Potential Treatment for Hyperacusis — Looks Very Good...

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

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    1. Zimichael

      Zimichael Member Benefactor

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    2. Yo-Han

      Yo-Han Member

      Location:
      Belgium
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      I've read carols story a few months ago on the hyperacusis chat forum. I remembered that the surgery wasn't very invasive and only abot 30-45 minutes and was reversable. Nice to hear pain(only an aspirin nedeed occasionally) and side effects seem to be good too... typical for minor invasive surgery.

      It's nice to see the persons behind the story, touching! I'm really happy for them.

      The theory behind it made sense to me too.
      I have not heard one technical medical question... does that added tissue needs to be replaced every few years (or more). Maybe they'll still need to find this out... and even then, if it works, its well worth it.

      I really hope you can get in touch with these people very soon @Zimichael
      Thank you for posting this very hopefull video. Succes story's of others are always inspiring too!
       
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    3. RaZaH
      Not amused

      RaZaH Member Benefactor Team Tech

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      Sweet ! hope you go for it and it works !
       
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    4. Mithrandir
      Ape-like

      Mithrandir Member

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      @Zimichael Hello Mister,
      This surgery is very interesting, I read some people tried it with success, Did you make the experience ? Do you know if in USA, several doctors do that or only silverstein ?

      Thanks !
       
    5. generalfuzz

      generalfuzz Member Benefactor

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    6. PaulBe

      PaulBe Member Benefactor

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      Probably sound, though never proven
      Meanwhile, Mainstream research is beetling away trying to find a magic pill to claim copyright over.
       
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    7. Mithrandir
      Ape-like

      Mithrandir Member

      Tinnitus Since:
      10/2015
      Cause of Tinnitus:
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      I ask to my ENT, he told me, the risk is being deaf...
       
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    8. AnxiousJon
      Magical

      AnxiousJon Member

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      That's always a risk of surgery of the middle ear.
       
    9. noisebox
      Loved

      noisebox Member

      Location:
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      Yeah and if you ask an optician about laser corrective surgery for eye site they will tell us all the bad points. Audiologists don't want a cure for T or H.
       
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    10. japongus

      japongus Member

      Tinnitus Since:
      1998

      The problem though is he's only curing dehiscence disorder and believes that everything that isn't low LDL is misophonia, which when you look close into is poorly thought out nonsense as it could be middle ear myoclonus instead. But great vid.
       
    11. Mithrandir
      Ape-like

      Mithrandir Member

      Tinnitus Since:
      10/2015
      Cause of Tinnitus:
      Acoustic Trauma + NIHL
      @japongus you think that only functions for SCDS and not for "normal" H ?
       
    12. japongus

      japongus Member

      Tinnitus Since:
      1998

      I'm not sure right now, but my impression was that his round and oval window reinforcement was supposed to be designed for dehiscence.
       
    13. lymebite
      Breezy

      lymebite Member Benefactor Team Research

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      The round and oval window reinforcement surgery has been used most commonly to treat perilymph fistula, and more recently SCDS. But Dr. Silverstein noticed that when treating patients for those other conditions, their hyperacusis improved. To investigate further, he is conducting a research study in which the surgery is performed on patients with only severe hyperacusis as their primary symptom.

      The results of the study will be presented on May 21, 2016 in Chicago:

      http://www.americanneurotologysociety.com/images/forms/16ansprelim.pdf

      I am hoping to hear good results, that lots of severe H patients experienced good improvement!
       
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    14. PaulBe

      PaulBe Member Benefactor

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      Probably sound, though never proven
      Gee, if it proves successful then we may get it in Australia in ten years if all the ENTs who are invested in Audiology chains can be removed from the picture.
       
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    15. japongus

      japongus Member

      Tinnitus Since:
      1998
      Hain from dizziness and balance dot com is skeptical of this, it might be worth reading into what his thought processes are

      http://www.dizziness-and-balance.com/disorders/unilat/scd.htm

      ''New conditions can sometimes elicit entrepreneural activity in surgeons. There currently is an oversupply of otologic surgeons in the United States. In the past, a somewhat similar condition to SCD (perilymph fistula), was associated with an immense surge in operations, many later determined to be inappropriate.''
       
    16. JonL

      JonL Member Benefactor

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      Nashville, TN
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      11/2005
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      Hi. The article that you linked to does not discuss the procedure that folks are discussing in this thread. The article that you linked to is discussing a specific disorder (SCD) and a different procedure (round window plugging). On the other hand, this thread and the related video are about the treatment of hyperacusis (specifically in patients without SCD) and the procedure of round and oval window reinforcement. This procedure is different from round window plugging. (In one of their articles on SCD, Silverstein [the ENT who we are talking about] and colleagues explicitly describe how round and oval window reinforcement is more beneficial than round window plugging for the treatment of SCD: https://www.ncbi.nlm.nih.gov/pubmed/24667055). What the findings suggest so far is that round and oval window reinforcement (not plugging) appears to be helping folks with hyperacusis.
       
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    17. TeresaD
      Fine

      TeresaD Member

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      I, for one, will be waiting to hear the results in the May update. I'm very excited about this!
       
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    18. japongus

      japongus Member

      Tinnitus Since:
      1998
      Well, no thanks to chat-hyperacusis.net and hyperacusis.net, that ban-happy edit-nutso echo chamber ignored those who cured themselves with tenotomies a decade ago and went on to theorise about all the obsessive compulsive brain limbic disorders we had. The middle ear muscles issue were theorised by Marsha Johnson over a decade ago there too, but that ridiculous forum convinced her to change the definition of soft sound sensitivity to selective soft sound sensitivity because it didn't chime with Jastreboff's ivory tower sensibilities and conjecture about hair cells and central gain... soft sound sensitivity had already been established and defined the instant JoeM who had a tenotomy and cured said this:

      ''6) You mentioned you were at a party and were good. This is a strange phenomenom I tried to explain to my docs about when there is a lot of white noise like being at a party or such, the ear doesn't act up. My thoughts on this is that because the ear can't focus on one sound, it doesn't act up, OR, it is less noticeable because the ear is working on "listening" to so many other sounds...my theories though.''



      right now Rob on this operation being discussed in the chat-hyperacusis forum is busy claiming that ''it is possible if patients feel more comfortable around sound after the procedure, they will be willing to expose themselves to more sound and to more ambitious environments. In turn, this could potentially improve their sound tolerance.'' Quite the wishful thinking desperate rescue of TRT. Clutching at straws, radical Jastreboffism never spotted how true misophonia didn't have a physical feeling in the ear in most cases if not all, and it clearly never had much, if any, knowledge of the middle ear, never took any consideration of otalgia, not to mention microvascular compression and other somatosensorial tinnituses...

      http://www.chat-hyperacusis.net/post/hyperacusis-surgery-7084386

      Is this the same operation as the recent shift from SCDD to general ''hyperacusis''? Cuz Carol i think her name is says ''The operation is called round window closure and stapedial tendon transection''

      If its like that, then all the ranting I've been in a limbo in for the last 6-9 months will have been validated. But the problem as usual is who are going to be the black sheep and unfortunate souls that repeat the bad experience Astrid and others might have had with similar procedures...
       
    19. japongus

      japongus Member

      Tinnitus Since:
      1998
      Ok, then, I see... round window reinforcement... instead of plugging. I'll still like to know why stapedial resection was carried out because I read so much about ''myoclonus'' resections from a decade ago I'm wondering if Silverstein is closing the missing link between ''hyperacusis'' and ''myoclonus'' with this recent wave of operations he'll supposedly be detailing on may 21.
       
    20. Bobby B
      Fine

      Bobby B Member Benefactor

      Tinnitus Since:
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      So much for the theory that exposing your ear to loud sounds is going to improve your H...
      This looks like a permanent ear plugging or drum limitation
       
    21. PaulBe

      PaulBe Member Benefactor

      Location:
      Cairns
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      11/2013
      Cause of Tinnitus:
      Probably sound, though never proven
      Yeah, I know Jiri..I mean, Japongus. I watch and find myself consistently disappointed. Chat-H really is the Sound Therapy network. Dogma births easy and dies hard.
       
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    22. japongus

      japongus Member

      Tinnitus Since:
      1998
      Middle ear tenotomies have also been associated with curing Meniere's, so I wouldn't be surprised if it turns out that all along laser therapy was only curing certain types of etiology in the middle ear, not the cochlea, not the central gain either. So Wilden and Jastreboff might have enacted quite an embarassing foolish battle.

      It escapes me why the at least two academic papers I found, one from 2003 the other from 2012, talking of middle ear muscles and menieres haven't become mainstream (search middle muscles meniere on libgen dot io/scimag). Maybe something went wrong or maybe knowledge just gets worse. Some of the treatments for menieres include hearing aids, medications, so there may be a profit incentive... or maybe the world is just becoming less knowledgeable... the paper from 2003 says ''
      Our results are consistent with the experiences of many authors in the late 19th and early 20th centuries who found
      tenotomy to be a promising approach for treating MD'' lol....
       
    23. Bobby B
      Fine

      Bobby B Member Benefactor

      Tinnitus Since:
      11/2015
      Cause of Tinnitus:
      long term NIHL and recent acoustic trauma
      My take on this - and @japongus feel free to correct me as you seem to know a lot more than most of us - that H can be related to nerve damage in some ways.

      Kind of reminds me of shingles - I had it once and just rubbing a shirt against my torso would be incredibly painful.

      We know that light (LLLT or diodes, polarized light no only lasers ) does help with nerve healing - there are lots of serious studies on that and even a few human ones.

      So that's my take here - LLLT helps nerve healing and in cases where the H issue is related to nerves, then it may help.

      As for the surgery, I don't see how this is different from wearing ear protection if the goal is to limit ear drum movement.

      More convenient than having to wear protection sure but still you do loose low db hearing in the process.
       
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    24. japongus

      japongus Member

      Tinnitus Since:
      1998
      So is anyone near Chicago to go see him on May 21? This could potentially be very interesting. Just like the european tinnet conference it really should be front page on tinnitustalk.

      I phoned their center last week for info and was told by a nurse they'd get back to me on who is elegible for the surgery. But I want to know specifics like why the f does Carol mention a stapedial transection over at chat-h and get Silverstein to talk about whether this possible transection makes people with H more or less sensitive to noise, or whether round window reinforcement reduces the theoretical stapedial contractions (which wouldn't explain why Carol mentions a stapedial transection without any of the articles or videos doing so).
       
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    25. Mithrandir
      Ape-like

      Mithrandir Member

      Tinnitus Since:
      10/2015
      Cause of Tinnitus:
      Acoustic Trauma + NIHL
      If anybody has news from the COSM :)
       
    26. japongus

      japongus Member

      Tinnitus Since:
      1998
      I misread the whole thing and was told by Silverstein's team that it was just a presentation they did to the american neurotology society, seven minutes long, and that all the info was out already in the seminars. Also that they're up to 15 patients, which seems odd given that 5 months have passed since they said they had 13 or maybe even 15 patients to someone else in the this forum. I guess if business is as usual they still might be getting the positive results.
       
    27. japongus

      japongus Member

      Tinnitus Since:
      1998
      As for me, I'm now really stuck on whether I have true hyperacusis or true myoclonus and which operation to think about first. I wonder if the excessively vibrating oval window could cause the same theoretical stapedial pull my soft sound sensitivity would be causing, or whether both transection and reinforcement might have collateral effects as I am a pretty extreme case.
       
    28. Mithrandir
      Ape-like

      Mithrandir Member

      Tinnitus Since:
      10/2015
      Cause of Tinnitus:
      Acoustic Trauma + NIHL
      @japongus

      RWR is reversible cut the muscle isn't...
       
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    29. lymebite
      Breezy

      lymebite Member Benefactor Team Research

      Location:
      United States
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      2013
      Cause of Tinnitus:
      Unknown
      @japongus, when you talked with them, did Dr. Silverstein's team explain why Carol (patient #2) said "the operation is called round window closure and stapedial tendon transection" but why that term has never been used again? Everywhere else it is termed as "round and oval window reinforcement surgery for hyperacusis"?

      http://www.chat-hyperacusis.net/pos...-7084386?highlight=transection&pid=1284851359
       
    30. japongus

      japongus Member

      Tinnitus Since:
      1998
      It was over email, and all he said was no tenotomies happened in this operation. Bryan from hyperacusisfocus said the same thing about when he talked to him. So I'm perplexed as to why Carol might have said that.
       
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