by L G Hoel

Created on: December 28, 2009

Syringomyelia or SM has baffled doctors for years. The doctors who have even heard about SM are often at a loss to diagnose a SM patient who comes to them. Almost every patient will have different symptoms, as the dreaded syrinx attacks different parts of the spinal cord. Some people end up with SM from the brain stem being forced into the spinal canal causing a syrinx to start. This type is thought to have been caused from hard labor during child birth. It has also been called Arnold-Chiari malformation. Some SM starts after a spinal cord injury where there has been bleeding in the spinal cord. There are also many cases of SM where the doctors have no idea how they originated.

My SM symptoms started in 1970 when my left hand began to lose sensitivity to temperature. It then progressed up my left arm and shoulder. I started to lose feeling also. By 1985, I was numb on my whole left side from the waist to the top of my head. My neurologist was at a complete loss as to what was wrong with me. He thought of everything from a stroke, to maybe I was drinking too much, or maybe just imagining it all. At that time, when I sneezed or coughed, the pain shot up my spinal cord to the top of my head until I would almost pass out. The left side of my tongue was numb then too, and I would bite my tongue when I ate.

I was very lucky; a young woman medical school student who had just studied about SM, sat in on my last appointment with that neurologist. I was sent to get a CT scan with milography of my spinal cord. The radiologists could not find a syrinx, they had me go back after the dye had been in my spinal cord for 12 hours. The syrinx finally showed up. Three days later, a shunt was put in to drain fluid from inside the syrinx in my spinal cord. This shunt drained the fluid to the area inside the spinal column. Some shunts drain the fluid to the abdominal cavity. After the surgery was done, I had some relief from the pain shooting to the top of my head and some feeling returned to my tongue.

People with SM can be very thankful for the invention of the MRI machine. Diagnosing SM is a lot easier task now with MRI. SM was thought to be a very rare disorder at one time, but now, they are finding a lot more cases. The treatment for SM is still a mysterious undertaking, as the spinal cord doesn't seem to follow any set pattern of recovery from damage. I had my spinal column fractured and dislocated in 1964; the doctors think my SM started from that injury. My last MRI in 2000 shows that my whole spinal cord is hollowed out with a huge syrinx. I can still walk, but not very steady. I have had more loss of upper arm strength in recent years. I live with a lot of pain all the time, mostly from a Charcot Joint on my left shoulder. Some bladder and bowel trouble is SM related; most date back to the first injury. I have sleep apnea that is SM related and had a laminectomy in the cervical area for spinal stenosis in 2000.

I hope some of my history might be of help to anyone who is having trouble getting diagnosed if they might have SM and not yet know about it. When I was diagnosed in 1985, I felt like I was the only person in the world with SM. There is a support group today at http://www.asap.org/

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