Member- Jun 15, 2019
- 157
- Tinnitus Since
- May 2019
- Cause of Tinnitus
- Likely infection/ear stress after walking pneumonia
Lenire — Bimodal Stimulation Treatment by Neuromod
- Thread starter Tinnitus Talk
- Start date
- Sep 17, 2017
- 229
- Tinnitus Since
- 2017
- Cause of Tinnitus
- Medical mistake
Hi Nanny,
I am very well aware of how much you suffer having read many of your posts.
I just wanted to say - very best wishes with this treatment Nanny,
love
Dave x
- Jun 15, 2019
- 157
- Tinnitus Since
- May 2019
- Cause of Tinnitus
- Likely infection/ear stress after walking pneumonia
I'm just a U.S.-based outside observer to all this, but wanted to say I'm sorry you were rejected. Same goes for everyone else. I imagine they want to do everything they can to legitimately prove the value of this treatment, so anything falling even slightly outside the initial qualification is gonna result in rejection. For now I hope you can take some encouragement that the product is going forward, keeping an eye on developments and watching for the next opportunity. Easy to say, harder to do.
I am in the same boat Glenn. I kept my appointment for Nov. 15th, but I am still on the fence. I would just hate to go through all the travel and then get a release date dropped on me in early 2020. The airfare portion doesn't bother me much. I can always just take a trip to Ireland. I suppose if I did cancel they could always fill in the appointment with a checkup or something of someone closer.
You will have to let us know what they say.
Thank you very much indeed for taking this on, this will be very valuable patient collected data.
@acute if it's any comfort, I would imagine that you could "reapply" if your tinnitus has not self-resolved in a few months.
With utmost respect and well-wishes to @acute, I'm actually impressed with Neuromod for turning down a new patient presumably because their tinnitus has a greater chance of self-resolution.
- Oct 17, 2017
- 640
- Tinnitus Since
- 2005
- Cause of Tinnitus
- unknown - possibly hereditary
I can guarantee that won't happen. Neuromod is already struggling with supply and demand. US release is far away in late 2020 or early 2021.
I accepted their date. I wrote them an e-mail with the date. But for now, I do not have any email or phone confirmation from them, nothing.
Do I have to call them?
Do I have to call them?
Just curious Ann if you are hearing that from your sources or just based on what you are reading here? I would think it this gets released to some of the clinics in the UK this summer it would relieve some of the burden on them.
On the other hand I'd say this overwhelming response to Neuromod would certainly promote to take this thing abroad. There's clearly a demand, which makes it an easier sell to other countries - if not clinical medical institutions, then at the very least commercial clinics.
I'm not at all sure it's the right thing to do but a night in Dublin can't be bad. Lovely place.
@Dizzyhead888
@Dizzyhead888
I understand your point and in part I agree with you.
But I consider it unfair that they refused me just for ONE WEEK's difference.
There are people in this thread who have had tinnitus since March 2019 and and they will begin treatment in a short time, in July.
Only for a week of difference they sent me to the cancellation list and they did not want to give me an appointment, which could be for October or December, when enough time would have passed. A chance to my tinnitus for not become chronic.
I may not be able to express myself well, I'm sorry for that. I did not ask for an appointment for now, but for a distant date when the three months had passed by.
At this point, if they remember to email me again, I will not have a chance to access Lenire until 2020... just because of not having had tinnitus for one more week.
By the way, does anyone have that presentation Neuromod gave in PDF? The one with all the detailed results? I want to send it to my audiologist, who says is interested in it but has (still!) not looked into it. I'm hoping he can spread it around to Dutch audiologists, including a colleague of his who is "very much interested in these sort of things" (as opposed to you?!).
Anyway, I looked at the original site and couldn't find the PDF there anymore, and noticed the PDF attachments in the forum posts were gone, so if anyhow who has it could share, that would be great!
Anyway, I looked at the original site and couldn't find the PDF there anymore, and noticed the PDF attachments in the forum posts were gone, so if anyhow who has it could share, that would be great!
Hi Dave,
Tinnitus hasn't been too bad, back to seeing clients etc. I was going to cancel but it's gone berserk again the blighter.
I've stayed off Tinnitus Talk but someone, out of the U.K., that I'm touch with sent me the Neuromod details.
Will you consider it for yourself, maybe wait for the London launch?
Eve x
@Jazzer
Tinnitus hasn't been too bad, back to seeing clients etc. I was going to cancel but it's gone berserk again the blighter.
I've stayed off Tinnitus Talk but someone, out of the U.K., that I'm touch with sent me the Neuromod details.
Will you consider it for yourself, maybe wait for the London launch?
Eve x
@Jazzer
I don't understand where people are throwing out dates for other country release. It's highly speculative.
Right now it appears that Neuromod is getting slammed from a clinician side. That is normally a different side of the business than other departments. That does not mean they have any supply problems of the actual device. This also does not mean that they don't have the resources to train other facilities.
Right now it appears that Neuromod is getting slammed from a clinician side. That is normally a different side of the business than other departments. That does not mean they have any supply problems of the actual device. This also does not mean that they don't have the resources to train other facilities.
- Dec 9, 2018
- 1,568
- Tinnitus Since
- 1992
- Cause of Tinnitus
- Loud music
I think it's too early to tell. Companies with a backlog of demand can usually find enough capital to expand and meet that demand rather than to remain in garage mode for years. The only thing that would make it hard for them to expand (beyond gross mismanagement) would be negative user feedback. So the experience of these early adopters is pivotal.
- Oct 17, 2017
- 640
- Tinnitus Since
- 2005
- Cause of Tinnitus
- unknown - possibly hereditary
I'll send it to you. Neuromod wanted to censor it off the internet but I still have it.
This was my own speculation, I will definitely ask my source though!
First, you do not know that this is the sole criterion for their selection.
Second, if that were the case, they have to draw a line in the sand somewhere. There will be people that will be close to it, like you, that will be disappointed, but if they accept you, and they start accepting someone with 1 week difference, then what about the guys with 1 week + one day? They will argue the same way you are arguing right now, as it would essentially mean they've moved that line in the sand. Then it never ends.
Nobody knows when tinnitus becomes "chronic" or if such transition even exists. By definition, if you still have tinnitus after a while, we say it's chronic, because that's the definition of chronic ("persisting for a long time"). If anything, the way bimodal stimulation seems to work tends to address tinnitus that is formed as a longer time maladaptive plasticity process, at least if we are to believe the presentations by Susan Shore. That means you may actually not be a great candidate for this type of treatment yet.
Your communication is fine.
And perhaps that is a good thing for you.
- Apr 15, 2017
- 1,419
- Tinnitus Since
- 2008
- Cause of Tinnitus
- Noise
All this demand and not one peer reviewed paper to show patients or 'real life' testimonials. I'm suffering with it but I'm waiting patiently... Can't wait to see how everyone goes!
I have to agree with some other posters that your tinnitus, even at 3 months, is still very new. We have seen many people on here fully recover over 6-9 months after getting tinnitus that was moderate or severe.
Neuromod in sense is protecting you from getting an unnecessary treatment. Even if you were eligible I would still suggest waiting for 6 months to see if there is improvement.
You could always reapply if you felt you needed to. I see you are from Spain. Are you willing to do all that back and forth traveling to Ireland?
I understand at the beginning tinnitus can seem like everything is crashing down. I suggest you think about the fact that your tinnitus can and most likely will get better in the first year and if you want to spend a significant amount of money on this treatment with that potential for improvement.
- Dec 18, 2015
- 618
- 45
- Tinnitus Since
- 03/2015
- Cause of Tinnitus
- Noise induced, loud rock concert
I asked them in an e-mail if the date is confirmed and if I can book a flight and got a response that it's confirmed. You can consider doing the same
I thought there were far more than 4 confirmed appointments? Mine's the 16th July, in case you haven't got it yet.
FounderThere are, but not all of them have signed up to the Lenire User Experience Group. And those who have signed up, some of them might also have filled the form before having been given a date for an appointment by Neuromod, so the questionnaire data is not up-to-date in that perspective.
We will update the information later on by contacting people who signed up - we and the whole tinnitus community should be very grateful to have @PeterPan take the responsibility for project managing this! It's nothing short of a major project overall but hopefully very useful for our readers!
(cc: @Hazel)
Ask them what percentage of patients if any saw any worsening of their symptoms.Hi guys, I'm going to my appointment with Lenire soon and I just wanted to know what people think are the best kind of questions to ask?
Thanks
I think the bottleneck here is clinic time and not physical supply and demand. Every patient that starts with the device needs three follow up appointments booked at their scheduled intervals. Booking 200 people translates to 800 actual appointments. I think more clinics helps ease this burden.
Perhaps I have an unusual mindset re: tinnitus.
From the moment I awoke in June 2014 my Tinnitus has never budged one tiny scrap.
'Loud - permanent - eternal.'
Do I really have faith that anything will turn this thing off, or turn it around?
No - not really.
I am making every attempt to live for now.
Don't get me wrong though Nanny - I wish everyone well, will be really interested in their progress, and would love to be proved wrong.
If the unsolicited reviews turn out well of course then my feelings might change.