Monday, July 28, 2014

MRI Results: Too Much Brain to Contain

I wasn't expecting to hear anything for a week, because that's what the MRI tech told me, but my primary care doctor called me the next day to talk about the MRI. It went something like this:


"So...what your MRI showed is that you have a congenital abnormality..." she began. "Your cerebellum is slightly enlarged, and it probably has been for a long time or forever, and you just didn't know it because you've never had an MRI. It's called Chiari I Malformation. This could be causing headaches..." 

She said more stuff but I kind of spaced out thinking about this news. She said she was going to send me over to Neurology. They'd be able to read the MRI and tell what's happening. She also said she was sorry I had had so many appointments but she thinks this is definitely something I want to look into.

Chiari I Malformation

What is Chiari I Malformation?
From UW Health:
In this condition, the back part of the brain extends into the spinal canal. Each person has different symptoms. Many times people with this problem also have a spinal cord cyst (an abnormal collection of fluid). This cyst is called a “syrinx”. This cyst could also be the cause of the symptoms.
I don't see neurology until September and I'm going to relax until then. I'm sure they'll tell me it's no big deal and of COURSE I don't need zipperhead surgery. Right?

Yeah. I'll try and relax.

I found an interesting blog to read if I don't feel like relaxing, though: http://chiari1.tumblr.com/

Crazy Time

I've been all over the internet reading about different experiences, and different recommendations... What things are no-nos for those with this problem, like roller coasters, trampolines, or even using those salon sinks for hair washing. The surgery sounds horrid. I'm kind of panicking about it, and trying NOT to panic about it, because ugh, what do I know? But it also sounds like everyone eventually gets the surgery. I'm just a little tiny bit protective of my skull and brain and wishing for something less scary and more treatable with like...eyedrops. :P 

Every time I get a new diagnosis I feel like my brain is falling into a million pieces for about a month, and it's all I can THINK about. I can't turn it off. I want rest from it. I want to be taken care of, comforted, and assured that everything will be fine. I want to not feel so scared and alone.

/Crazy Time

Enough of this pity party today! I thank God for PROJECTS...and for the daily have-to-dos at least for now, that propel me forward even if it is slowly.

3 comments:

Yer momma said...

I love you Hilary! We will get through this!

Cameron Von St James said...

Hi Hilary! My name is Cameron Von St. James and I had a quick question for you! I was wondering if you could email me at your earliest convenience at cvonstjames AT gmail DOT com :-) I greatly appreciate your time!!

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