There's hope for the 75,000 Canadians suffering from multiple sclerosis.
Outside of Canada, that is. I know it because I've experienced it. Or,
rather, my wife, Tracy, has. She walked out of a medical clinic in
Albany, New York, three weeks ago following a 40-minute procedure with a
brighter outlook on the world and her future.
Her eyesight was sharper. The main symptoms of her MS -- the fatigue and vertigo which
have forced her to sleep two hours every afternoon for the past nine
years -- have all but disappeared. Yes, it cost us thousands of dollars
to go cross-border shopping for health, but gaining back two hours
every day? Priceless.
If you know anyone with MS, and Canada has one of the highest rates of the disease in the world, you've probably
heard similar stories to ours.
People who are travelling the globe in search of the procedure that's unavailable here, often
cobbling together money from friends, family and neighbours for the
trek. To Poland. Mexico. Costa Rica. Bulgaria. Italy. Kuwait. Jordan.
India. California. Or like us, to Albany.
Most have reported improvements. Some modest. Some remarkable. Patients formerly confined
to wheelchairs are taking steps again. MS sufferers who couldn't
previously walk long distances are now jogging. Warmth and sensitivity
have returned to hands and feet. Energy levels have spiked.
All because of a process called the "liberation procedure," which is
similar to a heart angioplasty. It's not a cure for MS, but it's
believed the treatment can improve many of the debilitating conditions
associated with the disease.
The champion behind the theory is an Italian doctor with a household Canadian name-- Dr. Paolo Zamboni --
who believes MS is a vascular disease. Zamboni's studies show that
excessive iron damages blood vessels in MS patients and clogs the veins
in the neck. He labels it chronic cerebrospinal venous insufficiency,
or CCSVI. Once the blockages are cleared up, proper blood flow returns
to the brain and many symptoms of the disease either fade or disappear
altogether. The idea has turned MS research and treatment on its ear
because MS had previously only been defined as a neurological disease.
Previously, most research into possible cures for MS centred on
neurological-based solutions. Neurologists typically treat MS patients
and advise strategies for coping with the disease.
That clash between new and old ideologies has hindered the progress of CCSVI
research in Canada. The Canadian government has yet to support clinical
trials to study the theory, never mind the procedure. Many
neurologists have dismissed Zamboni out of hand, saying there's limited
scientific research to back up his theories and arguing the procedure
is too risky. Further, the anti-Zamboni faction suggests the positive
results from the procedure are simply placebo effects, claiming that
patients want to believe so much that they're imagining the
improvements.
Here's the odd development. Vascular surgeons, who, for the past 25 years have performed venous angioplasty -- a process
similar to the liberation procedure -- have been barred from doing the
procedure on MS patients since Zamboni's studies became public on a W5
report last November.
Even the MS Society of Canada, which doesn't recommend the procedure until there are more
scientific studies, is experiencing a division within its ranks.
Chapter members have resigned because the MS Society isn't being more
aggressive in its pursuit of testing and treatment. Warren Bazinet,
chairman of Owen Sound's annual MS Walk, resigned last week over the MS
Society's stance. All of the above has given rise to conspiracy
theorists, wondering what's really behind the foot-dragging from our
government and health care system.
At least there's some promise from Saskatchewan which, in October, earmarked $5 million for clinical
trials on CCSVI to begin next April. Presumably, if those results are
favourable, the federal government will follow up with its own studies.
In a best-case scenario for MS patients, the liberation procedure is
years away from becoming a reality in Canada.
That wait is simply too long for many MS patients, whose life expectancy is five to
10 years shorter than the general population. Drugs to deal with the
symptoms typically run in the $20,000-$40,000 range per year.
Accordingly, Canadians with MS are flocking elsewhere.
Which brings us back to us. Like many others, we resorted to finding
information the new-fashioned way: surfing the Net, where we discovered
international options and chat rooms buzzing with frustration about
what wasn't happening in Canada. New information about treatment
options is closely guarded, for fear that clinics offering any help for
MS patients will be shut down.
In the spring, we explored the possibility of going to Poland, but the waiting lists for the procedure
were well over a year long. Instead, we made a tentative appointment
to have the surgery in India in July, despite the whirlwind 24-hour
plane trip.
Before we made that leap, however, we spent $1,200 for a pair of neck scans at Montreal's Westmount Square Medical
Imaging, the only Canadian clinic willing to test MS patients for
blocked veins. One week after Tracy visited Westmount, the clinic was
no longer allowed to test MS patients, by order of the College des
medicins du Quebec, which governs the province's doctors. Patients
without MS, however, could still get neck scans. In other words, a
private health clinic couldn't use its machinery on patients willing to
pay the price to determine if they had a health issue.
As we waited two weeks for the Westmount results to be forwarded to our
family doctor, a random Google search yielded information about the
Albany clinic. The wait for the procedure was only five months and the
drive only six hours.
Alas, the results from Westmount were disappointing, showing no evidence of vein blockages. Our hopes
disappeared. Yet, when a fellow MS patient informed Tracy that there
was an additional test to determine blockages and was available at the
Albany clinic before the procedure, we gained new hope.
With the support of grandma on the home front to look after our children, we
went south of the border. During the drive, we tried to shake the
feeling we were doing something wrong by turning our backs on the
Canadian health system.
We don't feel that way any more. Seeing is believing.
Ken Warren is a Citizen sports writer.