I have a couple of things in common with the famous golfer Bobby Jones. He loved the game of golf. And all the challenges it presents to the human soul and the development of one’s character. Later in his life, he got the dreaded spinal cord disorder Syringomyelia, the same thing I have in my spine.
We have very few choices except having shunts or drains placed in the spinal cord to relieve pain from pressure building up in the spinal cord. We live our lives as best we can while nerves get destroyed from the inside. Bobby Jones lived to be 70 years old; I am currently 79. My golf ended forty years ago, but I get a lot of enjoyment out of watching it on television.
When the game first got started, it became a test of rules and a honor system. It has become a powerful tool for individuals to form and build precious character. It all comes down to choices you make the right choice or the wrong choice you become stronger or weaker in conscience.
“In 1948, Bobby Jones got diagnosed with Syringomyelia. It is a fluid-filled cavity in the spinal cord that causes crippling pain, then paralysis; he eventually got restricted to a wheelchair. He died in Atlanta on December 18, 1971, three days after converting to Catholicism. Jones was baptized on his deathbed by Monsignor John D. Stapleton, pastor of the Cathedral of Christ the King in Atlanta, and attended by the Jones family. He was buried in Atlanta’s historic Oakland Cemetery. Jones became inducted into the World Golf Hall of Fame in 1974.”
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.
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.
I received a spinal fracture in my lower back in 1964. My spine continued to deteriorate, I could not find a doctor to diagnose my problems. In 1985 I was finally diagnosed with Syringomyelia. It was considered a rare disorder at that time. I contacted NORD, the National Organization for Rare Disorders that year. I was told by them they knew of a person living in Texas who also had Syringomyelia.
NORD suggested someone start a support group for people with the disorder and also start educating people and the medical society about this rare spinal condition. Barbara White and I exchanged letters and ideas. She agreed to start a support group with her husband Don at that time. After that first memorable, year there was an annual meeting held in Colorado, Springs Colorado. The number of people attending was large after just one year.
EPSON scanner image
I’m attaching some pictures from that first ASAP meeting and also the URL address for ASAP. Click on the link below to find out more information about Syringomyelia or ‘SM’. I thank ASAP for being a great support group and an outlet for the most up-to-date information about spinal disorders also for outstanding fundraising for SCI research.
From spaghetti to the quiet alley behind your house, this week show us something narrow.
I couldn’t get my wife to unscrew my head and take these pictures so I went to Google free images and borrowed some.
This picture shows in good detail a narrow spinal canal and what is taking place in the spinal column. The white Subdural space should be large enough to give the spinal cord ample room. In this case that space is closing shut from the presence of syringomyelia inside of the spinal cord and this one extends into the brain stem. The syringomyelia creates a cavity inside of the spinal cord. It continues to grow and stretch, drain shunts can help lower spinal cord pressure. Pressure causes the spinal cord to swell up causing the spinal canal area to narrow. After so much swelling takes place the spinal cord comes in contact with the bones of the vertebrae. This creates nerve damage, sensory loss, pain and many other symptoms such as respiratory loss and organ failure. Together, the brain and spinal cord are known as the central nervous system (CNS). They do miraculous work together as a team but do not tolerate outside interference very well.
Syringomyelia has been present in my spinal cord for almost fifty years. The full length of my spinal cord is now hollowed out by the cavity that the syringomyelia created. I have had two drain shunts installed. The narrowing of my spinal canal continues and in my case I also have spinal stenosis in the cervical spine. The pictures at the bottom of this post show a normal spinal column and also a spinal column with stenosis.
In the year 2000. I had surgery on my cervical spine for stenosis. They removed the front half of a vertebrae, then cleaned out pieces of bone spurs, popped the vertebrae back in place and grafted it with bone bank parts. Six screws and a metal plate now keep my head from falling off , my neck gets awfully sore just about every day. An indicator of a narrow space in the neck again. No more repair jobs for me.
In spite of all the progress that has been made in the medical field, damage to the brain and spinal cord leave many doctors playing a guessing game when it comes to diagnosis and treatment. Very seldom are there two patients under their care who will have the same symptoms, neurogenic pain, paralysis or a long list of other problems from the same spinal cord injuries.