Acoustic CR® Neuromodulation: a New Treatment for Tinnitus

Markku - is the Question Mark avatar a good idea, I thought Carlover was David C just then!

 

Hi Louise ,Mark at the T clinic said my T was ok for treatment ,so even though a jet engine which was the way I described it ,he said fine so........

 

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'!!

 

How did you pitch match a jet engine Pete?!!

 

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.

 

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.

 

So true!!

 

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.

 

xx

 

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.

 

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.

 

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.

 

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

 

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

 

Has there been any negative affects if people using this device?

 

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.

Acoustic Neuromodulation tones - actual or placebo

This could be a placebo group tone but it is in line with the description of the treatment.

 

Good to hear you are taking part in the trial Steve - please keep us informed about your experiences - always good to get feedback on different treatments.

 

Hi Steve,
Do you have any idea how long the trial is due to last, and when the results might be published?

Many Thanks!

 

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.

 

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

 

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.

 

Wow!! I will do this Steve this weekend. Tired now from a long trip to do a T trial that I am on.

 

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

 

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

 

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.

 

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?