Wednesday, May 13, 2009

Chiari explained

Okay, I promised to explain this last night so here goes. Chiari Malformation is considered a birth defect. When discovered in early childhood it is usually easier to deal with but an adult of my age? Well they didn't have the knowledge or technology when I was young. The normal brain sits basically at the top of your head/skull, in a Chiari patient the brain is at the back of the skull literally running down your neck cutting off spinal fluid, nerve signals etc. A side effect of this is the disease called syringomellia. Basically that is a fluid filled tumor in the center of your spinal cord. This actually causes the death of the spinal cord and there is no reversing it. In my particular case, I had to have surgery, the first in November of 2004. If your squemish don't read this part. I have had a triangle of my skull removed to give my brain room to live. I have had the top two bones removed from my spine so the part of my brain that was coming down into my neck was not squeezed. I have had several lumbar drains to try to destroy the tumor in my spine, ideally, draining should collapse the tumor and it should dissolve, in people like myself, it does not work and the tumor just keeps filling with spinal fluid. Recovering from surgery was a long , painful road and just about the time I should have been feeling better (not recovered, there is no cure for this illness, surgery just alleviates the worst of the symptoms and possibly saves your life. At Christmas time that year I noticed a big squishy lump at the back of my head. Called the surgeon who told me nothing was wrong, I just wasn't used to the physical therapy I was doing so the squishy lump grew until February of 2005 and it was the size of a base ball. Surgeon then decided it was a problem, I had a serious cero-spinal fluid leak somewhere and the only way to find the leak was another surgery. They had to open me up in the same places to locate the leak, never could which is why I still have the tumor in my back, the leak just keeps filling it up. The worst part is I wore a crewcut for 2 years because they had to shave my head 2x. Okay that is the basics so far. One thing I would like is for more people to know about this disease. Large amounts of money is given to research for the treatment of Aids, Cancer, MD , MS, Luekemia etc. But very very little is given for treatment of Chiari or syringomellia because people just don't know about it, please take a few moments to go to the following site and learn a bit:

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