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(NL-0001) Not Listening (yet!)

Posted Mar 03 2009 12:00am

Today I received an e-mailed that let me know my insurance has approved a cochlear implant procedure and now my doctor is asking for a date to schedule the operation.  

Some background about me.  I have (most probably) according to the doctors, Waardenburg syndrome. Here's the technical description from the web:

"As a genetic disorder, Waardenburg syndrome (WS) is passed down from parent to child much like hair color, blood type, or other physical traits. A child receives genetic material from each parent. Because Waardenburg syndrome is a dominant condition, a child usually inherits the syndrome from just one parent who has the malfunctioning WS gene. Actually, there is a 50/50 chance that a child of an individual with WS will also have the syndrome. People with WS may also have distinctive hair coloring, such as a patch of white hair or premature gray hair as early as age 12."

I know I had gray hair as early as 7th grade.  The barber pointed it out to me and thought that it was quite remarkable that a pre-teen should have already gone gray!  And my eyes, while "blue-ish" when I was younger, are now cold-steel-gray. My dad and my sister both have the same hearing problem I have, but my brother had no hearing loss. So, given the family history, that's why (in the absence of a genetic test) that the good doctors think I have WS. Makes sense to me.

I decided to get an CI (Cochlear Implant) because my hearing has really degenerated in the last six months.  I have been a pretty good lip reader for the last 15 years, but it's becoming near impossible to have meaningful conversations with folks that I don't know. And my hearing loss is very hard on my wife, who is not a native speaker of English.  And my son, who is three years old, will speak both Chinese and English.  I want to be able to converse with him in both languages if at all possible.

I started the CI assessment in December of 2008.  Although I know that it is not exactly the case, it does seem to me that it's been a series of examinations and going to different specialist just so everyone can tell me I'm deaf !

First I had a regular hearing test, then a CAT scan of my inner ears. After that, I was mistakenly sent for an external hearing aide evaluation (I had hearing aides 15 years ago, they quickly became useless due to progressive hearing loss).  After that, I was sent off to another doctor and yet another hearing test, then finally back to the primary physician who informed me that everything looked good and that I we could proceed with the operation for the CI.

And that's where I am today. 

Still not listening :-)

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