Potential Treatment for Hyperacusis — Looks Very Good...

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

    1. Mithrandir
      Ape-like

      Mithrandir Member

      Tinnitus Since:
      10/2015
      Cause of Tinnitus:
      Acoustic Shock Disorder (TTTS)
      just an error maybe :)
       
    2. lymebite
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      lymebite Member Benefactor

      Location:
      United States
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    3. Hopeful1
      Depressed

      Hopeful1 Member Benefactor

      Tinnitus Since:
      04/2016
      Cause of Tinnitus:
      Loud Music
      It does not reverse the mal adaptive plastic changes of brian so T will remain....when i have am 101 injections my ears where stuffed and my H appeared to have gone for a week till ears are clear...i guess this works similarly....
       
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    4. lymebite
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      lymebite Member Benefactor

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      Here is a short video of the RWR surgery for hyperacusis posted by the Silverstein Institute.

      New surgical procedure to reduce noise...
       
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    5. Dizzy

      Dizzy Member

      Tinnitus Since:
      2011
      Cause of Tinnitus:
      SCDS
      Round window reinforcement is used in Australia to treat SCDS. It is also used for perilymph fistula repair. You might have some success by finding doctors who treat SCDS and see if they do RWR and if they think it can help your situation. You might find doctors who perform round window occlusion or plugging. The plugging technique doctors use with fatty tissue is completely different than what is being discussed in the article cited here that immobilizes the round window with perichondrium. Plugging the window with soft tissue that allows for movement of the round window functions more like the procedure Dr. Silverstein is discussing. It reinforces the window without immobilizing it.
      I had it done not too long ago for SCDS. After the surgery my hearing was much more sensitive, but sounds didn't bother me as much. On the down side, my tinnitus that had been intermittant became constant. For me, I got a lot of relief from many of my SCDS symptoms, but I know of others who did not but had no regrets for trying. It is more likely to take a full week on pain meds to get over the surgery. It's funny, when I was looking into the procedure most of what I could find from Dr. Silverstein was on patients who were dealing with sound sensitivity issues not related to SCDS. Best of luck to everyone.
       
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    6. PaulBe

      PaulBe Member Benefactor

      Location:
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      I get a sense that Silverstein has recognized a largely untapped potential of this procedure, and a pent-up demand for same.
       
    7. japongus

      japongus Member

      Tinnitus Since:
      1998

      I already got a local ENT in Spain to agree to do this procedure because they hold Silverstein in high regard. But I'm consumed by doubt as to if I have myo or hyperacusis and whether this op only applies to types of sensitivity like roof thinning or tullios, I was initially enthused for it as a companion piece to middle ear tenotomy. What I don't like is what they say about reinforcement in the facebook page for SCDS where they have a few that didn't get improvement and a few that did and seem to have concluded that most don't improve, and that other doctors like Hain or Carey say its illogical and that it only makes sense if the oval window is also receiving reinforcement grafts (but isn't the method titled ''round'' window reinforcement???), such a massive disagreement among authorities in the field is hardly encouraging.
       
    8. Dizzy

      Dizzy Member

      Tinnitus Since:
      2011
      Cause of Tinnitus:
      SCDS
      QUOTE="japongus, post: 191448, member: 9323"] other doctors like Hain or Carey say its illogical[/QUOTE]
      It might be useful if you can provide a link to what these doctors said so others can see the context.

      I wouldn’t be concerned about the fact that there is debate in the medical field about using RWR for the treatment of SCDS. Dr. Gianoli in Louisiana is another well-respected and leading expert in the field and he takes a combined surgical approach, which includes RWR (http://emedicine.medscape.com/article/857914-treatment). The debate on use of RWR for treatment of SCDS is limited to that condition. You can get in to the ins and outs of it, but it relates to the effects of the thinning of the temporal bone, which doesn’t apply to non-SCDS hyperacusis.

      The pertinent question is will it help those with hyperacusis not caused by SCDS? An outpatient surgery with a relatively low risk of complications and short recovery time that can ease a disabling condition is worthy of investigation.

      Here is the text of the study from abstract posted at the beginning of this forum. This study was done specifically with patients that did not have symptoms of SCDS. One should note that there are only two patients in this study.

      https://www.researchgate.net/public...einforcement_for_the_treatment_of_hyperacusis

      My doctor said about 70% saw improvement with the procedure I had. That leaves 30% who saw no improvement, so it is not surprising to find people in a support group who have had the surgery but did not have improvement. It would be interesting to note what their symptoms were before and after the surgery. Did they have any improvement for a time then a return of symptoms? Was there a correlation to the size of the dehiscence and relief of symptoms for those that had improvement as opposed to those that didn’t? Was there further deterioration of the temporal bone that affected the outcome of the surgery for those that had returning symptoms? How many people had improvement with surgery and never went back to the support group or never joined in the first place? My point being, don’t rush to judgment on the possibilities of advances in medicine based on discussions in a support group for a different medical condition. It is also important to keep in mind when people are making decisions about their own medical treatment that just because it did not work for one person does not mean that it can’t work for someone else.

      As for my experience with RWR, I had immediate relief from autophony and some balance issues as well as improvement with hyperacusis. A word of caution as it relates to this discussion, the kids playing on the playground nearby used to fill my head so that I couldn’t think. Now my hearing is so sensitive that hearing them play sometimes hurts my ear, but the sound somehow doesn’t bother me at all. I don’t know how that would affect someone who is already experiencing pain with high frequency sounds as a chief complaint with hyperacusis. Improvement could be related to relief from Tullio’s. Also, as I mentioned before, the tinnitus is now constant, but not increased in volume.

      My point is neither to advocate nor to dissuade, but to add some facts and experiences to this valuable discussion. I don't have anything to add so it is likely that I won’t post here again. I will risk saying this: the more this discussion is based on facts backed up with sources and direct experiences the more likely it will develop into something useful and worthwhile. I hope this contribution helps a little.

      Best of luck
       
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    9. japongus

      japongus Member

      Tinnitus Since:
      1998

      Thank you very much for your input. The reference for John Carey is on the Johns Hopkins Facebook page, in an interview he gave in 2015, in an answer to Karen Henry, can't link directly to it and going to it is a hassle because for some mysterious reason it eats up tons of browser memory. When reinforcement was used for dehiscence, oval window was mentioned a lot less on their paper than round window. In the paper for dehiscence it talks about charts being made with RW (with or without OW). But in the paper for hyperacusis pure, oval is mentioned just about as much as round. That's promising to me for two reasons. First and I'm far far from an expert, because of what Hain and Carey said, that for dehiscence by itself it didn't make sense. And second because if they're treating the oval window that's attached (?) to the stapes, and the stapes is attached to the stapedius then it would make sense given the reports I read about the stapedius being involved by pulling or tugging away, in that maybe all along it was the stapes hypermobile or out of position that was affecting both the oval window and the stapedius. I was planning on doing this operation but having someone ready to deal with the stapedius in case it wasn't enough, for this very reason. Most of the reports are of success, but someone on fb hyperacusis sufferers group is suffering after the op and I'm wondering if he'd be better off taking into account the possibility of myoclonus, that too would give us all a better impulse, just like I'm worried that in dehiscence other surgeons might have only tried round window without the oval one.

      Another thing please don't go before this, I was hoping you'd describe to us, as a successful SCDS patient with successful reaction to reinforcement as it related to hyperacusis, was if you could give us a nice paragraph on the nature of the sounds that bothered you, what kind were they, were they particular, ''selective'', did they obey to pure loudness? Did you feel it or did you just know it (as a brain zap), where did you feel it, when in the sound did you feel it, or is hyperacusis in SCDS nothing to do with hyperacusis without dehiscence, did you only have hyperacusis to autophony? We have a problem in this community of years of being told our sound sensitivity was selective and such and such and of fear that there may be different kinds of sound sensitivity and that this op may not apply to all of us, so if we can get more accurate profiles of successfully treated hyperacusis that'll motivate some people to make the decisive step.

      And on this note, can you explain to me this

      How can your hearing be more sensitive but not bother you as much, that your hearing is now more sensitive but it doesn't bother you at all? Do you mean you hear more things than you used to but its now all painless, is that what you mean by sensitive?
       
    10. lapidus

      lapidus Member

      Location:
      Sweden
      Tinnitus Since:
      1999
      Cause of Tinnitus:
      Noise induced
      So there's someone who had Silverstein's procedure and not had good effect? I was of the impression from Silverstein's videos that every patient had been successful.
       
    11. japongus

      japongus Member

      Tinnitus Since:
      1998
      Well one on facebook Hyperacusis sufferers group Ben Levy for now after a few weeks postop doesn't seem to be doing well but its too early to tell. I'm wondering if he has myoclonus or something, and I don't know how to tackle the situation. And again, everyone else with pure hyperacusis is happy with the op.
       
    12. lymebite
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      lymebite Member Benefactor

      Location:
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      The patient referenced by @japongus has posted about his experience in great detail on this Facebook group:

      https://www.facebook.com/groups/2414964219/

      He did not have his RWR procedure done at the Silverstein Institute, it was done by his own ENT in his home town, so that may or may not create new variables. But in any event, his surgery was not conducted at the Silverstein Institute.
       
    13. japongus

      japongus Member

      Tinnitus Since:
      1998
      Which is why I'm wondering if he only had round, not oval window done. I also read someone in the SCDS fb forum say, albeit for dehiscence not purely H (whatever it is), ''I saw Dr. Carey say that he doesn't revise this surgery - it has to be done by the doctor who did it in the first place because there is variation in the surgery - including the materials and methods used in surgery.''
       
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    14. lapidus

      lapidus Member

      Location:
      Sweden
      Tinnitus Since:
      1999
      Cause of Tinnitus:
      Noise induced
      Not into facebook so couldn't read it but ok, yeah, maybe that has something to do with it. Maybe his doctor did the procedure differently from Silverstein, who knows?
       
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    15. Dizzy

      Dizzy Member

      Tinnitus Since:
      2011
      Cause of Tinnitus:
      SCDS
      For starters, I don’t know anything about hyperacusis as it relates to anything but my own experiences. I am not an expert. I did a lot of my own homework before deciding to get surgery, so I appreciate where everyone is coming from.

      I didn't see the reference, but the work you are getting into around Dr. Carey and reinforcement of the oval window may mislead you because SCDS also deals with a theory of a mobile “third window” caused by an opening in the temporal bone that is unique to SCDS patients. The dynamics would be different for other conditions. Something to keep in mind.

      The word of caution from Dr. Hain on round window plugging is worth reading and important not to confuse with other plugging procedures used that don’t attempt immobilize the round window. http://www.dizziness-and-balance.com/disorders/unilat/scd.htm. The surgery he describes here is the one you want to avoid and it is no longer used by Dr. Silverstein (http://www.ncbi.nlm.nih.gov/pubmed/24667055). Immobilizing the round window is where people have had more negative results as opposed to neutral or positive results from surgeries. As long as you stay away from that, your ENT will probably have an idea of an approach that would be good for your situation if surgery is the way to go.

      An attempt to answer your questions:

      For me autophony and hyperacusis are two different things. I'll address hyperacusis. Sounds that bother me don’t have to be loud. They include: A child laughing on the playground, the air conditioning on high in the car, uneven shopping cart wheels at the grocery store, the ringing of the cash registers, babies when they cry, oven vent fans, restaurant chatter (voices and dishes), any music with super bass from cars passing by, to name a few.

      What happens when I hear these sounds is that they completely fill my head. I can’t think. If I am talking sometimes I can’t even complete a sentence. In my head it is like static taking over the airwaves of a radio station. I don’t know any other words to describe it.

      Since the surgery my hearing in that ear has been more sensitive like someone turned up the volume in that ear. So, when a baby cries, my ear can hurt, but the sound no longer fills my head like it did. It is just a baby crying and a little discomfort in my ear. I can deal with that. That’s why I say it hurts, but it doesn’t bother me.

      I can go to a cafeteria and carry on a conversation with friends without a problem. If someone drops silverware on the floor it can hurt my ear because everything seems to have a bit more volume, but my head is clear. No static. I can function in this environment now and I could barely tolerate it before.

      These are my experiences. I’m sure they will be different from anyone else’s, so if you are making a judgment on your own treatment based on the concretes make sure you get a large enough sample size. Finding someone with experience who does not have a vestibular disorder would be especially useful information.
       
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    16. japongus

      japongus Member

      Tinnitus Since:
      1998

      So yeah, it relates to dehiscence logic, not hyperacusis logic. But it is about reinforcement, not merely occlusion. It makes more sense that now OW reinforcement seems to more on the table.



      How would the sound enter and fill your head, in the form of excessive vibration or in the form of a less muscular type of pain zap? And your static was of the same frequency as radio static, fairly high frequency, so it was kind of continuous tinnitus with vibration or pain? The filling of your head was it like freight train hitting you, was it preceded or accompanied by a thumpish sort of impact, was it just sound making your entire head tingle? I hope I'm not being too rhetorical in my descriptions... You had no low pitched rumbling anywhere?

      Thanks again for your very interesting profile.
       
    17. ReyKalinic

      ReyKalinic Member

      Location:
      Roma
      Tinnitus Since:
      2004/05
      Cause of Tinnitus:
      Triggered by TN
      Are 3 ears statistically significant?
       
    18. Mithrandir
      Ape-like

      Mithrandir Member

      Tinnitus Since:
      10/2015
      Cause of Tinnitus:
      Acoustic Shock Disorder (TTTS)
      20 persons are better ;)
       
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    19. lapidus

      lapidus Member

      Location:
      Sweden
      Tinnitus Since:
      1999
      Cause of Tinnitus:
      Noise induced
      Nothing new really but I asked Bryan Pollard, head of Hyperacusis Research what his thought were on the procedure:

      "I’m watching Silverstein’s work closely. I have seen the testimonies and I’m looking to get one for my site. There’s a lot more evidence to collect to really understand better exactly what type of and severity level of hyperacusis it can help. I also want to learn more about the risks and possible negative outcomes. Nothing like this is typically without risks but for those with severe hyperacusis it may be worth it if the surgery helps those who are severe.

      Bryan"
       
    20. lymebite
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    21. lymebite
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    22. Sen
      Caffeine

      Sen Member

      Tinnitus Since:
      October, 2012.
      My neurotologist gave me the option to have this surgery performed. He's the best in my country in the field.

      I'm gonna wait and see before I make any decisions.
       
    23. lapidus

      lapidus Member

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

      Mithrandir Member

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

      Where are you from ? Did you fill the survey about hyperacusis for the research ?
       
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    25. Sen
      Caffeine

      Sen Member

      Tinnitus Since:
      October, 2012.
      Canada. And I'm working on it. They're mailing me a physical copy because the survey wouldn't work on any browser.
       
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    26. Mithrandir
      Ape-like

      Mithrandir Member

      Tinnitus Since:
      10/2015
      Cause of Tinnitus:
      Acoustic Shock Disorder (TTTS)
      @Sen good for the survey. I'm surprised I have no problem & I use safari. What is the origin of your H ?
       
    27. Sen
      Caffeine

      Sen Member

      Tinnitus Since:
      October, 2012.
      I have no way of knowing for sure, but I've been to hundreds of concerts without hearing protection, so noise exposure is my best guess. There was no single incident I can point to that triggered it. It began with a fluttering spasm (triggered by noise) in my left ear in September 2012 when I was 23 years old. Tinnitus came a month after that, and then both steadily worsened throughout the following year.

      Then in 2014 new symptoms popped up like dizziness, migraines, facial pain/numbness, among others.

      1.5mg of Ativan per day helped me through 2014-2016, and for a while I thought I had seen real improvement. Benzodiazepines appear to reduce my symptoms by quite a bit. Now as I taper off benzos, my symptoms worsen with every drop in dose.

      Now I'm 27 and I'll be 28 soon. No money, no education, no prospects, no hope. I'm sitting here with a crushing headache and burning ears wondering how I've made it this far, and how far I'll make it in the future.
       
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    28. Mithrandir
      Ape-like

      Mithrandir Member

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

      That's the same pain for me.

      Why stopping benzo if it's help ? What do you think about TTTS ?
       
    29. Sen
      Caffeine

      Sen Member

      Tinnitus Since:
      October, 2012.
      I fear that long term use will make my situation worse. Even though they help right now, benzos are known to cause a tolerance in your body and stop working over time. The withdrawal syndrome can become protracted and permanent as well, and the length of time you've been taking the drug has an affect on this.

      There is also a strong correlation between benzodiazepine use and dementia later in life.

      I don't have an opinion.
       
    30. lymebite
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