Hey, everyone, here's my story!

I was diagnosed with Chiari I and basilar stem migraines back in 2005 (I was 15) at that time it was only considered to be 1 mm. I was sent to the University of Michigan to see a neurologist and a neurosurgeon. In the fall of 2006, my mom was playing with my and noticed that I had a mushy spot (to this day we still don't know what it is yet). In 2008 (the last time I saw my neurosurgeon), she stated that the Chiari had shifted a bit more and was now at 5 mm. I continued seeing my neurologist (not at UofM) to treat the migraines and keep an eye on the Chiari until 2012 when I was told that he wouldn't see me anymore because he no longer accepted my insurance and was told that I could get my medication from my primary care doctor. I just started seeing a new neurologist, who takes my insurance, earlier this year. I had an MRI of just my brain without contrast. Yesterday was my recheck. I was told that the Chiari was now at 9 mm and that they want to do another MRI this time of my entire spine. The new neurologist said that they were worried about me missing a vertebral artery, some of my spinal column, or a cyst of CSF fluid.

I've had five MRI's only of my Brain and only one with contrast. I'm freaking out as to why they never checked for any of the missing stuff or the cyst until now. I want to know if anyone else has experienced any of this stuff.

Jessid, so glad you are getting the complete MRI looky-loo. It sounds like you have a good doc who has an understanding of Chiari and wants to help you move forward! Let us know what it turns up.