doesn't work for. Perhaps they released the device this soon just to cater to the severe sufferers who will go get it day 1 and pay to fly to Ireland.
Prior to launch, did we not see tweets from English clinics in the UK talking about being resellers of the Lenire device? And didn't Ross O'Neill like the post?
In my opinion, I think Neuromod are holding out for more data, they could put the Lenire on sale in the UK, Belgium and Germany today if they wanted to, but I believe they are holding their hand up right now and telling the other clinics to 'hold up/wait'. They have European approval, nothing is stopping them from setting up shop outside one location. But they aren't expanding yet.
This is either because they're trying to get more data (which I HOPE is the case) or it's because they aren't fully confident in the device.
And these horrendously long wait times between the initial appointment and fitting only show me that they are stretching this out as long as possible.
I know I've said this before, but this way of doing business is really off putting to me. If
I've learned anything from being a gamer for 25 years, it's that silence on a project is NEVER a good thing. And usually it means the game is either in development hell or nigh on being cancelled.
I read somewhere that it's a supply problem. So that might get shortened as manufacturing ramps up.
Gamers with tinnitus unite!
Allow me a counterpoint. No Man's Sky had one of gaming's worst product launches in 2016. The dev team soon entered complete radio silence. The mainstream opinion was that they took their money and ran, and are basically scammers and thieves. Turns out they were actually working on taking the game they were forced to publish prematurely and making it the game it deserved to be. They have released countless updates over the past 3 years, including their latest update just a week ago, which is basically everything they promised back then. To them, these past 3 years were a financial loss, because all updates were free, the game doesn't have a subscription or microtransactions, so basically they were actively eating up their own initial profits to make their game right. They still did it. In my book this is a story of amazing resilience and integrity.
I'm not saying Lenire is No Man's Sky, or it had a botched launch, or anything like that. I think Lenire's doing perfectly fine and I'm putting my money where my mouth is (have my appointment coming up in 3 weeks). I'm just saying radio silence is not always a bad sign.
But Doom turned out to be a smash and it was literally in development "hell" for years and years.
If you're right, it might be they are facing challenges getting their TENT clinical trials past peer review, and are reluctant to plan further ahead until they do so.
- Jun 18, 2019
- 139
- Tinnitus Since
- 2018
- Cause of Tinnitus
- Deafening applause (ppl clap loudly after reading my posts)
I'm cautiously optimistic about this technology (bimodal stimulation as a whole) but it's not a ground-floor, early adopter, travel-abroad to a small start-up clinic kind of optimism.
At this point they are so booked up that I don't know if it would make sense to try to get in line to go to Ireland.
For which ones? And are you sure they don't wear out?
IMHO, the most reasonable use-case for replacement tips would be sharing or transferring ownership of the base device, something they should facilitate. Tinnitus is so rampant that it's going to be common to know someone in your social circle who could benefit from it, but I would feel better with them having a fresh tongue-tip for sanitary reasons.
As it is now there is mixed messaging with them saying this is a use-once treatment and yet talking about "continued-use" phase of ownership and not having a sharing/ownership-transfer program.
Fabrikat
Member
- May 1, 2017
- 416
- Tinnitus Since
- 1973
- Cause of Tinnitus
- Otosclerosis then volume then viral infection
The PoNS device in Canada, meant to treat brain injuries comes to mind. Its really about the quality of the metals they're willing to use.
According to this link, PoNS costs $30K (and was rejected by the FDA). They could afford to make those tongue-zappers out of unobtainium from Pandora at that price.
- Dec 31, 2017
- 204
- Tinnitus Since
- Mild since 2006. Severe since 2016
- Cause of Tinnitus
- An enthusiastic youth
I don't think that's what they've said is it? The timeline on their website indicates after the 12 weeks 'continued home use' or something similar. The 12 week bit only came about because that was the length of the trial.
They told me that they still have patients / customers using the original MuteButton devices periodically to put Mr T back in his box.
They've never mentioned it's a 'use it once' deal AFAIK.
Do you remember when I sent a question about MML (Minimum Masking Level) to Neuromod?
"Thank you for your e-mail and interest in Neuromod Devices.
At this time I have no information that I can share with you about improving the level of MML among patients. Neuromod is committed to publishing the results of our trial in peer-reviewed scientific publications. At this time we are in the process of drafting and reviewing the paper detailing the results from TENT-A1. Therefore until the publication is released, Neuromod will not be able to provide details of the results in e-mails.
Please sign up to our mailing list to be kept informed of developments at Neuromod, including publications:
https://www.neuromoddevices.com/signup
With best wishes
The Neuromod team"
"Thank you for your e-mail and interest in Neuromod Devices.
At this time I have no information that I can share with you about improving the level of MML among patients. Neuromod is committed to publishing the results of our trial in peer-reviewed scientific publications. At this time we are in the process of drafting and reviewing the paper detailing the results from TENT-A1. Therefore until the publication is released, Neuromod will not be able to provide details of the results in e-mails.
Please sign up to our mailing list to be kept informed of developments at Neuromod, including publications:
https://www.neuromoddevices.com/signup
With best wishes
The Neuromod team"
- Dec 31, 2017
- 204
- Tinnitus Since
- Mild since 2006. Severe since 2016
- Cause of Tinnitus
- An enthusiastic youth
From my perspective, there's just nothing to report as yet. I'm 2 weeks in as of tomorrow and I've seen no real changes, good or bad. I haven't experienced the 'disimprovement' other users have reported, in fact for the first week my tinnitus was reasonably well behaved - at the lower end of my usual range - but I'm back to normal this week, with good days and bad days. Still early days though...
- Dec 31, 2017
- 204
- Tinnitus Since
- Mild since 2006. Severe since 2016
- Cause of Tinnitus
- An enthusiastic youth
I'm only two weeks in.
My tinnitus has actually got louder, which is annoying. I did however have a couple of 'better' days for about 3 or 4 days during the last two weeks of treatment. I have no idea. I'm doing my hour every morning, one session after the other. I think they said about 6 weeks before people start seeing improvements. I hope I'm a 'super' responder.
That's really all I can say about it for now.
They made a big deal that those in the trials who improved had a lasting improvement to the limit of how long they followed up. This suggests it's a use-once treatment: a "cure" if you want to think of it that way. Sure, it's nice to hold onto the device and be able to use it again if you have some sort of relapse, but they offered no anecdotes of people from the trial who needed to repeat it, so as of yet we really don't know, statistically, how many (if any) will require that.
I'm not complaining, mind you. I would not mind repeating the treatment... periodically...but how much of a net gain in quality of life it provides depend partly on how long the effect lasts. Sacrificing an hour a day is not trivial, especially if you have other things competing for your time like exercise, sleep, etc...
MuteButton in the DailyMail in 2015 https://www.dailymail.co.uk/health/...device-sits-tongue-stimulates-time-music.html
They were saying it lowers tinnitus loudness by 40% back then. Even Action on Hearing Loss UK made comments on it.
They were saying it lowers tinnitus loudness by 40% back then. Even Action on Hearing Loss UK made comments on it.
- Mar 1, 2018
- 871
- Tinnitus Since
- birth/ recent spike 2/2018
- Cause of Tinnitus
- Born with ETD, several acoustic traumas, most recently ETD
No it doesn't. I can tell you for a fact, that is not how it is viewed. Nor is it how neuroplasticity works. That doesn't even make sense.
Fabrikat
Member
- May 1, 2017
- 416
- Tinnitus Since
- 1973
- Cause of Tinnitus
- Otosclerosis then volume then viral infection
Yep, that's an awful lot of zeros, isn't it? But let's be fair @GlennS, that's not the cost of a tongue zapper.
They're paying for almost a hundred days of intensive, monitored physical rehabilitation sessions administered by their clinics. And for patients suffering some of the most severe physically disabling conditions imaginable.
My original post was about the potential need for ongoing costs of buying tonguetips from Lenire.
I was motivated in part by the unthinkable. That @annV could deny us a vision that we all believed we were due. Lenire could cost much more in time. And I'm speculating that there could be an inbuilt obsolescence in the tonguetip component. It's a futile discussion really, because if it works, cost isn't going to stop most of us from buying the treatment anyway.
People have already been making their own neuromodulation and tonguetip devices for a while, for a few hundred bucks, over in DIY land. So I guess I'm interested in how Lenire arrives at €250 for an even simpler looking component.
https://www.instructables.com/id/Translingual-Neurostimulator/
Crucially though @GlennS, you've highlighted PoNS's failure in its first attempt at FDA approval, indicating that tongue stimulated neuromodulation was ineffective in these cases. Let's hope that Lenire doesn't suffer the same fate.
AfroSnowman
Member
- Jul 23, 2019
- 1,075
- Tinnitus Since
- 04/2019
- Cause of Tinnitus
- Nonnatural energy source
Thanks for the updates @ruud1boy and @TinMan2019, even the 'got nothing to report' updates. I am waiting for the day you guys post the OMG I think I'm getting better post. I'm rooting for you.
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