Acoustic CR® Neuromodulation: a New Treatment for Tinnitus

@Louise It's probably not worth trying it yet, after looking around (as Erik says) I can't seem to find any positive experiences - apart from the advert on the website. I stopped it a few weeks ago as it felt like it was making me worse, they said that that it was probably just in need of calibration. After the calibration it got worse again, as I said in the posts above.

I think that one of the problems with these sound devices is that they don't think about how they actually sound, they use scientific principles but forget that the brain doesn't want to hear jarring, unpleasant sounds. It's not very therapeutic to hear un-tuned electronic noise for hours at a time. One of the problems in those of us seeking treatment is that we struggle to focus away from the tinnitus, so putting another bad sound on top of it isn't good.

I'm really interested in the results now, the trick is in how they represent them. Will they highlight people getting better when in fact they only ended up where they started after initially getting worse? How will they represent drop-outs, will they acknowledge the reasons for dropping out, or just discount them from the statistics?

 

It's been good to get feedback from people on these trials. It's reinforced my own doubts about this therapy - certainly I can't see that's it worth spending around £5000 for something which some people either felt had no effect or actually made things worse. I use a sound machine at night and have some above-the-ear white noise generators which I wear sometimes if the tinnitus is intense. I think I'd prefer to stick with that. I'm wary of using headphones and mp3 players as I think that they can adversely affect hearing and tinnitus.

 

I think that cure of T with listening some sounds is impossible idea... They want just to take money of desperate people...
My opinion of course...

 

Hi
I have been suffering from tinnitus for a long time now, I believe since I was a young child but it was always bearable. Recently after experiencing some panic attacks and extreme anxiety due to emotional stress (separation) my Tinnitus has got a lot worse. I basically had a nervous breakdown which ruined me for several months and I'm still not 100%. In regard to my T, I have a high pitched hum in my left ear which is now causing me sleep issues. I came across this supposed wonder treatment and booked myself in for an appointment at the Tinnitus Clinic in Harley Street, the appointment was due on Saturday but I was contacted today and it was cancelled until next week. I was due to see an ENT consultant and then an audiologist. In parallel to this my GP referred me to an NHS ENT consultant after I complained about a full feeling in my ears and a weird detached feeling with a kind of dizziness when running, more disorientated than dizzy but its hard to describe as nothing spins. I decided I couldn't wait to see an NHS specialist and contacted the TC with a view to getting my inner ear checked out and possibly looking at this new treatment.
From reading this thread it seems that the UK trials are still running, the lady I spoke to said that they had an 80% success rate in trials so I assume that was the trials in Germany? Can someone le t me know when the UK trials are scheduled to finish. I was also told that there is a money back guarantee, has anyone paid for this treatment yet and got their money back?
Any other comments on the TC in Harley Street would be greatly appreciated as spending £250 on an appointment that could potentially be a waste of money doesn't make me happy! I also have travelling costs. I'm also making the assumption that the ENT consultant I see will be able to give me the same treatment that the NHS would in regard to checking me out for potential ear issues, is that a correct assumption?

Many thanks for any help
Richard

 

As Markku says that is a very high success rate they are telling you and I have no idea where it's come from. Bear in mind the refund is for the device, I believe that you still have to pay the consultancy fees.

If you feel you need help fast and can afford the fees you should get better quality of care at the clinic (or any other specialist audiologist who understands tinnitus). The NHS is a lottery, from the experiences of the majority you have little chance of getting a consultant with good, or any, tinnitus knowledge. They'll do the standard tests though. Is there no specialist clinic or consultant closer to you?

The trials are scheduled for completion in November this year, it could be a while before they are published. Given the experience I've had and what I've read from others it will be interesting to see the results. And also interesting to see how they interpret their findings.

 

Hi Rich,

I'm based in the UK, haven't had direct experience of the Tinnitus clinic but have had the whole experience of waiting for ENT on the NHS for symptoms quite similar to yours so I can sympathise.

My advice is be wary of the tinnitus clinic -they are going to be looking to push their own sound therapy system - which as you'll see on here has had mixed reviews (to put it at the most positive) and is very expensive. I don't know what you'll get for that £250 but before paying it, it's definitely worth finding out.

In terms of private providers in the UK if you don't want to wait out for your NHS appointment (and I wouldn't cancel it as it's good to have a back-up) my advice is really to shop around - find out what clinicians are available in your local area, what their experience is, what you'll get for one appointment and of course what they charge. To be honest there's a limit to what they can find out without an MRI scan which they usually order to rule out tumours (very unlikely). Meniere's is a possibility, but I think it's pretty difficult to diagnose. I waited around for NHS ENT and audiology and insisted on getting some white noise generators - not that much use but they do distract a bit from it.

 

@Markku - Thanks for the information, I didn't see that on their website.
@Steve - Thanks for your input. I see you were on the trial, did you stop completely or are you still hanging in there? I dont think I could cope with my T getting worse or experience any of the issues you did. I am not too far from London where I am staying at the moment its a 40 minute train journey so it is the nearest T Clinic that I'm aware of.
@david c - Thanks and I had thought of meniere's but the symtoms aren't quite the same from what I have read but I guess they differ with each person to a certain degree.
Thanks
Rich

 

Rich are you sure you are going to see an ENT there? I went and paid just under £200 to see their audiologist ,so £50 for a private ENT ?Plus what if he wants further tests like they all do how much will that cost you? doesnt add up to me. If you decide to take up their guarantee after 8 weeks you lose £2000.

Didnt work for me by the way. But I would make sure you ask to see there head audiolgist Mark ,I dont rate the others there.

As for your actual symptoms ,all I ask is do not hold up any hopes that ENT will do anything for you because if you do you will be mightily dissapointed.Tough I know but that is the reality. They have two treatment protocols ,serc for meniers ,waste of time or a steroid nasal spray...oh 3 actually anti depressants...cynical? you betcha!!!

 

Have to agree, don't hang your hopes on ANYTHING & the 3 things you've listed (Carlover) are spot on! One thing I would say though, NHS ENT varies SO much, depending on where you live. I was living the Dorset area for 4 years (moved back to Bristol a year ago) & I had a brilliant tinnitus therapist at Dorchester hospital - she absolutely kept me sane. Obviously she had no miracle cure but she DID have tinnitus herself so she knew what she was talking about & when I got periods of my T.being really bad, I knew I could go & see her (she would always fit me in) & she helped me through, I know that had it not been for her I wouldn't cope as well as I do now (most of the time) & I would probably be on anti-depressants. Back in Bristol - the care T.is rubbish & when I last went I felt I knew immeasurably more about T.than the so-called 'specialist'. So it is very random, but there are a few good hearing therapists out there.

As for the ANM - still wearing it, still no progress :-(

Debs

 

Bottomline, I think the 80% success rate paints a much brighter picture than reality. The 80% number leaves one (particularly the unitiated) with the image that 80% of people who undergo the therapy find themselves completely free of tinnitus at the end. That clearly is not the case.

The high success rates quoted by all the neuromodulation therapies is the result of a less then objective way of measuring success. When I looked into the Neuromonics Oasis device I asked about the success rate and what was deemed success. The answer was that treatment was deemed successful if the patient's score on the the Tinnitus Handicap Inventory was 40% lower at the end of therapy compared to at the beginning. The THI is basically a questionaire that supposedly measures your perception of how much tinnitus is effecting your sense of well-being. You fill out the questionaire when you start and at various times during the therapy. It includes questions like "Does your tinnitus make concentration difficult?, "Does it make you angry, confused, desparate, etc?", "Does it interfere with your ability to enjoy social activitites?" So the 80% success rate means that 80% of patients perceive that their negative reactions to their T have reduced by 40% over the course of the therapy.

Since most people's negative raction to their T decreases within the first 6-24 months after onset regardless of what they do, I think the 80% success rate takes credit for improvement that many patients would automatically achieve over time even without the therapy. Further, since the tinnitus handicap inventory is a measure of the patient's perception rather than any objective measure (I recognize there is no truly objective way to measure T), it is difficult to separate out all the things that can effect one's perception. Just being treated with kindness and care can remove a lot of the negativity associated with T and improve one's perception of the issue.

Having said all that, I think there is certainly some validity to the theory behind neuromodulation, and I do believe that people can get some benefit from the treatment. I suspect, however, that in the long run the benefit is marginal for most people. It becomes a matter of how much money and time you want to invest for an uncertain benefit. I'm certain that the quoted 80% success rate paints an overly optimistic picture.

 

Hi everyone

just signed up to this forum, I have had tinnitus now for about 9 years and over time it has got increasingly worse. It is at a point now that I am aware of it ringing for 90% of the day. I constantly find myself checking to see if it changes at all by closing of my ears by pushing the little bit of flesh closed against my ear and listening to it ringing away.

I used the treatment from sound therapy international for about 5-6 weeks, at first it did seem to make the ringing at little more subtle, so I carried on with it and on two separate occasions I heard the ringing sort of shift in my left ear... so i stopped using it. On there website they do say that it does get worse before it gets better but it is bad enough now so I have stopped using it. What a waste of £500 that was.

I am due on Wednesday 19th june to see the Birmingham based tinnitus clinic to see if I am suitable for the cr neuromodulation device, but after reading all of the posts on here about so may people having bad experiences with it I dont know what to do now.

The only time i have ever had relief is when I came across the audionotch website and tried to match my tinnitus and match it to around 5400khz, i played it through my computer for roughly 15-20 seconds and my tinnitus seemed to have completely stopped for about 2 minutes then it came back again. It was the best 2 minutes in my life literally.

just thought I would post my experiences with all you peeps on here.

 

Hi Matthew,

I haven't used the Neuromodulation device myself so can't comment on it personally, but you'll have seen the negative response to it on here so caution is advised, especially before parting with large sums of money. Have a look at the do-it-yourself guide also where some helpful people have placed short sound samples. Playing them I have the same response as you mention with the audionotch - it interrupts the tinnitus sound for a minute or two but then it goes back to normal.

 

Hi matthew,you were gutted at losing £500 imagine blowing £4500 I beat you cause I blew £4500 and bought the 3 levels of sound therapy int and persevered for a whole 12 months. ...and that was around £1200. If I have a go at something I give it my all ,cranial osteopathy for the last 5 months once or twice a week ,no change ...and no change left in my backpocket. The amount of money I have spent over the years is frightening...but my T is also getting a bit frightening,

 

It scares the hell out of me most of of the time, im constantly worried how bad it can aactually get before I cant work or do anything with my life. Im hopeful that in the next 5 years or so scientists will stumble across something that can put a stop to the constant noise for every one. That being said I do not believe that sound therapy is really the right direction to take, I believe a drug compound will be the cure one day.

 

Hi Matthew, I have had the same fears as you over the years. I managed to change jobs in my industry to be in an office and away from noisy environments, I constantly feared what damage I may be doing to myself and what I would do if it got worse. Unfortunately, with tinnitus, that can become a self fulfilling prophecy. You spend all of your time listening to it and trying to work out if it's worse, louder, extra frequencies and so on. Ultimately you just make yourself more distressed, more aware and deepen the negative attachment to it. I also used to put my fingers in my ears to see if I could hear it.

I think that audio therapy can be really helpful, the key (like most things) is finding what works for you. You know what you like to hear and you know what makes your ears better or worse after listening. It's all a measure of your perception. I agree that a cure isn't likely to be in audio therapy, but it can be a useful aid to improve your quality of life. The thing is that the huge amounts that these companies charge seems way out of proportion with the benefit received, ANM and others could easily be delivered with relatively cheap applications / programs with clinical support as needed.

I haven't got round to working out the formula properly yet (been too busy recently), but when I do I can create a neuromodulation sequence for you on the do it yourself thread so you can try it out.

 

Hi steve that sounds great that you are trying to figure out the sound therapy that is used for the neuromodulation. I do agree that the treatment is way too expensive, the components that are inside wont exactaly be cutting edge and I bet anyone with some electrical know how could make the exact same device for less than £100 for all the components. I know they say that it uses a "special" mathmatical algorithm to help sequence the tones in your ear.... but really I dont think its that sophisticated that it should cost £4500.

I to changed my job to work in an office as I was always wearing ear plugs in noisey work places so I was awear of my t most of the time.

I do believe that some drug one day will help calm the over active firing of the neurons that cause tinnitus. The have come up with pain killers to help bloke pain receptors in the brain so I think it could be possible to do the same with t

 

Study Shows Return of Normal Neurone Pattern Following Acoustic CR® Neuromodulation Tinnitus Treatment
http://ca.finance.yahoo.com/news/study-shows-return-normal-neurone-115700578.html

Impact of acoustic coordinated reset neuromodulation on effective connectivity in a neural network of phantom sound.

 

This sounds very interesting... as I have read many people on this forum say they have had negative responses to this treatment. I have an appoint this wednesday for an evaluation, I think I my just give it a go as I could be one of the 1 in 7.

 

*appointment. *may

 

Keep us posted! It would be wonderful to have a success story on this technology!

 

I hope that maybe in a year there will be more "real people" evidence (not official website testimonials) that ACRM works.

 

After my appointment with the T clinic in birmingham he as recommend that I use the TRT treament package as I explained my experiences with having T and he said it seems like I have a very strong emotional attachment with my T, which I really have. I am constanley aware of every sound around me and I am always assessing if my T gets any worse, plus I have a habit of constantly listening out for it. I am also quite sensitive to sound, I should have a threshold of 100db apparently but im at 80db.

So the audiologist recommended I use the TRT which involves using a hearing aid like device but with out the amplification, it is just for sound enrichment to apparently help bring my sensetivity to back to normal levels.

Hope this helps me...... any thoughts people

 

Has anybody tried the acoustic C.R neuromodulation treatment at the Tinnitus Clinic? £5000 its a lot of money, but does it work!

 

Piper, if from your introduction post, your tinnitus comes from a begnine tumor, then ACRM will not work for you.

 

I just finished the first 3 months of the trial. I was in the treatment group, didn't work for me, it's actually made me a lot worse. I've lost the habituation I had and gained back some hyperacusis, I had a real fullness in my ears too and my tinnitus was broader frequency and louder after every use. It just wasn't for me I guess. I'm gradually getting better again after stopping use of it about 4 weeks ago.

 

Is it white noise generators they have given you? We'll be posting some free masking downloads on TT soon, probably 1 minute long files that you can loop on an Mp3 player and just cycle between as you want, it's important to find the sound that feels the most comfortable to you and works most efficiently as a masker, also need to match up earphones that are the most comfortable. Or you can play on a stereo - we're all different so have our own preferred way of listening.

 

i think audionotch is the most reliable the others are just snakeoils

 

Hi,

This is my first post to the forum, got tinnitus recently and went to the Harbour Hospital in Pool to be assessed by an ENT surgeon. That was a cruel experience, before I had even sat down he said "so, these sounds you are hearing, you're going to hear them for the rest of your life." How does he know that? Does he own a crystal ball? It was awful. He just went on and on about the severity of tinnitus and how incurable it is etc. He didn't ask many questions on to find the cause of my T but just hammered in that it was incurable. After all that depressing trash talk he asked me to take an hearing test in the other office, this showed that I had quite normal results in that department. He didn't say I had any severe hearing loss or anything and he believed it to be normal.

By the way, when I asked him if stress related or/and mental trauma caused T was easier to get rid of than physical ear damage T he just shook his head. I went out the door more depressed than when I came in. I'm not expecting ENT surgeons to give me false hope but that guy was SO negative that I just wanted to kill myself the whole next week. I just can't believe how negative he was without even asking me any questions to find out the possible causes.