Being blessed is a choice!

Chiari

My Chiari Story: If you are reading this, then more than likely you either know me, have been diagnosed with Chiari, or know someone who has Chiari. When I was first diagnosed with Chairi, it was the most unsettling time of my life. I was scared and confused. I knew NOTHING about it. All I knew is what my doctor told me. She said, “I don’t know much about it but I know it’s not good”. Well, I love my doctor because she’s humble and honest so her response was typical and appreciated but it left me scrambling to find out just what was going on. Well, though it was scary as I’m sure it is for many people, its wasn’t the end of the world. I was diagnosed in the fall of 2008. I underwent decompression surgery (Post Fossa Craniectomy) in January of 2009. Basically what that means is that they removed a portion at the base of my skull that was putting pressure on my cerebellum. My skull was smaller than it needs to be and the cerebellum is literally hanging out the bottom. Many times this puts pressure on the spinal cord and decreases the flow of cerebral spinal fluid. Some patients develop whats called Syringomyelia and some even develop a tethered cord (the spinal cord actually moves out of place). I was fortunate not to deveop either of these conditions. My heart goes out to those who do. It is not know exactly how many people suffer from Chiari in the US but a recent study done at Duke University estimates that it may be as high as 200,000. Many of these go undignosed. Because of the nature of the condition, it affects the nervous system. There are literally dozens and dozens of symptoms. The can range from vision problems, hearing problems, memory loss, loss of coordination, loss of balance, joint pain, muscle pain, numbness, headaches, back pain… The list goes on and on. I’ve heard many people say that it’s the condition where people don’t understand because we look so good but feel so bad. I’ve experienced some of that. I know others have as well. Some people are...