I’m a Chiari patient.
What does that mean?
It means that I was born with a congenital birth defect where my skull is smaller than my brain. This caused intense pressure on the back of my brain and cerebellum. In my case, it actually pushed the cerebellum downward, out of the skull and into the spinal cord.
I had just slowly grown accustom to my symptoms over my lifetime. I thought I just had headaches and balance issues. I thought short term memory lapses and temporary situational confusion were just part of my make up. It wasn’t until they intensified that I began to suspect something wasn’t right but I wasn’t sure what.
Then, suddenly, almost overnight, my blood pressure would become erratic from literally minute to minute, at times giving crazy readings. I began blacking out and passing out. That is when I passed out at work and was taken to the hospital.
In January of 2009 I underwent a Post Fossa Craniectomy with Dr. John M. Tew Jr. M.D. (Neurosurgeon at Mayfield Clinic, Cincinnati, OH). The surgery is not a cure. It is simply to relieve pressure, and hopefully relieve symptoms.
The first couple of days were scary. At one point, I almost lost the use of my legs completely. We now however suspect that an allergic reaction to the pain medicine prescribed was the culprit.
I still experience symptoms from time to time. In May of 2010, after an increase in symptoms again, I underwent a spinal tap that threw me literally into a 3 week tailspin that can best be described as a bad psychadelic trip. I literally could not walk. Light, sound, smells, food made me nauseous and I would vomit. Ironically, Shakeology is literally the only thing that kept me alive for the five days that I spend in bed during that time.
However, I refuse to be a victim to my condition. I do not let it define me. So much so that initially I shyed away from interacting with other Chiari patients. I think it was to distance myself from my condition. Now, however, I embrace it. It is a part of who I am, but it is not who I am. I work to pursue goals that many think impossible.
If you, or someone you know, has Chiari, and have any questions or just need support, please, please, please contact me. I will do everything I can to help. If I can’t help, I will put you in touch with someone who can.