Why aren't Canadian parents told about a Montreal invention used around the world to treat scoliosis?
SHARON DUNN | January 23, 2008 |
"Welcome to a lifetime of pain" was the dramatic greeting I got six years ago when I typed just one word into my search engine. Last spring, as I sat in a hotel room after a dinner my 22-year-old son Jay could hardly sit through because of pain, I realized just how accurate those words had been.
It all started innocently enough in 2001 when Jay, then 16, complained of a sore back. His back looked fine to me, but I took him to the pediatrician just to be sure. "Your son has scoliosis, and now it's too late," the doctor told me, going on to explain that scoliosis, a sideways curvature of the spine, if caught while a child is still growing, can be treated with a brace to reduce the curve, or a surgically implanted rod to straighten the spine. We were referred to the Hospital For Sick Children in Toronto, where Jay was diagnosed with adolescent idiopathic (of no known cause) scoliosis, or AIS, the most common type of curvature of the spine. "If you ask me three times, I'll do surgery," the doctor then said to my son.
Confused, I asked him what he meant. "I wasn't talking to you," the surgeon scolded. Intimidated, not a common trait of mine, I backed down. Even though my son was still a minor, I apparently had no say in the matter. When we left the hospital, my teenager said casually, "Well, I guess I'll have fusion." The surgeon had succeeded in making spinal fusion sound like a trip to the park.
I soon found out that nothing could be further from the truth. Spinal fusion, introduced in 1911, is still one of the most dangerous surgeries performed today. Complications are surprisingly common and can include fusion failure, infections, numbness, and, more rarely, paralysis — even, as with any major surgery, death. "Successful" surgeries have their own issues, mainly chronic pain, and eventually more operations. Medical professionals may call it the gold standard in scoliosis surgery, but except in cases where it is absolutely necessary (serious spinal curves can lead to heart and lung problems), I couldn't find anything golden about spinal fusion.
I was relieved when surgery wasn't recommended for Jay after all. Following the visit to Sick Kids, we received a letter from the pediatric surgeon we had seen: "No treatment warranted at this time," it said, though "lower posterior fusion may be necessary in the future due to pain or progression of curvature." How could there be no treatment warranted, I wondered. Were we supposed to do nothing until surgery was needed?
I was writing for the National Post then and had managed to snag an interview with actress Isabella Rossellini, in town for the Toronto International Film Festival. Since time with her was limited, I cut to the chase. "I've read you have scoliosis. My son has it too," I blurted out. A startled Rossellini sternly replied, "Don't ever let him get the surgery." She went on to explain she'd had spinal fusion and had been in pain ever since. The few minutes we spent together, she talked emotionally about her scoliosis, while her handlers flailed. This discussion wasn't exactly what they'd had in mind. As she was being dragged away, her parting words were, "Remember, no surgery."
Increasingly concerned, I sought out Dr. Walter Bobechko, a highly respected Canadian scoliosis surgeon who had relocated years earlier to practise in Dallas, Texas (he has since died). Through a mutual friend, he agreed to see Jay while he was visiting in Toronto. After his examination, the expert echoed Rossellini's advice: "Don't ever let anyone do surgery on your son." He said that since Jay's curves were under 40 degrees, and more importantly, since he was a male (curves are more likely to increase in females), he was at low risk for progression. "He's one of the lucky ones," I was told.
But Jay didn't feel lucky. Although some scoliosis sufferers have no pain, his back pain was progressing relentlessly. Painkillers would often now appear on his bedside table when he was home from university. "My back is killing me, Ma," he would tell me, but it would be almost three years before he would admit that the pain was constant — and almost intolerable. He had been trying to keep it from me so I wouldn't worry. "This is seriously affecting my quality of life," he finally confessed. His doctor's solution had been to prescribe ever-more-powerful pain medications, medications that in spite of their devastating side effects weren't solving the pain issues. In the prime of his life, my son was almost disabled from back pain. I was devastated