When I was diagnosed with a chiari malformation in October of '06 I was devastated. I knew exactly what that meant, that my brain stem had herniated into my spine. I was also aware of the symptoms that a chiari could bring and was already living with many. It was the reason I was almost falling down all the time, the reason I had such horrible nausea, and the reason my right eyelid was sagging. And I had excruciating pain on top of my head that felt like someone had taken a good shovel to my head. I was miserable. But at least I knew now. I now had a diagnosis, that for months I had to guess as to what was wrong with me.
My chiari was not one I was born with, a congenital chiari. It was an acquired chiari, meaning that it developed due to other reasons. And my reason was my shunt. For several months my shunt overdrained and caused me to lose precious cerebral spinal fluid. With that, my brain began to sag and the brain stem fell below the skull line and into the spinal column leaving me with unbearbale symptoms at times.
After living with this condition for nearly four years, I am done. My balance and dizziness drive me crazy. I am tired of feeling like I am on a boat all the time. So I am looking into corrective surgery to be done at the Chiari Institute in New York. I have been recommended the Institute by my neurosurgeon at Duke University. I will follow his recommendations and send the institute all my records and films and let them review my case to see if I am a candidate for the surgery. If not, I may just have to live like I have been and try to find a way to make peace with my body and my brain.
