Where to even begin?

My story is so short time wise but there is so much to say - I must break this down into several posts. It has been only 4 weeks since I heard the word Chiari and it seems like it was yesterday and at the same time, so much has happened so fast - it seems to be such a long journey. So - I will start with the facts along with a peek into what the point of this blog is anyway.

When I initially got my diagnosis, I was so scared. I read how rare it was, never heard of this strange thing and was just plain creeped out knowing my brain was in my spinal canal - ok only a tiny part but still. I found a few blogs with personal stories and I read and read and read more. This gave me a sense of knowing the beast I am facing.

This being so rare, information isn't super easy to track down and my hope and prayer is that someone headed down this nasty journey will find comfort in my experiences. I know how much it helped me to know I wasn't alone in my symptoms, my feelings, my fears and my total lack of understanding of my condition.

I also write in hopes of healing, processing the work God is doing in my heart as He prepares me to deal with my head. My condition is a nasty one but not as nasty as my heart, it needs more work and I know God will use this to heal my heart more and to grow me more into the woman of God he needs me to be.

The facts - the bottom part of my brain has decided to head south 7MM into my spinal canal. This has caused a severe restriction of the normal flow of cerbral spinal fluid in the back of my brain/head. I also have a "cyst" of spinal fluid called a syringomyelia. As this syrinx grows, it causes permanent damage to your spinal cord.

Cure = NONE

Treatment = More than likely a pretty major surgery, will know more when I meet with the Neurosurgeons. So far I have one appointment in Cleveland on January 14th. This is a rare disorder and finding someone experienced is crucial. Hoping to end up with three consults before we decide which Doctor to trust with my brain.