Friday, January 4, 2013

Okay..enough for the holidays..back to work.

I'm becoming consumed with Chiari..Obsessed with Chiari Awareness...Treatment really shouldn't be THIS difficult or THIS expensive.

SO on with the tale...

Once upon a time there was a little girl with a big brain...
No..wait...that's not the story at all.
Let's go back a few months...

I get the call..
Nurse: "Ms. Robinson, Dr. Horner wanted me to call and tell you you have sheari malformation type 1 and he is going to send you to a neurologist. "
Me: "So I have SHEE ARE E?  How do you spell that and what is it? "
Nurse:"It's C-H-I-A-R-I..and I don't know what it is.. we will call you back with your neurology appointment. I'll call you back."

Me:  Mouth hanging open..quick Google while dialing Bob's number..
Me: "honey..I have SHEE are ee..its spelled CHIARI..Wait, I'll call you back..the Dr. is calling."
Bob: "Uh..okay"

Me: "Hello"
Nurse:  "Your appt is next week with Dr. H, they worked you in."
Me: "Okay, should I be concerned."
Nurse: "Dr. H will explain everything, don't worry."

Me: "Hey Honey, I have an appt for next week."
Bob: "I looked it's pronounced KEE-ARE-EE. The only treatment is brain surgery."

So that was day one.
The days, weeks and months that led me to today have been exasperating. I've seen 2 neurologists, 3 neurosurgeons, 2 primary care physicians, 2 radiologists, 1 neurological ophthalmologist and 1 physical therapist.  I've been to Dallas, Denver and Houston. I've been told.."You were born with's not the problem", "I can't do this lumbar puncture on you, it will kill you, I don't want to kill you on a Wednesday,",  "Dr. O hasn't had time to review your chart..although its been six weeks.", "we think you have a brain bleed, we need to transport you to the main hospital by ambulance"
and my favorite, "You don't look sick.."

I thank God for my wonderful primary care doctor who promised me to see me through this and told me to not give up until I found answers.

As I numbly read through symptoms on Day 1..I felt suddenly elated..VALIDATION. No..I was not lazy..and it wasn't all in my my ex-husband stated one time, "no one can find anything REALLY wrong with you."  I thought perhaps I was a hypochondriac ...I thought that I was a misfit..
The only misfit here is the way my brain misfits my skull..

In weeks and months to come I will spill out my Chiari Tale in greater detail. Right now I have 26 days before surgery and have so much on my list to accomplish.  I now have a Caring Bridge site that I will link to this one and will plan to update both as time goes on. Also, I will be teaming up with the Chiari Warriors Foundation and adding my own informational site to FaceBook called The Constricted Cranium. My goal is to increase Chiari Awareness in the general public and in the health care world.  I can trace symptoms back to age 13 and have seen nearly 20 doctors since then..all who could have ordered a simple brain MRI had they been fully aware of the ways Chiari can present itself.  Thanks for reading..I'll meet you back here in the near future.

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