Lenire — Bimodal Stimulation Treatment by Neuromod

[Chriscom]

Hello,

My name is Simon and I have volunteered to help with capturing and reporting on the results of the Lenire User Experience Survey....

Simon

Thank you for taking this on!

 

[Dizzyhead888]

I have my appointment for assessment on 23rd July and it was offered by email. I can't go alone so need someone to keep taking time off work to accompany me! Would do it in a day but there are no evening flights back, sugar! Need to travel from Exeter Airport.

If I knew it was coming to London soon then that would solve the problem. My tinnitus is relentlessly loud and tormenting but I'm mostly managing to live a life.

Would be wonderful if Lenire helped us all.

I am July 23 too - see you.

 

[Jazzer]

I have my appointment for assessment on 23rd July and it was offered by email. I can't go alone so need someone to keep taking time off work to accompany me! Would do it in a day but there are no evening flights back, sugar! Need to travel from Exeter Airport.

If I knew it was coming to London soon then that would solve the problem. My tinnitus is relentlessly loud and tormenting but I'm mostly managing to live a life.

Would be wonderful if Lenire helped us all.

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

 

[Chriscom]

They have refused me. I just received the email.

I selected "less than 3 months", but It's only one more week for me to pass the three month mark with tinnitus. On July 10th. Anyway, they told me that they add me to "the cancellation list."

I'm just in shock.

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.

 

[jmasterj]

I wasn't able to get off the fence over the weekend so I sent them another round of questions this morning.

What I want to know is whether it's possible to get assessed in Ireland and use that assessment in the US. Along those lines, I want to know whether I have to commit to the actual device on-site or not if I'm accepted. The thought process is I want to hold onto the option of going ahead with treatment through Ireland in November but to limit things to a single trip if by November it looks like it will be in the US soon enough for me to wait for the rest. Kind of a convoluted strategy but probably the best way to play the odds.

What I don't want to do is commit under false pretenses and then back out last minute. That would be too selfish.

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.

 

[Agrajag364]

Hello,

My name is Simon and I have volunteered to help with capturing and reporting on the results of the Lenire User Experience Survey. I will be working with Hazel and Markku during this project.

Just to let you know, at the moment we now have 90 users who have registered with the group. Of these we have:

• 48 members who have agreed to the Terms and Conditions relating to providing information and who have also provided contact information, and of these:
• 34 have applied to Neuromod for their appointment, and of these:
  
• 4 have confirmed appointments.

We are presently in the process of agreeing the survey questions that we will be sending to the group members and expect to have this completed shortly. We will be seeking feedback on the survey from Tinnitus researchers and will be also hoping to get information from some of the Lenire customers who have early appointments to help with this.

Once the results start coming in, we will share this with the forum, including aggregated statistics, scatter plots etc. All data will be used in anonymised form.

If you have signed up already, the help you are providing with sharing your experience is really appreciated, and the results of the user experience survey should really help people to determine the effectiveness of the device.

If you are intending to purchase the device and haven't yet signed-up, it would be great if you could help us out.

Remember you can join up by clicking the banner at the top of this thread!

Simon

Thank you very much indeed for taking this on, this will be very valuable patient collected data.

 

[Manny]

They have refused me. I just received the email.

I selected "less than 3 months", but It's only one more week for me to pass the three month mark with tinnitus. On July 10th. Anyway, they told me that they add me to "the cancellation list."

I'm just in shock.

@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.

 

[annV]

I would just hate to go through all the travel and then get a release date dropped on me in early 2020.

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.

 

[KotaDomowa]

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?

 

[jmasterj]

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.

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.

 

[JJ2time]

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

 

[Bob den Hartog]

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.

 

[Nanny chocolate]

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

 

[acute]

I wouldn't be. Your tinnitus is very new. There are many changes it can undergo naturally in the next few weeks/months, often in a positive direction. You haven't given time to your hearing apparatus to settle.

One way to feel positive about this is to think that you are bequeathing your spot to someone who has probably been suffering for much longer than you have.

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.

 

[Bob den Hartog]

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!

 

[Nanny chocolate]

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

 

[dayma]

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.

 

[GlennS]

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 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.

 

[annV]

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!

I'll send it to you. Neuromod wanted to censor it off the internet but I still have it.

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.

This was my own speculation, I will definitely ask my source though!

 

[GregCA]

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.

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.

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.

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.

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.

Your communication is fine.

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.

And perhaps that is a good thing for you.

 

[Paulmanlike]

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!

 

[Jack Straw]

They have refused me. I just received the email.

I selected "less than 3 months", but It's only one more week for me to pass the three month mark with tinnitus. On July 10th. Anyway, they told me that they add me to "the cancellation list."

I'm just in shock.

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.

 

[Jack Straw]

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.

Don't want to hear that

 

[Mentos]

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?

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

 

[ChrisBoyMonkey]

They have refused me. I just received the email.

I selected "less than 3 months", but It's only one more week for me to pass the three month mark with tinnitus. On July 10th. Anyway, they told me that they add me to "the cancellation list."

I'm just in shock.

Try again in a week and put over 3 months!

 

[Redknight]

Hello,

My name is Simon and I have volunteered to help with capturing and reporting on the results of the Lenire User Experience Survey. I will be working with Hazel and Markku during this project.

Just to let you know, at the moment we now have 90 users who have registered with the group. Of these we have:

• 48 members who have agreed to the Terms and Conditions relating to providing information and who have also provided contact information, and of these:
• 34 have applied to Neuromod for their appointment, and of these:
  
• 4 have confirmed appointments.

We are presently in the process of agreeing the survey questions that we will be sending to the group members and expect to have this completed shortly. We will be seeking feedback on the survey from Tinnitus researchers and will be also hoping to get information from some of the Lenire customers who have early appointments to help with this.

Once the results start coming in, we will share this with the forum, including aggregated statistics, scatter plots etc. All data will be used in anonymised form.

If you have signed up already, the help you are providing with sharing your experience is really appreciated, and the results of the user experience survey should really help people to determine the effectiveness of the device.

If you are intending to purchase the device and haven't yet signed-up, it would be great if you could help us out.

Remember you can join up by clicking the banner at the top of this thread!

Simon

I thought there were far more than 4 confirmed appointments? Mine's the 16th July, in case you haven't got it yet.

 

[Markku]

I thought there were far more than 4 confirmed appointments?

There 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)

 

[JohnAdams]

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

Ask them what percentage of patients if any saw any worsening of their symptoms.

 

[spedgas]

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 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.

 

[Jazzer]

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

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.