The Tinnitus Clinic — UK

Discussion in 'Support' started by SteveToHeal, Dec 3, 2014.

tinnitus forum
    1. SteveToHeal
      Insomnious

      SteveToHeal Member

      Location:
      Unknown
      Tinnitus Since:
      10/2013
      Cause of Tinnitus:
      Acoustic trauma
      Hi guys,

      Just received this email from the tinnitus clinic today.


      "Dear Reader,

      Welcome to the December edition of Tune In which features our new, unique therapy programme, Take Control™ combining three proven therapeutic options for tonal tinnitus.

      Our Tinnitus Desensitisation Therapy™ (TDT) treatment continues to give significant benefits to our patients. As Diana Willis from Gloucestershire says about her TDT tinnitus treatment "Now there are occasions where I am not aware of the tinnitus, if I’m talking to somebody I have forgotten about it, it’s gone out of my head."

      There is a report on a 66 patient study of the efficacy of Acoustic CR® Neuromodulation, recently presented at the British Academy of Audiology Conference.

      And we’re really proud to have sponsored our Cheltenham Consultant, Mr Matthew Clark's trip to a surgical ear camp in Nepal. It’s wonderful that the team managed to do so much good for people living in such a remote part of the world."



      Just wanted to get peoples thoughts on the tinnitus clinic in general. If people have been? Especially interested in the TDT, although pricey. I mean can you rather get that info for free on the net?

      I've asked other ppl on TT about ACRN. Their opinion is it did not work for them and def not worth the price tag for a maybe or make it worse.

      Anyway, maybe just a thread about the tinnitus clinic in general. Any good feedback? Worth it in any way? I guess i'm just being hopeful when i read stats like 66 patient study of the efficacy of Acoustic CR® Neuromodulation...

      I heard that the study was a bust because of bad data. So what gives here? Does it work or not?

      Thoughts?
       
    2. kenny
      English

      kenny Member

      Location:
      london uk
      Tinnitus Since:
      10/2013
      I went there a year ago, when I was really at rock bottom, wanted to try there acoustic Neuromodulation treatment, i think the price quickly brought me to my senses:nailbiting:, offered me there TRT treatment instead, but again declined, very nice people there, and very understanding, but like most clinics in that street and area are well out of my price range, greatly overpriced to the extent of being greedy
       
    3. SteveToHeal
      Insomnious

      SteveToHeal Member

      Location:
      Unknown
      Tinnitus Since:
      10/2013
      Cause of Tinnitus:
      Acoustic trauma
      Thanks Kenny - i think that about seals the deal for me then. Nothing I am going to pursue as also way out of my price range.
       
    4. longframbri

      longframbri Member

      Tinnitus Since:
      11/1974
      I have recently joined the forum, so apologise if someone has asked about this before.

      I have recently heard about The Tinnitus Clinic in the UK (Harley St based outfit) offering a number of treatments based on the outcomes of a detailed 90min initial assessment, including tympanometry; pure tone audiometry (PTA) and uncomfortable loudness level testing (ULL) - the latter for hyperacusis I believe. The subsequent treatments range from Tinnitus Desensitisation Therapy to their Accoustic Coordinated Reset Neuromodulation. The latter has apparently been developed at the Julich Research Centre in Germany and involves a "device" tuned to your tinnitus that retrains your hearing/brain over time to significantly reduce the level of your tinnitus if not pretty much remove it. From what I can ascertain, The Tinnitus Clinic appears to be a genuine organisation with impeccable credentials, but with associated hefty price tags for its assessment and treatments.

      I would be interested to know if any of the forum participants out there have had any experience of this organisation and its therapies and would either recommend or caution against using them??
       
    5. Inge
      Cool

      Inge Member

      Location:
      california
      Tinnitus Since:
      11/2014
      Cause of Tinnitus:
      benzodiazepine withdrawal
      I went to this clinic March 5th. Got the desensitising treatment which are hearing aids specifically programmed with static sound to mask the tinnitus and treat it. Very professional outfit. Paid $6000 for the package. My tinnitus has decreased by 60% since then, but I am also experimenting with meds. The hearing aids help me become less aware of the tinnitus, which in turn reduces my anxiety about it. They dont promise a cure, but a significant reduction in the perceived volume and intrusiveness. No magic bullet but for me brought much needed relief.
       
    6. noisebox
      Loved

      noisebox Member

      Location:
      Yorkshire, UK
      Tinnitus Since:
      04/2012
      Cause of Tinnitus:
      West End show. Came back 2015 vitamin D overdose prescribed
      I went to Manchester in desperation after a big relapse. Chose TDT. I used the sound gens for a total of 16 hours, made T quieter but so ultra high pitch I got scared. I sent them back, got a full refund. My T still is not back to baseline, I really hate the high pitch but its over 7 weeks and still not back to old sound.
       
    7. carlover
      English

      carlover Member Benefactor

      Location:
      London
      Tinnitus Since:
      1986
      Hi all ,

      well my Tand ear pain/pressure is driving me nuts ,ive done it got the T shirt and emptied my wallet time and time again trying to find a cure

      Anyway had another look at this place http://thetinnitusclinic.co.uk/?field=GAW&gclid=CKHLs82C7skCFQTjGwodR_UMRw

      They were the clinic that marketed the acrneuromodulation which I paid for did for a year and got no results.

      However they were extremely well meaning people Mark Williams the head audio who I dealt with I have a lot of time for.

      They talk about special siemens hearing aids which look interesting I have NHS hearing aids and are not masking the T as much as they used to.) no masker in them just when in T eases off a bit

      This will all be a lot of money again so do I contact them or do I just live a life I dont want ,as I said here we go again
      Good luck ,all Pete
       
      • Informative Informative x 1
    8. wishingluck
      No Mood

      wishingluck Member Benefactor

      Tinnitus Since:
      2015
      Cause of Tinnitus:
      not sure, but probably acoustic trauma
      I really don't understand all that greed, but there you go. These companies are there to make a lot of money, they probably set this stuff up for people like Tom Cruise or Madonna
       
    9. Michael Leigh

      Michael Leigh Member Benefactor

      Location:
      Brighton, UK
      Tinnitus Since:
      April /1996
      Agree with you Kenny. I know two people that went to that clinic and the treatment didn't help in the slightest. When one of them complained they were quickly shown the door and all the niceness had evaporated....
       
      • Winner Winner x 1
    10. carlover
      English

      carlover Member Benefactor

      Location:
      London
      Tinnitus Since:
      1986
      well I would have to come back on that and say I got a £1500 refund .......just saying ,still £4500 lost though
       
      • Winner Winner x 1
    11. Atlantis

      Atlantis Member

      Tinnitus Since:
      02/2014
      "The Tinnitus Clinic - Placebo for you at £4500, thanks for your monies"
       
    12. Louise77

      Louise77 Member

      Location:
      Scotland, UK
      Tinnitus Since:
      10/11/2015
      Cause of Tinnitus:
      Loud headphones? Don't know....
      I have, after waiting nearly 3 months for an NHS appointment (more on that later!) seen a specialist at the Tinnitus Clinic. To my disappointment, I did not see and ENT even briefly, it was an audiologist who performed some test and discussed the results with me. I had a hearing test, but only up to 8Khz which was also disappointing to me as I had hoped that it would pinpoint some problems at the higher frequencies. Unfortunately, the hearing test was not even conducted in a sound proof room and I could hear the noise of traffic outside and people talking in the corridor!
      I also had a test where the pressure in the ear is checked.
      There was also an attempt at pitch matching but the sounds used to do this were not 'pure' tones and more like white noise so it was pretty impossible to get a decent match. I already know from my own testing on various websites that my main tone is about 3200Hz. The audiologist said my hearing is fine with a tiny dip at 1000Hz which does not really agree with my own findings. He said a hearing aid would not work for my tinnitus.

      (I've had it for over 3 months now, probably from headphone usage over the years a few times a week while exercising). It cam on suddenly one night and has not left since, in left ear only although my perception sometimes changes to the middle of my head.
      I filled out a Tinnitus questionnaire where you put answers to questions about how tinnitus affects you, I scored about 45 out of 100 which he said was average.
      Anyway, he explained about ACRN treatment, costs £5ooo and may not work and in fact may make tinnitus worse! I asked about TRT but he glossed over it very quickly and I didn't get any real information about it.
      The upshot is that he will call me in 1 month to see what I want to do.

      I'm masking at night with a sound generator, some nights are better than others but some are still terrible and nothing seems to help, these are the times when I get most panicky and fear for my future/ rest of my life coping with this.
      I'm using the Sleep-phones and occasionally a pillow speaker.

      NOW....the NHS letter came through the day of my private Tinnitus Clinic appointment ! Would you believe it! Anyway, to my horror, despite my GP saying it was for an URGENT ENT referral, all this time it was only for a visit to an audiology department at my local hospital!! So I have been waiting 3 months for an non-existent appointment, and all this time I have not seen one doctor (apart from initial GP visit)! And will STILL not have seen and ENT when this extra hearing test is done. I phoned the local audiology unit and explained that my GP had told me I was to see an ENT but they said at no point was my referral EVER for an ENT. She said that if the audiologist feels it necessary then they can refer to an ENT but then I may be waiting more months for an appointment. I actually feel its pointless seeing them because I know from the private audiologist that my hearing is 'fine'.
      My own research shows that GPs should refer DIRECT to an ENT of tinnitus is ONE SIDED and accompanied by some dizziness (which mine can be) to rule out and acoustic tumour by MRI scan. So I'm not sure why I was not referred as discussed at my first GP appointment, and I'm so upset that all this time has been wasted. Perhaps if I had seen an ENT sooner something could have been done before the tinnitus made its way into my head.

      Sorry for the rant, this is just getting me so down, I know some of you have it so much worse but I am having trouble accepting this may be forever.

      Any thoughts? Currently I'm taking a bunch of supplements including NAC, Zinc, Magnesium, CQ10, L-Tryptophan, L-Glutamine, Lipoflavanoids, B12, Vinpocetine, Picamillon, Piracetam, Grapeseed extract, Iron, and a general multi vitamin. Also trying Camomile tea at nights, and avoiding caffeine and salt as much as possible.

      Thanks for listening.
      L.
       
    13. attheedgeofscience
      Uninvolved

      attheedgeofscience Member Hall of Fame

      Location:
      Denmark
      Tinnitus Since:
      Childhood
      Cause of Tinnitus:
      Head Injury
      Back in November I wrote a post to you:

      https://www.tinnitustalk.com/threads/new-and-scared-and-desperate.12139/#post-149621

      Esketamine is currently the only known drug at the clinical trial stage which may have the ability to treat tinnitus in the acute phase. That is why - back then - I made you aware of that possibility while the "window of opportunity" was still there. Why this type of drug - NMDA receptor antagonists - work in the acute phase is something I have accounted for in this post:

      https://www.tinnitustalk.com/thread...-in-2015-for-tinnitus.9017/page-6#post-160503

      If you had signed up with the trial (perhaps you did?), you would not only have had a shot at getting your tinnitus treated to some degree, but you would also automatically have been offered all the screening you mention in your post for free (and much sooner!).

      www.tinnitus-study.info

      attheedgeofscience
      02/FEB/2016.
       
    14. Louise77

      Louise77 Member

      Location:
      Scotland, UK
      Tinnitus Since:
      10/11/2015
      Cause of Tinnitus:
      Loud headphones? Don't know....
      It was my understanding from the criteria set out in the trails, that the noise trauma had to be a sudden one ie a sudden huge noise or one occasion of trauma eg loud concert etc that caused the tinnitus, not repeated exposure to noise over months or years, is this not correct? Apologies for my misunderstanding if this is not right but I thought I would be automatically rejected because the trauma was caused (I think) by years of headphone usage.
      L.
       
    15. dboy
      Jaded

      dboy Member Benefactor

      Location:
      UK
      Tinnitus Since:
      1/2007 & 8/2013
      Hi @Louise77, sorry to hear you are having these problems. The NHS is basically rubbish for these kinds of issues, unfortunately. If it helps, I got an appointment with an ENT & audiologist through pretty quickly (2 days) when I admitted to my GP that I was having suicidal feelings after my tinnitus got a lot worse. To be honest, the ENT is unlikely to help much, although if you are keen to rule out the acoustic tumour that might be worth pressing for.

      One thing that may be worth trying is to talk to PALS (Patient Advise and Liaison Service). If you make a complaint that might galvanise them a bit, or PALS may just be able to give you some info about the best way to press for something more to happen.

      http://www.nhs.uk/chq/pages/1082.aspx?CategoryID=68

      http://nhscomplaintsadvocacy.org/what-is-nhs-complaints-advocacy/find-out-more-about-pals/

      Regarding ACRN, I would definitely not pay for it as there is a free version available. It might help that you are confident in identifying your frequency. If it makes your tinnitus worse then this should only be temporary. Just stop and give it time to go down again. Although, it can apparently get a little worse before starting to get better. So maybe give it a few days before making a decision to stop - if you are coping OK, that is. It is best to do a lot of reading before you try it, so that you are following the best protocol (4-6hrs a day, volume so that you can only just hear it, etc.).

      https://www.tinnitustalk.com/threads/acoustic-cr®-neuromodulation-do-it-yourself-guide.1469/
       
    16. attheedgeofscience
      Uninvolved

      attheedgeofscience Member Hall of Fame

      Location:
      Denmark
      Tinnitus Since:
      Childhood
      Cause of Tinnitus:
      Head Injury
      I would still consider the option i.e. there must have been some kind of triggering event that you could associate with the tinnitus onset (e.g. fullness in the ears). If so (and regardless), I would sign up with the trial and find out if you qualify (i.e. let the doctors determine if you fit the inclusion criteria or not).

      I believe the trial accepts patients up to six months (in some regions).
       
    17. Tim Hogan
      Suicidal

      Tim Hogan Member

      Location:
      UK, England
      Tinnitus Since:
      June 2016
      Cause of Tinnitus:
      Cold/Flu (Minor) >>> Botched Acoustic Reflex Test (Severe)
      I was wondering if anyone here has been to "The Tinnitus Clinic" in the UK, to my knowledge its the only place in the world that does more than therapy.

      Im considering going if my Spike turns permanent as its incredibly intrusive

      Their main treatment is

      Acoustic CR® Neuromodulation

      Has anyone been here? and if have, did you get results?

      http://thetinnitusclinic.co.uk/tinnitus-treatment/
       
      • Optimistic Optimistic x 1

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