Syringomyelia is not supposed to be a genetic disorder according to many experts. A picture of my great grandfather’s hands makes me question whether that’s a fact. 

I had a spinal fracture in April of 1964. My spine was fused with bone taken from my hip in October of 1964. Syringomyelia started in my spinal cord around 1970 but was not discovered until 1985. It continued to progress until my whole left side, from my waistline to the top of my head became numb. 

Syringomyelia – Wikipedia A drain shunt was put into my spinal cord to drain off pressure in 1985. That helped stop some of the neurological damage. In November of 1985, my left shoulder became a Charcot joint.

 

Neuropathic Arthropathy of the Shoulder (Charcot Shoulder) (nih.gov) 

In 2000, I had surgery on my cervical spine for stenosis, a plate with six screws was put on the front of my neck at that time. In 2018 another shunt was put in at T-4 to drain fluid from my cervical spine area. 

The total length of my spinal cord is now hollowed out with a large cavity, thankfully the pressure is not high.

Sisu

Sisu is a Finnish concept described as stoic determination, tenacity of purpose, grit, bravery, resilience, and hardiness and is held by Finns themselves to express their national character. It is generally considered not to have a literal equivalent in English.

I contacted this organization NORD in 1985 when it was considered a rare disorder. Barbara White and her husband started a support group in Texas a year later. 

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Syringomyelia

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