MemberIt would be a huge red flag. It is not likely, Lenire is too high profile. But it's possible, and no doubt it will become clear really quickly whether or not this is happening as so many people will be having their appointments.
Lenire — Bimodal Stimulation Treatment by Neuromod
- Thread starter Tinnitus Talk
- Start date
Hi guys,
I follow this thread all the time because I'm so curious about the outcomes.
Well, I guess Neuromod could realistically not prohibit talking about their treatment.
Also, if they are really seeking something like that (wanting people not to write about Lenire on a forum), it would be really, really suspicious.
That would say everything about the therapy.
So I can't really imagine that.
But then I'm asking myself why Allan1967 for example isn't writing anything.
But others were, so who knows what's the reason?
Did anybody try to contact the ones who haven't written anything yet?
(Besides that, maybe they are just busy?)
Ah, and also Markku, Hazel and PeterPan are doing the user experience group, they set it all up, and I'm thinking this cant be forbidden...
Does this make sense to anybody? Sorry for my funny English sometimes,
regards
Mandalay
PS: Cojackb, I just saw your reply, sounds good that nothing was mentioned at your appointment.
Can you tell me what an NDA is? An agreement paper, or something like that?
I follow this thread all the time because I'm so curious about the outcomes.
Well, I guess Neuromod could realistically not prohibit talking about their treatment.
Also, if they are really seeking something like that (wanting people not to write about Lenire on a forum), it would be really, really suspicious.
That would say everything about the therapy.
So I can't really imagine that.
But then I'm asking myself why Allan1967 for example isn't writing anything.
But others were, so who knows what's the reason?
Did anybody try to contact the ones who haven't written anything yet?
(Besides that, maybe they are just busy?)
Ah, and also Markku, Hazel and PeterPan are doing the user experience group, they set it all up, and I'm thinking this cant be forbidden...
Does this make sense to anybody? Sorry for my funny English sometimes,
regards
Mandalay
PS: Cojackb, I just saw your reply, sounds good that nothing was mentioned at your appointment.
Can you tell me what an NDA is? An agreement paper, or something like that?
FounderA member of ours had the following experience at the assessment appointment - they didn't want to post it themselves for fear of jeopardizing their relationship with Neuromod if they decided to proceed with the treatment (which they did). For what it's worth, I don't think there's anything to be jeopardized by sharing these experiences here with your own username, but I'll of course respect the member's wishes anyways.
I've been accepted and am going forward with it.
On arrival I filled in the tinnitus questionnaire... The one about level of distress it causes etc. Then I met with Caroline Hamilton, their Lead Clinical Audiologist. I was asked about:
- medications
- physical conditions... pacemaker/neurological illnesses
- history of tinnitus
- what it's like... bilateral etc.
- number of noises and tone
- what I do to manage it
- anxiety/stress/depression
- if it fluctuates or is steady
- hyperacusis and its severity... focus being on any pain
- sleep patterns
I can tell that at this point she was looking for an underlying issue that might be affecting me that could be improved and hence coping would be better. If there is, I think this is where people will get excluded. For her it was about quality of life and if something was lacking i.e. decent sleep, you'd get sent away. Fortunately my sleep has greatly improved with a Gravity Blanket (now known as Dads Blankie).
Then she tested my ET function, looked in my ears; did a hearing test then a masking test.
After that, which took about 30 minutes, I was told I was eligible. Then I went to another room, met a girl called Kiara and was introduced to the unit. Then we went through the 3 payment plans. I'll update you about later about that.
I return in 4 weeks for my unit plus training. Then return a further 2 times (given dates there and then)but support does not end there. You still have support afterwards if you need it.
I was told I had minor high frequency hearing loss in both ears but that was it as far as results go. She said otherwise I was good to go.
I've been accepted and am going forward with it.
On arrival I filled in the tinnitus questionnaire... The one about level of distress it causes etc. Then I met with Caroline Hamilton, their Lead Clinical Audiologist. I was asked about:
- medications
- physical conditions... pacemaker/neurological illnesses
- history of tinnitus
- what it's like... bilateral etc.
- number of noises and tone
- what I do to manage it
- anxiety/stress/depression
- if it fluctuates or is steady
- hyperacusis and its severity... focus being on any pain
- sleep patterns
I can tell that at this point she was looking for an underlying issue that might be affecting me that could be improved and hence coping would be better. If there is, I think this is where people will get excluded. For her it was about quality of life and if something was lacking i.e. decent sleep, you'd get sent away. Fortunately my sleep has greatly improved with a Gravity Blanket (now known as Dads Blankie).
Then she tested my ET function, looked in my ears; did a hearing test then a masking test.
After that, which took about 30 minutes, I was told I was eligible. Then I went to another room, met a girl called Kiara and was introduced to the unit. Then we went through the 3 payment plans. I'll update you about later about that.
I return in 4 weeks for my unit plus training. Then return a further 2 times (given dates there and then)but support does not end there. You still have support afterwards if you need it.
I was told I had minor high frequency hearing loss in both ears but that was it as far as results go. She said otherwise I was good to go.
Hi Markku,
Thanks a lot for this example/explanation.
Of course all this is also about the privacy of Tinnitus Talk members.
I mean it's a very personal experience to receive the treatment at Neuromod and not everybody
decides to share it.
Very understandable.
Thanks.
Mandalay
Thanks a lot for this example/explanation.
Of course all this is also about the privacy of Tinnitus Talk members.
I mean it's a very personal experience to receive the treatment at Neuromod and not everybody
decides to share it.
Very understandable.
Thanks.
Mandalay
Can anybody tell me if severe cases will be rejected or if they are eligible for the treatment?
If I have relaxation and sleeping issues, is this an exclusion criteria?!?
My THI score will be very high. Should I lie and score a low level not to get excluded? I am a bit confused if this treatment is only for mild sufferers...
If I have relaxation and sleeping issues, is this an exclusion criteria?!?
My THI score will be very high. Should I lie and score a low level not to get excluded? I am a bit confused if this treatment is only for mild sufferers...
Just now received the following information from another member:
I visited just over a week ago and had the same interview as you just posted. Just to point out I do have problems sleeping, and was told I fit the criteria for treatment, so that is not one of the criteria for exclusion.
I was asked about any medications and I take blood pressure tablets, but do not take anything to help with getting to sleep. I don't know what the exclusion criteria is but it may be medications if it has anything to do with brain function?
Having my device fitted in about 3 weeks. Flights from Manchester were £30 return. All other appointment flights already booked, easy to get there, 20 minutes in a taxi from the airport, in and out easily in a day.
As the other person, please keep my name out as I'm not really a forum person and would rather keep myself to myself but I know people will be panicking if they struggle sleeping with tinnitus and think it's an exclusion factor.
I visited just over a week ago and had the same interview as you just posted. Just to point out I do have problems sleeping, and was told I fit the criteria for treatment, so that is not one of the criteria for exclusion.
I was asked about any medications and I take blood pressure tablets, but do not take anything to help with getting to sleep. I don't know what the exclusion criteria is but it may be medications if it has anything to do with brain function?
Having my device fitted in about 3 weeks. Flights from Manchester were £30 return. All other appointment flights already booked, easy to get there, 20 minutes in a taxi from the airport, in and out easily in a day.
As the other person, please keep my name out as I'm not really a forum person and would rather keep myself to myself but I know people will be panicking if they struggle sleeping with tinnitus and think it's an exclusion factor.
This makes it sound like people with severe tinnitus get sent away?
Will people taking ototoxic meds for other reasons get sent away? Can someone please find out at the next appointment?
Dear God you people need to stop and think for a second.
1) No one has been excluded yet FROM TINNITUS TALK and we have had people with severe tinnitus, sleep problems and people who take ototoxic medication ALL get accepted.
2) Stop taking what if's and theories posted on here as fact.
3) Unless someone from an appointment has confirmation directly from Neuromod or Neuromod releases information itself, it's not fact.
I bet if I said, "If you piss sitting down, they exclude you." There would be a good chunk of you that would believe it.
Don't throw your rationality and common sense out the window when reading this thread please.
1) No one has been excluded yet FROM TINNITUS TALK and we have had people with severe tinnitus, sleep problems and people who take ototoxic medication ALL get accepted.
2) Stop taking what if's and theories posted on here as fact.
3) Unless someone from an appointment has confirmation directly from Neuromod or Neuromod releases information itself, it's not fact.
I bet if I said, "If you piss sitting down, they exclude you." There would be a good chunk of you that would believe it.
Don't throw your rationality and common sense out the window when reading this thread please.
Last edited:
No one from here that has gone has been excluded. About 5-6 people that have gone all got accepted.
To me this all just sounds like data collection. They have done their trials, but are of course still interested in collecting data to improve the device. It only makes sense to get baseline data from everyone and learn more about what works and what doesn't.Dear God you people need to stop and think for a second.
1) No one has been excluded yet and we have had people with severe tinnitus, sleep problems and people who take ototoxic medication ALL get accepted.
2) Stop taking what if's and theories posted on here as fact.
3) Unless someone from an appointment has confirmation directly from Neuromod or Neuromod releases information itself, it's not fact.
I bet if I said, "If you piss sitting down, they exclude you." There would be a good chunk of you that would believe it.
Don't throw your rationality and common sense out the window when reading this thread please.
Indeed Neuromod doesn't seem inclined to turn away people bearing lots of money - perhaps not very surprising. It's clear though that at least some Tinnitus Talk members do feel nervous about posting about their experiences directly for fear of "jeopardizing their relationship with Neuromod".Dear God you people need to stop and think for a second.
1) No one has been excluded yet and we have had people with severe tinnitus, sleep problems and people who take ototoxic medication ALL get accepted.
Hopefully that won't apply to most members and hopefully even those who aren't reporting directly will at least contribute anonymously to Tinnitus Talk's Lenire User Experience Survey. By 2020, with all that data we should be able to say for sure if this is the real deal or just another tinnitus device that didn't deliver.
I think I remember a comment where the CEO Ross O'Neill mentioned they are trying to open a clinic there this summer.
- May 9, 2017
- 929
- Tinnitus Since
- 2013
- Cause of Tinnitus
- Noise-induced
The last thing I know is that an initial launch in Germany and Ireland was planned but they didn't mention any exact dates. According to the following quote, Lenire might come out in Germany within the next two to three months.
- Apr 15, 2017
- 1,419
- Tinnitus Since
- 2008
- Cause of Tinnitus
- Noise
I can tell you people here now that for me personally I intend to let the Tinnitus Talk community know about my experiences if and when I go with the Neuromod treatment and here's why:
You are the customer paying thousands for treatment. If it works - I owe it to my Tinnitus Talk friends for their support and time conversing me over the years to let them know - even if it doesn't work for me.
Over the years there have been many treatments, take Dr. Wilden for example. To this day he still charges thousands and how many people got no result and posted nothing? Or got a result and said nothing?
It helps the tinnitus community by gathering this data so people can make more informed choices before shelling out their hard earned cash.
Remember - they are selling this treatment today before the peer review is even published - hence why I am holding back. I am also, as a long-term sufferer of tinnitus, reliant on testimonials because I have spent and some other members on treatments thousands with no benefit.
Patients should look after other patients of this miserable condition and not worry about upsetting a start-up - if they truly believe this works and it does success will follow.
What I, and a highly respected member of this community @attheedgeofscience, have found is that tinnitus sufferers can be their own worst enemy - how many of us contribute to research or our own cause? I think from the top of my head is that the ATA has 20,000 paying members - and how many millions in America suffer with it?
I intend to do my part for the tinnitus community by giving my support and reviewing new treatments such as Neuromod and when I've got a spare bit of cash, to contribute financially.
You are the customer paying thousands for treatment. If it works - I owe it to my Tinnitus Talk friends for their support and time conversing me over the years to let them know - even if it doesn't work for me.
Over the years there have been many treatments, take Dr. Wilden for example. To this day he still charges thousands and how many people got no result and posted nothing? Or got a result and said nothing?
It helps the tinnitus community by gathering this data so people can make more informed choices before shelling out their hard earned cash.
Remember - they are selling this treatment today before the peer review is even published - hence why I am holding back. I am also, as a long-term sufferer of tinnitus, reliant on testimonials because I have spent and some other members on treatments thousands with no benefit.
Patients should look after other patients of this miserable condition and not worry about upsetting a start-up - if they truly believe this works and it does success will follow.
What I, and a highly respected member of this community @attheedgeofscience, have found is that tinnitus sufferers can be their own worst enemy - how many of us contribute to research or our own cause? I think from the top of my head is that the ATA has 20,000 paying members - and how many millions in America suffer with it?
I intend to do my part for the tinnitus community by giving my support and reviewing new treatments such as Neuromod and when I've got a spare bit of cash, to contribute financially.
The person asked about people on the Lenire trial, not people who purchased it. I don't think it's paranoia to believe that trial participants would be asked to sign an NDA. We use them in work everyday for much less commercially sensitive data.
The attitude of some on here is aggressive and unnecessary. My opinion is just that, mine. Twisting my words and phrasing to berate me for a comment is exactly why I'm starting to think that keeping my experience with Lenire a secret is the best thing for me.
I really don't see what offering feedback will bring, but questions for which I don't have the answers and judgement of my own personal experience and feelings.
Jeez nobody is saying Neuromod makes you sign an NDA.
They are merely speculating that it is always possible this will happen, since it
supposedly happened with "Desyncra". Which my spellcheck just tried to change to "some crap".
- Dec 31, 2017
- 204
- Tinnitus Since
- Mild since 2006. Severe since 2016
- Cause of Tinnitus
- An enthusiastic youth
Keep up Zoid. Neuromod have told people Dublin is booked up until 2020, so even if you register with them now, it'll be well into next year before you get an appointment. By that time [purely me speculating here], they'll have other clinics onstream - my guess is Regensburg and London as the next ones.
Got to phrase everything carefully on this thread.
- Dec 31, 2017
- 204
- Tinnitus Since
- Mild since 2006. Severe since 2016
- Cause of Tinnitus
- An enthusiastic youth
Apart from the young Spanish girl they knocked back after the initial online assessment? You find as you seek.
- Apr 15, 2017
- 1,419
- Tinnitus Since
- 2008
- Cause of Tinnitus
- Noise
Why are you even here then if you refuse to share your experience with this new hyped treatment?
I can understand that some people want to remain anonymous but surely you can post your experiences to @Markku or @Hazel to share with others here anonymously.
Anybody who is following Tinnitus Talk: NEVER UNDERESTIMATE your feedback to people who are in exactly the same boat as you. We are all suffering together after all.
Log in or register to get the full forum benefits!
Similar threads
