My Cochlear Implant (Part I)

November 10, 2010 at 10:36 pm 10 comments

Tony and SheriMy disability, Friedreich’s Ataxia (FA), presents many different problems.  The most noticeable one being a loss of balance; so much so that I use a wheelchair or scooter for my mobility in just about every situation that presents itself.  I have worked in a Center for Independent Living (CIL) for over six years now and in that time, I have grown increasingly comfortable with my physical disability.  Of course, there are still situations that get me very frustrated and angry but that’s to be expected. 

In addition to a loss of balance, my FA (and I say “my FA” because FA can be pretty much unique for anyone that has it) presents with a major loss of hearing over time.  Now because I work in a CIL as a counselor/mentor I do need to be a good listener.  Working in a CIL has also made me quite aware that not being able to hear is not the end of the world and it can, in fact, open up doors that seemed at earlier points to be closed. 

But the fact remains that I have lived for over 40 years in the hearing world and so I know what I am missing by not hearing and I want those things back.  Even though it was difficult with my FA, I have a Music Education degree from James Madison University and a Master of Education degree from George Mason University.  I have definitely found that music can be a very visual art and one can experience many of the same emotions from watching and feeling a performance as usually come with hearing it.

But again, the fact remains that I did hear fine for the majority of my life and I want to do so again.  That will, of course, help me in my personal life (I am married to a wonderful woman who, due to her being a quadriplegic from a diving accident, is unable to use ASL so I need to hear to  be able to communicate effectively with my wife) but also in my professional life.  I need to listen to many clients and I need to be able to use the phone and attend meetings that don’t have Communication Access Realtime Translation (CART) which is, basically, live captioning of everything that is said.

Cochlear ImplantFor those reasons, and many others, I began researching cochlear implants.  Basically a cochlear implant is like a small computer that is implanted in the cochlea of the ear and it directly stimulates the auditory nerve bypassing any damaged portion of the ear.  However, according to research done by my team of doctors and audiologists, nobody with FA had ever tried a cochlear implant to correct the hearing issues associated with FA.  But the potential benefits outweighed the potential risks and I decided to go forward with the surgery.

The surgery (at Johns Hopkins in Baltimore, MD) was not too daunting (about 2.5 hours) and it was done on an outpatient basis so I went home later that afternoon and spent the next six days recovering in Virginia. 

At this time, I do not know whether or not it will work; there is usually about four weeks between getting the implant and activation of the implant.  Until then I’m only hearing out of one ear (left) and I’m leaning heavily on my FM system and T-coil.  My activation is scheduled for November 16 so I don’t have too much longer to wait.  Here’s hoping that it does work for me, and even if it does there is still an expected learning period of about one year.  So this is very much a work in progress. 

I’ll write more after the activation.

By Tony Trott, ECNV Peer Mentor & Editor

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Entry filed under: Deaf/HoH -- Vlog, Health, Other. Tags: , .

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10 Comments Add your own

  • 1. Jim Guy  |  November 12, 2010 at 9:02 pm

    Tony,

    Hear hear!

    With crossed fingers,

    – Jim

    Reply
  • 2. judithguystudio  |  November 12, 2010 at 10:02 pm

    Thanks for sharing this, Tony. All our fingers are crossed too.
    Judy

    Reply
  • 3. Rosemary Ciotti  |  November 12, 2010 at 10:12 pm

    Tony, thank you for having the courage to share your experience with us. This is an experience most wonder about but dare not ask too many questions. I am waiting anxiously to hear that this experiment was successful. Somewhat selfishly I am looking forward to the possibility of open gab sessions and really being entertained by your wit that we have been denied in group settings for too long 🙂

    Reply
  • 4. mary Creane  |  November 13, 2010 at 3:47 am

    T
    You know we are all anxiously awaiting the results.
    Love and love
    m

    Reply
  • 5. Ruchika lalwani  |  November 16, 2010 at 6:28 pm

    Tony you took a good decision. Now we will all have fun in Thanksgiving Lunch on Mon22. Keep it up Tony!

    Good Luck with your Hearing Tony
    My prayers are with you

    Ruchika

    Reply
  • 6. Helen  |  February 17, 2012 at 1:05 am

    Hi Tony
    I have a daughter with fa and she too is being evaluated for cochlear implants. Would you mind sharing your experience with us?
    Thanks so much
    Helen

    Reply
    • 7. ecnvecnv  |  February 17, 2012 at 10:52 am

      Helen,

      I have tried to write fairly regularly over the past year and a half on this blog about my experiences with my CI, so I hope you can find thhose entries (the title of each entry begins with “My Coclear Implant…). You can also feel free to contact me directly at tonyt@ecnv.org about my CI or any other aspect of FA. Thanks for reading and I hope to hear from you.

      Good luck to you and your daughter with the CI.

      Tony

      Reply
  • 8. Alec mackay  |  February 28, 2012 at 7:08 pm

    Hello Tony and thanks for your responce on the 17 Feb to my wife Helen. Forgive me if my internet skills are not up to scratch, but i couldnt find your updates about your experieces with the CI. is there a specific place we should be looking, as a search under My Cochlear … didnt seem to yield any success.

    all the Best
    Helen’s husband (Alec)

    Reply
  • 10. Alec mackay  |  February 29, 2012 at 2:40 pm

    Tony thanks very much for the links, it looks as though you have had a very long journey that is continuing, and it is great to hear your hearing continues to improve. Best regards and thanks again.
    Alec

    Reply

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