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

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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?

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  • Posted

    I don't think people will ever understand the gravity of this condition. We're all weird psychology cases with some silly noises inside our heads, They will never value us correctly, we will never receive the respect we deserve for having to live our days with this horrible illness..

    Getting over this condition and being able to live your life is the hardest thing you'll ever do. My T is about most of the time unbearable for me.. But what else is there? Suicide is never the answer like you said. I'm not that type of guy. Never have been. It's about the association you make between the T and how you feel about it. Do something with your life you haven't done before. That way you can say to yourself later in life that even though you suffer from tinnitus it made you realize things and decided to better yourself. I know it sounds tough but I'm currently suffering from a major spike due to stress and loud noise exposure. I don't know if it will die down. But it's about accepting as it is. And try to keep your mind off of it. I keep hitting myself on the head for making it worse constantly. But deep inside I know that's illogical.

    Just so you know I feel your pain bro. But try to hang in there.. If I can do it you can do it too. Just wait it out. Relax as much as possible. But wait it out. It might get better or you might eventually habituate. Either way happiness can be found again!!

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  • Posted

    Thanks for your reply Jimmy, much appreciated. There is no way I'm going to give up or let this illness rule my life, and nor are you by the sounds of things - I admire your strength and thank you for your words of encouragement. We are the strong ones, but there are many who suffer from this condition who do not have that level of resilience. A friend of mine came close to suicide after developing severe T. Reading some of the posts on this site from T sufferers and seeing how distressed and upset it makes people gives serious cause for concern. Like you say, it seems that this is not a condition which is taken too seriously by many doctors in the NHS.

    Earlier today I submitted an initial e-petition to the government about the lack of a treatment on the NHS which is already available to those with the means to pay for it privately. As soon as it is reviewed and made official I will post the link on this forum. My plan is to start a Facebook campaign to raise awareness of this issue and gain a minimum of 100,000 signatures to force government action. Ambitious I know, but you have to start somewhere...

    To anybody reading this who is suffering from tinnitus, do not suffer alone - we are ordinary folk from all walks of life who have this condition through no fault of our own. It is normal to feel a sense of anger, despair and injustice - denial even; that this is something which happens to other people. There are millions of us out there and if we get together and demand resources are put into treating this debilitating condition something can be done.

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  • Posted

    Hi guys sorry to hear of your plight.I have suffered with t for over seven years and for the first year I thought I was going mad.I saw ENT and a hearing therapist and like you felt no one understood. I found keeping a diary very helpful'kept busy and learnt some relaxation techniques I used before sleep' gradually things improved and I habituated my t is still there but it no longer rules my life. Sending you positive thoughts and best wishes x

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  • Posted

    That's a great idea will add my name its frustrating when there are treatments available that can only be accessed by the few who can afford them.I guess I did my own version with what I had researched on line. I found it was mainly about control either it controlled you or visa versa I honestly never believed at the begining I would get my life back but now there are days I don't even think about it so take heart you will be okay
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  • Posted

    Hi Stevie.  my name is Allan and I too am having a bad time with Tinnitus right now. I have been doing some research into the Acoustic Neuromodulation therapy and have learnt that a trial has just been completed in  April at Notts University and results are awaited. I phoned the British Tinnitus Assoc this morning after a particularly bad night with my Tinnitus and they told me they are waiting for the trial results and then they will publish them on their website.

    I developed Tinnitis in 2005, when I was 42, following a throat infection but it was bearable and came and went and I never heard it when out on walks or out of the house. However, back in February I had to go on two courses of antibiotics for a kidney infection and 2 days into the 2nd course I got a high pitched, loud ringing which 6 weeks later has not lessened. This has now been joined by a lower pitch (also loud). Both are driving me mad and affecting my sleep and making me feel very low in spirits. I am now considering going fot the initial consultation at the British Tinnitis Clinic as the NHS don't do much (had scans in the past which were all clear so nothing further offered). This really is a terrible condition and I, like you, have been trying everything including radios on in every room and have downloaded some good natural sound apps from the Playstore on my tablet and have been going to sleep to the sound of a stream or waves, which does help. Birdsong helps too. The mornings sre the worst - I regularly awake st 3am feeling very anxious and have a constant fear the T is going to get even louder.

    We do need to raise awareness about this condition which the BTA informed me affects around ten percent of people.

    Lets hope the trial has been a success and will soon be offered on the NHS

    Regards

    Allan

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    • Posted

      Sounds like you've had a hell of a time Allan.

      Let's hope the neuromodulation treatment becomes more widely available soon, and the NHS begin to take tinnitus more seriously. As you know better than most, permanent tinnitus is so debilitating and can really disrupt people's lives. I've had to leave my teaching career due to the effects of tinnitus and am now looking for work for the first time in over 20 years.

      Good luck to you. Remember who you are and don't let it beat you.

      Steve

       

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    • Posted

      Hi Stevie,

      Sorry to hear you have had to leave your teaching career. That must have caused you quite a bit of stress,  which is not good for Tinnitus.  I can imagine it was difficult to carry on teaching when you are not getting much sleep. It must be a demanding job when you are not feeling well.  I work for myself  from home (landscape photography and picture framing) and am having to really work hard to motivate myself due to disrupted sleep. I have found that keeping busy does help to some extent as it takes my mind off the T. The worst times are in the night. I am investigating masking devices at the moment and will pass on any feedback to this forum.

      I have signed your petition as has my wife and she will share it on facebook.  So many people are battling with this awful condition and there is not enough awareness of how it can impact on daily life.  It is also strange how much it can vary from day to day and how if affects our nerves and confidence.  Do you find that your brain is constantly focussing in on  the noises no matter how hard you are trying to forget it.? Sometimes I manage to forget it when busy but it returns in moments of inactivity. I don't like silence anymore.

      Trying to keep positive. It's all you can do.

      Regards

      Allan

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    • Posted

      Hi Allan

      Silence is definitely not golden anymore for me either. Like you, silence now is very unwelcome as the brain cannot help but notice and focus on the hissing and whistling from within.

      Yes, working when you have hardly slept for several months is not the most fun thing to do. Stress worsens the T like you say, which in turn disrupts your sleep even more, which of course makes everyday life so much harder. I found I was becoming grouchy and impatient with everone, and had begun to develop a seriously negative view of life, which was very unlike how I was before the T. The tiredness developed into exhaustion in my case, and I knew it was time to see a doctor when I began to fall over in front of the pupils! Not that the NHS has actually done anything however... Not working for the last 3 months has helped hugely, but of course one cannot live forever on an empty bank account.

      Thanks for signing the petition and passing it on. It's heartening to hear stories from people such as yourself, who refuse to give up and find it in themselves to offer words of encouragement to others despite their own sufferings.

      Regards

      Steve

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  • Posted

    Hi, I believe a trial is underway by Nottingham University HNS Trust. This is the web address http://clinicaltrials.gov/show/NCT01541969

    It appears that the trial ended in February but the results haven't been published yet.

    Reading other details elsewhere, the trial may have been funded by interested parties but hopefully it was conducted properly. It seems that earlier trials showed the device was beneficial in many cases but it wasn't exactly clear why and so the latest trial was aiming to find out if the special sounds produced by the device are better than a placebo sound from the same device.

    Fingers crossed this treatment really does work and the NHS can offer it shortly but I guess as it's expensive and requires specialist skills to set up for each patient my guess is we may not be offered it on the NHS all that quickly.

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  • Posted

    Hi,

    I've had tinnitus for 18 months, and I too have come to a dead end with help for my tinnitus. Basically been told there is nothing can be done so deal with it! It's very frustrating to say the least. 

     I have signed your petition and tweeted it to many. I just want to thank you for trying to get fellow sufferers some help and recognition. 

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    • Posted

      Thanks for signing the petition and passing it on. I've just been discharged from hospital with a big smile and handshake from the consultant who couldn't wait to get me out of his room. I had repeatedly asked him what their diagnosis was, and which steps were to be taken next. He kept avoiding the question like a politician and refused to commit to any further investigations. If there is one thing T sufferers all have in common it's frustration with the apparent lack of care, understanding or commitment from the NHS, which is sad considering how many people are in need of urgent treatment.

      Good luck to you, let us keep hoping we can one day receive the same treatment as T patients receive privately.

      Steve

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  • Posted

    Hi Steve,

    I got basically the same treatment, only mine was more a 'pat on the head' rather than the handshake! You're left feeling..."So what do I do now?!"

    I've been on the BTA website and read up on the info with regards to the treatment, I would have signed myself up for clinical trials if I knew there were any. Oh well I'm keeping my chin up and staying positive, I'm not going to let it beat me!

    Good luck & best wishes

     

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