Sarah's Chiari Journey

My name is Sarah McCann and I am 34 years old.  I have just been diagnosed with a Chiari Brain Malformation that my neurologist describes as the worst he has ever seen.  My Chiari is particularly rare due to the fact that it is so advanced, the cerebellar tonsils are so large and the tonsil positioning is so close to my brain stem that the surgery is needed immediately & is very high risk in nature.  There is very little brain fluid flow in the back of my head, and I have three areas of my spine that brain fluid is collecting due to the lack of circulation.  Out of the 3 Syrinxes (fluid sacks on spine) 1 is particularly large and extremely painful.

Within the next month or so I will be having a very complicated brain surgery to fix the Chiari. It is impossible to tell how long or difficult my recovery will be. It is also not known if I will need additional surgeries on my spine.  Needless to say, I have a rather large mountain to climb. 

Presently, I need to begin travels to find a surgeon, who is a chiari specialist, to do this surgery. I certainly am trying to keep positive; however, between travel costs, medical bills & other related financial obligations, in reality, things are looking rather bleak. You know I wouldn't ask if I didn't have to BUT I really need some help.

I am also a mother to my 16 year old son whom I need to continue to care for throughout this process.

Please see my Facebook  page for additional information and updates.