Saturday, October 3, 2009

What's Wrong With Me

Enlarged Vestibular Aqueduct Syndrome
I wear hearing aids in both ears; I can't hear anything without them, seriously, hardly anything, loud screams next to me maybe, but pretty much, nothing.

In short:
We all have these little canals in our heads that connect our ears to our brains, and mine are bigger than yours, most likely because my brain is so big : ). But this poses a problem with hearing.

According to the leading research, this is a genetic condition, both parents must carry the gene to pass on the disorder, but if only one parent is a carrier, the gene is passed to the offspring who will become carrier (autosomal recessive). Both of my parents are carriers which means about 1 in 4 of their offspring will develop the disorder. Looks like I got the sh$t stick.

It's very unlikely that my daughter will have this since my husband would have to be a carrier as well. Still, she will be tested every year starting on her third birthday, and she will be a carrier of the gene. I get tested every 6 months since the disease is progressive, that means it gets worse over time.

The discovery of this disorder happened in the 70s and because it's not fatal, there has not been a lot learned about it. Some scientists argue that it is not, in fact, genetic at all, but others claim to have isolated the causing gene. So I'm still waiting for the smarties to figure this one out.

Not all people who have the disorder actually loose their hearing, but those who do, usually begin to show symptoms in early childhood which explains why I began failing tests in the 5th grade.

Please check out my links to learn more as I am still trying to figure this all out myself.

Enlarged Vestibular Aqueduct Syndrome

What symptoms do I have?

--progressive hearing loss
--fluctuating hearing loss while and shortly after pregnancy, which may or may not be permanent if I choose to become pregnant again. I got lucky the first time and my levels bounced back up almost to where they were before my pregnancy.
--tinnitus-constant ringing in the ears, popping, dripping sound like a leaky faucet
--vertigo-short bursts that cause me to lose my balance and see the room spinning or total blackness, only once have I completely passed out from it. I experience this very rarely, maybe once a week and it only lasts a minute or two.

What can make it worse?
--head trauma
--changes in barometric pressure like scuba diving

What can make it better?
Nothing at this point but hearing aids are working for me and as technology gets better and better, life improves. If my speech discrepancy levels drop below a serviceable level, I will be a candidate for cochlear implants. The good news is that I'm not there yet!

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