Potential Treatment for Hyperacusis — Looks Very Good...

Discussion in 'Support' started by Zimichael, Dec 3, 2015.

    1. lymebite
      Surrender

      lymebite Member Benefactor

      Location:
      United States
      Tinnitus Since:
      2013
      Cause of Tinnitus:
      Unknown
      A short blurb in the December 2016 Silverstein Institute email newsletter:

      Hyperacusis Research Study

      Dr. Silverstein recently presented the results of 14 patients who had minimally invasive surgery for Hyperacusis (noise sensitivity) at the Glasscock National Meeting in Nashville. Eleven of the patients had a reduction in Hyperacusis symptoms. Two of the patients had exquisitely sensitive hearing that was not helped. A multi-center study is being organized to evaluate round and oval window reinforcement as a treatment for severe Hyperacusis. For more information on this Hyperacusis study, email hpatel@earsinus.com.
       
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    2. japongus

      japongus Member

      Tinnitus Since:
      1998
      HPatel may have interesting info to share. He's the one who answered a question I had some time ago but I haven't had the energy to ask him further or to insist to him to make better evaluations of his ''hyperacusis'' patients.
       
    3. lapidus

      lapidus Member

      Location:
      Sweden
      Tinnitus Since:
      1999
      Cause of Tinnitus:
      Noise induced
      14 patients? There were just 9 in study. 11 got better, 2 didnt have any effect but what happened to the last one? Ok, a multi-center study sounds good since it will hopefully be on a lot more patients, altough I guess it will only take place in one more location, the one in California.
       
    4. Mithrandir
      Ape-like

      Mithrandir Member

      Tinnitus Since:
      10/2015
      Cause of Tinnitus:
      Acoustic Shock Disorder (TTTS)
      I made surgery. I'm not cured but I'm sure that helps me with pain.
       
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    5. lymebite
      Surrender

      lymebite Member Benefactor

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      I think that as time goes on, additional patients join the study and undergo the surgery, and the number of reported results increases. So we would see that reflected in the most recent results reported last month at the Vanderbilt University presentation.
       
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    6. lapidus

      lapidus Member

      Location:
      Sweden
      Tinnitus Since:
      1999
      Cause of Tinnitus:
      Noise induced
      Hyperacusis Research visited Mass Eye and Ear Infirmary recently to get a tour and see what Xiying Guan was up to since he got their latest research grant. There's an article on their website:
      http://hyperacusisresearch.org/hyperacusis-research-tours-meei/

      In the end it says:
      "Using the above concepts, Heidi described more recent work whereby a third window was introduced to force an SCD-like condition in a temporal bone. Next a reinforcement of the round window was performed (similar to surgery performed for SCD patients). This data indicates that the round window reinforcement does not reduce the effects of the third window and therefore is not supporting a model for any benefits to SCD or hyperacusis patients."

      Does this mean that Silverstein's procedure doesn't work?
       
    7. Mithrandir
      Ape-like

      Mithrandir Member

      Tinnitus Since:
      10/2015
      Cause of Tinnitus:
      Acoustic Shock Disorder (TTTS)
      Anyway the schema of hyperacusis research is bad, they forgive middle ear muscle...maybe that's what they give hyperacusis ?!
       
    8. bill 112
      Fine

      bill 112 Member

      Location:
      Republic Of Ireland
      Tinnitus Since:
      02/2012
      Cause of Tinnitus:
      Noise exposure
      My ENT said he would do this for me,says it's rather simple if I wanted to give it a try.Haven't done it though,I honestly don't think it will be benficial for me so I'm apprehensive about getting it done.
       
    9. japongus

      japongus Member

      Tinnitus Since:
      1998
      Ronna Fields at Hyperacusis Sufferers facebook group says Silverstein is working on another hypothesis for H, the mobility of the stapes bone. Said he wrote a paper on it too.

      When round window reinforcement was used for dehiscence, it was deemed logical nonsense by the experts in dehiscence. The suspicion was that it helped with only H, not dehiscence, because the oval window's stapes bone was being reinforced with grafts.

      Other patients are coming out at Hyperacusis Sufferers saying it's worked, such as Michelle Maertens.

      H being in the inner ear is probably nonsense written by the slimeball Jastreboff club, it could be all in the middle ear, either from physical movements of the stapes bone or fictitious perceptions of illusory movements that kinestheologists understand when they talk about proprioception.
       
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    10. Mithrandir
      Ape-like

      Mithrandir Member

      Tinnitus Since:
      10/2015
      Cause of Tinnitus:
      Acoustic Shock Disorder (TTTS)
      @japongus
      @lapidus

      Japongus is totally right, a lot of scientist & doctors follow(ed) Jastreboff (bullshit) theory just to give some (bad) help to their patients and give them a good conscience (We can do something for Hyperacusis, don't worry). But when their therapy doesn't work 'cause that's a scientifical non sense, they say to their patient "sorry, all is psychologic, we can't nothing for you, that's in your brain..."

      Jastreboff hypothesis is from 90's, Klochoff discovered the mechanism of hyperacusis with pain noise induced in the 60's, 70's. In same time that's presented in the jastreboff website (tinnitus.org). Now more doctors and scientists know the Klochoff works from the 60's & 70's but they have nothing to offer so they continue to advice TRT/CBT...

      Silverstein, Hyperacusis Research, Damien Ponsot, just to give some names, try new things closer to reality. Silverstein is criticized by "classical doctors" even in France by one ENT who knows perfectly TTTS and ASD, but when I gave her evidence of my improvement thanks to the surgery by a mechanic effect, she stopped criticized Silverstein 'cause we can explain why R&OWR can help people & open the middle ear permit to see bad functioning of middle ear like for Ronna Field.

      You can find what is the problem with you if you search a problem...
       
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    11. lapidus

      lapidus Member

      Location:
      Sweden
      Tinnitus Since:
      1999
      Cause of Tinnitus:
      Noise induced
      I asked Bryan Pollard about the above quote from the article. This was his response:

      " Thanks for reading this article and catching this detail. Yes – this is what the MEEI researchers think from their data. They cannot model a reason it would help.
      Patient experiences still may prove differently but we don’t have a reason yet to believe it is really a path forward to promote."
       
    12. Sen
      Caffeine

      Sen Member

      Tinnitus Since:
      October, 2012.
      And this is exactly why I don't opt for surgeries until they're well demonstrated to work.
       
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    13. japongus

      japongus Member

      Tinnitus Since:
      1998
      Cannot model a reason it will help with what?

      With ''hyperacusis''?

      That thing some audiologist puts you in a booth and diagnoses you with ''if you have low LDLs''?

      Which is frequency-based because ''hyperacusis is supposed to be frequency-based as it's the cochlea fibers that are ruined and this is about hearing loss which is hidden because I can't spot it''?

      And if these LDLs are high you have misophonia? (when you could perfectly have myoclonus instead, but the audiologist is clueless so that's not on the table)

      Well sure with that it wouldn't make sense.

      But maybe if they stopped thinking the middle ear was the sahara desert... didn't they mention the oval window? the stapes bone mobility, and Silverstein's recent paper about mobility according to Ronna (someone needs to get Patel on the phone about this supposed paper)? Didn't they know about the middle ear muscles, I dunno phone Harold Kim see if he answers the phone to other practitioners, because I think anxiousjon's statements are extremely important... everyone's just sitting in front of their research papers?

      Even in an interview the dehiscence expert at John Hopkins, Dr Carey (somewhere in Karen Henry's facebook dehiscence page, search keywords Carey or John Hopkins one of those), was saying the same exact reasons for why it wouldn't work for dehiscence, that it wouldn't block a third window, but he was saying something along the lines ''but maybe the oval window and the stapes is beind addressed with grafts'' iirc.
       
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    14. VRZ78

      VRZ78 Member Benefactor

      Tinnitus Since:
      08/2016
      Cause of Tinnitus:
      infection
      But don't the patients that got this surgery see a hearing loss of 20 dB above 4K ? That's maybe why they have less discomfort as it mainly comes from the high frequencies it's like an earplug
       
    15. lapidus

      lapidus Member

      Location:
      Sweden
      Tinnitus Since:
      1999
      Cause of Tinnitus:
      Noise induced
      Yes, hyperacusis. I asked him the same thing I asked here in the post I made yesterday about the article. Neither the article or Bryan's answer to me mentioned reinforcement of the oval window though, and Silverstein reinforces both the round and the oval, right? Who is Patel?
       
    16. Mithrandir
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      Mithrandir Member

      Tinnitus Since:
      10/2015
      Cause of Tinnitus:
      Acoustic Shock Disorder (TTTS)
      @VRZ78

      I had Round and Oval window reinforcement without any hearing loss ;)
       
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    17. bill 112
      Fine

      bill 112 Member

      Location:
      Republic Of Ireland
      Tinnitus Since:
      02/2012
      Cause of Tinnitus:
      Noise exposure
      Did it help at all?
       
    18. lapidus

      lapidus Member

      Location:
      Sweden
      Tinnitus Since:
      1999
      Cause of Tinnitus:
      Noise induced
      From the study:
      "postoperatively, the patients reported no change in hearing and improved quality of life after the procedure."
       
    19. VRZ78

      VRZ78 Member Benefactor

      Tinnitus Since:
      08/2016
      Cause of Tinnitus:
      infection
      Yeah I know but that's what the patient reported. I thought they made audiograms that showed hearing loss. Anyway my bad
       
    20. lapidus

      lapidus Member

      Location:
      Sweden
      Tinnitus Since:
      1999
      Cause of Tinnitus:
      Noise induced
      There was talk before he made the study about high frequency hearing loss. But I guess it's considered a risk more than an absolute outcome.
       
    21. japongus

      japongus Member

      Tinnitus Since:
      1998
      hpatel@earsinus.com is the one answering queries to Silverstein it seems.

      The problem with ''hyperacusis'' is it's defined by ''discomfort'' on an LDL test. Nothing more. And if you score high on the test you're accused of being phonophobic or misophonic. It's an embarrassingly poorly researched either/or option that doesn't explore any possibilities or hypotheses about the different injuries to the ear could cause different types of discomfort.

      ''Discomfort'' can mean anything, and the LDL tests are carried out by the audiologist industry, which is heavily influenced by Jastreboff. Judging from my interactions with sound therapists or the admin of chat-h Rob, ''discomfort'' and ''lack of discomfort but still certain sounds cause trouble'' can mean a range of perceptions that aren't specified or researched because they're regarded as irrelevant by Jastrebluff.
       
    22. PaulBe

      PaulBe Member Benefactor

      Location:
      Cairns
      Tinnitus Since:
      11/2013
      Cause of Tinnitus:
      Probably sound, though never proven
      WTF? Not pain, not discomfort...trouble?
       
    23. japongus

      japongus Member

      Tinnitus Since:
      1998
      It's total dishonesty. I grilled Rob over and over about it and he was a total coward about it, he just kept repeating my discomfort wasn't discomfort. He resorted to ad hominem once he knew he didn't have a case to stand on, and got me banned at chat-h, and a thread deleted at tsmb.

      Here specifically, lack of discomfort on the LDL means it's misophonia/phonophobia according to Jastrebluff's disgraceful writings.

      It was comic seeing Rob try to shift the blame on me by saying sometimes I would choose to score low on the LDL test. The truth is LDL tests are stupid and so are the audiologists that carry them out, so sometimes I'd get across to them that constant sound was more tolerable than a short beep, sometimes I wouldn't. Both Rob and audiologists aggressively show extreme illiteracy when it comes to this.
       
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    24. Mithrandir
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      Mithrandir Member

      Tinnitus Since:
      10/2015
      Cause of Tinnitus:
      Acoustic Shock Disorder (TTTS)
      @japongus

      audiologists keep in their rates only people who had "success", when you stopped because of ear pain or discomfort they don't include you in their figures :)
       
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    25. lapidus

      lapidus Member

      Location:
      Sweden
      Tinnitus Since:
      1999
      Cause of Tinnitus:
      Noise induced
      Who is Damien Ponsot? Is that the french doctor who performed the surgery on you?
       
    26. lymebite
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      lymebite Member Benefactor

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    27. lapidus

      lapidus Member

      Location:
      Sweden
      Tinnitus Since:
      1999
      Cause of Tinnitus:
      Noise induced
    28. Mithrandir
      Ape-like

      Mithrandir Member

      Tinnitus Since:
      10/2015
      Cause of Tinnitus:
      Acoustic Shock Disorder (TTTS)
      Nope Ponsot is a french researcher, he's closer to the truth than other for a good reason. He began to make a very exhaustive review and now he works only on the most logical way for H noise induced with pain, it means TTTS.

      I discovered Damien Ponsot thanks to Lymebite, the american guy ;)
       
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    29. lymebite
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    30. japongus

      japongus Member

      Tinnitus Since:
      1998
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