Acoustic CR® Neuromodulation: a New Treatment for Tinnitus

#123
Hi Pete, Hmmm, I dont understand that one then. I always thought 'tonal' was one tone ie. one note, like a 'eeeeee' or a hum. I'd never call a jet engine noise 'tonal'!!
 
#125
I think if the trial is successful - (again how exactly that is tested is key) - then the tinnitus clinic will use the trial findings to promote their device and get a lot more customers which at around £5000 each will add to their profits and they'll easily make back the money from funding the trial.

I can't see the NHS ever funding it frankly - my NHS ENT consultant was completely dismissive about it - I don't necessarily think he's right but that is indicative of current NHS attitudes.

As Carlover points out what successful means is key. This device needs to show it's better not just than a placebo but also than the standard white noise therapy treatments which are currently available.

It's interesting that the clinic don't seem to be too discriminating in their criteria about who the device will work for. I guess they aren't going to turn that many customers away.
 
#126
It's also likely the clinic is getting the devices for free of charge or relatively inexpensively from ANM-Medical.
The face-to-face sessions with the trial participants cost something to the clinic, so it's not completely a free ride for the company, but I imagine they wouldn't be facing too severe financial troubles if the trial isn't that successful.

We will see... hope for the best.

It is weird though that if I read correctly (the previous page's express.co.uk article erik posted), the device has been used by over 2,000 tinnitus patients in Germany. How come if it worked well it hasn't gotten a bigger spotlight?

I know SISKO is German and frequents a German tinnitus board (tinnitus.de), maybe he has some anecdotal reports available through that avenue? Chip in, SISKO! Would you call this treatment a success by what you've read?
 
#127
Ok, I'm going to reiterate my point; yes, they will gain if the trials are successful, undoubtedly. But by putting their neck on the line like this if it fails then they are just about done. Those test results will be visible to anyone who searches the ANM device on Google. This possibility won't have escaped them so they must have a very firm belief in their product. Why would they have that belief? Why would you? Because they've seen it work.

I already gave you an idea of how they could determine the success criteria. It could be a % volume reduction. Every day on this site people describe their T as 3/10, 7/10 and for some poor souls 10/10. Why is it beyond the wit of the trial leaders to assess success in this way too?

Why do you say that the Clinic aren't too discriminating about who the device will work for? How do you know that? I've personally been told by them, over the phone, that I'm not suitable for the device because of how I described my noise. You just can't make these generalisations based on one or two people's experiences on here.

I just cant believe that you are quoting an NHS ENT consultant's dismissiveness as any sort of evidence that the ANM device doesn't work. NHS ENT consultants are dissmissive of tinnitus, full stop!

If this thing is proven to work, albeit only for a certain subtype of T, (and we all know there are many), and the NHS refuse to fund it then its up to associations like the BTA and forums like this to raise a loud protest.

Again, they are putting their money where their mouth is.
 
#129
Markku said:
It's also likely the clinic is getting the devices for free of charge or relatively inexpensively from ANM-Medical.
The face-to-face sessions with the trial participants cost something to the clinic, so it's not completely a free ride for the company, but I imagine they wouldn't be facing too severe financial troubles if the trial isn't that successful.

We will see... hope for the best.

It is weird though that if I read correctly (the previous page's express.co.uk article erik posted), the device has been used by over 2,000 tinnitus patients in Germany. How come if it worked well it hasn't gotten a bigger spotlight?

I know SISKO is German and frequents a German tinnitus board (tinnitus.de), maybe he has some anecdotal reports available through that avenue? Chip in, SISKO! Would you call this treatment a success by what you've read?
Click to expand...

Im sure funding a research project is nothing like a free ride. and the bad publicity if it fails will cost them dear. Everything I would have said.

In answer to your question about the device in Germany; there are many audiologists who can supply this device in that country, not like here, where there's only one provider. Those audiologists might be un-skilled or even unscrupulous and may be accepting people who have tinnitus which is not suitable for treatment with the device. its even possible that the T people beg to try it even though they are told its unlikely they will get a result. People are desperate, as we know.

You say hope for the best Markku, but it doesnt sound like people are.
 
#131
Louise said "I just cant believe that you are quoting an NHS ENT consultant's dismissiveness as any sort of evidence that the ANM device doesn't work. NHS ENT consultants are dissmissive of tinnitus, full stop!"

If you read my post again you'll see that's exactly what I'm not doing. What I'm using it as is evidence that the mainstream NHS will refuse to fund the ANM device - even if there is evidence that it is effective against tinnitus.

By the way I completely agree that ENT consultants are all too often dismissive of tinnitus.

As for the clinic's attitudes I'm simply going by other people's experiences on here. Personally I won't be thinking about investing in the device until I have more evidence of its effectiveness compared not just with placebo but with other sound therapies. That doesn't mean I'm against other people who choose to spend money on it. As we know tinnitus can be an awful experience and many people will do what they can to alleviate it.
 
#132
I don't understand how a failed trial would be bad publicity and cost them (The Tinnitus Clinic) dearly...

This treatment is very different from the usual snake oils and ring reliefs that there are available, lots of data, several trials going on and listed on clinicaltrials.gov, pubmed brings up some results, etc.

This isn't even advertised as cure-all (or cure whatsoever, it's never been suggested it would completely stop the tinnitus for the majority of users, many people could get only partial relief which would be lovely and way better than nothing to most sufferers, and only people with tonal tinnitus are (best?) candidates).

If the trials were to fail and the device to die a slow death, I don't see the Tinnitus Clinic getting bad reputation for it.
On the contrary, every single trial and study there is for tinnitus, can only be good, especially when the treatment trialled has more substance to it than some homeopathic stuff.

If it fails, it isn't the fault of the Tinnitus Clinic (at least they tried & did a good thing, can we say that about the public health care systems and their efforts toward tinnitus?).
They are doing the trial to find out how it works on a larger set of patients and like david c said, is there more to it than being just another white noise treatment.

I agree with the sentiment that the Tinnitus Clinic probably wouldn't be funding & organizing the trial if they didn't have some sort of (witnessed) faith in the treatment.

But I also believe they have very thoroughly weighed the possible outcomes and what would happen if the trial failed.
I don't believe for a second that they would have organized the trial in the first place if the trial failing meant their business venture was over. They do good, but the clinic isn't a charity, as far as I know.

It's pretty much a waiting game now. I bet everybody here wishes this is found to be a suitable treatment for (tonal) tinnitus. And if several trials find it to be just that, I'm sure public health care systems like the NHS or Finnish public health care would sooner or later "approve" it and then the cost would no longer be an issue to the patient.


my 2¢
 
#133
They sell this device from an expensive address in London. If they end up no longer selling the device due to it failing the trials then I would imagine their profits would plummet. Game over or thereabouts I would have said. I'm trying to illustrate the point that they must have a great deal of faith in this product.

Whatever anyway, if people want to be negative then carry on.
 
#134
Louise said:
They sell this device from an expensive address in London. If they end up no longer selling the device due to it failing the trials then I would imagine their profits would plummet. Game over or thereabouts I would have said. I'm trying to illustrate the point that they must have a great deal of faith in this product.

Whatever anyway, if people want to be negative then carry on.
Click to expand...

Yes, and my point is that the Tinnitus Clinic wasn't dependent on this device before. If the trials failed -> product would no longer sell -> profits could decrease from the current ones, but by how much? Is there any data available how many of these devices they have currently sold? It's so expensive in the UK that I figure not that many tinnitus sufferers have opted for it currently.

The question, therefore, is: what's the amount of their revenue this device is responsible for. I would think it's minimal, but that's not based on any inside knowledge whatsoever.

I'm sorry if I come off as negative. Honest to god I wish this device works. Why would anyone wish this device failed is beyond me. I'm always just trying to be a bit of a realistic when it comes to tinnitus treatments so I don't end up sorely disappointed.


By the way, this isn't meant to sound like coming from a conspiracy theorist, but:
This study I earlier quoted: http://www.ncbi.nlm.nih.gov/pubmed/22414611
Was organized by Research Center Jülich, Institute for Neuroscience and Medicine-Neuromodulation INM-7, Jülich, Germany. p.tass@fz-juelich.de

-> http://www.fz-juelich.de/portal/EN/Research/Health/Neurostimulator/_node.html
"In order to translate the research results into medical products for use in patients, the Jülich-based company Adaptive Neuromodulation (ANM), a spin-off of Forschungszentrum Jülich, was founded in 2005."

I had no clue earlier that this study was carried out by a research center company off of which the ANM was founded as a spin-off.

Some people might not call the study I quoted completely unbiased based on these findings.

This just brings Neuromonics to mind a bit, where the company itself announced pretty good results, but then later on 3rd party trials found no difference between Neuromonics and regular white noise therapy. Which is what I absolutely hope doesn't happen with ACR.

I'm going to stay away from this thread until further results are available about the treatment. There's nothing I can do to accelerate the process, so it's best to keep to myself and hope for the best.
Still, if SISKO happens to read this, I hope he can share his opinion about this treatment as Germans have had it for longer now.
 
#135
Hi all,again I would like to reiterate ,that Mark the head audiologist at the Tinnitus Clinic Is a really decent guy.They have to say no to 50% of people who have applied.I am not sure howmany of the "passed" 50% go on to pay for this.

Now I know Mark was heavily Involved In setting up the Trial.Thing Is this must have cost a fortune and I believe they are putting themselves up for boom or bust. I believe there are 2 directors who set up The Tinnitus Clinic and the team Is 2/3 audiologists,one I wouldnt give you Tuppence for (If you go, see Mark!!!) a practice manager and receptionist.They also do hearing aids and other T type protocols ,not sure what they are.

As for my jet engine ,ok It doesnt sound like a keyboard tone but I can get the pitch and they have fail safe methods to "catch you out" if youve gone off track. A lot get their money back less set up fee wahtever that Is after 8 weeks because they just cant pitch match.
For me Its become an expensive masker.With me if I am not hearing sounds after an hour or so I start to get a horrible pressure feeling ,this kit helps that ,but T after 15 months is still as bad.
 
#136
Here is my comment for this Treatment, as Markku asked me for:

So Hi. Short Feedback for this CR Accoustic Treatment by ANM Medical; Prof. Tass. I am from Germany and know the thread very well where the germans discussed this very long. But for long time, not anymore..

CR Accoustic: It is claimed to help people, who have tonal tinnitus, actually you have to pitch your frequency like 3kHz or 6kHz etc. and need to hear the stimulation sounds. The ENT can check your hearing test. I think you all know.

In the german www.tinnitus.de board there are some, who definetely were helped even cured, but the most unfortunately not.I would say 20% - 30 % positive feedback. If you compare to placebo ..which has 40% it s not much ...

I have also tried it for long time and many settings, and still sometimes do, but no positive effect for me.

In the ENT where I was, there was also only one single person who was nearly cured from maybe 15 people. The rest had no positive outcome. So I am a little bit dissapointed but it is worth to try for people who really suffer from tinnitus. Off course you have to meet the criterias from ANM). The negative point is the still high costs..also for appointment in the ENT and Setting matter of the device.

The TRI Institution in Regensburg (Dr. Langguth) is also a sceptical (still even after 3 years now!). They say, that Tinnitus is actually not only a disease in the hearing cortex. Its a network of whatever.

I know also several people, where we started together this treatment and they had same outcome like me or the majority. Much money spent and no "cure" or "improvement". I hope they will keep research and find more informations about this issue in general.

If you have more questions, please let me know.
SISKO
 
#137
Thanks SISKO for the answers.
It's really great we have you here since the Google translator won't do justice and getting first hand experience from a person who has both used the device themselves and also is a regular on the biggest tinnitus forum in German is truly quite extraordinary.

Thank you.

It is disappointing the device doesn't seem to have yielded better results.

What did you mean by this: "I would say 20% - 30 % positive feedback. If you compare to placebo ..which has 40% it s not much ..."

Do you mean that those who get the placebo treatment, 40% of them are happy with the results?

Much will be said on the fate of Acoustic CR once the UK trials are completed.

My personal stance currently: I wouldn't pay the thousands of £ or € to get this treatment based on what I just read, but I would be more than willing to participate in the trial.

Is there anybody else here who is planning on asking to be included in the UK Acoustic CR trial? Or is currently in it?
 
#138
Hi all,

I'm taking part in the UK trial at the moment at the Nottingham centre, I have tonal tinnitus with around a 1Khz frequency difference in each ear. I'm in week 6 and can't say I have felt any sort of benefit from the device yet.

I had a drop of 1Khz in both ears from when it was first measured, which if anything has resulted in me being more aware and more bothered by my tinnitus, after years of (partial) habituation it's given me a new set of noises to listen to. On my last visit I struggled to actually match the frequency of my tinnitus, it seemed to be broader.

The NM tones are not too invasive and have a masking effect so they're okay, however I think I could synthesise sounds myself that would work much better. They are a set of 3 sound patterns that are around my tinnitus tones. If anyone is interested I have recorded them, they sound very unpleasant through speakers though. The device has earphones that practically sit in your ear canal.

Of course I could be in the placebo group as it's a double blind study so they have no idea when they are calibrating the device if the tones delivered are actually those that are supposed to work. I'm kind of hoping I am in the placebo group because all those who are will then get the follow up of the real treatment after the initial trial period ends.

They are very professional at the Nottingham NHBRU and the trial seems well run so these results should be very reliable when the trial ends.

Any questions I'll be happy to answer.

Steve
 
#140
I can't imagine it could cause too much harm. The worst thing is increased awareness for me, however they won't really know until they have completed the trials and observed any side effects. I have had a bit of a strange thing with my speech that I'll be telling them about on my next visit though, kind of like an impediment with 's' sounds, put it down to a bit of a cold, hopefully my brain isn't being reorganised.

I've embedded a YouTube link with a recording of the sounds from my device so you can hear what it is like. It isn't quite as harsh as this as it comes from small earphones at a low volume and it's geared towards their frequency response.



This could be a placebo group tone but it is in line with the description of the treatment.
 
#143
Hi Conor,

Not sure exactly how long it lasts but my calendar has appointments up until mid November. I think I was fairly late into it as Nottingham had plenty of participants and I had to wait to be seen.
 
#144
When I went they were still hunting for participants. The guy who assessed me said he'd seen 535 people and was still looking. That's because they are so picky. You cant be tooooo anxious or you'll get booted and you cant be tooooo un-anxious or you'll get booted. A bit like National Rail and the wrong type of leaves :(
 
#145
Louise said:
When I went they were still hunting for participants. The guy who assessed me said he'd seen 535 people and was still looking. That's because they are so picky. You cant be tooooo anxious or you'll get booted and you cant be tooooo un-anxious or you'll get booted. A bit like National Rail and the wrong type of leaves :(
Click to expand...
I think Markku has already let you know, but I can synthesise tones from Jibs post and create a treatment in line with the academic paper on ANM. Head to https://www.tinnitustalk.com/thread...n-do-it-yourself-guide.1469/page-2#post-11843, check out the theory and let me know your tone if you want me to do a sequence for you.
 
#147
I have listened to the tones posted in that video.
Guess it is not placebo - sounds like real treatment tones.

We also measured the frequencies which are used for the settings.
There are some software musician programm where you can analyze this... I will check the name.
Maybe it was Magix music maker !?

However it's used everyone a little bit another setting.
But as a guide 1.1 / 1.3 and 0.7 and 0.9 I do remember as tones around the origin tinnitus frequency.
Maybe this might help in copying the CR

Important is, that the tones are adjusted to your hearing. Indication for loudness setting can be the audio gram for example.
All tones need to be heard in same volume. Keep in mind

SISKO
 
#148
SISKO said:
I have listened to the tones posted in that video.
Guess it is not placebo - sounds like real treatment tones.

We also measured the frequencies which are used for the settings.
There are some software musician programm where you can analyze this... I will check the name.
Maybe it was Magix music maker !?

However it's used everyone a little bit another setting.
But as a guide 1.1 / 1.3 and 0.7 and 0.9 I do remember as tones around the origin tinnitus frequency.
Maybe this might help in copying the CR

Important is, that the tones are adjusted to your hearing. Indication for loudness setting can be the audio gram for example.
All tones need to be heard in same volume. Keep in mind

SISKO
Click to expand...
That's a good point. In the synth all tones are of equal loudness but individuals will need to adjust them to their own hearing. That's not easy unless you are sitting with somebody.

The guide from Jibs uses the tinnitus tone and produces 4 tones at -400Hz ,-900Hz, +900Hz, +1500Hz, playing 8 different sequences of 12 notes in a loop, with silence for 2/3 the length of the sequence. He took this from Counteracting tinnitus by acoustic coordinated reset neuromodulation: Peter A. Tassa,b,∗, Ilya Adamchica, Hans-Joachim Freunda, Tatjana von Stackelbergc and Christian Hauptmanna
 
#149
Hi guys
Just wanted to let you know I am also on the trial. Steve did you tell them about the thing with your speech. I will keep everyone updated with my experience.
 
#150
Hi folks
It's day 3 of my device. I have noticed that after using the device for 1-2 hours I experience residual inhibition. In my bedroom where I always hear my tinnitus I stand there and listen and I cannot hear my hum after using this device. Just wanted to update you. The device is easy to use and I don't mind listening to the tones although I find 2 hours long enough purely because I am not used to having something in my ear and my ear gets a little itchy. Any thoughts?
 

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