Lenire — Bimodal Stimulation Treatment by Neuromod

[Jazzer]

I saw your video and I just don't know how you manage. Whenever I have a spike and think I can't go on, I think about your line about how your shaver is the only match for your tinnitus and I quickly get my act together and get through it.

Hiya @TibuJenkins - I very nearly missed your message because you did not alert me in the normal fashion of @Jazzer, that would have flagged me up of course.
That's got your reprimand out of the way.

Having watched a load of YouTube videos by 'tinnitus sufferers who miraculously turned themselves into 'know it all Tinnitus Gurus' I decided that I would make a totally honest account about all of this 'SHIT!'

Yes - it gives a pretty brutal picture,
just like the reality of tinnitus.'
I told the truth.
That video is unique - if I do say so myself.

When I saw my first and pretty well my last tinnitus clinician she asked me how I managed to cope.
I said 'with stoical acceptance - because I know full well that that is all there is.'

Noticing my quivering chin and the tears in my eyes, she got up from her chair, came over to me, put her arm around my shoulder, and said,
"There is so much we can do for you - we would never leave you there."

I loved her for expressing her humanity and her empathy.
Unfortunately I was right and she was wrong.
I was assessed at Guildford County hospital with a view to having CBT.
The answers on my pre-treatment questionnaire assessment proved that I knew at least as much about Tinnitus as they did - almost certainly more.
I had it - and they clearly did not.
I had also read all of the literature.
They said I would not benefit from any further re-education.

I have survived by unearthing my own meditational methods that have largely helped me to acclimatise to the sounds.
I cured my own 20 year tendency to bruxism and TMJ for good, with the help of a therapist.

I have a truly wonderful wife Sylvie - and live within a wonderful loving family.
I have three incredible therapists, (Pussycats.)
As you can see - I soldier on as best I can.

With regard to gadgets / gizmos etc.....
my feeling is that the stereo cilia in our cochleae are already damaged.
Tampering with nerve cells might even create further damage - we can not know that for sure.
I have no faith whatever in 'god's law,'
but huge respect for 'sod's law.'
If any scenario can possibly go wrong - then it probably will.

I'll just give you one little peak into my pre-history which may explain quite a lot.
I was born to a desperately mentally ill mother, daughter of the local prostitute, who was so ill, so sad that she had no bonding or love to give me.
I grew up broken and schizoid, for years.
Eventually I managed to 'think' my way out of it.
I am no stranger to emotional turmoil and trauma.

Best wishes to everybody going for these treatments.
I will be watching with great interest.

(Sorry this is so long buddy - I don't really do 'short.')
Dave x
Jazzer

 

[El BUZZ]

I often travel to Ireland. I live in Spain. Never had any time restriction to stay in the country. I once travelled with a Canadian citizen who received a two weeks restriction after a hardcore negotiation with the officer at the airport. An US friend received a two weeks restriction as well. Thing is officers didn't pay attention to that information in the passport for any of them when they left the country.

Only place you can get a decent and fresh pint of Guinness is at the brewery which is just around the corner from Neuromod premises. The black stuff usually sucks when dispatched in any other pub along the country. Pipes need to be cleaned regularly.

 

[El BUZZ]

What if you're young with moderate hearing loss??? Would Lenire not work ?

Reading through all the thread (as every member of the forum does) will provide you with all the information you ask for in a somehow annoying way.

 

[Striveon]

Reading through all the thread (as every member of the forum does) will provide you with all the information you ask for in a somehow annoying way.

I agree, you're right, plus they don't exactly know so why even bother I guess :/ thanks.

Do you happen to know Neuromod's email address by the way???

 

[Redknight]

Do you happen to know Neuromod's email address by the way???

It's on their website, why are you on here asking for information that is freely available? Take the time to read through the threads, watch the Q&A video and look at the clinical data presented earlier in the year... Then come back to discuss; we don't know anything more than that.

 

[Phi]

Where did the theory come from that Irish people are getting appointments sooner? Maybe I'm wrong but I don't remember them asking my address as part of the booking process.

 

[Stefaniie]

What if you're young with moderate hearing loss??? Would Lenire not work ?

I worry about the same thing. I'm 21 with mild/moderate low frequency loss.

 

[annV]

Where did the theory come from that Irish people are getting appointments sooner? Maybe I'm wrong but I don't remember them asking my address as part of the booking process.

They asked for phone number. Ireland has country code +353. Those who had +353 phone number got earlier appointments.

 

[Phi]

They asked for phone number. Ireland has country code +353. Those who had +353 phone number got earlier appointments.

Ahh good point!

 

[Redknight]

I often travel to Ireland. I live in Spain. Never had any time restriction to stay in the country.

Aw man! Brexit's gonna screw us UKers.

 

[Ken219]

People, think TRT! It took them 26 years to say TRT is ineffective!

 

[Phi]

They asked for phone number. Ireland has country code +353. Those who had +353 phone number got earlier appointments.

One other question you might know the answer to, Neuromod says it can take 14 days for them to respond, do they mean days or business days? Thanks.

 

[Rio80]

After receiving neither a confirmation for my appointment nor a response to my questions I just ended up getting an international calling card and calling them. The lady with whom I spoke with surprisingly knew my name and said that she just hadn't gotten around to emailing me. She said they're beyond swamped which I figured. I asked if Lenire will be available at any other clinics this summer and her response was that they are trying tirelessly to make that happen. So that is a goal but it may/may not happen.

 

[GlennS]

She said they're beyond swamped which I figured.

I have images of Annie Potts in Ghostbusters when business took off and she got overwhelmed answering the phone...

 

[Lilah]

I feel like this is the part they carry out their final vetting for eligibility and will either advise against you having the treatment or refer you onto their treatment list.

Did they give any indication on who is eligible and who is not?

 

[JohnAdams]

After receiving neither a confirmation for my appointment nor a response to my questions I just ended up getting an international calling card and calling them. The lady with whom I spoke with surprisingly knew my name and said that she just hadn't gotten around to emailing me. She said they're beyond swamped which I figured. I asked if Lenire will be available at any other clinics this summer and her response was that they are trying tirelessly to make that happen. So that is a goal but it may/may not happen.

Right. I bet they are swamped.

 

[ChrisBoyMonkey]

Did they give any indication on who is eligible and who is not?

Not much. On their website they are a little more critical of pulsatile tinnitus.

 

[Jack Straw]

I think @Jazzer that you are taking a sensible attitude to this device. It may well work for some people but it is unlikely to work for all tinnitus sufferers. One thing I remember is that the lady (Clare I think) who had had fantastic results in the clinical trial of this device said that particularly older participants in the trial with some age-related hearing loss hadn't experienced the same benefits.

This is because neuroplasticity is affected as you age. The older you are the harder it is for you to manipulate it.

I will try to find the study.

 

[Jack Straw]

Back at Dublin Airport after my assessment today. The ladies at the clinic are extremely friendly and very clued up on tinnitus / their device.

I'll try to summarise the appointment and provide any extra info I picked up.
- Arrival, you'll need to fill out an assessment questionnaire on a tablet (it's a THI questionnaire, same as the initial one when applying for the appointment).
- You'll then meet the main consultant and she will discuss your tinnitus with you, also asking about things like hyperacusis and any other treatments you may have or are currently undergoing.
- Then you go through with a hearing test and also a check for how much white noise it takes to mask your tinnitus.

I feel like this is the part they carry out their final vetting for eligibility and will either advise against you having the treatment or refer you onto their treatment list.

- If you get referred onto the list, you'll be sent in to see their product specialist who will take you through Neuromod, explaining the components and what it comes with.
- She will also go through the treatment plans and the kind of support you have access to, follow up appointments and payment plans. There are details here about replacement tongue pieces / cost.

- Finally you'll pay for the assessment and meet with another member of the team who will book your fitting and first 2 follow up appointments (each within 6 weeks of each other where possible).

The devices will be available in 4 weeks from what I was told, they did say if they become available sooner they will follow up with people.

Overall, very impressed with the experience and how thorough Neuromod are being in building a picture of their patients.

Apologies for the brief and probably broken update, writing from a phone while boarding a plane.

I'll try and add more info when I get back home.

Did you get the feeling if it is too loud they will exclude you? I hope this is not the case. How loud did they make it for you? Did it feel uncomfortable?

 

[Jack Straw]

People, think TRT! It took them 26 years to say TRT is ineffective!

What is the point of this statement? I'm confused?

 

[Fabrikat]

Since the tips are only rated for 180 hours you'd have to buy a new one every 22 days if you used them 8 hours a day.

We'll see how long the positive effects last. If the treatment has to keep being repeated downstream then Neuromod will have a razors/razorblade cash-cow on its hands with those tips. How much of the lack of durability is by design rather than unavoidable depends on how cynical you are.

€250 is an exorbitant amount to pay for a piece of wire attached to a bit of metal, in anyone's language.

If this machine needs to be used on an ongoing basis, then Lenire is going to add up to a very costly little unit.

@annV could present a very convincing argument at this point, as to why she should deny us the spectacle that we all once thought was rightfully ours.

 

[Flyingsheep]

I was thinking about signing up since the wait time is already moving to early 2020, and by then I'll know for sure if I want to do it. I'm going to see an ENT in a couple weeks first because it asks on the questionnaire if I've seen one, and I haven't yet. Figured it might disqualify me if I answer no.

Unless there are other people here who applied and never saw an ENT for tinnitus and got an appointment anyway?

 

[spedgas]

Back at Dublin Airport after my assessment today. The ladies at the clinic are extremely friendly and very clued up on tinnitus / their device.

I'll try to summarise the appointment and provide any extra info I picked up.
- Arrival, you'll need to fill out an assessment questionnaire on a tablet (it's a THI questionnaire, same as the initial one when applying for the appointment).
- You'll then meet the main consultant and she will discuss your tinnitus with you, also asking about things like hyperacusis and any other treatments you may have or are currently undergoing.
- Then you go through with a hearing test and also a check for how much white noise it takes to mask your tinnitus.

I feel like this is the part they carry out their final vetting for eligibility and will either advise against you having the treatment or refer you onto their treatment list.

- If you get referred onto the list, you'll be sent in to see their product specialist who will take you through Neuromod, explaining the components and what it comes with.
- She will also go through the treatment plans and the kind of support you have access to, follow up appointments and payment plans. There are details here about replacement tongue pieces / cost.

- Finally you'll pay for the assessment and meet with another member of the team who will book your fitting and first 2 follow up appointments (each within 6 weeks of each other where possible).

The devices will be available in 4 weeks from what I was told, they did say if they become available sooner they will follow up with people.

Overall, very impressed with the experience and how thorough Neuromod are being in building a picture of their patients.

Apologies for the brief and probably broken update, writing from a phone while boarding a plane.

I'll try and add more info when I get back home.

I'm assuming you were deemed eligible and are on the list to receive a device. I'm dying for someone on this forum to say they are getting one of these. The anticipation is driving me crazy.

 

[ChrisBoyMonkey]

Not a big surprise, but they are already scheduling to 2020.
No problem to me. Within 6 months we all should have a better idea of how well this thing works.

Neuromod Medical has received your completed online booking assessment. We are aware that it is more than 14 days since you submitted your completed assessment. At this time we have allocated all available first assessment appointments until the end of 2019. We are working to confirm allocated appointments, which may allow us to offer you an appointment in 2019. If not, we will offer you the earliest possible appointment in 2020. We will aim to get back in touch with you with suggested appointment times as soon as possible.


Already in the first week of appointments we have seen a small number of last minute cancellations and no shows. We plan to contact all confirmed appointments to put in place a cancellation policy, which may free up some slots earlier in 2019.

 

[GlennS]

Unless there are other people here who applied and never saw an ENT for tinnitus and got an appointment anyway?

I've never gone to an ENT in all my years of tinnitus and I got an appointment (for me to take or leave). Last time I was at my primary care I got some referrals but have yet to go because a) it's so close to Lenire coming out anyway and b) I know all they can do is give me an audiogram to let me know in black and white terms how bad my hearing loss is.

 

[spedgas]

This is because neuroplasticity is affected as you age. The older you are the harder it is for you to manipulate it.

I will try to find the study.

I'd like to read that study. This is a concern of mine. I'm not that old, but I can't help thinking that being a decade younger than I am would help my chances. I realize there is probably a certain amount of variability even between two people of similar ages.

 

[john paul]

Once it becomes available on the NHS then more people can give it ago at no risk.

I imagine we will have to be outside hospitals with pitch forks for years before that happens.

 

[GlennS]

I'd like to read that study. This is a concern of mine.

Note that some of the people in the testimonial videos look like they are in their 50s and 60s. If they really thought this would be ineffective beyond a certain age I think they'd be actively turning people away on that basis rather than highlighting success stories with older people.

That being said, I think some sort of mental prep would help with this device because based on my understanding of neuroplacicity, it's a form of learning. You know how if you are in a classroom setting that if you are physically writing down notes, just the process of listening and translating that to hand motion actually makes the brain commit things to memory better. It seems to make no sense but it just works. Same deal with using music. So my theory is that the circumstances surrounding the treatment sessions, the environment, the emotional state, fatigue, etc... all play a factor in effectiveness and could explain some of the variability. I was thinking of starting a topic on this but it's probably better left to when we have a lot of members actively using the device and looking to brain-hack for better results.

 

[Piney]

As part of the Lenire User Experience Group, will it be tracked involving amount of hearing loss and success rate?

Let me try and be clearer. I believe the only person who said their tinnitus is completely gone had no hearing loss.

Possibly the success rate drops the more hearing loss you have.

Would that be worthy of tracking?

 

[spedgas]

Note that some of the people in the testimonial videos look like they are in their 50s and 60s. If they really thought this would be ineffective beyond a certain age I think they'd be actively turning people away on that basis rather than highlighting success stories with older people.

That being said, I think some sort of mental prep would help with this device because based on my understanding of neuroplacicity, it's a form of learning. You know how if you are in a classroom setting that if you are physically writing down notes, just the process of listening and translating that to hand motion actually makes the brain commit things to memory better. It seems to make no sense but it just works. Same deal with using music. So my theory is that the circumstances surrounding the treatment sessions, the environment, the emotional state, fatigue, etc... all play a factor in effectiveness and could explain some of the variability. I was thinking of starting a topic on this but it's probably better left to when we have a lot of members actively using the device and looking to brain-hack for better results.

I've thought about this too. I'm wondering what they tell you to do while you are doing the treatment. Are you thumbing through magazines or distracting yourself with other things? It makes sense to me that listening intently and paying attention to what's happening would yield better results. I have absolutely nothing to base this on and could be totally wrong. I've had so much time to ponder this device that I've kinda hit it from all the thought angles I could.