Wednesday, June 26, 2013

"Chiari.... when Brain Surgery sounds like a GOOD idea!"

My family has a pretty colorful medical history.  If there is a unique or rare condition, I'm pretty sure someone on some branch of my family tree has had it.  And it seems that my generation is carrying on this family tradition.

You see, back in March, I got the news that my sister had been diagnosed with Chiari Malformation.  I could try to go into all the medical speak and pretend that I know what I'm talking about...but I won't.  I will tell you what I gather is the gist of it.  My sister's brain is too big for her skull and it's pushing into her brain stem, disrupting the flow of cerebral spinal fluid; which is also wreaking all kinds of havoc on vision, balance, hearing etc....I mean it's pretty serious stuff.

Thankfully there are a handful of neuro-guys that specialize in this kind of thing, and even better, one very special specialist (a Navy guy which makes him the awesomest) that is just down the road (um....a few states downs the road) from her.  She had her first appointment with him last week.  He confirmed the Chiari diagnosis and added a few more of his own.  Turns out the Chiari is a symptom of Ehlers-Danlos Syndrome, a connective tissue disorder, that has also caused a "cervical cranial instability."  Yea.  It's official.  Big Sister does in fact have a few screws loose. ( left yourself wide open for that one...couldn't help myself :) )

So, what's next?  Well, she needs surgery.  On her brain.  My sister needs brain surgery.  WTF.
They will need to do a decompression surgery to take care of the Chiari and they also need to fuse the C1-C2 vertebrae to combat the instability.

Good news?  This Navy dude is good.  Really good.  Bad get what you pay for.

Now, we are not the type of family to ask for help.  But people, these are extreme circumstances.  This Navy dude is not in their insurance network and we need to get a hold of $10K for a deposit before they can do the surgery.  And I'm positive that this very special specialist Navy neuro-dude is the one that needs to do the surgery.  Too many signs and serendipitous events have led her to him.

So please, I hope you might consider helping either by sharing or forwarding this link, by sending good thoughts, keeping her in your prayers...and if willing, maybe even contributing some spare change.  Not only is she Super Mom, but she is also Super Sister and Super Friend.  And we all need her to get her head on straight  :)

For updates and the like, you can find her here on blogspot at  And if you are so inclined, you can give a penny or two at her fundraising page:

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