While the Quebec College of Physicians remains skeptical of the Zamboni
"liberation" treatment for multiple sclerosis because of a lack of
scientific evidence, patients who have spent thousands of dollars on it
abroad say they have no regrets.
"I got my life back," said Christopher Alkenbrack of Nova Scotia, an MS patient who improved
radically in Poland this spring after a successful operation to open
his twisted neck veins.
"We have nothing to lose," added Francine Deshaies of Montreal, who was among the first group of Quebecers to
undergo the controversial treatment.
But despite feeling sympathy for patients seeking hope in foreign clinics, newly elected
College president Charles Bernard yesterday warned against medical
tourism for an experimental treatment.
Do not seek procedures to open blocked veins outside of controlled research studies, he told a
news conference. MS patients will have to wait for results of nine
international studies under way before Dr. Paolo Zamboni's method can
be considered standard practice, he said.
Results of the studies are expected in about two years but preliminary data suggest that
blocked veins or chronic cerebrospinal venous insufficiency are not
only present in people with MS but in patients with other neurological
illnesses, said Marc Girard, head of the Quebec Association of
Neurologists. Also, vein narrowing seems to show up much later in the
illness, suggesting it might be an effect rather than a cause of the
disease, he said.
The Zamboni theory linking MS to blocked neck veins has not been proven and the procedure has risks of complications,
including blood clots or deep vein thrombosis.
In the absence of proof and a standardized exam for narrowed, twisted or blocked
veins, Quebec radiologists have been told to refrain from diagnosing or
monitoring MS patients, said Frederic Desjardins, president of the
Quebec Association of Radiologists.
At least one patient had to have open heart surgery following complications in an experimental
trial of about 50 patients at Stanford University last year.
It's unethical to proceed with an invasive procedure without knowing if there are benefits, Desjardins said.
Desjardins mentioned that Merck Frosst withdrew Vioxx from the market when the
drug showed risk of heart attack and stroke at a rate of one in 30,000
patients. And the Zamboni method already showed adverse events in
Stanford where there were only 50 patients.
The disease affects about 12,000 people in Quebec. MS attacks the brain, the spinal cord
and optic nerve and causes such disabilities as fatigue, numbness,
paralysis and blindness.
cfidelman@montrealgazette.com
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