Syringomyelia + Sisu

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. 

His right hand was bandaged here.

My hands today, are curling shut from spinal cord damage in my neck.

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.

 

The joint is gone, dissolved in one month.

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. 

I hope my hands never get like this.

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

Sisu

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. 

https://lelandolson.com/

Syringomyelia Hand Damage

Syringomyelia has resided in my spinal cord for about 50 years. The doctors say it was from an original spinal cord injury 55 years ago. Neurologist have found little evidence to show the disease is hereditary.

I have just found evidence from an old picture showing my great-grandfather had syringomyelia damage to his right hand. It looks exactly like it.

He was born in 1842 and died in 1925 The picture of his right hand look exactly like someone who has had siringomielia long-term. My hands are starting to take on those changes.

I have almost made it to my 79th birthday. I do feel a little better now knowing that great-grandfather lived to be 83.

Siringomielia was considered very rare, until the invention of the MRI machine. It is much easier to diagnose now. My symptoms got progressively worse for almost 20 years before I was diagnosed. It made the left side of my body numb, even the left side of my tongue. The first drain shunt was placed in my spine in 1985 to relieve pressure and drain excess spinal fluid. That helped stop some pain and slow the nerve damage. Another drain shunt was put in 3 years ago, the pressure is still being controlled. My great-grandfather had none of these preventative treatments available. The pain he endured must have been unbearable at times. How he could have lived that many years is a true miracle! He was mostly Norwegian but must have also inherited Sisu from the Finlander side of the tree.

https://lghoelson.wordpress.com/

“Google Syringomyelia damage images”
“Google images”
“Ole Olson Hoel’s right hand”
Ole Olson and his caregivers at Rocky Mountain House Alberta, Circa 1924″

I have looked at this old picture many times but never zoomed in on his hands. I wanted to see if he was holding a bible, or a KENO ticket. I’m glad I did, because it looks like my syringomyelia was inherited from him. That is not something to be happy about inheriting. I think he gave me a large portion of his Grit and Sisu, that has helped me cope with the dreaded disease.

The top two pictures are from Google Images, showing the hands of syringomyelia victims. There were several pages of hands in different stages of damage or deterioration.

The golfer Bobby Jones also had syringomyelia and I believe he lived to be almost 80, so it’s not always a death sentence. A definition is not easy to describe as it affects each person differently. It is a genuine neurogenic nightmare for both the doctor and patient. A victim might imagine some evil power placed a curse on them.

You can find out more information about syringomyelia at this website.

https://asap.org/