Q&A: Tinnitus Hub Meets Neuromod (Lenire)

[Mark662]

When this first came out a few years ago I thought it was yet another expensive mp3 player based piece of junk that was being pushed onto the market. However, after watching the video I realise the researchers at Neuromod are seriously taking this device to an end conclusion as far as research and trialling goes.

I hope it is available soon at not too an expensive price as it has an almost infinite market of potential buyers. It could be sold for under a hundred pounds and Neuromod would have their investment back in no time.

Thanks to @Steve and @Markku and everyone involved in getting this video done.

 

[annV]

I hope it is available soon at not too an expensive price as it has an almost infinite market of potential buyers. It could be sold for under a hundred pounds and Neuromod would have their investment back in no time.

They'll surely find out the sweet spot for the pricing. They've got investors who want maximum ROI. ANYONE, even poor tinnitus sufferers can afford to pay a couple thousand if they really want their tinnitus to get better. Do you know the Desyncra therapy The UK Tinnitus Clinic is selling? It costs nearly £5,000. It's a bogus treatment. Neuromod can comfortably charge that amount for a treatment that actually works... Neuromod will price this treatment competitively but not cheap.

 

[Bart]

They'll surely find out the sweet spot for the pricing. They've got investors who want maximum ROI. ANYONE, even poor tinnitus sufferers can afford to pay a couple thousand if they really want their tinnitus to get better. Do you know the Desyncra therapy The UK Tinnitus Clinic is selling? It costs nearly £5,000. It's a bogus treatment. Neuromod can comfortably charge that amount for a treatment that actually works... Neuromod will price this treatment competitively but not cheap.

In my opinion it will not come cheap.

And from what I understood O'Neill hinted at it saying that: well, we are a small company and we invested everythying in this project.

Meaning that they expect a serious return on investment, and if it works as intended I would gladly spend a couple of thousand on this device, but maybe there will also be the ability to rent the devices like we see with WNG's. Time will tell.

 

[Don Tinny]

If it really works I think any price is "fair". It would be the first true treatment for this condition.

However, it is a lot of money for me and I probably have to sell my car to have it, even if they sell it in Latin America.

 

[dayma]

If they can prove that this is a viable treatment to insurance companies that will be big. It is the key to make money. It will open up the market for them and those that can not cut checks for thousands of dollars.

For example; take a look at Aetna's position on what they cover and don't. They are pretty consistent.

http://www.aetna.com/cpb/medical/data/400_499/0406.html

 

[JavierGV]

Thanks so much for bringing us this hopeful information. I'm a long term hearing loss/hyperacusis/tinnitus sufferer and this the first real option I can see to relieve our daily nightmare.

Please @Markku, would it be possible to have a transcription of the interview's main Q&A? I'm a member of a Facebook group of Spanish-speaking tinnitus sufferers across the world and I would love to bring them a translation of the main points. Even the Vimeo English subtitles would do the job if I knew the way of download them. Thanks again in advance.

 

[WaqasVic]

And I just hope it becomes available internationally outside of the US and UK as well.

 

[Markku]

Please @Markku, would it be possible to have a transcription of the interview's main Q&A?

Hey Javier. Welcome to Tinnitus Talk! We are working on the transcription; it takes a bit of time to do the quality checking and to merge the corrections from the subtitles into the transcript. Expect to see it published in the next week or so. I will send you a private message once it is ready, and also update in this thread.

 

[Clare B]

Did you experience noticeable relief session by session? Or did the improvements only come at the end?

No, I didn't notice improvements session by session.

It wasn't until nearly the end of the treatment and afterwards that it improved.

 

[Clare B]

Is it completely gone? Can you hear anything if you wear earplugs in a quiet room?

Absolutely, completely gone. I never tried wearing earplugs in a quiet room.

 

[Clare B]

It sounds very cautious. Were there other patients with significant improvements or would you say that your case was an exception?

I hope to read positive experiences from other forum users.

Thanks again.

When I went back for the 12 month check up, I asked the woman interviewing me what were the results like for other people.

She was cautious in giving me much information, she said that at that stage they hadn't all the results back but she did say that the results were quite promising for others too, which sounded good to me.

So, I don't think I was the only one with significant improvements.

 

[Starthrower]

Please remember that they don't promise a cure, or silence, just a treatment to ease the ringing. Possibly, a more optimized neurostimulation protocol, with a combination of the (hopefully successful) FX-322 will give us even bigger relief. Personally, for me, having at least a treatment, a real one, available gives me a sense of control that was not around in the last years. And eases my anxiety, and that's a good thing.

Well stated @randomuser.

 

[Phi]

Thanks @Clare B for sharing your experience with us.

Does anyone know what date in January the device is due to come to market?

 

[Alberte]

Very good work @Markku! Thank you very much to the whole team.

The Neuromod device seems very positive.

 

[ruben ruiz]

I listened to the interview. The gentleman specifically stated that improvement was garnered by all ages of people with different levels of tinnitus. He didn't specify if there was a relationship between age and severity.

 

[JavierGV]

Hey Javier. Welcome to Tinnitus Talk! We are working on the transcription; it takes a bit of time to do the quality checking and to merge the corrections from the subtitles into the transcript. Expect to see it published in the next week or so. I will send you a private message once it is ready, and also update in this thread.

Thanks a lot Markku, I will wait for it.

 

[Jcb]

I was lucky enough to be selected to be on the clinical trials for this.

I was pretty skeptical about it but my tinnitus was driving me nuts so I was willing to try anything. It did improve my tinnitus by the end of the trial and interestingly my tinnitus continued to quieten after I stopped using the device.

By the time the 6 month check came around my tinnitus had gone completely. I had a constant worry that the tinnitus would return but it hasn't to this day.

I had my tinnitus for over a year and a half, its cause was completely unknown but it came on gradually. It was in my right ear and was a constant beep tone, that could be worse on some days. They said my hearing was perfect and I can hear quite high frequency sounds.

I am really thankful it worked for me but I did happen to speak to some older participants in the trial and they did not have the same improvement. So I guess it works better for some than others, depending on your tinnitus and maybe not so much if you have hearing loss.

I hope it's okay for me to comment here, I think it is now that the trial is over. I don't want to give anyone false hope but I had to say it did work for me. I guess I was lucky!

So happy for you.

Thanks for coming on here and sharing this info with us all. I'm hoping this is just the start of something and even if this doesn't help everybody we are moving in the right direction.

 

[WaqasVic]

Absolutely, completely gone. I never tried wearing earplugs in a quiet room.

Completely gone? This is pretty impressive.

 

[hans799]

I'm hoping this is just the start of something

The fact that Neuromod's trials have gone so well is also great news for the other two research groups working on similar devices (Dr Susan Shore's team and the University of Minnesota's team).

The fundamental idea of bimodal neuromodulation appears to be sound, and I think there's reason to hope that if the Neuromod device fails to work on somebody, the slightly different targeting sites/timings etc. used by the other teams will. Plus as I wrote in a previous post, the Neuromod device itself can be upgraded/fine-tuned later (via its software) as more data rolls in.

So I think yes, this is the beginning of a whole new era in the treatment of tinnitus!

 

[ReyKalinic]

It sounds similar to the Tinnitus Retraining Therapy. Hope it works. If I understood correctly, it doesn't work for everyone.

 

[Clare B]

So happy for you.

Thanks for coming on here and sharing this info with us all. I'm hoping this is just the start of something and even if this doesn't help everybody we are moving in the right direction.

Thank you. I really hope it does help others. I think it is moving in the right direction.

 

[Clare B]

Completely gone? This is pretty impressive.

Yes. It took me quite a while to believe it. I really was afraid it was going to come back. I think my family were just as happy not hearing me go on about my tinnitus anymore. I became a much happier person and began focussing on other things in my life again.

The only thing I'd like to know really is why I got tinnitus in the first place and I wish I understood more comprehensively how exactly the device treated my tinnitus.

 

[IAmCalifornia]

It sounds similar to the Tinnitus Retraining Therapy. Hope it works. If I understood correctly, it doesn't work for everyone.

If it's like Tinnitus Retraining Therapy then that is not a good thing bruh.

 

[spedgas]

It sounds similar to the Tinnitus Retraining Therapy. Hope it works. If I understood correctly, it doesn't work for everyone.

This is not TRT. It is not designed to divert your attention away from tinnitus. It does not involve psycholigical therapy to teach the patient to ignore the tinnitus noise. The end goal is not habituation of the noise. It isn't even remotely similar.

 

[Bam]

Yes. It took me quite a while to believe it. I really was afraid it was going to come back. I think my family were just as happy not hearing me go on about my tinnitus anymore. I became a much happier person and began focussing on other things in my life again.

The only thing I'd like to know really is why I got tinnitus in the first place and I wish I understood more comprehensively how exactly the device treated my tinnitus.

Who gives a shit how you got it. You're free Clare! Free!!!! You have literally been granted the very thing we all beg and plead for... God it must feel so fucking amazing?!? You've won the greatest lottery in the world! It makes me cry just thinking about it.

Please whatever happens to you in the future, never ever forget when you wake up each morning how incredibly blessed you are to have the gift of silence returned to you and the curse of tinnitus lifted.

 

[SteveO]

I contacted Neuromod in 2015 asking many questions.

They had my excitement up but did tell me back then it would be released in March 2015 in the UK. Awaiting publication of papers... then nothing.

Then to add to misery a few people back then who had purchased it, had nil effects and looked to return it. They posted on Tinnitus Talk back then. Not sure about their tinnitus cause.

Really hope it works.

So hopeful but since back then... not much has changed really. FYI, I made them add some details on their website as it looked more than dodgy in 2015.

@Markku and @Steve and @Hazel this interview is a big help -- huge thanks to you.

Regardless I'm massively motivated here as Susan Shore's work is correct. Mine is connected to nerves in mouth and definitely hearing loss plus nerve damage crossing over.

Regardless we should all pray this works as everything else is taking YEARS and we get nothing except hearing aids and self-help books. Every day I fight, we all fight, to live normal lives. It's so so hard at times. Any relief would be a God send.


From: NMD Info
Sent: Friday, February 13, 2015 11:56 AM
To: Stephen Oakley
Subject: RE: Device

Dear Stephen,

Many thanks for the feedback.

We have updated our website to include past research and clinical publications and will continue to update as necessary.

Please see the links below:

Publications / Presentations are listed here:

https://www.mutebutton.ie/research

Additional Product information is available here:

https://www.mutebutton.ie/healthcare-professionals

https://www.mutebutton.ie/our-device

Kind Regards,
Mutebutton Customer Service Team
Neuromod Devices


From: Stephen Oakley
Sent: 11 February 2015 14:45
To: NMD Info
Subject: RE: Device

Hi Again,

http://www.tinnitustalk.com/threads/mutebutton.124/page-6

In the above forum you will notice many people are very sceptical given the lack of information. Understand that's due to peer review. There has also been heavy delays, with "it's being launched next month" etc over a year back.

I can post on behalf of the forum. But to keep people both optimistic, and more excited about what, if the details are correct, a significant drop in tinnitus noise, then please let me know as much details as possible.

If this works will the NHS, eventually, be able to take this one?

Are the delays related to the FDA for any US launch?

Are any delays in information more for seeking financing (so a closed period / information sharing is closed)

As much details as possible.

Essentially at the moment if this is launched, there needs to be a better understanding. Given there are many products out there that simply do not work. Hence really appreciate the emails below, and I am on the mailing list (hoping that it is announced and brought out in the UK in March – and that it does work. But apart from the limited data on the website, and the cost being quite high, there really is minimal information out there. Which clearly is effecting the company credibility and branding (pre launch).

Thanks again
Steve


From: NMD Info
Sent: 09 February 2015 18:21
To: Stephen Oakley
Subject: Re: Device

Hi Stephen,

Yes we are hoping to launch in the UK in March. I would advise you to sign up to our mailing list and all information about upcoming launches will be made available to you.

I do not have information on clinic locations as of yet, but again, that information will be made available closer to our launch date.

Kind Regards,
Mutebutton Customer Service Team
Neuromod Devices


From: Stephen Oakley
Sent: 09 February 2015 18:17
To: NMD Info
Subject: Re: Device

Excellent. So essentially March it will head to the UK. Will there be one particular centre for the fittings in the UK also?

Look forward to hearing more (I actually didn't mean that as a pun... Then read it back)

Steve


From: NMD Info
Sent: Monday, February 09, 2015 06:13 PM
To: Stephen Oakley
Subject: Re: Device

Dear Steve,

Many thanks for your query.

At the moment, the product is available exclusively through our partnering center of excellence in The Hermitage in Dublin in Ireland. For those who have to travel, patients have the option to pre-order the device and have their assessment and fitting all in the one day. In time we may expand to further clinics but for the moment we have elected to limit the treatment to our center of excellence, to ensure all devices are accurately tailored to each patient for the best patient outcome and so that we can ensure ongoing support for patients utilizing the treatment to our high standards of care. We aim to launch the device in the UK in March and the rest of Europe in the months following.

Our papers are currently being reviewed and following publication, they will be available on our website. We hope to have them available in March. Unfortunately, we are restricted from publishing until they are accepted.

Kind Regards,
Mutebutton Customer Service Team
Neuromod Devices

 

[john paul]

Holy cow this is great, so happy for you Clare B.

 

[GlennS]

You've won the greatest lottery in the world! It makes me cry just thinking about it.

I can understand why she's somewhat subdued. There's no way someone who has only been suffering for a relatively short span of time to feel the same sense of relief as someone who has had it for a really long time (like me). The closest analogy I can think of is being released from prison after a short vs. a long sentence.

Personally, I'm not even pinning my hopes on the tinnitus to be completely gone. Even for the perceived volume to drop by 50% to the point where it's that much easier for it to be masked by everyday background noise would increase my quality of life in a really big way.

 

[Manny]

I contacted Neuromod in 2015 asking many questions.

They had my excitement up but did tell me back then it would be released in March 2015 in the UK. Awaiting publication of papers... then nothing.

Then to add to misery a few people back then who had purchased it, had nil effects and looked to return it. They posted on Tinnitus Talk back then. Not sure about their tinnitus cause.

Really hope it works.

So hopeful but since back then... not much has changed really. FYI, I made them add some details on their website as it looked more than dodgy in 2015.

@Markku and @Steve and @Hazel this interview is a big help -- huge thanks to you.

Regardless I'm massively motivated here as Susan Shore's work is correct. Mine is connected to nerves in mouth and definitely hearing loss plus nerve damage crossing over.

Regardless we should all pray this works as everything else is taking YEARS and we get nothing except hearing aids and self-help books. Every day I fight, we all fight, to live normal lives. It's so so hard at times. Any relief would be a God send.


From: NMD Info
Sent: Friday, February 13, 2015 11:56 AM
To: Stephen Oakley
Subject: RE: Device

Dear Stephen,

Many thanks for the feedback.

We have updated our website to include past research and clinical publications and will continue to update as necessary.

Please see the links below:

Publications / Presentations are listed here:

https://www.mutebutton.ie/research

Additional Product information is available here:

https://www.mutebutton.ie/healthcare-professionals

https://www.mutebutton.ie/our-device

Kind Regards,
Mutebutton Customer Service Team
Neuromod Devices


From: Stephen Oakley
Sent: 11 February 2015 14:45
To: NMD Info
Subject: RE: Device

Hi Again,

http://www.tinnitustalk.com/threads/mutebutton.124/page-6

In the above forum you will notice many people are very sceptical given the lack of information. Understand that's due to peer review. There has also been heavy delays, with "it's being launched next month" etc over a year back.

I can post on behalf of the forum. But to keep people both optimistic, and more excited about what, if the details are correct, a significant drop in tinnitus noise, then please let me know as much details as possible.

If this works will the NHS, eventually, be able to take this one?

Are the delays related to the FDA for any US launch?

Are any delays in information more for seeking financing (so a closed period / information sharing is closed)

As much details as possible.

Essentially at the moment if this is launched, there needs to be a better understanding. Given there are many products out there that simply do not work. Hence really appreciate the emails below, and I am on the mailing list (hoping that it is announced and brought out in the UK in March – and that it does work. But apart from the limited data on the website, and the cost being quite high, there really is minimal information out there. Which clearly is effecting the company credibility and branding (pre launch).

Thanks again
Steve


From: NMD Info
Sent: 09 February 2015 18:21
To: Stephen Oakley
Subject: Re: Device

Hi Stephen,

Yes we are hoping to launch in the UK in March. I would advise you to sign up to our mailing list and all information about upcoming launches will be made available to you.

I do not have information on clinic locations as of yet, but again, that information will be made available closer to our launch date.

Kind Regards,
Mutebutton Customer Service Team
Neuromod Devices


From: Stephen Oakley
Sent: 09 February 2015 18:17
To: NMD Info
Subject: Re: Device

Excellent. So essentially March it will head to the UK. Will there be one particular centre for the fittings in the UK also?

Look forward to hearing more (I actually didn't mean that as a pun... Then read it back)

Steve


From: NMD Info
Sent: Monday, February 09, 2015 06:13 PM
To: Stephen Oakley
Subject: Re: Device

Dear Steve,

Many thanks for your query.

At the moment, the product is available exclusively through our partnering center of excellence in The Hermitage in Dublin in Ireland. For those who have to travel, patients have the option to pre-order the device and have their assessment and fitting all in the one day. In time we may expand to further clinics but for the moment we have elected to limit the treatment to our center of excellence, to ensure all devices are accurately tailored to each patient for the best patient outcome and so that we can ensure ongoing support for patients utilizing the treatment to our high standards of care. We aim to launch the device in the UK in March and the rest of Europe in the months following.

Our papers are currently being reviewed and following publication, they will be available on our website. We hope to have them available in March. Unfortunately, we are restricted from publishing until they are accepted.

Kind Regards,
Mutebutton Customer Service Team
Neuromod Devices

Quite informative. Unsettling, how similar everything was back then to now.

The video with Steve made it sound like the actual device is no different than the one of 2015.

I sure hope this thing works...

 

[Clare B]

Who gives a shit how you got it. You're free Clare! Free!!!! You have literally been granted the very thing we all beg and plead for... God it must feel so fucking amazing?!? You've won the greatest lottery in the world! It makes me cry just thinking about it.

Please whatever happens to you in the future, never ever forget when you wake up each morning how incredibly blessed you are to have the gift of silence returned to you and the curse of tinnitus lifted.

You're right! Thanks for reminding me how lucky I am. You put that perfectly.

I really hope this device works for you guys too! So you can all be free!!