Recruiting Pilot Study of Deep Brain Stimulation (DBS) in Area LC for Chronic Tinnitus

To test the safety and effectiveness of DBS for patients with intrusive tinnitus.

    1. Tinnitus Talk
      Balanced

      Tinnitus Talk Knowledge Base

      Tinnitus Talk submitted a new resource:

      Pilot Study of Deep Brain Stimulation (DBS) in Area LC for Chronic Tinnitus - To test the safety and effectiveness of DBS for patients with intrusive tinnitus.

      Read more about this resource...
       
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    2. Beste
      Disappointed

      Beste Member

      Tinnitus Since:
      02/16/2016
      Cause of Tinnitus:
      Benzo/Clonazepam, Stress
      I'm really into this treatment since I always thought the real cure will come with a surgery. Is there news to this?
       
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    3. Vaba
      Shitfaced

      Vaba Member

      Location:
      New New York
      Tinnitus Since:
      Unknown
      Cause of Tinnitus:
      Unknown. Gradual, Progressive
      They're still recruiting. I had a brief correspondence with them two months ago and they are willing to do the procedure on me. I'm not going to do it yet, or maybe ever.

      If you're crazy enough to participate in a pilot study (one where they have only anecdotal evidence to support that invasive brain surgery MIGHT help us), then you can look up the study and shoot an email to Sarah Wang.
       
      • Agree Agree x 1
    4. Dubbyaman
      Angry

      Dubbyaman Member

      Location:
      Northern Indiana
      Tinnitus Since:
      10/2014
      Cause of Tinnitus:
      Excessive loud noise
      Steven Cheung talks about this process in depth in this video. What I found promising is he mentions the results of the 1st patient. The guy's T is completely silent 30% of the time and non bothersome for the rest. He starts talking about 4 minutes in and goes on for about a half hour. It's really good.
      The Brain at War 2015: Session 1 - New...
       
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    5. Dubbyaman
      Angry

      Dubbyaman Member

      Location:
      Northern Indiana
      Tinnitus Since:
      10/2014
      Cause of Tinnitus:
      Excessive loud noise
      @Vaba Does your t cycle or is it the same sound all the time?
       
    6. Ecip

      Ecip Member

      Location:
      Edmonton, AB
      Tinnitus Since:
      4.11.2015
      Cause of Tinnitus:
      Still unknown... possibly noise exposure?
      This is a very interesting video, thanks. Who knows what will come of this.
       
    7. rid0871

      rid0871 Member

      Tinnitus Since:
      may of 2015
      Cause of Tinnitus:
      had my neck adjusted
      are they still looking for people for this and if so how do you get ahold of them
      thanks
      Rick
       
    8. Dubbyaman
      Angry

      Dubbyaman Member

      Location:
      Northern Indiana
      Tinnitus Since:
      10/2014
      Cause of Tinnitus:
      Excessive loud noise
    9. Alue

      Alue Member

      Tinnitus Since:
      01/2016
      Cause of Tinnitus:
      Acoustic Trauma
      They were willing to do it on you after a 'brief correspondence'?
       
    10. Vaba
      Shitfaced

      Vaba Member

      Location:
      New New York
      Tinnitus Since:
      Unknown
      Cause of Tinnitus:
      Unknown. Gradual, Progressive
      I totally lied to you guys and I'm not really sure why, lmao.What really happened was was that they were showing a lot of interest in recruiting me for the procedure. They asked for my audiogram and other tests, what my tinnitus sounds like and its severity, where I live and my age. I seemed like a good candidate based on my audiogram and other info, I guess, because they quickly responded and asked me to complete the TFI (tinnitus functional index). I didn't complete it because I got cold feet... I would assume the next step was accepting or denying me for the procedure.
       
    11. Dubbyaman
      Angry

      Dubbyaman Member

      Location:
      Northern Indiana
      Tinnitus Since:
      10/2014
      Cause of Tinnitus:
      Excessive loud noise
      @Vaba what does your tinnitus sound like?
       
    12. Alue

      Alue Member

      Tinnitus Since:
      01/2016
      Cause of Tinnitus:
      Acoustic Trauma
      I see, my point being, it sounds like they are kind of desperate for volunteers.
       
    13. Beste
      Disappointed

      Beste Member

      Tinnitus Since:
      02/16/2016
      Cause of Tinnitus:
      Benzo/Clonazepam, Stress
      But isn't it weird that they cannot find almost any even if T sufferers are so willing to try any treatments? It sounds skeptical to me.
       
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    14. Vaba
      Shitfaced

      Vaba Member

      Location:
      New New York
      Tinnitus Since:
      Unknown
      Cause of Tinnitus:
      Unknown. Gradual, Progressive
      In my left ear, it's a "dirty" pure electrical tone ("EEEEE...") What I mean by "dirty" is I can't match the pitch, and sometimes the pitch changes for days and days at a time. It changes immediately and violently with jaw or neck movements (swallowing, chewing, or turning). This ear feels "full" and pressurized when I'm in a quiet environment.

      My right ear is a thin metallic whistle, sort of like "aaaaEaaEaaaaaaEE..." it's hard to describe, but it changes between 2 or 3 pure tones 24/7. If I push on my right ear, hang upside down, or do the valsalva maneuver (all of which increase the pressure in the ear) the sound will always change to a quieter pure tone ("eeeee...")

      Being a total shut in with no noise exposure apart from occasional headphone use, I have little to no hearing loss, and many jaw, muscular, and postural problems from lying around all day.

      I definitely got that vibe when talking to them. This contributed to my cold feet.

      It's not weird when you realize that the procedure that they're doing is DBS, which is an invasive brain surgery that is not without its risks, and is used primarily for cases of Parkinson's or other types of electrical hyperactivity in the brain, such as essential tremor. This is also a pilot study, which means that the people who are being operated upon are the first group of people ever to receive DBS for the off-label treatment of tinnitus, and this trial only exists because of anecdotal evidence that DBS can help tinnitus.

      There were a few anecdotal reports from Parkinson's patients who also had tinnitus, (a very small group of people) that said that the DBS implant reduced or obliterated their pre-existing tinnitus. This group of 10 recruits for this pilot study are basically lab rats, the people running the study have no idea if it will work, as their hypothesis (that DBS can stop tinnitus) is based only upon anecdotal evidence, hence the word "pilot."

      If what I'm trying to say still isn't clear, think about the pilot episode of a TV show. The cheaply made, hastily-thrown together low budget expo that the producers of the show make to convince a TV network that their show is worthy of being on the air. This study is basically the surgical equivalent to the pilot of a TV show.

      I personally don't want them to open up my brain based on only scattered reports of success... I can't imagine many other people would be willing to put their brain under the knife, risking infection, for a procedure that might not even work.
       
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    15. Ecip

      Ecip Member

      Location:
      Edmonton, AB
      Tinnitus Since:
      4.11.2015
      Cause of Tinnitus:
      Still unknown... possibly noise exposure?
      This is definitely for people who have severe tinnitus. If you can still go throughout your day and hold a job, this isn't for you.
       
      • Agree Agree x 1
    16. Alue

      Alue Member

      Tinnitus Since:
      01/2016
      Cause of Tinnitus:
      Acoustic Trauma
      Being able to endure the day and keep a job doesn't define the severity of tinnitus. Some of us don't have the choice to not work.
       
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    17. Ecip

      Ecip Member

      Location:
      Edmonton, AB
      Tinnitus Since:
      4.11.2015
      Cause of Tinnitus:
      Still unknown... possibly noise exposure?
      Yea that's true, but I can imagine most know what I meant.
       
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    18. Hotaru
      Depressed

      Hotaru Member

      Tinnitus Since:
      12-15-15
      Cause of Tinnitus:
      URI/ETD
      There's not enough info. Where is this taking place? Where is the website explaining this?
       
    19. Dubbyaman
      Angry

      Dubbyaman Member

      Location:
      Northern Indiana
      Tinnitus Since:
      10/2014
      Cause of Tinnitus:
      Excessive loud noise
    20. Leqi

      Leqi Member

      Location:
      Wellington,NZ
      Tinnitus Since:
      April 2014
      Cause of Tinnitus:
      Neomycin Ear drop
      Very interesting as I have same experiences and it always puzzles me

      https://www.tinnitustalk.com/thread...arily-decrease-my-tinnitus.14937/#post-187567
       
    21. dan
      Chatty

      dan Member

      Tinnitus Since:
      06/2011
      "Dear Dan,


      Without having tried a prior therapy, we are currently not able to consider you for study enrollment. If you decide to try a less-invasive therapy first and are able provide documentation of its effect (or lack of effect) after the therapy, please feel free to contact me after and we can re-evaluate your candidacy. Thank you again for your interest in participating in our clinical trial.


      Best,

      Sarah"
       
    22. linearb
      Psychedelic

      linearb Member Hall of Fame

      Location:
      East Coast USA
      Tinnitus Since:
      1998
      Cause of Tinnitus:
      karma
      in a really pragmatic way, it does. If I lobotomized you, you would not be able to keep your job; therefore, you are less disabled by your condition than someone who is lobotomized. I'm not downplaying the severity of your misery in any way.

      As far as I know, they only wanted 10-20 people for this study; interesting that they are still recruiting. There are a lot of things I'd try to impact my tinnitus, but experimental brain surgery isn't one of them. Until the mechanism is understood, it seems quite possible that this could make your tinnitus worse -- indeed, there's at least one study I'm aware of where DBS implants for parkinson's led to the development of tinnitus.

      Personally, I'd consider brain surgery for my tinnitus when they've done it to ~1,000 people already and have 5 and 10 year outcomes available in published articles.
       

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