Lenire — Bimodal Stimulation Treatment by Neuromod
- Thread starter Tinnitus Talk
- Start date
MemberThe Q&A video did not mention that moderate high-frequency hearing loss would be an exclusion criteria.
I have high frequency 3.4 kHz dip up to 40-50 dB through noise exposure, bilateral tinnitus, hearing aids every now and then.
I am waiting for my assessment date from Neuromod. I now believe I won't be accepted, and this is a huge blow, after all this time.
I am quietly expecting devastating news regarding getting the treatment now.
I have high frequency 3.4 kHz dip up to 40-50 dB through noise exposure, bilateral tinnitus, hearing aids every now and then.
I am waiting for my assessment date from Neuromod. I now believe I won't be accepted, and this is a huge blow, after all this time.
I am quietly expecting devastating news regarding getting the treatment now.
- Jul 17, 2019
- 87
- Tinnitus Since
- 2017
- Cause of Tinnitus
- Idiopathic/Bad shoes?
I think people really need to take stock here. Neuromod aren't offering an online audiogram assessment business (as handy as that would be) and anyone going to a consultation needs to be aware that they might be refused. They're offering a device, the initial consultation for which is €250. Nobody is holding a gun to your head but if you take the appointment and thus staff time and resources this is the cost of it. Simple.
It really doesn't to be fair. To be clear I have the utmost sympathy and best wishes for anyone who feels their tinnitus affects them badly enough that they'd travel for treatment. Mine was catastrophic for the first number of months so i can empathize with the desperation and need for hope.
But for all their faults Neuromod has been unflinchingly consistent in their message that they don't recommend people to travel as they can't assure they'll get the best possible level of treatment this way.
- May 22, 2019
- 257
- Tinnitus Since
- 01/2019
- Cause of Tinnitus
- NIHL & TMJ
I believe it has already been reported that the masking level has no bearing on whether you are accepted for treatment.
No, I'd rather they explain the exclusion criteria better before people even go to begin with.
El BUZZ
Member
Maybe this is helpful now:
Mild hearing loss
What is mild hearing loss? On average, the most quiet sounds that people can hear with their better ear are between 25 and 34 dB. People who suffer from mild hearing loss will normally have some difficulties keeping up with conversations, especially in noisy surroundings.
Moderate hearing loss
What is moderate hearing loss? On average, the most quiet sounds heard by people with their better ear are between 35 and 49 dB. People who suffer from moderate hearing loss have problems hearing in many situations and will have difficulties keeping up with conversations. People with a moderate hearing loss will benefit from using hearing aids.
Moderately severe hearing loss
What is a moderately severe hearing loss? On average, the most quiet sounds heard by people with their better ear are between 50 and 64 dB. People who suffer from a moderately severe hearing loss have problems hearing in most situations when not using hearing aids.
Severe hearing loss
What is severe hearing loss? On average, the most quiet sounds heard by people with their better ear are between 65 and 79 dB. People who suffer from a severe hearing loss are very hard of hearing and will normally have to use powerful hearing aids. Often they also rely on lip-reading even when they are using hearing aids.
Profound hearing loss
What is profound hearing loss? On average, the most quiet sounds heard by people with their better ear are 80 dB or more. People who suffer from profound hearing loss have a very weak sense of hearing and need very strong hearing aids or implants, many also rely on lip-reading and/or sign language.
All these categories are normally defined using a measured audiometric average of 500, 1000, 2000 and 4000 Hz.
Disabling hearing loss
Global Burden of Disease (GBD) also defines a "disabling hearing loss". A disabling hearing loss according to GBD is 35 dB or greater in the better ear in adults.
Mild hearing loss
What is mild hearing loss? On average, the most quiet sounds that people can hear with their better ear are between 25 and 34 dB. People who suffer from mild hearing loss will normally have some difficulties keeping up with conversations, especially in noisy surroundings.
Moderate hearing loss
What is moderate hearing loss? On average, the most quiet sounds heard by people with their better ear are between 35 and 49 dB. People who suffer from moderate hearing loss have problems hearing in many situations and will have difficulties keeping up with conversations. People with a moderate hearing loss will benefit from using hearing aids.
Moderately severe hearing loss
What is a moderately severe hearing loss? On average, the most quiet sounds heard by people with their better ear are between 50 and 64 dB. People who suffer from a moderately severe hearing loss have problems hearing in most situations when not using hearing aids.
Severe hearing loss
What is severe hearing loss? On average, the most quiet sounds heard by people with their better ear are between 65 and 79 dB. People who suffer from a severe hearing loss are very hard of hearing and will normally have to use powerful hearing aids. Often they also rely on lip-reading even when they are using hearing aids.
Profound hearing loss
What is profound hearing loss? On average, the most quiet sounds heard by people with their better ear are 80 dB or more. People who suffer from profound hearing loss have a very weak sense of hearing and need very strong hearing aids or implants, many also rely on lip-reading and/or sign language.
All these categories are normally defined using a measured audiometric average of 500, 1000, 2000 and 4000 Hz.
Disabling hearing loss
Global Burden of Disease (GBD) also defines a "disabling hearing loss". A disabling hearing loss according to GBD is 35 dB or greater in the better ear in adults.
I was disappointed to read these reports too. However I still believe this device will work for most people, because that's what they've been saying until now, and that they will eventually sell the device to anyone with money, because that's what companies do. (Or else you'll be able to find an independent audiologist that will bend the rules for your money, or even buy one on eBay).
I think what's going on is they have a limited supply of the devices at the moment and want to give it to people that they're absolutely sure that it will work for or that it will work the best for in order to generate positive testimonials.
I think what's going on is they have a limited supply of the devices at the moment and want to give it to people that they're absolutely sure that it will work for or that it will work the best for in order to generate positive testimonials.
I keep saying this, but I'll say it again.
Neuromod don't want unhappy customers and have no interest in your 250 yoyos if they can get a better candidate through the process. They are queued out the doors for months to come.
When you get an assessment date, send them your audiogram to ask about the likelihood of being refused, before making the journey, especially if you're traveling far. Remember, Neuromod are offering the device in Ireland, traveling an hour and being turned down is an understandable risk, if you travel further, you do so at your own increased risk.
To those that are saying that mild/moderate/severe hearing loss excludes you; you are over-simplifying it and I see no evidence of it being as general as that. You need a certain threshold of hearing at specific frequencies, if you can't hear those then you are not a good candidate and would spend 1900 Euros for no benefit.
The thread has taken a needless downturn in optimism. I have some hearing loss and am a good candidate and others have hearing aids and were approved for the device. It will be different for each person's hearing loss, don't assume anything until you hear it from Neuromod.
Neuromod don't want unhappy customers and have no interest in your 250 yoyos if they can get a better candidate through the process. They are queued out the doors for months to come.
When you get an assessment date, send them your audiogram to ask about the likelihood of being refused, before making the journey, especially if you're traveling far. Remember, Neuromod are offering the device in Ireland, traveling an hour and being turned down is an understandable risk, if you travel further, you do so at your own increased risk.
To those that are saying that mild/moderate/severe hearing loss excludes you; you are over-simplifying it and I see no evidence of it being as general as that. You need a certain threshold of hearing at specific frequencies, if you can't hear those then you are not a good candidate and would spend 1900 Euros for no benefit.
The thread has taken a needless downturn in optimism. I have some hearing loss and am a good candidate and others have hearing aids and were approved for the device. It will be different for each person's hearing loss, don't assume anything until you hear it from Neuromod.
Hey @acute,
Unfortunately I don't have that info as I provided Neuromod with a very recent audiogram I'd had done prior to my assessment with them. They used that instead of carrying out another hearing test!
Very good question though, I'd be interested to see if anyone else has this info.
Cheers,
Jack
Some users here suggest that you should be able to mask your tinnitus with white noise at a reasonable (safe) volume.
The masking test, from what I understand will set a threshold for the baseline volume of your Lenire device. Each device is configured to match your personal hearing profile and the tones played by the device consist of white noise, music and chiming. A real variety of sounds and frequencies.
Some of these tones are synchronised with the pulses that are emitted from the tongue tip. I managed to work out which tones from the 30 minutes I spent with mine this morning. I suspect the synchronisation of sound stimulation and electronic stimulation via the tongue is important.
Potentially (and this is pure speculation) your hearing would need to be able to distinguish these varying tones for the treatment to work effectively. If you have significant hearing loss and the volume needed to be cranked right up, you probably increase the chances of doing more damage than good... again, speculation.
It's worth noting that for all the worry here, it's just the initial consults. Once this gets into dispensaries (3rd party) the evaluations will most likely change and loosen.
*a.k.a. they will want to sell sell sell...
*a.k.a. they will want to sell sell sell...
- Jul 17, 2019
- 87
- Tinnitus Since
- 2017
- Cause of Tinnitus
- Idiopathic/Bad shoes?
This is a medical device. It takes more than a casual internet reader with an audiogram in their hands to determine whether or not they're suitable for the device. In this case it takes an audiologist with in depth knowledge of the product (which nobody here is, including myself).
I've made this mistake in the past. I made an appointment with a rheumatologist for another condition I suffer from mildly.
Convinced in my head based on my symptoms that I was eligable for these fancy new steroid injections I'd read about online. In the end I was refused. I'd completely misinterpreted the online data, because I wasn't medically educated enough to know one way or the other. The appointment cost me 195 quid and I walked away annoyed and empty handed.
It's the same situation here. Neuromod COULD paste a plethora of medical information/inclusion and exclusion criteria online for the layperson to interpret but all they'd end up doing is increasing confusion and people would be deeming themselves eligible when they aren't or vice versa. The only realistic option is to let those who know best make the call. If you don't trust them or think they're trying to hoodwink you out of €250 then you're well within your rights to cancel your appointment.
Fabrikat
Member
- May 1, 2017
- 416
- Tinnitus Since
- 1973
- Cause of Tinnitus
- Otosclerosis then volume then viral infection
What would be simple is asking people how their hearing is, prior to the initial appointment and saving them a lot of hassle and time, regardless of where they travel from.
An audiogram is an objective and succinct document. Why not ask to see it prior? It's not a big issue, if you've got one. But I can see now why they don't. It's bad for business!
No one has mentioned the fact that maybe they are using stricter exclusion criteria because they want their initial patients to get the best benefit and have all great reviews. They can then say something like 87% of our current patients saw a reduction. Over time they will relax their criteria so more people can access it.
The initial release and patient feedback is so crucial to a product's success that it is understandable they only want to target the people who it is guaranteed to work for.
The initial release and patient feedback is so crucial to a product's success that it is understandable they only want to target the people who it is guaranteed to work for.
Other people have pointed out that you could easily send them a copy of your audiogram and let them look at it and determine if it presents too much hearing loss.
My tinnitus has not improved and it's had a big effect after 2 years, to be denied this is real bad for me and others. Suddenly feedback we weren't expecting is trickling back from Dublin, being rejected for average hearing loss, which goes against the Q&A session unless Neuromod have spotted non-responders in this area.
- Apr 25, 2019
- 78
- Tinnitus Since
- 04/2019
- Cause of Tinnitus
- don't know, probably motorsport + headphones for last years
They have lots of delays even in answering emails, so don't expect them to review many incoming audiograms from people.
They really should hire or at least outsource/lease some PR and marketing people/company to talk to people and share some news or progress such as Frequency Therapeutics does.
- Jul 8, 2019
- 1,167
- Tinnitus Since
- 1991
- Cause of Tinnitus
- Loud Music / family history
@Nanny chocolate prior to your appointment it seems you were already thinking you'd be refused Lenire. When you're ready would you be able to write a review in the User Experience thread, and perhaps discuss the specifics of your hearing loss and maybe why you believe this ultimately led to not being considered a current candidate for the Neuromod treatment?
UKB
Have you noticed any changes in your tinnitus yet? I had a somewhat scary conversation with the fitter, who said that most users experience "changes" in pitch, tonality, loudness and intrusiveness at the beginning and not always in a positive way!
Can you give us a summary of the experience of using the device? Like a full picture start to finish.
I had a similar chat with the consultant who said pretty much the same, and that the noise can "move" to other parts of the head. An interesting comment she made was some people have come back reporting their tinnitus has improved, but when they do the masking test etc there is no record-able difference in the amount of white noise it takes to mask.
I guess the thing to take away is an improvement doesn't necessarily equate to a reduction in loudness, but can mean overall reduction of intensity or intrusiveness of the frequency.
It's my first day using the treatment properly and although my tinnitus does seem much quieter today I put this down to being distracted with work and having fans on everywhere in the house due to the heat. There's no way it works that quickly!
Absolutely.
So as per the instructions from Lenire, find a comfortable seated position - upright preferably. In their words, this reduces the risk of you falling asleep during the treatment and the tongue tip losing contact with your tongue.
Switch on the Lenire device by pressing and holding the power button, you'll get a green battery light (top light) which indicates the battery is well charged. This turns orange when the battery needs charging. If the tongue tip is already plugged into the device, the status light for the tongue tip will pulse green (Left hand light).
There is also a status light for the Bluetooth headset (right hand light) which pulses blue until the headset is switched on and pairs automatically. So before treatment can start, you have to make sure this is connected and the status light changes from pulsing blue to solid green.
Once everything is plugged in and paired (it's very easy) you will notice the white light that appears directly underneath the power button. This basically means the device is ready to go and treatment can begin.
Place the tongue tip over your bottom lip so your lip sits just behind the notch and rest the metal nodes onto your tongue. It takes a bit of fiddling at first to find a comfortable position so you're not forcing your lips closed or pressing your tongue up the entire time. As soon as your tongue makes contact with the nodes, the pulsing green light goes to a solid green light.
Pop the headphones over your ears, they're comfortable enough for the length of treatment. During the training they do emphasize the importance of making sure the correct speaker is over it's corresponding ear, R - Right and L - Left. This is due to the device being configured for your audio profile and hearing levels in each individual ear. They've made this pretty easy...
Now everything's switched on, in your mouth and over your ears you can press play. You'll notice the white LED will begin to rotate clockwise around the light bars.
The first thing you'll hear is white-noise, it sounds very similar to waves on a shoreline or wind rushing through tree's - very soothing. There's a mixture of raindrop noises alongside slow piano chords. This in my opinion, is just ambient sound to make the experience more soothing. The important sound comes in the form of a strange chirp (I don't know any other way to describe it) - @Redknight @Allan1967 you guys might be able to explain that sound better than I can.
This "chirp" is much faster in that it will play multiple chirps per piano chord but they're still in sync. The reason I say this is the important sound is because as soon as the chirp begins, your tongue tip will begin to give off synchronized tingles onto your tongue. It's not an uncomfortable sensation, but it is very foreign in that it's difficult to relate to other feelings. They're very isolated tingles / pops in the exact position of the metal nodes on the tongue tip.
FYI - According to the product specialist at Lenire, these "tingles", their frequency and the way they are sync'd with the sound depends on the treatment you've been given. The impression I got here is there is more than one pattern that Lenire can choose from to set on your device (My interpretation of what was said, not fact).
The music varies slightly throughout the treatment, sometimes the white-noise is more prominent, sometimes the piano chords and chirps are more prominent.
Around 20 minutes into my treatment the white-noise was much louder than any other sound coming through the headphones - almost borderline with what I'd consider as my comfortable max volume and this lasted for a few minutes, at which point it returned to its default level alongside the other sound effects.
Truthfully, after 20 - 25 minutes of sitting, doing nothing and listening to the "music" it does get a little boring and you find yourself struggling to not get distracted by other things.
As the treatment ends, the music begins to fade out gently - there is no abrupt stop in sound. It's a gentle gradient until the sound fades into nothing. This indicates the end of the treatment and the white light will return back to its position under the power button.
Overall - The treatment is by no means uncomfortable, distressing or overbearing. It's a very user friendly piece of equipment and the treatment seems to have been refined to match. Volumes can be adjusted, intensity of the tongue tip can be adjusted and all the equipment is charged via USB which is handy. They do provide a charger in the box!
That's about as much as I can explain having only used it for 30 minutes, if there's anything particular you want to know then you're welcome to ask.
- Jun 13, 2019
- 1,108
- Tinnitus Since
- 10/2018
- Cause of Tinnitus
- Started with a cold, possibly worsened by medication/noise
I am not sure about this. Some elements could be provided easily in remote. You can submit an audiogram and fill a mood and medication questionnaire, send them this material via a secure link and get perhaps an initial estimate of the probability for you to fulfill the criteria, or perhaps a quick no go in case there is something that clearly excludes you. Neuromod could charge say 100 to 200EUR for this preliminary screening service but the benefit would be that if you get a no go you don't have to travel to Ireland and face a huge disappointment.
Also, the mere fact that the criteria are not of easy comprehension to the lay public is no good reason not to publish them. They can be made available simply as a guarantee that a criterion is there, first of all, and that it is the same for everyone and consistent in time. This adds to the company credibility.
More than that, if you take the criteria and visit a local audiologist you might be able to save yourself a trip to Ireland in case you are unlikely to qualify, as the audiologist would be able to interpret them. This may be relevant and quite cost-saving for people travelling from far away.
So no, not publishing the criteria is not good, and it's lack of transparency in my view. Clearly they are in a strong position, as there are thousands of potential clients waiting for a date, but it would be helpful if they were more transparent. Clearly they have no obligation to do so.
This whole Lenire thing is starting to be somewhat complicated.
Nevermind the 4 trips to Ireland, but to be honest I was expecting them to be picky mostly with screening out the severe sufferers and focusing on the mild/moderate cases, but this hearing loss exclusion kind of caught me by surprise.
I'm pretty sure that I have some degree of hearing loss in the high frequencies myself, but being that we are still in the dark ages and I only got tested till 8000 Hz, I wouldn't really know.
Either way, does anyone know when the Susan Shore device is supposed to be coming out?
Nevermind the 4 trips to Ireland, but to be honest I was expecting them to be picky mostly with screening out the severe sufferers and focusing on the mild/moderate cases, but this hearing loss exclusion kind of caught me by surprise.
I'm pretty sure that I have some degree of hearing loss in the high frequencies myself, but being that we are still in the dark ages and I only got tested till 8000 Hz, I wouldn't really know.
Either way, does anyone know when the Susan Shore device is supposed to be coming out?
Hi all fellow tinnitus sufferers. A quick report as I just got back to the UK. I think I was trying to avoid disappointment by thinking I wouldn't be accepted for Lenire.
I took a copy of my latest audiogram and then Caroline the audiologist gave me another hearing test. For some reason it seemed as if I could hear less and it was quite obvious I was not hearing some of the sounds. The sound inputs seemed different to N.H.S. but maybe that's not so. I was being observed by two German people who I guess will be involved in the roll out in Germany. No empathy from them! One was scrolling her phone.
Caroline then gave the refusal as I wouldn't be able to hear the sound inputs on the device.
Currently it is not possible to use Lenire with hearing aids. That was my stressed understanding and my daughter confirmed this as she sat in on the consultation.
My details will be kept on file should this become an option at some point.
I can't say exactly what my hearing loss is (caused by a virus and deterioration with age), I can't really understand the graph. I don't wear hearing aids and mostly manage ok.
Today's conclusion is that it is a big financial and emotional investment. Dublin Airport is now International and very busy, taxis are expensive but prolific. Dubliners are friendly and helpful. Premier Inn near the airport was a good standard and can recommend.
@Liz Windsor
@Sam Bridge
I'm completely confused here. My understanding is that I was refused Lenire as my hearing wasn't good enough. I don't wear hearing aids even though I could.
I'm also confused as I also understood that wearing hearing aids under the current headphones weren't an option.
I'm completely Neuromodded out. The audiologist suggested to try hearing aids so maybe that was her first line of reducing tinnitus.
I give up, I'm exhausted by trying so hard and getting nowhere.
Need coffee now. Phew.
P.S. on the questionnaire it might be more helpful to enquire about any degree of hearing loss rather than ask if hearing aids are worn.
Bye for now,
Eve
I took a copy of my latest audiogram and then Caroline the audiologist gave me another hearing test. For some reason it seemed as if I could hear less and it was quite obvious I was not hearing some of the sounds. The sound inputs seemed different to N.H.S. but maybe that's not so. I was being observed by two German people who I guess will be involved in the roll out in Germany. No empathy from them! One was scrolling her phone.
Caroline then gave the refusal as I wouldn't be able to hear the sound inputs on the device.
Currently it is not possible to use Lenire with hearing aids. That was my stressed understanding and my daughter confirmed this as she sat in on the consultation.
My details will be kept on file should this become an option at some point.
I can't say exactly what my hearing loss is (caused by a virus and deterioration with age), I can't really understand the graph. I don't wear hearing aids and mostly manage ok.
Today's conclusion is that it is a big financial and emotional investment. Dublin Airport is now International and very busy, taxis are expensive but prolific. Dubliners are friendly and helpful. Premier Inn near the airport was a good standard and can recommend.
@Liz Windsor
@Sam Bridge
I'm completely confused here. My understanding is that I was refused Lenire as my hearing wasn't good enough. I don't wear hearing aids even though I could.
I'm also confused as I also understood that wearing hearing aids under the current headphones weren't an option.
I'm completely Neuromodded out. The audiologist suggested to try hearing aids so maybe that was her first line of reducing tinnitus.
I give up, I'm exhausted by trying so hard and getting nowhere.
Need coffee now. Phew.
P.S. on the questionnaire it might be more helpful to enquire about any degree of hearing loss rather than ask if hearing aids are worn.
Bye for now,
Eve
An add on.
A fellow sufferer on Tinnitus Talk reports that she has approval for Lenire and wears hearing aids. My daughter apparently asked if I could be retested if I got some hearing aids but the answer was in the negative.
I'm beginning to doubt everything I thought I was told!
A fellow sufferer on Tinnitus Talk reports that she has approval for Lenire and wears hearing aids. My daughter apparently asked if I could be retested if I got some hearing aids but the answer was in the negative.
I'm beginning to doubt everything I thought I was told!
I know I have problems, especially in my left ear, but I can still hear tones that trail off between 13-14 kHz. It's hard to discern them because that's where the worst of my tinnitus now resides, unfortunately, plus it's dependent on speakers/headphones being able to output those tones, but it's there.
How does that compare to others?
How does that compare to others?
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