Lenire — Bimodal Stimulation Treatment by Neuromod
- Thread starter Tinnitus Talk
- Start date
Member@AliceW apologies I didn't get a chance to stick around at the clinic and have an introduction!
It turned out to be a very manic day with the usual delayed flights courtesy of British Airways and some very busy airports.
Saw your review and really glad your appointment went well, fingers crossed for a positive result!!
It turned out to be a very manic day with the usual delayed flights courtesy of British Airways and some very busy airports.
Saw your review and really glad your appointment went well, fingers crossed for a positive result!!
Personally, I've seen no changes in my tinnitus.
I had my final follow up on Friday and had the program adjusted again - will continue using the device for the foreseeable future.
To summarize, 12 weeks might be the documented treatment window but Lenire will continue providing support even outside of this.
- May 22, 2019
- 257
- Tinnitus Since
- 01/2019
- Cause of Tinnitus
- NIHL & TMJ
Emailed Neuromod last night asking when 2020 appointments may be available.
They came back this morning saying:
Looks like we'll have to wait a few more weeks before they release the 2020 appointments.
They came back this morning saying:
We are trying to obtain more appointment times so we can work through the waiting list more quickly than we are that the moment. We hope to have these confirmed before the end of November and will email you with an appointment time and date.
Looks like we'll have to wait a few more weeks before they release the 2020 appointments.
Hi Alice. I have my next appointment at Neuromod on 26 November. I am really happy about this treatment. The clinic was very good and the audiologist was fantastic.
I don't have hearing loss and the audiologist told me that Lenire works better in people without hearing loss. The device was configured for 12 weeks but probably works better if you continue to use the device after this period. My tinnitus started 1 year ago. I'm 22 years old and it's not easy to live with tinnitus.
- Feb 11, 2019
- 801
- Tinnitus Since
- 01/2014
- Cause of Tinnitus
- Headcold/Flu
Cojackb:
Thanks very much for your report.
When they said that "the longer you persist with it, the better", did they give an estimate regarding the additional number of weeks that would be required before any improvement was noticed?
After 12 weeks, is further application really just a demonstration of the Law of Diminishing Returns?
Their request that you (or anyone) come back after a year is frankly unreasonable.
Or are they implying that it could take this long for improvements to be observed?
Was this possibility even mentioned in the first interview?
Thanks very much for your report.
When they said that "the longer you persist with it, the better", did they give an estimate regarding the additional number of weeks that would be required before any improvement was noticed?
After 12 weeks, is further application really just a demonstration of the Law of Diminishing Returns?
Their request that you (or anyone) come back after a year is frankly unreasonable.
Or are they implying that it could take this long for improvements to be observed?
Was this possibility even mentioned in the first interview?
- May 22, 2019
- 257
- Tinnitus Since
- 01/2019
- Cause of Tinnitus
- NIHL & TMJ
The fact that you can see the offer of aftercare for up to and beyond a year post treatment as 'unreasonable' is truly mind bending.
In response to the continued use, not really, no. Their usage trial was only conducted over the 12 week period so as far as I can tell there isn't really any data to deduce an "average" of when someone could expect results outside the 12 weeks. Unfortunately it's not a question I asked directly so my answer is based on what I've learnt and taken away from my time with them.
Regarding the LoDR - you could very well be right but I'm honestly not sure. There is A LOT of science behind neuromodulation and the more I've tried to look into it, the more complex it seems to become. I don't know whether the persistence of extended use is the factor that induces a change in our tinnitus or whether it's just statistics.
From where I see it, the 12 month follow up is a way of them observing any changes in a person's tinnitus after the "official" treatment cycle has finished. I believe it's data collection but I also think this is very important in understanding whether they have a viable treatment which retains results with or without continued use. Without that research, we'd never know whether the improvements are sustainable over the following years. Neuromod did explain that they're still in touch with people who participated in the trials and they have information on whether some individuals continually use the device, who handed the device back and who decided to put it down.
It's important for them to build up a bigger picture - if the results are diminishing over time... why? What can be done to improve the treatment program to negate this? etc.
Caroline advised they have a very big research team and they're constantly working through their existing programs, treatments and feedback to refine their treatment.
ajc
Member
- Feb 6, 2018
- 1,170
- Tinnitus Since
- 11/2002; spike 2009; worse 2017-18
- Cause of Tinnitus
- Loud music - noise damage
I agree, LOL!
Usually medical clinics like Neuromod want you out of the door as soon as possible.
The fact that they're willing to see you at 12 months for no extra charge is INCREDIBLY POSITIVE.
How can someone spin it as negative? The mind wonders.
@Lucky97 I question the fact that the audiologist states that it works better in patients without hearing loss. Tinnitus is from hearing loss with the exception of TMJ or neck trauma.
Are they saying it works better if you have a good audiogram up to 8 kHz? Everyone is going to have some loss in the upper frequencies above 8 kHz unless you are very young.
- Feb 11, 2019
- 801
- Tinnitus Since
- 01/2014
- Cause of Tinnitus
- Headcold/Flu
Mea Culpa - my only intent with that remark was to express my concern about how's people's lives change significantly over an entire year (such as required relocation, being in the Military, etc.) that it may be impracticable to request another personal interview.
And you're correct about such extended concern and interest; Desyncra, for example, couldn't care less after I was finished with their 36 week "treatment."
No one associated with them ever called me afterwards to even inquire about my condition.
I've been woefully disappointed so many times in pursuing costly, useless treatments that I have to steadfastly prevent my prejudicial outlook from influencing my cumulative assessment of Neuromod.
Yesterday we had a glorious fall day, and my tinnitus was at such a vengefully, severe Personal Best that it would have ranked in the Top Five worst episodes over the last 6 years (so much for anticipating that it will finally go away by itself).
Even if these Neuromod results are varying, out of dire necessity I will still be compelled to try it when it is available in Chicago.
And you're correct about such extended concern and interest; Desyncra, for example, couldn't care less after I was finished with their 36 week "treatment."
No one associated with them ever called me afterwards to even inquire about my condition.
I've been woefully disappointed so many times in pursuing costly, useless treatments that I have to steadfastly prevent my prejudicial outlook from influencing my cumulative assessment of Neuromod.
Yesterday we had a glorious fall day, and my tinnitus was at such a vengefully, severe Personal Best that it would have ranked in the Top Five worst episodes over the last 6 years (so much for anticipating that it will finally go away by itself).
Even if these Neuromod results are varying, out of dire necessity I will still be compelled to try it when it is available in Chicago.
This entire Ireland launch seems to be a de facto TENT-A3. It seems like the technology is really as pristine as it comes, they just needed a bit longer than June to iron out the issues. Perhaps they launched it a little too soon.
Here's hoping for increased results and satisfied patients.
Here's hoping for increased results and satisfied patients.
Yours looks kind of like mine. I'm 27.
Perhaps my results will look something like yours, if they ever get back to me with an appointment.
If people can get their hands on it and start getting better sooner, even if not yet perfected, it's all good with me.
- Feb 11, 2019
- 801
- Tinnitus Since
- 01/2014
- Cause of Tinnitus
- Headcold/Flu
To Harley:
I was told to walk around with the Desyncra headset for 5 hours every day (and I did not miss a single day throughout the 36 weeks).
As I reported previously, there was no improvement.
I also recall that Desyncra's brochure warned that going beyond this daily 5 hour period with this heightened, constant sound could so stress the ears that additional tissue damage could occur.
However, this is a very good question to pose to Lenire about whether such increased usage would be additionally beneficial.
I was told to walk around with the Desyncra headset for 5 hours every day (and I did not miss a single day throughout the 36 weeks).
As I reported previously, there was no improvement.
I also recall that Desyncra's brochure warned that going beyond this daily 5 hour period with this heightened, constant sound could so stress the ears that additional tissue damage could occur.
However, this is a very good question to pose to Lenire about whether such increased usage would be additionally beneficial.
Brai3n in Ghent will offer Lenire beginning in May 2020, according to an email they sent me this morning.
- Jul 8, 2017
- 711
- Tinnitus Since
- 6/2017
- Cause of Tinnitus
- Neck/Jaw misalignment
Hi @BigNick
I hope all is going well for you.
I know you are in the midst of treatment and it's too early to conclude the efficacy of Lenire on your tinnitus.
I would like to know how are your spasms? Always better?
Before Lenire, did you have TTTS (ear spasms and contractions of the middle ear muscles to some sounds)?
I asked Caroline if Lenire could be effective on TTTS and ear spasms.
She told me that during the clinical trials, they didn't evaluate these conditions. But she added that many tinnitus patients who had hyperacusis reported a reduction in their sensitivity to external noises after using Lenire.
She told me that a lot of patients with tinnitus also had uncomfortable ear sensations like fullness, ear pain, plugged feeling...
But I didn't really understand if these bad sensations would go away at the same time as tinnitus.
Anyone knows about that?
I hope all is going well for you.
I know you are in the midst of treatment and it's too early to conclude the efficacy of Lenire on your tinnitus.
I would like to know how are your spasms? Always better?
Before Lenire, did you have TTTS (ear spasms and contractions of the middle ear muscles to some sounds)?
I asked Caroline if Lenire could be effective on TTTS and ear spasms.
She told me that during the clinical trials, they didn't evaluate these conditions. But she added that many tinnitus patients who had hyperacusis reported a reduction in their sensitivity to external noises after using Lenire.
She told me that a lot of patients with tinnitus also had uncomfortable ear sensations like fullness, ear pain, plugged feeling...
But I didn't really understand if these bad sensations would go away at the same time as tinnitus.
Anyone knows about that?
- Jul 17, 2019
- 87
- Tinnitus Since
- 2017
- Cause of Tinnitus
- Idiopathic/Bad shoes?
What he means is there isn't one (that we currently know about). There's a TENT-A1 and a TENT-A2. And it could be argued that Neuromod released Lenire somewhat early and the people who are now using it are engaged in a kind of pseudo TENT-A3. And Neuromod are gathering trial data from the field.
I'd somewhat agree. That's not to say they don't intend to really help people. But we owe quite a lot to the people who are spending their money and reporting back their experiences to us.
- Jul 8, 2017
- 711
- Tinnitus Since
- 6/2017
- Cause of Tinnitus
- Neck/Jaw misalignment
So basically the TENT-A1 and TENT-A2 people are like guinea pigs. While TENT-A3, TENT-AA4 and so on could have more improvements and help people more?
- Jun 15, 2019
- 157
- Tinnitus Since
- May 2019
- Cause of Tinnitus
- Likely infection/ear stress after walking pneumonia
That's very good news and not just for Ghent. They wouldn't do this if it were a total bust.
- May 22, 2019
- 257
- Tinnitus Since
- 01/2019
- Cause of Tinnitus
- NIHL & TMJ
10 dB is HUGE. I would snap your hand off for half that.
TENT-A3 and A4 do not currently exist.
A few users have argued that Neuromod are using paying customers to conduct further trials.
I'd argue that this is NOT TRUE. Whilst they will continue to collect data, as far as I am aware Neuromod are using timings discovered from TENT-A1 and TENT-A2 trials and are not exploring experimental / dissimilar timings on paying customers.
edit: Not that I would have any issue with them doing so if I was to be a non responder!
- Jun 18, 2019
- 294
- Tinnitus Since
- 05/24/2019
- Cause of Tinnitus
- Chronic headphones use and acute noise induced trauma.
I still haven't heard from Neuromod, I've sent them an e-mail yesterday to inquire about a possible appointment but they have yet to reply.
I did register back in July, this is getting ridiculous.
I did register back in July, this is getting ridiculous.
I'm on the exact same boat as you, brother.
Someone on here said that they responded to their email with them trying to have the dates confirmed by the end of next month (November). But that's what they said about the last two months, since October is pretty much done now. Hopefully they come through this time.
From what I saw when I was at Neuromod yesterday, they are working very hard to make everything possible.
While I was waiting, there were 4 other people going in and out within a 2 or 3 hour window.
I mean we are kind of waiting them to be a multinational company in addition to them being one of the first in the field of bimodal stimulation and we expect them to be ready to feed us as if we were going to a grocery store to buy food.
I remember one year ago when we started to get excited about MuteButton, it took them one year to be where they are now, expanding in Germany and Belgium too, which is already quite a big step.
I was there yesterday and still have to wait 2 months to get the device, believe me I know for sure that if they had been technically ready to give me the unit and take my money, they would not ask me to take another flight for the fitting session.
It's hard to wait because we all want to have a chance at trying Lenire as soon as possible, but for now it's just the start of this new treatment and Neuromod are a small team working for millions of tinnitus sufferers, they can't go any faster.
MRItechssuck
Member
Chris, if you got tinnitus in the military... what do they do or have they done... there must be quite a few cases being around all those noise makers?
How many people with PSTD have tinnitus I wonder? Out in the field I doubt tinnitus versus an IED matters... then soldiers come back and they are surrounded by relative calm... and now the noise.
Thank you for your service.
How many people with PSTD have tinnitus I wonder? Out in the field I doubt tinnitus versus an IED matters... then soldiers come back and they are surrounded by relative calm... and now the noise.
Thank you for your service.
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