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.
I frantically searched for a solution, only to discover that the conventional
treatment options in Canada are confusing, antiquated and controversial,
even though AIS affects up to three per cent of the adolescent population,
with one per cent going on to need treatment. It is one of the leading
orthopaedic problems in children and tends to run in families. Mild curves
under 25 degrees are virtually ignored in this country, except for a "wait
and watch" policy. Beyond that, treatment options get downright
scary. The traditional braces that are prescribed look like something
from an ancient torture chamber. The TLSO (Boston-style brace) and the
Charleston (nighttime) brace consist of a hard shell that extends from
under the arms to the hips. The Milwaukee brace, used since the 1940s,
is even worse: metal rods jut out from neck to waist. These were the
braces my son was too late for? It is hardly surprising that many teens
refuse to wear these ungodly contraptions, prompting one surgeon to tell
me, "We're getting away from bracing kids in Canada altogether,
and going straight from 'wait and watch' to surgery." The more I
found out about scoliosis, the more frightened I became.
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