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.
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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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