Lenire — Bimodal Stimulation Treatment by Neuromod

Discussion in 'Treatments' started by Tinnitus Talk, Apr 20, 2019.

    1. Lilah

      Lilah Member Benefactor

      Location:
      USA
      Tinnitus Since:
      12/2018
      Cause of Tinnitus:
      Unknown, Lupus
      Although anonymous, some people seem to have their first names, birth years, etc. as part of their usernames (the profile also contains other information such as location, tinnitus since, etc.)...a lot of people have also provided the dates and times of their appointments.

      So, Neuromod may easily put two and two together and figure out the person based on this information.

      Since this thread is public and no username is required to view, I am sure Neuromod is checking this thread frequently and it won't be difficult to figure out who is who. Since people don't have their hands on the device yet (although accepted), they may be fearful that Neuromod might find some reason to exclude them.

      A bit too cautious I think, but some people might have this fear for whatever reason.

      They may also be fearful that they accidentally say something that puts them under the exclusion criteria.
       
    2. Markku
      Inspired

      Markku Founder Staff Podcast Patron Benefactor Hall of Fame Advocate

      Tinnitus Since:
      04/2010
      Cause of Tinnitus:
      Syringing
      I agree. I greatly doubt they would do detective work like you described.

      They are a for-profit entity, they are not trying to do their best to find ways to exclude people. They will trust what people tell them in the questionnaire and at the appointments. IMHO.
       
      • Agree Agree x 7
    3. ruud1boy

      ruud1boy Member Benefactor

      Location:
      Huddersfield, UK
      Tinnitus Since:
      c.2006
      Cause of Tinnitus:
      An enthusiastic youth
      It's not beyond the realms of possibility that they could say to people visiting them for an assessment 'we'd rather you didn't post stuff online about your treatment experience'. That's not paranoid fruitcakery, it's just eminently possible for a commercial entity in the position they're currently in.
       
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    4. Markku
      Inspired

      Markku Founder Staff Podcast Patron Benefactor Hall of Fame Advocate

      Tinnitus Since:
      04/2010
      Cause of Tinnitus:
      Syringing
      This just isn't true.

      We've (@Hazel most recently) been in touch with them and they have not expressed any wishes about people not sharing their experiences.

      We even told them about our Lenire User Experience Group (and they had good constructive feedback to give on that).

      They did say they are not going to get involved in the discussions themselves, but that's the extent of it.
       
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    5. Clearance

      Clearance Member

      Tinnitus Since:
      03/2019
      Cause of Tinnitus:
      Loud music
      Well they never said to that to me, so be quiet with your idiotic comments please.
       
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    6. ChrisBoyMonkey

      ChrisBoyMonkey Member Podcast Patron

      Location:
      Los Angeles, CA
      Tinnitus Since:
      04/2019
      Cause of Tinnitus:
      U.S. Army/Field Artillery Veteran
      Respect people's right to privacy, or at least the attempt of it. In this day and age, privacy is very hard to retain. There are no indications this is something being forced on them, but a choice on their part.

      If people wish to be anonymous, so be it. It is their decision. Appreciate any information they choose to share through anyone else.
       
      • Agree Agree x 8
    7. El BUZZ
      Buzzed

      El BUZZ Member

      Tinnitus Since:
      2015
      Cause of Tinnitus:
      Loud music consumption plus acoustic trauma.
      I thought tinnitus was maybe linked with floaters... It seems to be definitely linked with PARANOIA.
       
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    8. Allan1967

      Allan1967 Member Benefactor

      Tinnitus Since:
      1997
      Cause of Tinnitus:
      Ear infection
      Me neither. In fact no hint of that whatsoever.

      Way I see it is some people are entering into a €2,000 or €3,000 contract for treatment and understandably they don't want anything to affect that relationship whilst it's on-going.

      That doesn't stop people sharing their experience anonymously through a trusted source like @Markku or @Hazel etc. however.
       
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    9. Daniel Lion
      Ape-like

      Daniel Lion Member Benefactor

      Location:
      se asia
      Tinnitus Since:
      2017
      Cause of Tinnitus:
      Noise trauma, hearing loss
      Good luck Allan,

      I feel a strong connection to your plight and know you have been tortured.

      I struggle everyday, and am as brave as I can be so my children can have a decent childhood, that involves fun and play. This illness has absolutely ripped me apart.

      Never been on Facebook, doesn’t sound like a big loss.

      Praying your treatment is awesome and you can get back some of what you lost.

      Sincerely, Daniel
       
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    10. GlennS

      GlennS Member

      Tinnitus Since:
      1992
      Cause of Tinnitus:
      Loud music
      I would agree with that. Sort of like Godwin's Law where all threads eventually talk about Hitler, it seems that tinnitus threads eventually gravitate towards conspiracy theories (R David Case and his Tinnitus Mix being the last stop on the one-way street to nuttery).
       
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    11. Agrajag364

      Agrajag364 Member Benefactor

      Tinnitus Since:
      09/2017
      Cause of Tinnitus:
      Unknown
      Maybe three months. I understand that it varies a lot though. It depends on whether modifications to the paper and data are asked for by the reviewers. Neuromod posted on Twitter in October 2018 saying they were shortly going to submit the results of TENT-A1 for publication. Maybe they decided to wait til TENT-A2 was ready to write up as well, or maybe the reviewers wanted more/modified data from TENT-A1.

      Screenshot 2019-07-04 at 19.56.06.png
       
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    12. Jazzer

      Jazzer Member Benefactor Hall of Fame

      Location:
      UK
      Tinnitus Since:
      1/1995
      Cause of Tinnitus:
      Noise
      Very best wishes Allan.

      Together with my good mate @Daniel Lion I sincerely hope good things come out of this for you, and I truly wish for improvements for Daniel also.

      You guys are both so young to be suffering in this ‘god-forsaken’ way.

      What bastard things this wretched life can throw at us,

      love
      Dave x
       
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    13. david c

      david c Member

      Tinnitus Since:
      01/2012
      Hope that your Lenire treatment goes well @Allan1967 and that you continue to update us about it - whether directly or anonymously.

      Sorry to hear that you've been locked out of Facebook - I wonder if that's anything to do with the BTA?

      I note that you had made some really good criticisms of them on their Facebook page and they do like to censor anybody with a different viewpoint and whose criticism might impact on their money-raising.
       
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    14. JohnAdams
      Starving

      JohnAdams Member Benefactor Hall of Fame

      Location:
      here
      Tinnitus Since:
      it started.
      Cause of Tinnitus:
      hearing loss
      What device?
       
    15. eagerUser

      eagerUser Member

      Tinnitus Since:
      09/2018
      Cause of Tinnitus:
      Stress, Pressure
      I wish all the people success and huge improvement using Lenire.

      You guys just concentrate on your health and stay positive as it makes a huge difference. I totally believe trusting your doctor or your treatment can really change the results.

      Best wishes for all
       
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    16. KotaDomowa
      Dreaming

      KotaDomowa Member

      Location:
      Poland
      Tinnitus Since:
      Februar 2018
      Cause of Tinnitus:
      Unknown
      Do I understand correctly that people who already had their assessment visit have an agreed date for receiving the device?
       
    17. Allan1967

      Allan1967 Member Benefactor

      Tinnitus Since:
      1997
      Cause of Tinnitus:
      Ear infection
      It's probably more to do with my trolling!

      Seriously annoyed. I've uploaded multiple photos of myself and they keep rejecting it. I even uploaded one of Zuckerberg and they rejected that one!

      A BTA rep is going to be at my next local TSG meeting. Thinking of going along and firing some tough questions at him/her.
       
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    18. Allan1967

      Allan1967 Member Benefactor

      Tinnitus Since:
      1997
      Cause of Tinnitus:
      Ear infection
      I'm back in mid July to collect mine.
       
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    19. Autumnly
      Wishful

      Autumnly Member Podcast Patron Benefactor Hall of Fame Advocate

      Location:
      Germany
      Tinnitus Since:
      July/August 2013
      Cause of Tinnitus:
      Noise induced
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    20. Tinniger

      Tinniger Member Benefactor

      Location:
      Germany
      Tinnitus Since:
      06/2017
      Cause of Tinnitus:
      increasingly uncertain, maybe noise, maybe somatic ?
      First of all, I'd like to apologize for asking these simple questions.

      I didn't really understand what ideas of tinnitus the "makers" of Lenire have.

      Does anyone already know anything about inclusion and exclusion criteria for treatment?
      Unilateral or bilateral tinnitus?
      Noise damage or no noise damage?
      Hearing loss or no hearing loss?
      Presence of hyperacusis or not?
       
    21. BigNick

      BigNick Member

      Tinnitus Since:
      11/2018
      Cause of Tinnitus:
      Unknown
      I've been assessed and am going ahead.

      They openly acknowledged that whilst some patients had excellent results others had no improvement and to manage expectations.

      That's the reality of it. For me the reward is worth the risk.
       
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    22. Allan1967

      Allan1967 Member Benefactor

      Tinnitus Since:
      1997
      Cause of Tinnitus:
      Ear infection
      When do you go back?
       
    23. BigNick

      BigNick Member

      Tinnitus Since:
      11/2018
      Cause of Tinnitus:
      Unknown
      August 6th.

      Best of luck mate.
       
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    24. Agrajag364

      Agrajag364 Member Benefactor

      Tinnitus Since:
      09/2017
      Cause of Tinnitus:
      Unknown
      Did they give you any odds of improvement?
       
    25. annV
      Fine

      annV Member

      Tinnitus Since:
      2005
      Cause of Tinnitus:
      unknown - possibly hereditary
      @carlover

      Will you be trying Lenire? You've suffered for decades, you deserve relief!
       
    26. JohnAdams
      Starving

      JohnAdams Member Benefactor Hall of Fame

      Location:
      here
      Tinnitus Since:
      it started.
      Cause of Tinnitus:
      hearing loss
    27. eagerUser

      eagerUser Member

      Tinnitus Since:
      09/2018
      Cause of Tinnitus:
      Stress, Pressure
      If you're talking about Dr. Shore's device, allegedly she is planning to launch it the next year and she has a new clinical trial starting soon (now?).
       
      Last edited: Jul 4, 2019
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    28. ChrisBoyMonkey

      ChrisBoyMonkey Member Podcast Patron

      Location:
      Los Angeles, CA
      Tinnitus Since:
      04/2019
      Cause of Tinnitus:
      U.S. Army/Field Artillery Veteran
      It was revealed in an email from her on a different thread she hopes to commercialize it next year, even though the phase 2 trial is still in progress and accepting trial patients.
       
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    29. Redknight

      Redknight Member Benefactor

      Location:
      Lisburn, N.Ireland
      Tinnitus Since:
      03/2019
      Cause of Tinnitus:
      Unknown
      I'm not saying I will or won't be anonymous after my appointment or that I care whether Neuromod knows who I am; but all of our appointment dates were published here publicly, it would be pretty easy to figure out who we are to be honest.
       
    30. Candy

      Candy Member Benefactor Advocate

      Tinnitus Since:
      06/2016
      Cause of Tinnitus:
      Unidentified
      People were talking about 2023, now it’s 2020? Don’t get it...
       

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