Participant Experience: Vagus Nerve Stimulation (VNS) Paired With Tones for Tinnitus

Discussion in 'Research News' started by labrat10687, Feb 2, 2015.

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    1. labrat10687

      labrat10687 Member

      Tinnitus Since:
      2000
      Was approved for the VNS Study and had the implant surgery. Will keep you updated. If I can answer any questions please let me know. Thank You.
       
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    2. Markku
      Inspired

      Markku Director Staff Benefactor Hall of Fame Team Trobalt Team Tech Team Awareness Team Research

      Tinnitus Since:
      04/2010
      Cause of Tinnitus:
      Syringing
    3. jazz
      No Mood

      jazz Member Benefactor

      Location:
      US
      Tinnitus Since:
      8/2012
      Cause of Tinnitus:
      eardrum rupture from virus; barotrauma from ETD
      This is very exciting! Tell us, do you have tonal or noise tinnitus or both?

      And what was the approval process like?

      When will your therapy begin?
       
    4. Sound Wave
      Curious

      Sound Wave Member Benefactor Team Tech

      Location:
      Finland
      Tinnitus Since:
      12/2013
      Cause of Tinnitus:
      Probably headphones
      Interesting. Keep us posted. I have a tVNS device (which I haven't really used at all) which doesn't require a surgery.
       
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    5. AnnaW
      Vegged out

      AnnaW Member Benefactor Team Research

      Location:
      London
      Tinnitus Since:
      1998
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    6. amandine

      amandine Member

      Tinnitus Since:
      july 2014
      Wow!! Please do let us know how you are getting along with thanks from all of us!!
       
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    7. labrat10687

      labrat10687 Member

      Tinnitus Since:
      2000
      Yes Markku it is that study. I had the implant in the chest near my left arm. A wire from that is under my skin up to the left side(neck) vagus nerve. To be accepted you must go through a series of hearing and tinnitus tests. They try to pinpoint just exactly the loudness & pitch of your tinnitus.

      Before you even reach this stage you must fill out many forms that will tell them what meds you are on and the history of your tinnitus. You have 2 appointments to do the tests and fill out many forms. At the end of the second appointment you are told if you have been accepted or not. Even if you have been accepted the choice is yours if you want to proceed.

      You can opt out of the study at any time. This study is very involved and will take many months. I have an appointment in 2 weeks to get the laptop with the program where I will be listening to certain tones for 2 1/2 hrs a day. Right now thats all I know. This is day 3 after the surgery and no pain.
       
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    8. Mr. Cartman
      Artistic

      Mr. Cartman Member Benefactor

      Location:
      Norway
      Tinnitus Since:
      12/2013
      Very interesting! Thank you so much for sharing your story! :)
       
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    9. labrat10687

      labrat10687 Member

      Tinnitus Since:
      2000
      Question for all of you. If you were offered this treatment would you have turned it down?
       
    10. Mr. Cartman
      Artistic

      Mr. Cartman Member Benefactor

      Location:
      Norway
      Tinnitus Since:
      12/2013
      Honestly, I would probably not have turned it down.. But thats because I think Susan Shore could be onto something.. It might be something to this dreaded nerve. Some researchers suspect it might play a role in Chronic fatigue syndrome as well..

      I will watch this thread closely :)
       
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    11. labrat10687

      labrat10687 Member

      Tinnitus Since:
      2000
      Mr. Cartman, Please fill me in on what Susan Shore is saying. Would appreciate it. Thanks.
       
    12. Mo_Mo

      Mo_Mo Member

      Tinnitus Since:
      25/11/2014
      Cause of Tinnitus:
      Unknown, Started A Week After A Cold
      Same here I would have not turned it down especially that the initial trials in Belgium had some positive results

      https://solentacoustics.wordpress.com/2014/07/31/experimental-tinnitus-treatment/

      Half of the participants noted a large improvement, with 4 of them gaining a 26dB reduction in perceivable tinnitus loudness

      26dB reduction would be amazing and that was achieved in a 20 day trial whilst the one your are currently doing is 6 weeks hence double the duration of the Initial trials, hence hopefully the results you would achieve should also be better

      How do you rate your T out of a scale of 10 and is it low or high frequency and do you have any hearing loss?
       
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    13. Mr. Cartman
      Artistic

      Mr. Cartman Member Benefactor

      Location:
      Norway
      Tinnitus Since:
      12/2013
      Its been a while since I read about her research, but from what I remember she and her research team found that people with somatic tinnitus had timing issues in their vagus nerve(s), and that stimulation of this nerve could learn the brain to cancel out the ringing, if they got the timing right. (at least from what I remember). You could probably look it up :)

      The vagus nerve could be an important piece in the puzzle of some types (if not many) cases of somatic tinnitus, if she is right :)
       
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    14. labrat10687

      labrat10687 Member

      Tinnitus Since:
      2000
      Mo Mo, Have had tinnitus for 15 years and like everyone else when it first started I was in a panic. Could mask it with basic white noise. Fast forward to 2006 and my tinnitus settled down to a point where I did not need to mask. For the next 3 years my tinnitus never changed and was easy to tolerate. In 2009 woke up one day to a much louder and very high pitched new sound. Back to the same old bs once again.

      Since then my tinnitus has increased 4 times. The latest increase my tinnitus is very high pitched and is in both ears now when up until then is was only in one ear. I have very little hearing loss. I go in the 10th to activate the microtransponder that will stimulate the vagus nerve. For this study I have a 50/50 chance that I will be getting the actual treatment because this is a study. They need to do it this way to determine if the treatment works. I will do this for 6 weeks.

      After that I will find out if I got the actual treatment or not. If not I will get the actual treatment. Remember this is a study and this is the best way to determine if the actual therapy will work. I will be given a laptop to listen to tones for 2 1/2 hours a day. But one thing is for sure I will get the actual treatment at the 6 week mark. Very involved study.
       
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    15. Rube
      Fine

      Rube Member Benefactor

      Location:
      U.S.A
      Tinnitus Since:
      7/2014
      How involved was the surgery for the implant?
       
    16. Mo_Mo

      Mo_Mo Member

      Tinnitus Since:
      25/11/2014
      Cause of Tinnitus:
      Unknown, Started A Week After A Cold
      Wishing you all the best and hope you get the actual treatment from the beginning and get a positive result
       
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    17. labrat10687

      labrat10687 Member

      Tinnitus Since:
      2000
      They implant a microtransponder that is about the size of a 9-volt battery on my left side of chest near my left arm. I don't feel a thing but make no mistake it's right underneath the skin and you can feel it. Simple solution(unlike tinnitus)is you just don't touch it. Then they attach a coil around the vagus nerve and connect the two with a small wire just under the skin. The pain,what little there was was gone in 2 days. It was an outpatient surgery. Found this on you tube.
       
    18. Vincent R
      Inspired

      Vincent R Member Benefactor

      Location:
      Sweden
      Tinnitus Since:
      09/2014
      Cause of Tinnitus:
      Acoustic trauma
      I'm very happy to see participants in this study sharing their experiences here on Tinnitustalk. Not just the method in itself is interesting, but the whole concept of reprogrammning your brain. If it works out like this, there may be other and more effective ways.
       
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    19. labrat10687

      labrat10687 Member

      Tinnitus Since:
      2000
      One can only hope Vincent. Thats why when offered this I could not turn it down.
       
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    20. Rube
      Fine

      Rube Member Benefactor

      Location:
      U.S.A
      Tinnitus Since:
      7/2014
      Thanks @labrat10687 you are very brave person to try this out. I'm glad the implant process wasn't painful. Is this study taking place in USA ?
       
    21. dan
      Chatty

      dan Member

      Tinnitus Since:
      06/2011
      @labrat10687 can the vagus nerve be damaged from the coil? and can the implant be removed without harming the nerve....?
       
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    22. labrat10687

      labrat10687 Member

      Tinnitus Since:
      2000
      Yes at 4 centers in the United States. 35 to 40 people will be accepted in total.
       
    23. labrat10687

      labrat10687 Member

      Tinnitus Since:
      2000
      I'm told the coil can be removed but it depends on the tissue that surrounds it. This type of procedure has been done for many years to help with epilepsy and depression.
       
    24. Markku
      Inspired

      Markku Director Staff Benefactor Hall of Fame Team Trobalt Team Tech Team Awareness Team Research

      Tinnitus Since:
      04/2010
      Cause of Tinnitus:
      Syringing
      @labrat10687
      are you in contact with any of the other trialees? Will you be able to know if any of them get relief from the treatment?
       
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    25. labrat10687

      labrat10687 Member

      Tinnitus Since:
      2000
      At this point I don't think I will be in contact. I go in this Tuesday for my next appointment and will try to remember to ask your question.

      This video explains it.
      Scientific Explanation of VNS Paired...
       
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    26. labrat10687

      labrat10687 Member

      Tinnitus Since:
      2000
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    27. Raindance74
      Yeehaw

      Raindance74 Member

      Tinnitus Since:
      09/2010
      What happens when the battery goes dead? Does it set off detectors at airports? If it doesnt work can they remove it? It seems somewhat invasive to me.
       
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    28. James White
      Anime

      James White Member Benefactor

      Location:
      Toulouse, France
      Tinnitus Since:
      April 2013
      Cause of Tinnitus:
      Maybe loud music. Not sure.
      I guess they are probably working on a less invasive method when this gets released, if they manage :)
       
    29. Mo_Mo

      Mo_Mo Member

      Tinnitus Since:
      25/11/2014
      Cause of Tinnitus:
      Unknown, Started A Week After A Cold
      I guess the only way to simulate the vns is to directly tapping into the vns

      mute button is supposed to do something similar and less invasive

      Also other less invasive methods such as tms, tdcs, tens and trns but these don't simulate the vns they directly try to simulate the brain
       
    30. labrat10687

      labrat10687 Member

      Tinnitus Since:
      2000
      Will make a list of your questions and get answers this Tuesday. I know after a period of time you only need to go in yearly for checkups. The following explains the surgery. An important thing to remember is that for the tinnitus treatment it onlys uses 1/100th of the electrical pulse needed for the epilepsy treatment. Have read where this type of surgery has been done over 60,000 times.


      More info.


      The device is surgically implanted under the skin on the chest. A wire is then threaded under the skin to connect the device to the vagus nerve, a large nerve that extends from the head and neck to the abdomen and commands voice (vocal cord movement) and involuntary body movements like as heart rate and food digestion.

      Once the device is active, patients will undergo combined audio therapy. During therapy, patients wear headphones and listen to a series of single frequency tones, paired with stimulation, to encouraging neurons in the brain to change their connections and behavior. The 2.5-hour session will take place five days a week during the course of 4 weeks, initially in clinic and then at home.

      To test the effectiveness of VNS to treat tinnitus, patients in the study will be randomly selected to take part in one of two groups:
      • One group will get the VNS and tone test treatment immediately
      • The other group will get the VNS, but “sham” therapy that is not expected to have a therapeutic benefit

      After six weeks, both groups will receive active test treatment.

      VNS is currently approved by the U.S. Food and Drug Administration for use in the treatment of epilepsy and depression. More than 60,000 devices have been implanted in patients with epilepsy during the past 15 years.

      Study participants
       
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