Q&A: Tinnitus Hub Meets Neuromod (Lenire)

Status
Not open for further replies.
If you split the wire at the end of the tongue stimulator, attached two electrodes which can be applied to the back of the neck, would this not now become the same type of device being developed by Susan Shore?

The methodology of both MuteButton and Shore's device seem identical in all other respects.
 
Thank you Clare B, you're a great human being. I am happy your tinnitus went away and really grateful that you have taken your time to speak to the community. Bless you, you're an angel.
 
Will this have any viability for those who have noise induced tinnitus and suffers from what I call a reactive/kindling type of tinnitus, which constantly fluctuates up and down in sound, which is further increased with noise stimulation that will jump it up even higher to compete until the stimulus is gone?

I don't know if this is a form of hyperacusis, extreme auditory sensitivity or just purely damage to hair cells/nerves.
 
Will this have any viability for those who have noise induced tinnitus and suffers from what I call a reactive/kindling type of tinnitus, which constantly fluctuates up and down in sound, which is further increased with noise stimulation that will jump it up even higher to compete until the stimulus is gone?

I don't know if this is a form of hyperacusis, extreme auditory sensitivity or just purely damage to hair cells/nerves.
Mine's like this and I'm sure others' is as well. Unfortunately no ones knows shit until it's released.
 


"Have patients gotten worse? There were a small number of patients who have gotten worse, erm not dramatically, their tinnitus might have gotten, you know, elevated. These patients, they were asked whether they wanted to discontinue the treatment or continue, a lot of them continued. Eh, most of those cases then resolved, so we haven't had any serious adverse events in the study, and eh so we haven't had any very..just very, kind of, yeah well this term "serious adverse events", you know so there aren't any patients we're very very concerned about. And the majority of patients did actually, in patients that, some patients experience some change at the start which is probably to be expected at the start if you are doing something, if you are disrupting this kind of neural processes there is going to be change".​

In a way I am encouraged he's discussed this. It is striking a nerve with me as I had a surgery that kicked off my increased spiral of ill health, and before I had it I did loads of research and went by the papers and doctors who said it made no one's condition worse. A few years later the rise of social media showed that to be bollocks. He's not denying it never happens. And it may well be as he implies, mostly temporary. As I say, I would probably want to see the 12 month follow up paper before trying this and the experiences of other patients less concerned than me with risk!

It would be interesting to have statistical information and know what percentage of patients were affected permanently. In any case, even if it is 1%, there is always some risk.
 
It would be interesting to have statistical information and know what percentage of patients were affected permanently. In any case, even if it is 1%, there is always some risk.
Indeed, and the level of risk versus benefit informs patients' decisions as to whether to risk using a drug or device. Would that the risk-benefit ratios reported in papers were always accurate.
 
Mine's like this and I'm sure others' is as well. Unfortunately no ones knows shit until it's released.
Mine fluctuates like crazy, not so much week by week as day by day sometimes as well, but it doesn't seem to be reactive to anything except maybe stress.
 
Mine's like this and I'm sure others' is as well. Unfortunately no ones knows shit until it's released.
Out of curiosity was yours always like this? I've had bad tinnitus/hyperacusis for years going up and down in progress, but recently got this certain type I described which has sort of stuck. I had it before but it went away after a few weeks. Seems like it's not going away now, so I'm pretty stunned as I didn't think it could get any worse than just normal tinnitus/hyperacusis.
 
Sadly I have experienced it.
Me too. I worked in science, and perhaps partly because of that I rather naively believed the best way to make a decision on whether to have a medical procedure was to assess the success/risk figures given in medical papers. I didn't actually realise how inaccurate many are. Bench science has nothing on medical science when it comes to unreliable data I fear, often due to the commercial influence in medicine. However, I am encouraged to see the risk of getting worse with this device discussed honestly by the device manufacturer with a patient community member here in this video.
 
Last edited:
Greetings - Just off the phone with Neuromod and they genuinely do not have a date or even a ballpark idea when it will release. "Soon" was all that could be given at this stage.

R
Thanks for the info. What's your gut feeling? Did they hit some major snag or is this the "normal" creative chaos just before an important event?

I promised the girlfriend that we'd be visiting Ireland soon, so they'd better hurry or my ass is grass.
 
Greetings - Just off the phone with Neuromod and they genuinely do not have a date or even a ballpark idea when it will release. "Soon" was all that could be given at this stage.

R
So it's definitely not January then.
 
Greetings - Just off the phone with Neuromod and they genuinely do not have a date or even a ballpark idea when it will release. "Soon" was all that could be given at this stage.

R
Thanks for trying. I'm sure the logistics involved are complicated which make it difficult to nail down a date.
 
Greetings - Just off the phone with Neuromod and they genuinely do not have a date or even a ballpark idea when it will release. "Soon" was all that could be given at this stage.

R
That's unfortunate. It seems that January was only referenced at the BTA conference and that they haven't reiterated it since. This prob means they have had to push it back due to unforeseen circumstances. I wouldn't think this affects the authenticity of the product or the company.

I still wish they would hurry up though. :p
 
If they rushed it and it lead to issues we would all be here talking garbage. I can't blame them for wanting to get it right. Especially since their last release seems too early now. They know about the scrutiny involved here. I'm going to put "soon" in the next few months category.
 
If they rushed it and it lead to issues we would all be here talking garbage. I can't blame them for wanting to get it right. Especially since their last release seems too early now. They know about the scrutiny involved here. I'm going to put "soon" in the next few months category.
If they drag this out much longer it won't be available in the US until 2020 by which time the Susan Shore device (which I have more confidence in) will likely be available.

Message to Neuromod: "Don't toy with our affections!"
 
If they drag this out much longer it won't be available in the US until 2020 by which time the Susan Shore device (which I have more confidence in) will likely be available.
Susan Shore told me by email that she will complete her trials within 1 year. I think 2020 is too fast for it to reach the market. Maybe 2021?
 
If they rushed it and it lead to issues we would all be here talking garbage. I can't blame them for wanting to get it right. Especially since their last release seems too early now. They know about the scrutiny involved here. I'm going to put "soon" in the next few months category.
You could be right, bless them, maybe they want to publish the bigger trial first.
 
Susan Shore told me by email that she will complete her trials within 1 year. I think 2020 is too fast for it to reach the market. Maybe 2021?
Maybe. From what I've read it sounds like they are trying to get the government approval in place at the same time as conducting the final trials but I could be wrong. I could see them being where Neuromod is now within a year. I'm sure Neuromod is afraid that the Susan Shore device will potentially steal their thunder if they don't get their a** in gear. AT LEAST GIVE US A DATE.
 
What a bummer. I was really looking forward to hearing about results from the Irish people trying it out in January.

Guess we gotta wait a bit more.
 
I find it both weird and upsetting that Neuromod would originally mention that they are aiming for a January release, but then backtrack and not even be able to give any timeframe at all.

Well maybe they ran into an unforeseen logistical problem.
 
Out of curiosity was yours always like this? I've had bad tinnitus/hyperacusis for years going up and down in progress, but recently got this certain type I described which has sort of stuck. I had it before but it went away after a few weeks. Seems like it's not going away now, so I'm pretty stunned as I didn't think it could get any worse than just normal tinnitus/hyperacusis.
No, this started happening in the summertime. Just out of the blue. It's slowly been getting better/less reactive.
 
Will this have any viability for those who have noise induced tinnitus and suffers from what I call a reactive/kindling type of tinnitus, which constantly fluctuates up and down in sound, which is further increased with noise stimulation that will jump it up even higher to compete until the stimulus is gone?
Mine is also like this, really hope one of these treatments will reduce how reactive it is, being able to mask my tinnitus with a fan/white noise is the dream right now.

Sad that we have no news on a January release date, I hope it won't be too long until an actual release window, it would be nice for a little more clear communication on what's holding them up but I assume there are reasons they can't disclose their current state.
 
No, this started happening in the summertime. Just out of the blue. It's slowly been getting better/less reactive.
Was your original tinnitus noise induced? And out of curiosity, do you suffer any ETD type issues? Or notice any TTTS symptoms like clicking or vibrating pulses of the inner ear muscle at times?
 
Was your original tinnitus noise induced? And out of curiosity, do you suffer any ETD type issues? Or notice any TTTS symptoms like clicking or vibrating pulses of the inner ear muscle at times?
Yes probably noise, I do feel like I have some ETD issues, and I have major TTTS to crumpling wrappers.
 
Status
Not open for further replies.

Log in or register to get the full forum benefits!

Register

Register on Tinnitus Talk for free!

Register Now