March for Chiari Research

There is so much that remains to be understood about Chiari Malformation. We know that Chiari Malformations are structural defects in the skull and cerebellum that affect about 1 in 1000 people. Some people with the condition experience no symptoms at all, and some are debilitated. 

I was somewhere in between. I experienced daily headaches, muscle spasms in my neck and shoulders, vestibular issues, light sensitivity and cognitive issues. I went to neurologists who told me that my Chiari wasn't serious because I still had control of my arms and legs and I wasn't losing consciousness, and probably wasn't my problem anyway. I was treated for chronic migraines and put on several different medications that were ineffective and had side effects of their own. I tried new glasses, physical therapy, a new mattress and pillow, acupuncture, more exercise, less exercise, botox... I got biweekly massages to help manage the muscle spasms. After a few years, I decided to have decompression surgery to make more room in my brain, even though one neurosurgeon had only given me about a 2:1 chance that it would be successful. Luckily for me, that turned out to be the right call. 

We don't know nearly enough about the causes, prognosis, effective treatments, or long term impacts of Chiari Malformation. It's hard enough to be a patient and deal with the symptoms of the condition itself, but even more so when you and your doctors don't have enough data to make informed decisions.

Conquer Chiari has raised $5M for research since 2004. Honestly, that's not much at all, but they really provide a lot of value to an underserved patient group. I have used so many of their resources to help guide my decisions and predict the outcomes of different treatment options. I'm making a donation and invite others to join me so that Conquer Chiari can continue their work to inform better care for future patients.