Monday, May 05, 2008

Anxiety About Going Bilateral-and Encouragement

[I posted this 4/28/08 on the Advanced Bionics Hearing Journey Forum where peers discuss CI issues and encourage each other. I got SO many wonderful responses! People there totally "get it" and are instantly willing to come along beside anyone with questions. I love this company. :) ]
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I was able to hear normally until about age 30. I got my first pair of HA's at age 33. My loss progressed and in 2001 my left ear crashed. I finally got the CI in my left ear in 2006. This past February I learned my right ear has now crashed also, going from 56% comprehension in June to 12% now. I was devastated and wasn't ready to even think about a second CI.

But I came around in a few weeks and scheduled the surgery for July (to be after a wonderful trip planned with my husband!). Now I am panicking again--the thought of having ZERO sound with the processors off at night and first thing in the morning feels terrifying. I keep telling myself that people born deaf have handled it for their whole lives. It's not impossible. I just need to learn the necessary coping skills and assistive technology (like strobes for doorbell, smoke alarm, phone, etc).

What stabbed my heart this morning was being able to hear my husband speak to me as I got up. I do have a little bit of residual hearing in my non-CI ear and can understand him if he's quite close to that ear. That will be GONE when I get this second CI. What do I use then--a paper and pencil?!? It's just killing me. Maybe it is just a loss I still need to grieve, still need to walk through the sadness of losing something I love.

Another question is, will I really lose all the residual hearing? I have heard stories of surgeons who can insert the electrode "carefully enough" that it doesn't destroy the haircells, and not all natural hearing is lost. Someone at my hearing support group meeting today asked if the fluid in the cochlea drains when the electrode is inserted and is that why the natural hearing is lost--anybody know about either of these?
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People jumped in with their own stories of going bilateral as well as encouragements that I can wait if I am not ready--but the rewards will far outweigh any loss. And...I will very likely lose the rest of the hearing in that ear anyway, if the pattern of my hearing loss progression so far is any indication. And the answer to that last question is that retaining any residual hearing is quite rare. (and if anyone promises me that, run in the opposite direction!)

This is leading to much pondering...but that can wait for another post.

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