Meet Chiari Warrior – Lisa
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.
After many years of frustration with my situation, in late 2012 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 (CM1) 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. I wish I had the education I do now, I was misdiagnosed, I actually have Complex Chiari and the decompression surgery actually failed, it made my cranial cervical instability worse & a portion of C2 was also removed.. C2 is crucial for stability.
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.