Article in Macleans Magazine - Canada

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Macleans Magazine (Canadian)

Amazing brace

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.

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

ton (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.

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-e's Hospital in Montreal. Why had I never heard of

it? The next morning I called Sainte-e's and got through to one

of the inventors, Dr. 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. Gorrie, one of several

California chiropractors who had been trained in fitting the brace by

the Sainte-e'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.

Within a couple of days, a disbelieving Jay reported that his daily

back pain was subsiding — dramatically. And after a couple of weeks,

the chronic pain that he had suffered for years was virtually gone.

The brace was retraining his muscles, and in doing so, correcting

painful postural problems caused by the asymmetry of his spine. My

son was finally painfree for the first time in six years. I was

elated, but miffed. Why hadn't I heard about this great Canadian

invention that had helped my son so much? I went to Sainte-e's

in Montreal to find out.

" Maybe the reason you've never heard of the brace [used in Quebec

since 1993] is because they don't want to use it in the rest of

Canada, " Dr. Rivard told me bluntly. The SpineCor brace is used in 18

countries, including England, France, Germany, Australia, Spain,

Switzerland and the U.S., but not in " English " Canada. Ten thousand

children have been treated with the brace; it is distributed out of

the U.K. worldwide. " No one in Canada wanted it, " an exasperated

Rivard said.

A $12-million grant from the Quebec government in 1992 enabled Rivard

to get the brace off the ground, and to begin research on the

development of new instrumentation to be used in the place of fusion.

The intellectual property rights for the brace are owned by Sainte-

e's.

Rivard credits his colleague Dr. Collaird for coming up

with the idea for the brace that, he says, " is keeping kids out of

surgery. " Collaird, a pediatric orthopaedic surgeon who studied the

biomechanics of the spine for 10 years and spent another four years

developing SpineCor, said, " Unlike traditional braces, there is no

muscle atrophy, and no side effects. " Rivard added that the " dynamic "

SpineCor " uses the muscles. It's like being in physiotherapy 24/7. "

The brace has been used on adults for only about two years, the goal

being pain relief not straightening since the spine is mature. " No

one thought it would help adults, " said Collaird. Still, Rivard

admits that the brace doesn't work for everyone. He continues to use

the Milwaukee brace on children when the SpineCor won't hold a large

curve, and says that when a growing child gets beyond a 50-degree

scoliosis curve, surgery becomes almost unavoidable. " Every time I

fuse a child, I feel bad, " the Montreal doctor told me as his eyes

welled up.

" It's been so long and so difficult, " Collaird confided, as she

rushed toward him with tissues. " Tell people I just want to help

kids, " Rivard said. " I know it's a complicated brace, but it works.

Why aren't the others using it? "

Back in " English " Canada, I contacted Dr. Ben Alman, head of the

orthopaedic division, and AIS specialist, at the Hospital for Sick

Children, to find out why the hospital doesn't use the Quebec

brace. " The reason SpineCor isn't used here is not because it is good

or bad, " Alman told me. " It's a financial issue. OHIP [Ontario's

health insurance plan] doesn't cover it. " Hard braces are covered " at

least partially, " he said. Are parents really not being told about

this brace because of the cost? Alman added, " Part of the problem is

that the brace is too new to know for certain long-term results. "

But the Canadian brace is not " too new " for two of the most

prestigious children's orthopaedic hospitals in the U.S. The SpineCor

is used at the renowned Shriners Hospital for Children in Erie,

Penn., and at the famous s Hopkins Hospital in Baltimore, Md. Dr.

Sponseller at s Hopkins believes that the SpineCor

brace " works for smaller curves, in patients who are very diligent

about wear. " Although Sponseller also said that some patients do not

respond to any kind of bracing, he added, " I have had some noticeable

successes as well, preventing surgery in patients who may well have

needed it. " Dr. is the former chief of staff at

Shriners and is now professor and chief of pediatric orthopaedics at

Strong Memorial Hospital in Rochester, N.Y. " While I do like the

theories of the SpineCor, " he said, " it needs good testing to know if

it is any more than just a nice-sounding theory. " Both and

Alman refer to studies now under way to determine if any of the

braces currently in use really work.

Some experts believe the best chance of avoiding surgery is in

diagnosing curves early. In the U.S., school screenings are done in

many states. Girls are generally screened in the fifth and eighth

grade, and boys in the eighth or ninth grade. The method used is the

forward-bending test: the child bends over to a 90-degree angle

while the examiner, standing behind, compares both sides of the back,

looking for asymmetry, like a protruding shoulder blade. When the

child stands up straight, the screener can also check for unequal

shoulders, or an uneven waist. If a problem is noted, the child is

referred to a doctor. Canada has no such screenings in public schools.

Many doctors think school screening is a waste of time, since they

don't believe there is an effective conservative treatment for

scoliosis. Rivard disagrees. " I believe finding curves earlier, while

they're smaller and treatable, will keep some children out of

surgery. " According to Rivard, fewer fusions are done in Europe due

to their rehabilitative approach to scoliosis. " In Europe, the first

line of defence for scoliosis is rehabilitative therapy. In Canada,

the first referral is to a surgeon, " he says.

At Sick Kids Hospital, Dr. Alman told me that scoliosis patients with

curves too small for traditional treatment (under 25 to 30 degrees)

are now routinely referred to the hospital's on-staff

physiotherapist — but not for any active treatment. " Mainly to wait

and watch and keep an eye on things, " he said. Joe O'Brien, president

of the National Scoliosis Foundation, is appalled at that. " I've

never understood the logic of 'wait and watch,' " he told me

indignantly. Also a supporter of school screening, O'Brien, who had

his first scoliosis surgery at the age of 16, and four subsequent

surgeries, said, " The only operation I regret was the first — it

created all the problems that made the following surgeries

necessary. " O'Brien has three children with scoliosis and has managed

to keep them all out of surgery: one using the SpineCor. Asked about

the Quebec brace, he said, " It did what it was supposed to do [hold

the curve and prevent surgery]. "

SpineCor also did what it was supposed to do for Goulet, a

second-year journalism student at Université de Montréal who was

fitted with the brace at the age of 15 due to a painful 25-degree

curve. She wore it the recommended 21 hours a day for 18 months, and

said, " I didn't mind at all. I even had a boyfriend. " Before being

fitted with the SpineCor, Goulet had been told she might eventually

need surgery. " And that I must wear a hard brace, " she said. " I cried

and cried. " Long out of the brace, her curve is stable at only 12

degrees (anything under 10 degrees is so mild it's not even

considered scoliosis). " I am so thankful that I met Dr. Rivard, " she

said.

In the course of my research for this story, I made several

unannounced visits to the busy Sainte-e's spine clinic,

randomly speaking with parents and patients, some in treatment, some

in follow-up. Those I spoke with were grateful and had nothing but

praise for the Quebec doctors. All were success stories. I also met

13-year-old Esme Tremblay from Ottawa, who might not be as lucky. Her

worried parents, and Ruth, told me that although their

daughter's curves were discovered three years ago, when they measured

under 20 degrees, nothing was done until they advanced enough for a

cumbersome hard brace, a brace Esme, like most youngsters, found too

uncomfortable to wear. With Esme's curves now measuring more than 50

degrees, Ruth, who recently discovered SpineCor on the Internet,

said, " We're getting in the game really late, so I'm not sure the

brace is going to work. " Rivard has given Esme only a 15 per cent

chance of success because of the large size of her curves. But the

Tremblays want to try the brace anyway. " The Ottawa surgeon who

recommended fusion for Esme downplayed the seriousness of the

operation, " an upset Ruth told me. " He gave me the impression that it

was no big deal. " Ruth begged me not to reveal the doctor's

name, " because we might need to go back to him for the surgery. " The

Tremblays are looking for answers. " Why weren't we told about

SpineCor by our doctors? " Ruth wants to know.

Although there is increasing evidence that the SpineCor brace works

for some people, Canadian doctors outside of Quebec continue to

ignore it. Are some Canadian children undergoing spinal fusion that

could have been averted if the Quebec brace had been prescribed?

Rivard says that 78 per cent of his SpineCor patients are either

stabilized or improved after SpineCor treatment, with 22 per cent

going on to need surgery. Without the brace, he believes that at

least 40 per cent would need fusion.

Nine months after being fitted with SpineCor, Jay is still pain-free,

and calls the brace " bloody brilliant. " He refers to the inventors

as " those geniuses from Quebec. " I'm so grateful, and was so excited

about Jay's pain relief, that I left phone messages for the Toronto

and L.A. surgeons we had seen, offering to provide details about the

brace so they could help other patients. Neither doctor ever called

me back. I asked Rivard what would have happened to Jay if we hadn't

discovered SpineCor. " He would have wanted surgery, " Rivard said,

shaking his head. " The pain from scoliosis can be that bad. "

Online, a 19-year-old California teen asks, " Has anyone else had

success with SpineCor? " Also fitted with the brace by Dr. Gorrie, he

says, " This is the first time I've been able to sit comfortably for

years. " A 55-year-old woman who couldn't stand and who was in

constant pain until she was fitted with SpineCor says she is now pain-

free, her posture perfect. Who knows what the future holds since

there's no cure for scoliosis, though the first gene associated with

this ancient disorder was discovered just last year by U.S.

researchers, so maybe one day there will be a cure.

Until then, controversy surrounding the treatment of scoliosis will

continue to rage. But meanwhile, although not even on the radar in

Canada, Rivard's and Collaird's work continues to gain respect

worldwide, with some patients travelling to Montreal from as far away

as San Francisco and overseas for treatment. Ruth Tremblay of Ottawa

is resentful. " Why weren't we given the chance by our doctors? " she

asks, adding wistfully, " And we were only a two-hour drive away. "