Online
forums at the National Scoliosis Foundation's
website (NSF is a patient-driven, non-profit
organization out of Boston; no such foundation
exists in Canada) only added to my angst — heart-wrenching
stories written by young people struggling
to cope with the disabling pain of scoliosis.
One teen, describing a constant state of mental
fog from her prescribed narcotic drugs, and
desperately seeking an alternative, begged
for help; a young store manager described pain
so excruciating he was forced to periodically
collapse on the backroom floor of his workplace
to try to get relief. He feared he would be
fired — or be forced to quit. There were
complaints about doctors who wouldn't take
pain seriously, doctors who said scoliosis
didn't cause pain. We'd heard that one before.
Some older, more resigned scoliosis sufferers
offered words of encouragement to the distressed
teens, even as they themselves talked about
years of constant, daily pain, operations,
re-operations, and eventual disability. Good
Lord, maybe my son really was headed for a
lifetime of pain.
Heartbroken, I hopped a plane to California where Jay was then living
so I could try to help. An appointment with another top scoliosis surgeon,
this one in L.A., turned up nothing new. Jay didn't need surgery yet,
we were told, and he shouldn't be having so much pain. Here we go again,
I thought as I caught Jay's frustrated gaze. I was overwhelmed by the
hopelessness of his situation.
In my hotel room that night, after the dinner Jay could hardly sit through
because of the pain, I began surfing "chronic pain management." I
couldn't believe it had come to this, but there seemed to be no other
solution. A pain clinic in Los Angeles popped up, touting a flexible
scoliosis brace for children — and adults. A brace for adults?
I was surprised to learn that the brace had been invented at Sainte-Justine's
Hospital in Montreal. Why had I never heard of it? The next morning I
called Sainte-Justine's and got through to one of the inventors, Dr.
Charles Hilaire Rivard, a research scientist, orthopaedic surgeon and
former head of surgery at the Université de Montréal.
"Will your brace help my son?" I asked desperately, after telling him
Jay's story. "Yes, it will," he replied confidently. The brace, called
SpineCor, an elaborate system of elastic bands, applied with the use of software
designed for each individual curve, had been created for 10- to 16-year-old children
with AIS and was now being used on adults to relieve back pain. Since Jay was
living in California, Rivard recommended Dr. David Gorrie, one of several California
chiropractors who had been trained in fitting the brace by the Sainte-Justine's
team. "He's scientific, and he won't overcharge you," Rivard promised.
I was hopeful, but Jay, who had tried everything from acupuncture to physiotherapy,
Thai massage, vibrating chairs, yoga, Pilates, and even Dr. Ho's massage therapy
(I gave it to him one Christmas), was skeptical. After all, I had discovered
the brace on the Internet. "If I end up looking like Quasimodo . . . " he
threatened. But desperate for pain relief, he decided to try it, and on April
Fool's Day, 2007, was fitted with the brace to the tune of US$3,500. On April
2, the fool flew back to Toronto with her fingers crossed.
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