September 8th 2010
During the summer of 2009 I was invited to give a talk to the convention of ASAP (short for American Syringomyelia and Chiari Alliance Project) in Madison, Wisconsin. Syringomyelia is a debilitating disorder of the nervous system characterized by cavities (holes) inside the spinal cord, as well as abnormalities at the lower part of the brain. Such a disorder is manifested with weakness, bladder problems, imbalance and neuropathic pain which is disabling and often affects large areas of the body).
I was invited to speak on the issue because my research into this condition had resulted in a scientific publication. I was the only Canadian speaker and I gave my talk to a packed audience. At the end of the talk I was approached by a nice woman in her mid-50s and as she walked towards I observed that she had a rather wobbly gait.
“I understand you practice pain management in Toronto. Why in the name of God did I have to come to Madison searching for an American pain doctor, when you were there just a few bus stops from my own house?” She said.
Ms.M. had longstanding syringomyelia and her pain had really grown to be quite a problem. She asked for help from her family doctor and then her specialists who had no idea where to send her. In her desperation and with the help of her web-savvy son she located the ASAP network and came to hear the talks in the hopes that she could find assistance and advice from an American doctor. Needless, to say, a month later she came to see me at the office and became my patient.
Mr. J. an 89 year old gentleman, bright and well educated, saw me 3 years ago, on the desperate plea of his son and daughter. Their father had developed a painful condition in his left lower leg with sharp jabs of stabbing and burning pain combined with bouts of uncomfortable pins and needles sensation. To make a long story short, the moment I saw Mr. J. I noticed very slow movements of his toes in that affected leg. He had become aware of them since the onset of the pain but did not know what to make out of these movements. I thought of a very rare and painful syndrome named “painful legs, moving toes”.
The commonest abnormality associated with the syndrome comes from the spine when a nerve root is pinched and compressed usually because of degenerative changes. There was only one problem: Mr. J. had nothing but minor back pain for years to the point he felt it was not worth talking about. I sent Mr. J for a spinal MRI and nerve tests. The MRI was clear: he had an absolutely lousy back and his nerve root was squeezed at the site of the painful leg. A nerve test was able to confirm that Mr. J. had a pinched nerve in his back. Nevertheless the tests made me confident that my original diagnosis of “painful legs, moving toes” was right. Yet Mr. J’s problem was only half solved. He now had a diagnosis, but what about treatment? The problem was that there was not much to be done for this syndrome. Even surgery to the back fails to change an abnormal nerve that has developed a “pacemaker” relationship by generating an abnormal signal going back and forth between the leg and the spinal cord. But perhaps there was another way to help Mr. J. by tackling the problem differently. .. What about providing him with treatment for his sleep, something to soothe this ongoing “nerve pacemaker” with a powerful pain killer to take the edge of the pain? So, Mr. J. got a medication to sleep, another one to soothe the nerve pain (which by the way is not covered by the province of Ontario even for those over 65) and a powerful opioid: liquid morphine.