Anybody Here with Cochlear Implants?

Discussion in 'Support' started by Michael2013, Apr 26, 2018.

    1. Michael2013
      Happy

      Michael2013 Member

      Tinnitus Since:
      September 2013
      I'm meeting with a CI surgeon this coming week to discuss whether getting a CI is something that would benefit me or not. I'm curious to hear others' experiences. Do you have a Cochlear Implant? If so, can you share your story? I'm especially curious to hear whether it has impacted your tinnitus in any way. And if you do have a CI, how long were you deaf in that ear prior to implantation? How much speech can you understand now?

      I'm probably a more unique case in that I still have 100% speech recognition scores in my good ear and would be implanting my bad ear which has been profoundly deaf since I was a small child. It's hard to find many people in a similar situation (though there are some).

      -Mike
       
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    2. Error404

      Error404 Member

      Location:
      York, UK
      Tinnitus Since:
      90's
      Cause of Tinnitus:
      Deaf
      Hi Mike,

      Sorry this reply is a bit late.

      I have one CI due to progressive sensorineural deafness. I had it at age 33 (36 now) and heard everything within 10 seconds of being activated. I gather this is NOT the norm, and I was told to expect beeps and robotic voices, possibly for weeks/months as your brain learns how to adjust. My speech scores went from 18% to 95% and my audiogram with it on is about 15-20 decibels below the norm - I gained around 70db across all frequencies.

      I think I did well because I had experience of sound. It's people that were born with no hearing at all that are likely to take more time to adapt.

      Now ... with regard to tinnitus, I'm presently having an awful time with 24/7 low frequency T that began in Feb. I am on meds to sleep, antidepressants, valium as needed. Sounds are distorted with my implant, my voice echoes/booms, and other sounds are literally reverberating through my head: it's obviously horrific. However ... I am getting a new map in less than two weeks which should improve things. It's quite possible I've 'outgrown' the settings I've had for the past 3 years. I can't afford to panic until I've exhausted all my options and a new map is just the beginning. If that doesn't work, then they should start looking for faults etc. Please don't let this put you off. I've had 100% suppression of my high frequency T with it on.
       
      • Informative Informative x 2
    3. GregCA
      Jaded

      GregCA Member Benefactor Hall of Fame

      Tinnitus Since:
      03/2016
      Cause of Tinnitus:
      Otosclerosis
      Wow that's a great outcome! Congrats!
      How does the CI compare vs natural hearing? (that you presumably still have in the other ear?)
       
      • Good Question Good Question x 1
    4. Error404

      Error404 Member

      Location:
      York, UK
      Tinnitus Since:
      90's
      Cause of Tinnitus:
      Deaf
      For me, it's very much like natural hearing (what I can remember of it!).

      I have a profound loss in my other ear so only really hear very loud low frequency sounds. I use a hearing aid, but that's more to provide a sense of balance and to help me better localise where sounds are coming from.
       
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    5. GregCA
      Jaded

      GregCA Member Benefactor Hall of Fame

      Tinnitus Since:
      03/2016
      Cause of Tinnitus:
      Otosclerosis
      Wow! That's a fantastic outcome. So you are able to discriminate pitch?
       
    6. Error404

      Error404 Member

      Location:
      York, UK
      Tinnitus Since:
      90's
      Cause of Tinnitus:
      Deaf
      Sure. My hearing level and ability to discriminate sounds when its on is comparable to, say, an elderly person who doesn't quite catch everything on the t.v or the entire conversation. Which is why I'm particularly upset by whatever's happening to me now as, on some days, it's just unusable. Keep telling myself the worst possible outcome is reimplantation and we're a long way from that yet. Gotta start with the reprogramming as if that suppresses most/all of this new tinnitus, I obviously won't get all the ridiculous echo-booming-distortion effects.
       
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    7. AUTHOR
      AUTHOR
      Michael2013
      Happy

      Michael2013 Member

      Tinnitus Since:
      September 2013
      Thanks for sharing. Yes, it sounds like you had very good results at activation. I hope an updated mapping will help with the latest difficulty you are having.

      Did you have any side effects or tinnitus from the surgery itself? Or did the intrusive tinnitus come much later after surgery?
       
    8. 1MW
      No Mood

      1MW Member

      Tinnitus Since:
      2008 but cured and relapsed from benzos
      Cause of Tinnitus:
      ssnhl/benzos/unknown
      I have deafness from 1 ear but the deaf ear has no tinnitus.
      The good ear has near normal hearing and tinnitus & hyperacusis.
      If you hear from 1 ear don't go for CI.
       
    9. AUTHOR
      AUTHOR
      Michael2013
      Happy

      Michael2013 Member

      Tinnitus Since:
      September 2013
      Why not? Is this based on personal experience?
       
    10. Contrast

      Contrast Member Benefactor Hall of Fame

      Location:
      Retrovile
      Tinnitus Since:
      late 2017
      Cause of Tinnitus:
      injury from noxious noise
      This is very unsual, how loud is your tinnitus?
       
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    11. AUTHOR
      AUTHOR
      Michael2013
      Happy

      Michael2013 Member

      Tinnitus Since:
      September 2013
      Just wanted to post an update -- I had cochlear implant surgery this past Friday. It has only been two days, but I'm happy to report that I don't currently have any new tinnitus as a result of the surgery. That was one of my biggest fears with it. Just some dull pain and slight dizziness.
       
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    12. GregCA
      Jaded

      GregCA Member Benefactor Hall of Fame

      Tinnitus Since:
      03/2016
      Cause of Tinnitus:
      Otosclerosis
      That's great! And since you have natural hearing in your "good ear" you're going to be able to help a lot understand how CIs "sound"!
       
    13. Contrast

      Contrast Member Benefactor Hall of Fame

      Location:
      Retrovile
      Tinnitus Since:
      late 2017
      Cause of Tinnitus:
      injury from noxious noise
      did your tinnitus reduce after the CI? Keep us updated if it does fade.
       
    14. AUTHOR
      AUTHOR
      Michael2013
      Happy

      Michael2013 Member

      Tinnitus Since:
      September 2013
      Yeah, the hope is my natural hearing can help my CI ear learn the sound. With the long term deafness on that side I will need all the help I can get.
       
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    15. GregCA
      Jaded

      GregCA Member Benefactor Hall of Fame

      Tinnitus Since:
      03/2016
      Cause of Tinnitus:
      Otosclerosis
      I hope it goes well. Good luck to you!
       
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    16. AUTHOR
      AUTHOR
      Michael2013
      Happy

      Michael2013 Member

      Tinnitus Since:
      September 2013
      My tinnitus has actually faded over the years to where I barely hear it anymore. Usually when I do, it’s in quiet and only lasts a min or so. I just get busy doing other things and it just goes away.
       

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