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Will Acoustic Coordinated Reset Neuromodulation be available on the NHS soon?

Posted , 26 users are following.

steviegreybeard
steviegreybeard

Hello, I am completely new to this site and this is the first time I have ever posted on a forum. About 5 months ago I awoke with severe tinnitus in my right ear. I had never suffered from tinnitus before. As I was also struggling with my balance, my GP thought it might be an acoustic neuroma, which is a benign brain tumour growing on the inner ear. MRI scans have shown this not to be the case, and doctors now think the balance problems and tinnitus were caused by prolonged emotional trauma - whatever; the tinnitus has remained constant 24/7 for 5 months now, and if anything is causing prolonged emotional trauma, then this is.

Speaking with the doctors (NHS), I have basically been informed that I will have to learn to live with it - I could not help but gain the impression that my tinnitus was not a condition which was a priority for them. After reading the British Tinnitus Association website, I came across a new treatment which is already available in the British Tinnitus Clinic in London, called Acoustic Coordinated Reset Neuromodulation. Hugely simplified, it works by targeted sound therapy aimed at disrupting abnormal nerve cell firing which may be responsible for the tinnitus. Early success rates for improving or eliminating the tinnitus are, according to the BTA, about 70%. Unfortunately the cost for this treatment is £4,500, something most people can't really afford.

When I asked the consultant neurologist about this treatment, and whether it would soon be available on the NHS, he looked at me blankly and said dismissively that he had never heard of it. This not only concerns me, but was something which at the time I found deeply upsetting, as he essentially confirmed that there would be no treatment options other than 'learning to live with it.'

Has anyone come across any NHS trials / know anything about this treatment option on the NHS? Although I'm not suicidal, the tinnitus has had a severely disruptive effect on my life, with lack of sleep being the number one issue, accompanied by frustration, anger and upset. To all my fellow tinnitus sufferers, you have my complete sympathy and understanding. Perhaps we could start a campaign to highlight awareness of this debilitating condition, and push for this new treatment to be made available on the NHS as a matter of urgency?

1 like, 44 replies

44 Replies

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  • karen12656
    karen12656 steviegreybeard

    Posted

    I'm very sorry that my dismal tale rather cuts across your specific campaign. But in principle I'm totally with you.

    Just out or interest (and in defence I suppose of the NHS, who do what they can) the GP here has just prescribed propranolol for the "fear" reaction which seems now to be to be the worst bit. I took it for the first time yesterday and felt almost normal. It doesn't however help with the icy extremities after a swim in the bay, my best regular therapy - I need to get a full wetsuit and gloves!

  • Coskun
    Coskun steviegreybeard

    Posted

    I whole heartedly agree and sympathise with you.Mine has been going on for nearly 20 odd years. And the pitch is on the increase. Today, is the worst. Last night, I just could not go to  sleep at all. Tonight, I am going to take a sleeping pill. I suffer bodily aches too often; I have been wondering because I never wake up never feeling completely refreshed most mornings, perhaps Fibromyalgia is linked with this lack of sleep also!! It is most debilitating and annoying to say the least!! Yes, it is very expensive to go private.And the NHS is after saving money.Surgeries will never touch it with a bargepole!! Some GPs and even consultants do not bother to dig in more  and be more entusiastic on our behalf....but they don`t. Maybe,  the young qualified ones might show some  more wim and interest.....!! A tricky question though!!

    Good luck. We both need it plenty!! I am a pensioner of 74 by the way!!

  • steven1111
    steven1111 steviegreybeard

    Posted

    Hi Folks

    I am at the early stages of my journey with T, but it has got worse recently. 

    Having been involved in clinical trials 16 years ago (not this area of interest) where our company were both the paymasters and the potential beneficiaries, I am truly sceptical about the benefits of such trials and their outcome data.  Only trials which are truly independant can be relied upon. Whilst it might be dispappointing that the Nottingham trial has collapsed we should be pleased that the robustness of the data was being challenged.

    I have signed the petition....

  • steven1111
    steven1111 steviegreybeard

    Posted

    Has anyone heard about or tried HushTinnitus custom sound tracks at £19.95.  They seem to be suggesting that this is a similar approach to AC therapy.  Or is another quack idea?
  • steveh1
    steveh1 steviegreybeard

    Posted

    To those interested the trial results have sort of been published, the BTA made a request for the end of study report.  See the BTA site here http://www.tinnitus.org.uk/RESET2

    The End of Study Report did not report a significant difference in the primary outcome measure (global Tinnitus Handicap Questionnaire scores) between the treatment group and the placebo group.

  • Coskun
    Coskun steviegreybeard

    Posted

    Yes, I have also come across that information. It is £4.500...which is beyond me. As far as the NHS doctors are concerned, most of them are oblivious towards new developments. They lack individual curiosity...they do not try to delve into things on behalf of their patients. Maybe the younger ones might show some  interest but do not expect from the old and the established ones who are long in the teeth!!

    I have a masking white noise maker which I shove into my ear when the tinnitus starts really screaming  at my brain. Sometimes, it is so bad that I take a sleeping pill to be able to sleep..!! I whole heartly support you on this. Take care friend.!!

  • Venryx
    Venryx steviegreybeard

    Posted

    There's a free webpage that attempts to implement the Acoustic Coordinated Reset Neuromodulation Tinnitus Protocol

    It's definitely worth trying out. For me it reduces the intensity of my tinnitus to about half--it's helpful when you're working on the computer for long stretches especially.

    Not sure if headphones are required, but that's what I've been doing so far.

    Emis Moderator comment: I have removed the link as it was to a site unsuitable for inclusion in the forums. If users want this information please use the Private Message service to request the details.

    http://patient.uservoice.com/knowledgebase/articles/398316-adding-links-to-posts

    http://patient.uservoice.com/knowledgebase/articles/398331-private-messages

    • inf3rno
      inf3rno Venryx

      Posted

      Hi Venryx! I've found the repo, nice stuff, it seems like reducing my T while it is running. What are the experiences on long run? Do you know somebody who have used it for months?
  • jo06014
    jo06014 steviegreybeard

    Posted

    Hi, I read your article and had total sympathy. I have not had my tinnitus checked out for a few years now, and stumbled across Acoustic Coordinated Reset Neuromodulation by chance when searching for something unrelated online. On the 2 or 3 ocassions I have had my tinnitus checked in the past, I have been told exactly the same as you, that I have to live with it, and the gauge for how bad it is is to answer the question 'am I suicidal'?!!

    Im very tempted by the Acoustic Coordinated Reset Neuromodulation, but the costs are prohibitive, and I would be concerned about a new form of treatment for which only 100 people took place in the trial (for which the results are not published) and for which only 2000 people have actually received the treatement, despite a 70% success rate of the treatment having some sort of positive affect.

    But nice to have stumbled across a fellow sufferer and good to have the opportunity to say hello :-)

  • katharine68657
    katharine68657 steviegreybeard

    Posted

    Hi Steve just seen this old post-how are things with you now? any improvment or had any other treatments-going through a similar thing any advice re treatments
  • Harley883
    Harley883 steviegreybeard

    Posted

    Hello steviegreybeard i've suffered from tinnitus since 2013 i think this may be availible soon  ( i hope) i've read a lot about this treatment on the net it was developed from research done by a peter tass in germany i've read nothing categorically stating that it will be available but reading between the lines i believe it will be soon i 'm sure i read something that said it was imminent but unfortunately i 've forgotten where I read it !sorry i can't be more positive and definitive.I want to be rid of it too.It is a blight on my life. Nottingham uni is doing a lot of research in this field.Look  on the 'hindawi bio med research ' website under acoustic neuromodulation reset good luck vic

  • katharine68657
    katharine68657 steviegreybeard

    Posted

    Hi  The Tinnitus clinic do this, its a private clinic BUT they can test your hearing

    and see if you are suitable for the treatment, you are not obliged to buy there hearing aids,i belive it would be £250 for this.I bought there hearing aids with a device to try and help the tinnitus(this can take months) but they were not for me(I was not suitable for this treatment you mention).They gave me my money back no problem on the return of the aids,butI had to pay another £250.They have a few consultants who go to a few main citys a couple of days a week, they are based in Harley Street,look on the web.If you are not deaf(I went deaf overnight in one ear which left me with really bad tinnitus in both ears, my HZ are very different in each ear 8000 in one 200) i think they may still be able to help you.The NHS dont do this as it would be too costly, one NHS chap told me maybe in 5/10 years.

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