TORONTO — An Italian doctor's hypothesis that narrowed neck veins are a possible cause of multiple sclerosis is being questioned in light of published study results involving close to 500 people.
"There doesn't seem to be much difference between people afflicted with and without MS in terms of the prevalence of that condition," Dr. Edwin Klimek, president of the Association of Ontario Neurologists, said Thursday in reaction to the findings.
"And the argument then becomes, if the link becomes this weak, is it really anything but chance?"
The University of Buffalo study found the prevalence of chronic cerebrospinal venous insufficiency, or CCSVI, was 56 per cent for patients with MS, 42 per cent in patients with other neurologic diseases, 38 per cent in those with clinically isolated syndrome that can be a precursor to MS and 23 per cent in healthy controls.
"If this is true, and I think the data is beginning to emerge that there is very little association between the venous obstruction and the condition, if this is true, you really have to go back and wonder, you know, what was the original basis for the enthusiasm. How did this come about?" Klimek asked.
When Italian doctor Paolo Zamboni originally investigated 65 patients and 235 controls, he found that CCSVI appeared to be strongly associated with MS.
The lead author of the Buffalo study, which involved Doppler ultrasounds of 499 subjects, was Dr. Robert Zivadinov, who said the findings indicate that CCSVI does not have a primary role in causing MS. The results were published online Wednesday in the journal Neurology.
However, he noted that CCSVI was more prevalent in the MS patients with the progressive form of the disease.
"This is clearly a very important thing to take into account and we need to understand whether CCSVI is contributing to the disease progression, or is a consequence of the disease progression," he said Thursday from Honolulu, where he was attending the annual meeting of the American Academy of Neurology.
"With our study we can't answer that question, but obviously it's an extremely important question to be answered."
Marilyn Morasse, an MS patient in Midland, Ont., said the findings don't make a difference to her, and she plans to go ahead with a trip to Rhode Island at the end of the month to have a vein-opening procedure known as the "liberation treatment."
She said she has really slowed down in the last year or two and if she waits another three or four years to see if the procedure is offered in Canada, she might not be as mobile as she is now.
"I'm just hoping that the procedure may just slow the progression down," Morasse, 54, said Thursday. "I'll always have MS, but I'm hoping that it'll give me back some strength and movement maybe."
Morasse said that everyone she has talked to who has had the procedure has gained strength and mobility and more clarity in their memory.
But Cathy Groves, 53, also a Midland resident, isn't quite ready to take the big step, even though she had a checkup a year ago that determined she did have blockages in her neck veins.
"Basically, it's just that it costs so much money to have it done, cleaned out or whatever," she said.
"I'm kind of waiting for OHIP (provincial insurance) to say they'll pay for it because I can't afford to go down to the States and pay $5,000-something to have it done.
"And we're not even sure if it works for sure. So I would really like to have it done, but I'll just wait a little bit longer and see what the government decides."
In a statement Thursday, the MS Society of Canada said it welcomes the many studies examining CCSVI and MS.
"In addition to information coming from sources such as the AAN conference, we await the results from our own funded studies as well as from government-initiated projects like the MS monitoring system," the society said.
"The evidence to date neither proves nor disproves the CCSVI theory, underscoring the need for additional research. We remain hopeful that the focus given to MS issues lately will continue to yield benefits to people living with MS."
Zivadinov said patients should not seek the liberation treatment outside of clinical trials, but many Canadians have travelled abroad in the past year to countries where it is available.
Klimek said some of his patients have done so, but he's not observing differences in them.
"There should be measured discussion, there should be waiting for evidence, the evidence should speak for itself," he said.
He lamented that patient demand for the treatment has been a problem for his association.
"We've had neurologists who have been confronted and labelled as disinterested, unsympathetic, when in fact these are the same people who've been working their hearts out with MS patients for 10, 20 years, who've been highly regarded, and when they try to temper this enthusiasm with a bit of thought and a bit of reflection, have been basically critiqued," he said.
"I know one who became so disenchanted with the interaction over this discussion with some of his MS patients he quit."
Zamboni has speculated that reduced blood flow leaves iron deposits in the brain, leading to the neural lesions typical of MS. He suggested that reversing the condition by unblocking neck veins using balloon angioplasty could help alleviate symptoms.
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