I thought I would write a blog post about Syringomyelia as there are still very few people in the world who actually know what it is. At one time it was considered a very rare disorder. Since the invention of the MRI machine they are finding many more people who have this condition in their spinal cords. I went over 15 years after my symptoms first started. I was finally diagnosed in 1985, that was purely by accident. A student doctor visiting with my puzzled neurologist just read about it in class that week. I was in the VA Hospital a week later having a drain placed in my spinal cord to drain out the excessive fluid. Today my spinal cord resembles this picture but the Syringomyelia cavity extends the full length of the spinal cord.
Barbara White a young woman living in Texas was diagnosed at about the same time as me. The National Organization for rare disorders Nord wanted someone to start a support group for people Contracting Syringomyelia. Barbara White and her husband Don decided to do that job and they founded ASAP which is still operating and growing today as the main support group for people with this disorder, it also includes those with Chiari Syndrome a disease where the brain stem protrudes down into the spinal column. I have enclosed a link to ASAP’s website.