What Would You Like to Ask Bryan Pollard, the President of Hyperacusis Research Limited?

Discussion in 'Support' started by Markku, May 7, 2019.

    1. Markku
      Inspired

      Markku Founder Staff Podcast Patron Benefactor Hall of Fame Advocate

      Tinnitus Since:
      04/2010
      Cause of Tinnitus:
      Syringing
      For one of our next Tinnitus Talk Podcast episodes, we are soon interviewing Bryan Pollard, the President of Hyperacusis Research Limited.

      Bryan's specific area of expertise is hyperacusis and related pain/discomfort.

      Bryan himself suffers from hyperacusis, which he believes is due to sound he was exposed to from a loud wood chipper several years ago.

      Bryan started and runs Hyperacusis Research Limited exclusively to raise funds for ongoing scientific research work to alleviate hyperacusis.

      We would love to get your input!

      Please submit your questions directly via the form we put up.
      You can enter between one and three questions (if you have more, you can submit the form a second time).

      https://www.surveymonkey.com/r/bryanpollard
       
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    2. Contrast

      Contrast Member Benefactor Hall of Fame

      Location:
      Retrovile
      Tinnitus Since:
      late 2017
      Cause of Tinnitus:
      injury from noxious noise
      1: Different Types of Hyperacusis
      From what research seems to be suggesting there is no one condition labelled hyperacusis but rather several poorly or un-classified conditions causing intolerance of sound. Could you go over and describe the various types of hyperacusis? I also understand this podcast is focused on pain hyperacusis.
      1: Loudness Hyperacusis
      2: Pain Hyperacusis (noxacusis)
      3: TTTS/trigiminal nerve irritability


      2: Prognosis

      Why do you believe some people have pain hyperacusis for several hours after an acoustic injury and others have it for several months, to years to indefinitely? The prognosis seems to be a mystery but resting ones ears makes it better. I am already aware a general rule of thumb is the more history of noise exposure the less likely recover chances are but some people are just unlucky to say the least.

      3: Standard of Care and the Stereotypical Visit to the Audiology Clinic
      Do you feel like audiologists can possibly be doing a disservice to patients with noise-induced pain by treating it with sound therapy as if it were something that could be retrained or desensitized? From what a lot of people are saying here is that audiologists have historically had a poor track record of helping patients with pain hyperacusis. Another issue audiologists have is failing to test for hidden hearing loss which seems to be an epidemic for people with tinnitus. Some are not even familiar with hyperacusis.

      4: When Is Research Going to Change the Standard of Care?
      The research of Paul Fuchs, Charlie Liberman and others in this field are showing how the inner ear works on a much more sophisticated level which seems to be challenging how the clinical standard of care is practiced. There's no regenerative treatments yet for damaged hair cells and cochlear neuropathy, but how do we get doctors to be familiarized with research? Doctors would obviously understand this research a lot better than laymen's like myself. When will patients be diagnosed with cochlear synaptopathy and noxacusis? When will doctors understand the concept of setbacks?

      5: Information About Pain Hyperacusis

      Can you do you best to explain the pathologies of noxacusis and the trigeminal nerve issues sufferers have?
      Do you believe it has striking resemblance to peripheral neuropathy and/or phantom pain elsewhere in the body?


      6: Will Numbers Rise?
      With noise pollution being a real threat, are rates of pain hyperacusis going upward in the next several years?

      7: Hypotheticals
      With companies like Frequency Therapeutics, Decibel Therapeutics and Otonomy working on regenerating hair cells, synapses and possibly more. Would regenerative medicine be the most plausible treatment for pain hyperacusis?
       
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    3. lymebite
      Vegged out

      lymebite Member Benefactor

      Location:
      United States
      Tinnitus Since:
      2013
      Cause of Tinnitus:
      Unknown
      What can we as patients with hyperacusis do to help you and others accelerate the speed of research to find effective treatments and ideally a cure?
       
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    4. Hazel
      Dreaming

      Hazel Director Staff Podcast Patron Benefactor Hall of Fame Advocate

      Location:
      the Netherlands
      Tinnitus Since:
      10/2017
      Cause of Tinnitus:
      one-sided hearing loss (of unknown origin)
      @Contrast and @lymebite, did you put your questions in the survey link provided by Markku above? We can only process them if you enter them there.

      Also, ask some others to fill in the survey if you will, only three responses so far.
       
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    5. lymebite
      Vegged out

      lymebite Member Benefactor

      Location:
      United States
      Tinnitus Since:
      2013
      Cause of Tinnitus:
      Unknown
      Yes, I did. Thought it might be helpful to others to see what I put in the survey link, since I found I helpful to see the questions posed by @Contrast.
       
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    6. lymebite
      Vegged out

      lymebite Member Benefactor

      Location:
      United States
      Tinnitus Since:
      2013
      Cause of Tinnitus:
      Unknown
      Will do.
       
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    7. JohnAdams
      Starving

      JohnAdams Member Benefactor Hall of Fame

      Location:
      here
      Tinnitus Since:
      it started.
      Cause of Tinnitus:
      hearing loss
      Is hyperacusis just like the type of sensory perception of sensitivity from other types of tissue damage like burns and cuts?
       
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    8. lapidus

      lapidus Member Benefactor

      Location:
      Sweden
      Tinnitus Since:
      1999
      Cause of Tinnitus:
      Noise induced
      Questions delivered.
       
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    9. AUTHOR
      AUTHOR
      Markku
      Inspired

      Markku Founder Staff Podcast Patron Benefactor Hall of Fame Advocate

      Tinnitus Since:
      04/2010
      Cause of Tinnitus:
      Syringing
      We will close the survey on Saturday, May 18th, which allows us to have enough time to process the questions and send them to Bryan Pollard for review.

      The interview is scheduled for May 23rd.

      Still haven't submitted your questions? You can submit your questions before Saturday via the link found in the first post of this thread. Thanks in advance!
       
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    10. lymebite
      Vegged out

      lymebite Member Benefactor

      Location:
      United States
      Tinnitus Since:
      2013
      Cause of Tinnitus:
      Unknown
      @Hazel - About a week ago, after you had suggested soliciting people for more questions, I posted in several hyperacusis & tinnitus Facebook groups. Hopefully that helped generate some additional Qs.

      Looking forward to the podcast, thanks so much for organizing it. Even though I cannot listen to it I will look forward to reading comments about it from others and I will ask Bryan if he might be able to give me a transcript. I don't know if you have a way to do subtitles automatically similar to how YouTube offers that option, if so that would be great. There are others in my situation than are severe enough they cannot listen.
       
      Last edited: May 19, 2019
    11. AUTHOR
      AUTHOR
      Markku
      Inspired

      Markku Founder Staff Podcast Patron Benefactor Hall of Fame Advocate

      Tinnitus Since:
      04/2010
      Cause of Tinnitus:
      Syringing
      Thanks so much for trying to spread it. That's commendable and you have our gratitude. I wish more people were like you.

      Very poor response unfortunately, the form was only filled 13 times in total. However, I believe your effort was responsible for over half of that, so that's great!

      And, I'm sure we can come up with interesting things for @Jack Straw to discuss with Bryan if the submitted questions aren't enough.
       
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    12. lymebite
      Vegged out

      lymebite Member Benefactor

      Location:
      United States
      Tinnitus Since:
      2013
      Cause of Tinnitus:
      Unknown
      Ah rats. Hopefully there is good quality if not quantity.

      And many thanks to @Jack Straw too, I am a little slow on the uptake realizing who all is doing the heavy lifting. You all rock and have my gratitude.
       
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    13. Johan_L

      Johan_L Member

      Location:
      Sweden
      Tinnitus Since:
      05/2015
      Cause of Tinnitus:
      Noise induced
      @Markku and @Hazel,

      I realise I am past the deadline. I have not been able to follow the forums lately due to photophobia and I must limit my screen time.

      If it is not already covered in the surveys I hope it's possible to add a question: What is Bryan Pollard's view on the Round and Oval Window Reinforcement Surgery performed by Silverstein?
       
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    14. Contrast

      Contrast Member Benefactor Hall of Fame

      Location:
      Retrovile
      Tinnitus Since:
      late 2017
      Cause of Tinnitus:
      injury from noxious noise
      You can download software to dim the screenlight on your computer screen.

      Windows 10 might even have something built in with a setting called night mode.
       
    15. Hazel
      Dreaming

      Hazel Director Staff Podcast Patron Benefactor Hall of Fame Advocate

      Location:
      the Netherlands
      Tinnitus Since:
      10/2017
      Cause of Tinnitus:
      one-sided hearing loss (of unknown origin)
      Thanks, Johan! It was already on our list of questions.

      Bryan reviewed all the questions and indicated he would like to prepare properly; as he's very busy right now, the interview will probably take place in June.
       
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    16. MattR

      MattR Member

      Tinnitus Since:
      2014: Mild Hyperacusis 2019: More severe
      Cause of Tinnitus:
      Loud headphones, more recently Acoustic Shock
      I'm also very curious about this. Right now that surgery seems like the most realistic thing that could currently help hyperacusis sufferers. It's had good results supposedly, but the sample size is so small (30 people or so) that it's hard to get too excited about it without more information.
       
    17. Johan_L

      Johan_L Member

      Location:
      Sweden
      Tinnitus Since:
      05/2015
      Cause of Tinnitus:
      Noise induced
      There is a Facebook group called "Hyperacusis Surgery Success" where more information is shared, though mostly in anecdotal format.

      The papers only covered surgeries up until 2017 and there have been many done since then.
       
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    18. Jackjohnson183

      Jackjohnson183 Member Benefactor

      Tinnitus Since:
      2017
      Cause of Tinnitus:
      Ear wax removal
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