So, my journey for those who are interested....
When you are diagnosed with something so rare it seems like you are all alone....it did for me at least! If you are anything like me within 10 minutes of hearing this crazy word Chiari by my doctor...who couldn't spell it! :) You go straight to Google...you do not pass go and you do not collect $100. While I did find quite a bit of stuff on Chiari, Basilar Invagination was a whole different story.
I can only describe that search as...crickets! I did find doctors studies (which I don't understand) and Wiki sites that give you a very narrow view of the conditions and what patients go though.. Every once in awhile I came across a post by some random person from years ago that asked if someone had heard of these conditions and then...crickets! I saw a comic the other day that reminded me of this search. I absolutely have to share with you. If you have ever been on this same frustrating search you just may laugh....I did.
So I hope this helps someone....and if nothing else I have a place where I can remember this long road to where ever it may lead me. Maybe one day I will look back and laugh...maybe not.
