1st Annual Maine ASAP Cruisin' for SM & CM
TWO WHEELS, THREE WHEELS FOUR WHEELS OR MORE, ALL ARE WELCOME! Raising funds for research, education and awareness. Providing support and programs for the cm/sm community since 1988.
|1st Annual Maine ASAP Cruisin' for CM & SM|
Benefiting the American Syringomyelia and Chiari Alliance Project
HI, Iím Lisa. Please join us for our 1st Annual Cruisin' for CM & SM so we can help others, have fun, bring awareness, education and support for everyone effected by CM/SM because there is no cure, this is chronic.
I am affected by syringomyelia and Chiari malformation. Chiari malformation (CM) is a congenital anomaly in which the brainstem and the cerebellum protrude through the opening at the base of the skull. This results in pressure on the spinal cord, causing extreme pain, loss of coordination and other devastating neurological symptoms. Multiple surgeries are often needed to halt the progression of symptoms. Syringomyelia (SM) is a chronic spinal disorder in which the cerebrospinal fluid enters the spinal cord and forms a cavity known as a syrinx. Over time, the syrinx may swell, causing permanent nerve damage which can lead to paralysis.
My symptoms started as a child. Debilitating headaches left me bedridden for days, I was told they were "migraines". As I got older my pain increased. I had sprains and broken bones. I was "Clumsy" and would drop things. I was getting worse and the tests showed nothing. I was told it was "psychosomatic", that it was all in my head.
Now 47, after many years of frustration with my situation, I consulted with a doctor who put me on the path to specialist. It did not go well. I took it upon myself to go through some old medical records and came across an old MRI report. One word stood out, "SYRINX". I consulted with my primary care physician and he notified the neurologist. I then had another MRI was off to a neurosurgeon. I walked in and he said "You're on the operating table NOW because you are a sneeze and or cough away from being paralyzed". The MRI report that triggered all this was dated 2006, years earlier. It struck me that much of the pain and suffering that I endured had much to do with the lack of awareness within the medical community.
I had a Decompression Surgery which involves removing a portion of the back of the skull to allow enough room for the tonsils to ascend into their natural position and resolve the Syrinx. Sometimes multiple surgeries are needed.
My symptoms continue to this day and I realize that this is much larger than just me. Hundreds of thousands of others suffer through this journey. It is one of pain and frustration with both the symptoms of the disorders and lack of awareness by medical professionals. I knew I had to do something to help others and maybe make their experiences less exasperating and painful than my own. I started a support group through the American Syringomyelia & Chiari Alliance Project Inc. We bring together people who understand the frustration of others, and share experiences and knowledge. It is safe haven where what's said in group, stays in group.
Bottom line, with the medical technology we have today (MRI's) the numbers of CM/SM are climbing and this may not be a "rare condition" after all. Through our efforts and the technology available today, there is little reason why people have to suffer getting treatment or aftercare for generations.
It's going to be a great event, looking forward to seeing you there. For any questions please contact Lisa at Maine_support@asap.org, (207) 570-6428 or Patricia at (903)236-7079