Barb
My syrinx is from the base of my scull to T11. It was caused by a Chiari I malformation, a birthdefect I was unaware of until the pain and disfunction of SM got so bad that I had an MRI in Dec 92 and found out all the bad news. I have had four surgeries, none successful until I went to New York to Dr. Thomas Milhorat for the last one. He took out a piece about the size of a bar of soap of my cranium along with C1-C3. The result has been that the chronic horrible headache is gone, although I still have a mild liviable one; I have more energy than before; unfortunately, the symptoms continue to persist because of the permanent nerve damage done prior to my surgeries and because of some. I still have some good and some bad days. I find that managing life around these ups and downs to be a real challange. It is really hard to go from an active lifestyle to this, and there was a long period of depression for me at the start. I think one of the hardest things is that most of the time people only see me on the good days because that is the time I get out so they think I must be either better or "well". Since this disease is so insidious and often undetectible from outward appearence, it can appear that nothing is wrong with you. It works on your psyche to have people doubt that you are as sick as you are. Chronic pain conditions are just like that; usually I hide out from the world when it gets bad, so no one (except my family or close friends, on occasion) sees the debilitating effects of SM. I'm interested in hearing other stories, and in knowing if anyone feels what I do.