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Menieres Cochlear Implant???

Discussion in 'Your Living Room' started by sjw111, May 8, 2019.

  1. sjw111

    sjw111 Member

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    Ok here is a question for you. Can a long time MM patient who is status post laby L side and active vertigo R side with deafness get an implant (in either side) ? We all know MM has hydrops so if you stick in the electrode it is almost certain to do damage and create havoc and probably not a good hearing result. Right? Wrong. The person above is me. I was implanted at Vanderbilt two weeks ago in the R ear. (L ear was confirmed not to be an candidate due to damage done with Laby) They use an intra operative scanning protocol so ensure the wire goes into the correct scala opening. The result? See attached file. (hope the attachment works)

    i was activated yesterday. No dizziness of any kind. Initial sounds are good. Music is awesome. Houston we have liftoff.

    All being said for those who are depressed or worried about incurable MM. There is life folks. Shout out to Dr Haynes and his team at Vandy.

    Life marches on.

    Sid
     

    Attached Files:

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  2. PleaseNoDizzy

    PleaseNoDizzy Member

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    What a great report Sid. Keep us posted on how the CI works for you. As I am post-laby as well, it's reassuring to hear.
     
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  3. Bulldogs

    Bulldogs Well-Known Member

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    Thanks for the update Sid....a truly amazing photo of your inner ear with the electrode. Fascinating indeed especially if you enlarge it.

    Soooo happy for you, as hopefully the grandkids will roll in soon my friend and you will hear that first joy of them screaming for grandpa!!

    On the downside, the excuse of..I can’t hear you no longer works...lol

    You are an inspiration to me!!!
    Thanks Sid.
     
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  4. redwing1951

    redwing1951 Well-Known Member

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    What great news!! And so much hope for all of us. Thanks for sharing your journey!
     
  5. Robert Wilson

    Robert Wilson Member

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    Excuse my ignorance here, but what is the effect of this procedure?

    (All sounds like great news)
     
  6. Clare

    Clare Active Member

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    From what I've learned (and others please correct if needed): Normally sound is transmitted via hair cells in the cochlear part of the inner ear. Sound vibrations enter the inner ear and move the hair cells of the cochlea which stimulates a nerve that goes to the hearing center of the brain to be understood as language, music, etc. However, Meniere's damages the hair cells that produce signals for balance and sound, resulting in vertigo, dizziness, and deafness. Labyrinthectomy surgery (and to a degree gentamicin injections) also damage hair cells and produce imbalance and deafness.

    In a cochlear implant, a tiny wire is threaded through the cochlea. The wire is connected to a processor implanted behind the ear that picks up sound vibrations and converts them to electrical impulses. Those impulses travel along the wire through the cochlea (bypassing the hair cell function) where the nerve receives them and signals the brain. With a CI a person who is completely deaf can regain the ability to hear and communicate. My understanding is that it takes an extended period of brain training to interpret the signals in a similar way as a normal hearing person does. For people who have had a laby and are concerned about bilateral Meniere's developing with complete deafness, a cochlear implant is a bright ray of hope. In the US cochlear implants are approved only for people who have significant or complete deafness in both ears. From what I've read on this forum, Canadians can get a CI when only one side is deaf.
     
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  7. Mac

    Mac Active Member

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    Awesome news!!
     
  8. Riplip

    Riplip Member

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    Glad to hear this since I am on the road to a CI in my most active ear right now. Hoping the new amplified receiver I'm getting soon will give me a little more time before surgery. Please update as you get use to the CI. I would like to know which brand you went with and what how do you think it would impact sports and sweating? Very happy for you Sid.
     
  9. Bulldogs

    Bulldogs Well-Known Member

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    Hey Sid....I am always interested in learning about what manufacturer you chose for your CI? Was it your choice or did Vandy have a preference and recommendation for you? Did you do your own research and talk to others on your own time to draw a conclusion for yourself.

    I know they are waterproof and all that cool stuff for showers swimming ect...but is a CI something you sleep with on or do you give the brain a rest and turn it off while sleeping and power it up first thing in the morning.

    Good stuff my friend
     
  10. sjw111

    sjw111 Member

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    Hello back. CI equipment is a two beer conversation. Its a hard decision much because its something you are going to live with the rest of your life. Many just think its the electrode into your cochlear. But that is a tiny (but important) part of the implant. Most of the implant goes under your scalp over the skull and is about 1 1/2" x 3" large. Its the brains of the implant.

    There are 3 big manufacturers ....Cochlear, Advanced Bionics, and Med-El. I don't know the numbers but it seems Cochlear and AB are the leaders. I went with AB for three reasons....1- The implanted processor is programable. As things change in the future they can give everyone an update operating system. Cochlear on the other hand is hard wired and can't be changed. That was very big for me. Only 65% of the AB internal processor is even used leaving a lot of room for new future stuff 2- AB currently is more MRI compatible. But Cochlear has already announced they will be releasing one that is equally compatible. 3- The way the electrodes are wired and ability to hear music. That may be marketing but most say AB is the best if music is important. Clearly Cochlear has better externals....smaller....good technology. AB is catching up. I am fully bluetooth compatible. If its bluetooth it goes straight to my cochlea/brain. Very awesome. And very high quality.

    They all come with waterproof capabilities but its a bit of a hassle. The sound processor behind your ear is sweat proof but none are fully submersible unless you put it in a special protector case.

    I wear it for about 16 hours a day. Not while I sleep. Best to think of it as a pair of glasses. I get up. Take a shower and put it on. Then take off at the end of the day. Amount of time per day wearing it is the #1 predictor of success. You have to wear it and go in as many sound conditions as possible and really work on it. Its actually pretty tiring. Sort of like brain fog with MM. Your brain works overtime to discern the sound you just heard.

    Here is an interesting thing. When I turned on my computer with my new CI I heard a clunk clunk clunk sound. My hard drive was faulty. Called Apple. Going in next week to fix or replace. Pretty incredible.

    Mostly remember I am a newbie. Its not yet been a week since activation and only 3 weeks since surgery. So my learning curve is still very steep and will be a long and winding road.

    Forest Gump....Lt Dan you have legs....Sid you have ears.

    S
     
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  11. June-

    June- Well-Known Member

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    Thank you for this very detailed information. This may be in the future for a lot of us. Good luck going forward.
     
  12. Riplip

    Riplip Member

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    Thank you for the update. Glad it is working out well for you
     
  13. Jimii

    Jimii Member

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    You said bluetooth compatible? You could listen to music that no one else could hear?
    Is that correct?
    Thanks for sharing!

    Jim
     
  14. sjw111

    sjw111 Member

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    Jim, yes that is correct. Its very awesome. Being able to have digital hearing all along the way is amazing. With other applications (like TV) implant equipment also has FM transmission where you can have the sound separate from those hearing it via speakers. TV audio is clear and individualized using it. Im still a CI newbie. So it is a lot of work retraining the brain. You basically go from deaf to hearing impaired. Which is a BIG improvement. Now I have to work on the impairment. Peace.
     
  15. AnneT

    AnneT Active Member

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    So it sounds like Cochlear Implant after gentamicin is a possibility if necessary?
     
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  16. redwing1951

    redwing1951 Well-Known Member

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    AnneT CI's can be implanted if needed after gent and laby as long as the cochlear is not removed.
     
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