MemberI can't wait anywhere near that long. We may be almost there, but I'm almost gone...
Q&A: Tinnitus Hub Meets Neuromod (Lenire)
- Thread starter Tinnitus Talk
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Hopefully the MuteButton will tide us over until the other products hit the market. If you're starving and the waiter brings you a basket of bread it will seem like a feast.
So they will just release it for Europe and the US? What about people like me living internationally in some other country? I can order the device from the US to my country tho if it would be available on Amazon etc but I guess you would need proper doctor prescription for that.
Please do release it internationally. Looks like people out of Ireland or the US are not getting the device or they don't have any plans of releasing the device worldwide, arghh I can't visit Ireland lol
Please do release it internationally. Looks like people out of Ireland or the US are not getting the device or they don't have any plans of releasing the device worldwide, arghh I can't visit Ireland lol
I agree. Some tell you "you just need to go and buy it!" but it is not so simple. The trip adds a lot of extra money. And what happens if the device is broken or unconfigured when you arrive in your country? You have to travel again!Please do release it internationally. Looks like people out of Ireland or the US are not getting the device or they don't have any plans of releasing the device worldwide, arghh I can't visit Ireland lol
It is great to know that some will get relief within a few days / months but, as an Argentine citizen, the solution is still far away.
Ideally, there should be authorized doctors in each country. We can buy the device online. But I guess the problem is the approval.......
It's been mentioned, but Susan Shore's device is for somatic tinnitus. I'm not sure what criteria anyone else is using, but to me, that alone puts her work behind others. While a higher percentage have a modulating type of ringing, leaving out a portion of sufferers is pretty meh in my opinion. I'd be happy to see data proving she's "ahead", but I don't actually care. This isn't an iPhone vs Android debate; I've no brand loyalty as long as it works.
The shilling for her device or FX-322 or anything as being better strikes me as odd. Gut feelings doesn't count, and the fact that their release is unknown is an important factor, considering the small minority that are suicidal. For them, I wouldn't call the first possible treatment a piece of bread when it can literally save their life. Let's also leave the fact that very few drugs make it to market.
You can never assume something will be available when they say it will be. The medical world is a damned turtle. X product may never hit the market at all, for all we know.
The shilling for her device or FX-322 or anything as being better strikes me as odd. Gut feelings doesn't count, and the fact that their release is unknown is an important factor, considering the small minority that are suicidal. For them, I wouldn't call the first possible treatment a piece of bread when it can literally save their life. Let's also leave the fact that very few drugs make it to market.
You can never assume something will be available when they say it will be. The medical world is a damned turtle. X product may never hit the market at all, for all we know.
MuteButton already has one failed launch. The fact is that they had the nerve to put a product on the market when they had to have known that it wasn't effective. Fool me once...
Guys hang tough - if it works and gets good reviews this will be distributed quicker than the next iPhone...
- Jun 6, 2013
- 1,373
- Tinnitus Since
- January 2002
- Cause of Tinnitus
- Dental Surgery
As Pakistani it would be very hard to travel to Ireland, I have been to London and spent 5 years there tho but things have Changed work here and I just can't afford extra money for applying to visa and traveling.I agree. Some tell you "you just need to go and buy it!" but it is not so simple. The trip adds a lot of extra money. And what happens if the device is broken or unconfigured when you arrive in your country? You have to travel again!
It is great to know that some will get relief within a few days / months but, as an Argentine citizen, the solution is still far away.
Ideally, there should be authorized doctors in each country. We can buy the device online. But I guess the problem is the approval.......
I hope they make it available internationally so everyone could buy it, I will gladly buy it if it's available on Amazon or eBay, even if only in EU or the US.
They do know that tinnitus can affect other people out of these countries as well right.
This is what I mean, but most doctors do not have the equipment to test above 8kHz. I've done maybe 8-10 hearing tests the last few years. Everytime I ask them "Can you do a test above 8kHz?" They say no. Then I ask "Do you know anywhere I can go to do that?" And they say no. I've tried this both in my home country of Sweden and in Austria where I currently live.
Or do you mean that the clinics that opt to buy the MuteButton might get a specific hearing test device that comes along with it?
- May 24, 2017
- 1,622
- Tinnitus Since
- 05/2017 (H since 06/2017)
- Cause of Tinnitus
- long term noise exposure (headphones), maybe some stress.
Very good question because it's the same situation for me in France, most of ENTs don't have the gears to test high frequencies.
Also in the Q&A I believe it was said that it is very easy to program the device to match your audiogram. How is it done? With a software via Bluetooth? Directly onto the unit?
They would need a parametric equalizer with a lot of bands to be able to match a full audiogram perfectly.
I wish they would have said more about this, but anyway, he also said "people travel for treatments" so I guess I'll find it out going there
It just dawned on me that the nomenclature may be nominally indicative of further trial types in the works - the first trial was titled TENT-A1 and the second A2 - they've both got the "A" prefix. And they're both described as parameter optimization trials.
Perhaps there will be a "B" series with evidence of efficacy as the primary goal.
This is just speculation of course.
Hopefully we'll get this placebo question answered in that text Q&A.
I meant non-somatic. The University of Minnesota device treats somatic and non-somatic tinnitus.
- Oct 17, 2017
- 646
- Tinnitus Since
- 2005
- Cause of Tinnitus
- unknown - possibly hereditary
https://www.irishtimes.com/business...just-the-start-for-neuromod-devices-1.2256123
"In clinical studies carried out by NUI Maynooth in conjunction with The Hermitage Clinic in Dublin the device has been shown to reduce tinnitus loudness by 42 per cent."
"In clinical studies carried out by NUI Maynooth in conjunction with The Hermitage Clinic in Dublin the device has been shown to reduce tinnitus loudness by 42 per cent."
- May 24, 2017
- 1,622
- Tinnitus Since
- 05/2017 (H since 06/2017)
- Cause of Tinnitus
- long term noise exposure (headphones), maybe some stress.
No, as far as I know it does not. Susan Shore has said it is for somatic tinnitus.
The University of Minnesota is working on a different device. Susan Shore is at the University of Michigan.
- Dec 31, 2017
- 204
- Tinnitus Since
- Mild since 2006. Severe since 2016
- Cause of Tinnitus
- An enthusiastic youth
Genuine question - what are you basing these statements on? How do you know the Susan Shore device is better, given that you haven't tried either of them? And what makes you confident the hair cell regeneration thing will be proven / approved within the next 4 years?
We don't know that and also Susan Shore doesn't know that.
If non-somatic forms didn't participate in the trial it doesn't mean that this device doesn't work for them.
"We're definitely encouraged by these results, but we need to optimize the length of treatments, identify which subgroups of patients may benefit most, and determine if this approach works in patients who have nonsomatic forms of the condition that can't be modulated by head and neck maneuvers," Shore said.
https://news.umich.edu/specially-ti...toms-in-test-aimed-at-condition-s-root-cause/
Because Susan Shore hasn't rushed to re-release a product that was previously proven to be ineffective.
Based on typical FDA approval timelines FX-322 is on track to be released around 2023. It's possible that it will be derailed before then but it appears to be a legitimate treatment.
@kelpiemsp has mentioned many times that these devices though targeted toward somatic tinnitus will benefit people who don't have somatic tinnitus.
I find it tiring sometimes how on the internet people file firmly into pro and con camps and then fight about it for sport.
How about conceding that this area of treatment is still experimental before we imply that a company is hopelessly incompetent or perhaps a deliberate scam?
If tinnitus were easy to fix it would have happened ages ago. I applaud all attempts to work on this problem. There are plenty of easier get-rich-quick schemes out there so I think the people behind these things are, by and large, sincere in their intentions. But hey, maybe I'm just too naive.
I'm all for the MuteButton being released and made available ASAP. Even if it's mildly effective it will reduce suffering for countless people until something better comes along. That's a good thing as far as I'm concerned.
- Dec 18, 2015
- 618
- 45
- Tinnitus Since
- 03/2015
- Cause of Tinnitus
- Noise induced, loud rock concert
Still Ross said in an interview that besides THI and TFI they measured MML, while he mentioned THI / TFI average improvement by 30% he disclosed no figures with regards to MML. Would it be possible to ask him to reveal MML improvement observed as well? Personally I don't care about THI/TFI, what matters to me is tinnitus volume or MML.
Neuromod website was updated.
Take a look at several patients stories who made the trial:
https://www.neuromoddevices.com/stories
And also the description page of the device and how it works:
https://www.neuromoddevices.com/company/technology
Can't wait to have it in France!!!
#Hope #Cure #Tinnitus!!!
Take a look at several patients stories who made the trial:
https://www.neuromoddevices.com/stories
And also the description page of the device and how it works:
https://www.neuromoddevices.com/company/technology
Can't wait to have it in France!!!
#Hope #Cure #Tinnitus!!!
- Oct 14, 2016
- 1,270
- Tinnitus Since
- All my life, but got worse 2016
- Cause of Tinnitus
- Noise induced / Concert
Oh come on! Sadly, I'm back after a bad setback, but I consider myself lucky to be here at this point, where some at least promising results are being published.
I must say that I was following closely the AM-101 and Autifony trials few years ago and that was extremely disappointing, in fact I still remember the day when Autifony trial failed and I was devastated. But now, things seem different, in the sense that Autifony didn't show any efficacy in humans and the participants in the trial weren't showing anything extraordinary, everything was about preclinical in vitro studies and animal models.
Neuromod seems to have gone further than that, with actual trials on humans that show efficacy. I read some time ago the paper that Shore published on Science Translational Medicine (a major journal in its area btw) and, even if I'm not an expert in neurology or neurophysiology, the paper is somewhat understandable and makes sense. I know that Shore is not involved in this product, but the underlying concept is mostly the same. As people already said in the thread, they have a peer-reviewed paper on the making, an actual product about to hit the market and I can't smell any bullshit on their website or the Q&A.
Please remember that they don't promise a cure, or silence, just a treatment to ease the ringing. Possibly, a more optimized neurostimulation protocol, with a combination of the (hopefully successful) FX-322 will give us even bigger relief. Personally, for me, having at least a treatment, a real one, available gives me a sense of control that was not around in the last years. And eases my anxiety, and that's a good thing.
Anyway, people is free to try or not try this treatment, but please wait a few weeks until people start reporting their experiences, I'm sure that a bunch of users will fly to Ireland soon.
I must say that I was following closely the AM-101 and Autifony trials few years ago and that was extremely disappointing, in fact I still remember the day when Autifony trial failed and I was devastated. But now, things seem different, in the sense that Autifony didn't show any efficacy in humans and the participants in the trial weren't showing anything extraordinary, everything was about preclinical in vitro studies and animal models.
Neuromod seems to have gone further than that, with actual trials on humans that show efficacy. I read some time ago the paper that Shore published on Science Translational Medicine (a major journal in its area btw) and, even if I'm not an expert in neurology or neurophysiology, the paper is somewhat understandable and makes sense. I know that Shore is not involved in this product, but the underlying concept is mostly the same. As people already said in the thread, they have a peer-reviewed paper on the making, an actual product about to hit the market and I can't smell any bullshit on their website or the Q&A.
Please remember that they don't promise a cure, or silence, just a treatment to ease the ringing. Possibly, a more optimized neurostimulation protocol, with a combination of the (hopefully successful) FX-322 will give us even bigger relief. Personally, for me, having at least a treatment, a real one, available gives me a sense of control that was not around in the last years. And eases my anxiety, and that's a good thing.
Anyway, people is free to try or not try this treatment, but please wait a few weeks until people start reporting their experiences, I'm sure that a bunch of users will fly to Ireland soon.
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