I haven't written a lot about why I had to have my surgery. Part of that was because it is kinda hard to explain. Only 300,000 people in the entire United States have what I have. To put that into context there were over 207,000 new case of breast cancer in the United States in 2010, 400,000 people in the US have MS and they estimate 200 new cases are diagnosed each week, 1.5 Million Americans have some form of Lupus, so that puts my Chiari I Malformation (pronounced kee-AHR-ee) into perspective. It isn't a "sexy" malformation. It isn't visible when you look at me (other than my surgery scar). There are neat visuals and many sites that explain the malformation. The NIH defines Chiari as:
Chiari malformations (CMs) are structural defects in the cerebellum, the part of the brain that controls balance. When the indented bony space at the lower rear of the skull is smaller than normal, the cerebellum and brainstem can be pushed downward. The resulting pressure on the cerebellum can block the flow of cerebrospinal fluid (the liquid that surrounds and protects the brain and spinal cord) and can cause a range of symptoms including dizziness, muscle weakness, numbness, vision problems, headache, and problems with balance and coordination. There are three primary types of CM. The most common is Type I, which may not cause symptoms and is often found by accident during an examination for another condition. Type II (also called Arnold-Chiari malformation) is usually accompanied by a myelomeningocele-a form of spina bifida that occurs when the spinal canal and backbone do not close before birth, causing the spinal cord to protrude through an opening in the back. This can cause partial or complete paralysis below the spinal opening. Type III is the most serious form of CM, and causes severe neurological defects. Other conditions sometimes associated with CM include hydrocephalus, syringomyelia, and spinal curvature.
Basically, that means that my brain outgrew my skull - but only the lower part of my brain. So, that is what I had surgery to treat, not cure. My surgery was difficult, to say the least. But, the sad part is, it doesn't cure anything; it just tries to make things better. I have good days and bad and more good than bad thanks to the giant window in my skull. I can't predict when days are going to be pleasant or when I am going to need to leave work early because I can't take the pain - it just happens. Everyday post-surgery I am suppose to be getting better and closer to a "normal" life, but there is no guarantee. There is no telling if I am going to have to have more surgeries or if my conditions will get worse or if one day, things will really be normal. That is why, I decided to look for others who have the same condition I do. I found something interesting.
In September, there is a walk to raise money for Chiari research and I am participating. My team is Pinky and The Big Brain. I would love it if you could help me reach my fundraising goal of $1,000 and, if you are in the area, join my team! You can donate and join Pinky and The Big Brain here. The walk is in Leesburg, VA and I am aiming for the full 2.5 miles! For those of you not in the DC area, there are many sites around the US to walk for Chiari. I hope you can join us out at Leesburg or at another site.