MuteButton

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Hubert Lim comes from the University of Minnesota and now he's working for Neuromod.

I can't find my white noise machine :-(
More good news! Didn't @kelpiemsp have great result with the Minnesota Device? My tinnitus is pretty mild so this should knock mine out completely.

Silence WE'RE COMING HOME BABY! We gotta celebrate soon guys!
 
If FX-322 ends up successfully reducing or curing tinnitus then what is this company going to do?
Continue with their business as normal. No single treatment and this includes FX-322 is going to reduce or cure everyone's tinnitus. Various treatments will treat various different people.
 
If FX-322 ends up successfully reducing or curing tinnitus then what is this company going to do?
I'm more or less with you. This is by no means a cure. Even if it completely gets rid of mine (which I believe it will since mine is around 30-35 dB) it doesn't change the fact we still have SOME hearing loss. The tinnitus will just be gone or significantly reduced.

I plan on getting one of those injections when Frequency Therapeutics put out their gene therapy.
 
If FX-322 ends up successfully reducing or curing tinnitus then what is this company going to do?
My guess would be they will sail of into the sunset with the hundreds of millions it makes in the 5 years we're left waiting for FX-322 and all the other potential cures that are going to take years to come to market.

They've whipped up a frenzy of optimism in a market place where desperation and demand for a cure is at an all time high and the only other sure fire treatment is killing yourself.

They're going to cash in big time now despite the fact that this device will only 'reduce' tinnitus to varying degrees for maybe half of us and might 'cure' a handful.

It's far from a sure thing but it's literally all we're being offered.......We're basically in a shit hole restaurant with one dish, a smiling waitress hiding the fact she couldn't give a fuck about us, and no option of walking out and going someplace else.
 
I think it's easy to understand MuteButton's premise.

The hypoglossal nerve innervates the tongue with signals from the brain. It's the 12th carnial nerve that emerges from the front of the medulla which is located at the bottom part of the brainstem in the pre olivary sulcus. It passes through the subarachnoid space and penetrates into the dura mater next to the hypoglossal canal (an opening in the occipital bone of the skull).

From here the nerve extends to a branch from the anterior ramus of C1 traveling close to the vagus nerve and spinal division of the accessory nerve.

Then it curves down from behind the vagus nerve, passing between the internal carotid artery and internal jugular vein slouching on the carotid sheath. From the hypoglossal nucleus (located in the brainstem) from where this nerve arises in form of various small rootlets, it creates a passage for itself through the hypoglossal canal and down to the neck and again passes over the tongue muscles. The hypoglossal nerves are located on the left as well as on the right side of the body.

This nerve is responsible for motor innervation of the majority of the muscles of the tongue.

I think that they should be responsible and make known all the physical conditions/diseases where this treatment won't help and there are several.
 
My guess would be they will sail of into the sunset with the hundreds of millions it makes in the 5 years we're left waiting for FX-322 and all the other potential cures that are going to take years to come to market.

They've whipped up a frenzy of optimism in a market place where desperation and demand for a cure is at an all time high and the only other sure fire treatment is killing yourself.

They're going to cash in big time now despite the fact that this device will only 'reduce' tinnitus to varying degrees for maybe half of us and might 'cure' a handful.

It's far from a sure thing but it's literally all we're being offered.......We're basically in a shit hole restaurant with one dish, a smiling waitress hiding the fact she couldn't give a fuck about us, and no option of walking out and going someplace else.
Still, I'd rather have one shitty restaurant than no restaurant at all.

Sooner or later, the market opens up and new methodologies will work for different people. Minnesota/Neuromod seem to be for non-somatic tinnitus. While Michigan (Susan Shore) is targeting somatic tinnitus.

The fact is, that shitty restaurant is going to have competition following it.
 
Still, I'd rather have one shitty restaurant than no restaurant at all.

Sooner or later, the market opens up and new methodologies will work for different people. Minnesota/Neuromod seem to be for non-somatic tinnitus. While Michigan (Susan Shore) is targeting somatic tinnitus.

The fact is, that shitty restaurant is going to have competition following it.
Yeah but oh how different the game would be if we had 3 or 4 restaurants opening at the same time and vying for our custom...... Instead of one rather haughty establishment keeping us waiting miserably in the rain to even get a seat at the table.
 
Minnesota/Neuromod seem to be for non-somatic tinnitus.
This is (thankfully) incorrect, it has been explicitly stated that whether the tinnitus is somatic (can be manipulated by jaw movements etc) or not has no bearing on the Neuromod device's effectiveness.

Dr Shore's team targets somatic, yes, but they didn't say it won't work on non-somatic - they're just not focusing on that at the moment.

Sorry for contradicting you but I think these are happy contradictions :)
 
My tinnitus is pretty mild so this should knock mine out completely.
Same here. I am so hyped for this. If this thing works I will reserve a cabin in the woods for a weekend and go there with my book reader and do nothing but bask in the silence and read undisturbed.

Then I'll probably launch a social media advocacy campaign and try to get the word out to as many tinnitus sufferers in my country as possible. Many of my fellow compatriots don't speak good English and the word won't get to them otherwise.
 
Yeah but oh how different the game would be if we had 3 or 4 restaurants opening at the same time and vying for our custom...... Instead of one rather haughty establishment keeping us waiting miserably in the rain to even get a seat at the table.
Feel your pain. My dad is high up in enterprise Ireland. The body that awards grants to start ups.

Gonna have a word with him next week and see if can put the heat on these guys. Where's the respect?
 
They're going to cash in big time now despite the fact that this device will only 'reduce' tinnitus to varying degrees for maybe half of us and might 'cure' a handful.
I just have a hard time swallowing a purely biological "luck of the draw" conclusion as far as who benefits and how much.

I suspect all tinnitus sufferers with your run of the mill high-frequency hearing damage could benefit roughly equally, but that the specific treatment regimen determines the outcome. What they're doing is attempting to sort of brainhack neurons one at a time and they simply don't yet have a firm grip on cause and effect. They can pick frequencies, timing, volume of tone, intensity of stimulus, duration of treatment session, duration of total treatments, plus lot of other variables like time of day and frame of mind during treatment. It's going to take a lot more time to look at the data and tease out cause and effect AFTER the fact to draw new conclusions. Like oh, this guy didn't respond well because he was doing treatments when he was half asleep. New insights like that will emerge. They might emerge even from Neuromod's current trial they are running and cause them to revise their numbers.

Then the question becomes, when should someone decide to buy in? Most of us, if we have the money, will probably opt to gamble now rather than later. That's because there's no reason to believe that there is any harm in being treated multiple times. So why not experience improvement now and maybe go back later when the process is that much more refined?

Anyway, that's how I see this going down, albeit colored by some wishful thinking.
 
When do you guys reckon the release date is going to be? For both Ireland and the US?

I honestly see a Spring Ireland/UK release and a Summer release for the US.
I think it's going to be Autumn for Ireland with a massive shortage of suppliers struggling with demand for appointments. Early 2020 for the U.K. and to be honest I reckon Susan Shore will get to market before Neuromod in the US.
 
Where's the respect?
Where's the compassion? I'm assuming their office browses this forum and thus is aware of the unbearable torture some of us exist with daily. The sheer desperation to try this........ Why not start the ball rolling by doing a hundred in house set up appointments for Tinnitus Talk members in Ireland and the U.K. who have expressed a solid interest? Charge us an introductory 2 or 3k. That's £250,000 they could put towards marketing immediately, not to mention the word of mouth advertising if it works.

And there my friends is the rub...... If it works.
 
Neuromod, a healthcare start-up developing treatments for tinnitus, is in talks to raise up to €24m in investment.

https://www.thetimes.co.uk/article/neuromod-buzzing-in-24m-tinnitus-boost-rg0b5tgcq

Accounts just filed for the business state that the directors are in "advanced discussions with third-party investors" and are "confident of securing additional investment of €24m" in the coming months.

The accounts also state that Neuromod expects to start generating revenue in the first quarter of 2019 following a successful period of clinical trials.
 
I often compare Neuromod with DeSyncra (ACRN).

Look at DeSyncra, that ANM company went bankrupt before them, didn't appear to have the success that was speculated a few years ago.

I asked my audiologist and she said the evidence is limited. Unfortunately, at this stage so is the evidence for Neuromod.

If they do make millions it will be because this treatment works, thanks to forums like this word will get around if it works or not for the majority.

Tinnitus is as complex as it gets, we still don't know exactly the mechanism.

I wish you the best of luck Neuromod if you're reading this!
 
What interests me the most is seeing the long term effect of this. Will tinnitus still be lower or gone a year after treatment?

My biggest worry, next after if it works at all, is that the effect will "wear-off" in time, and the brain will eventually bring back the tinnitus signal full force... Could the treatment be applied several times and work each time? For instance the brain develops tolerance to many medicines over time, so that eventually they will loose their effect... Will it be the same with this device, I wonder.
 
Yeah but oh how different the game would be if we had 3 or 4 restaurants opening at the same time and vying for our custom...... Instead of one rather haughty establishment keeping us waiting miserably in the rain to even get a seat at the table.

What really frustrates me is that the tinnitus community doesn't do anything to help make this happen. Where are all the campaigns to governments and other organisations to bring awareness to our cause? Where are all the charitable funds raising money for research, on a regular basis, as we see with many other conditions? Where is all the activism to effect change? A recent petition managed to generate a whopping 2,000 signatures in 5 months. It's nowhere near good enough and yet we wonder why hardly anything is being done?

The significance of our posts on here is equal to the amount of influence a message in a bottle may have. The world needs to be made aware (educated) of what this condition can do to a person, and it's not if we only talk on here. The only way to change something is for everybody to join together and make it happen. There are enough people with tinnitus to found multiple organisations, with the primary aim of creating awareness and raising money for curative biomedical research. Until the tinnitus community wakes up and realises the power it has, and actually utilises it, then expect more of the same for the foreseeable future.

Like I've said before, donations to improve our situation are absurdly low. People often take offence to this (none is intended, I'm just representing the facts), but more people would rather buy a coffee and a sandwich than chip in and help the cause. What's even more hypocritical is that a lot of these people will then come on here and start criticising every effort that is made by the ones who are, at least, doing something, and something is always better than nothing.

I understand the devastation this condition can have on one's life. When mine got worse after 14 years or so of mild tinnitus, I spent a long time feeling suicidal and at total rock bottom. I was desperate and miserable. At no point did I expect a miracle to happen and for the world to just magic up a cure out of thin air for me. This isn't a utopian dream; it's real life, and the real world is full of desperation and misery. Tinnitus is just one problem that a person can face out of millions of other things. If we don't shout from the rooftops to make the world hear us, then it won't, and the status quo will remain. The tinnitus community has a lot of people in it, but not enough advocates/activists or people willing to help (even down to the point of spending a minute to sign a petition).
 
When do you guys reckon the release date is going to be? For both Ireland and the US?

I honestly see a Spring Ireland/UK release and a Summer release for the US.
Who knows. It would be wild speculation.

Facts are they said "soon" for Ireland. Outside of that it's just a waiting game and hoping test results come back positive and no set backs occur there.

My "gut" would be that getting though FDA will take it to later this year or next in the States. Again. Speculation.
 
Is Neuromod located in Ireland or in Northern Ireland which belongs to the UK?

I'm asking this because of the coming Brexit and the consequences for companies and their trade agreements between EU and non-EU countries.
 
What interests me the most is seeing the long term effect of this. Will tinnitus still be lower or gone a year after treatment?

My biggest worry, next after if it works at all, is that the effect will "wear-off" in time, and the brain will eventually bring back the tinnitus signal full force... Could the treatment be applied several times and work each time? For instance the brain develops tolerance to many medicines over time, so that eventually they will loose their effect... Will it be the same with this device, I wonder.
I think this still showed improvement after the 12 month follow up, I could be wrong though. It remains to be seen if the effects last longer than this period. I would hope you can just have another "round" of this and it will push it down or suppress again.
 
Is Neuromod located in Ireland or in Northern Ireland which belongs to the UK?

I'm asking this because of the coming Brexit and the consequences for companies and their trade agreements between EU and non-EU countries.
Just ride the chunnel over there and buy one.
 
The FDA. Arrrrrgggggg!
Pesky regulators, always saying "no you can't market this unproven snake oil", and "Gee, Purdue pharma, you sure spent a lot of millions lobbying to relax opiod prescribing practices, ushering in a new dark age of American addiction".

Darn FDA! Things are so much better in Russia or Thailand where there's no burden of proof, and people are free to sell ineffective junk as "cures", or saline water injections as "stem cells".... That's much better!

If the FDA blocks this device, then be suspicious that it doesn't actually work.
 
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