Photographs by Andrew Tolson
Last week, in a traditionally appointed Vancouver living room, Dr. Mark Godley made an announcement that could change the face of Canadian medicine. Addressing a multiple sclerosis support group that had formed on Facebook, the anesthesiologist and medical director of False Creek Healthcare Centre shared “very, very good news”: “A patient in B.C. had the procedure done here in B.C. today,” he said as the dozen people gathered erupted in claps, cheers and enthusiastic calls for details. The group here knows the lingo: “the procedure” is the radical and game-changing “liberation treatment” pioneered and named by Italian vascular surgeon Paolo Zamboni that has dominated MS chat rooms and academic research since it was first reported by media last November. The MS patient in B.C. showed results consistent with Zamboni’s, Godley reports: “He has warmth in his hands, the numbness has gone from his fingers, and for the first time [in years] he’s able to lie flat on his back.”
What’s stunning about Godley’s announcement is that, until now, the “liberation” treatment—a simple surgery that sends a tiny balloon to clear a clogged jugular vein—has been almost entirely unavailable in Canada, where it’s considered “experimental” by health officials. Provincial health care plans won’t fund it; doctors won’t perform it. Instead, Canadians have been flying to private clinics in Poland, Kuwait and India, paying upward of $10,000 for the surgery. In fact, the procedure that Godley describes was performed under the radar in an unnamed B.C. hospital, billed as a routine angioplasty. It was done “very quietly without the hospital knowing what he was really there for,” he says. Soon, though, such stealth will be unnecessary: in May, Godley said, his private clinic will be the first in Canada to openly offer the day surgery. “Wow!” cried out one member of the support group. “What’s the cost?” asked someone else, to which another replied, laughing, “Who cares?”
Such excitement has greeted Zamboni’s research among MS patients, who a year ago couldn’t have imagined a possible cure for the degenerative disease that affects 2.5 million people worldwide. Most are diagnosed at a young age—between age 15 and 40—more of them women than men, and most of Northern European descent. Canada has among the highest incidence of the disease—between 55,000 and 75,000 people, with 1,000 new cases every year. Not only is there no cure, researchers have not found a cause. All that’s known for certain is that the symptoms, which include numbness, loss of mobility, bladder malfunction and paralysis, are devastating.
Conventional thinking is that MS is an autoimmune condition that causes the body to attack and damage the protective covering, or myelin, around nerve cells in the brain and spinal cord, making them slow to emit impulses and move muscles. Zamboni’s findings, published in August 2009, point to the disease having its roots in the vascular system, a theory that dates back to the 19th century. When studying the ultrasounds and MRI results of MS patients, the medical professor at the University of Ferrara discovered that virtually all showed a blockage or a narrowing of veins leading from the brain, a condition he dubbed “chronic cerebrospinal venous insufficiency,” or CCSVI. Such blockages, he posited, could cause blood to flow back to the brain, resulting in toxic iron deposits that in turn could trigger MS symptoms. When he cleared the veins using a balloon angioplasty, Zamboni witnessed remarkable transformations: those in the early stage of the disease had a full recovery; those with severe disabilities showed marked improvement—more energy, renewed sensation and movement in hands and legs, and improved vision. Zamboni’s own wife, Elena Ravalli, who has MS and who inspired his research, has not had another attack since she had the procedure years ago.
As MS patients convened on the West Coast for Godley’s big news, the traditional medical gatekeepers of the disease were gathering in Toronto for the American Academy of Neurology’s annual meeting. Just how much MS has come to dominate the neurological agenda is reflected in the fact some 20 per cent of papers at the convention deal with the disease, a handful of which explore the possible CCSVI connection. Zamboni himself will make a star turn. The notion that MS could be caused by a vascular plumbing problem has turned MS research on its head, or, as a paper given at McMaster in February put it: “Is Multiple Sclerosis really Multiple Stenosis?”, the medical term for narrowed veins.
Many neurologists have yet to be convinced. At the far extreme, there’s professor Alastair Compston, head of the department of clinical neurosciences at the University of Cambridge and one of Britain’s pre-eminent MS researchers, who out-and-out dismisses Zamboni’s findings: “People with MS are unlikely to benefit from treatments that dilate blood vessels,” he said. Others suggest patients’ positive response is a “placebo effect.”
Dr. Amit Bar-Or, a neurologist at McGill University who co-authored a recent paper in the Annals of Neurology, takes a more measured approach. He says that Zamboni raises two important questions. Is CCSVI unique to MS patients, or do others have it too? And, if it is unique to MS, then is it a cause or a consequence of the disease? Bar-Or points out that as more research is conducted, there has been less and less conclusive evidence that CCSVI is found only in MS patients. Zamboni’s initial 2006 study showed CCSVI in 100 per cent of MS patients compared to zero in non-MS individuals; subsequent data by Zamboni and later researchers at the University of Buffalo, however, has not been so definitive: the first Buffalo study found 55 per cent of MS patients had CCSVI compared to 22 per cent of non-MS individuals. Then, findings released at the conference this week further showed “an increased prevalence of CCSVI in MS” but lower than Zamboni’s original study. “So what went from clearly distinguishing the illness from the non-illness [is] much more grey,” says Bar-Or
What’s more, if CCSVI isn’t the cause of MS, then liberation surgery may not be much help over the long term, says Bar-Or. “If you open up the vessels that are damaged as a consequence of the disease, you won’t necessarily solve the disease.” And given the “relapse-remission” cycle common in MS patients, it’s difficult to know yet—in the absence of rigorously controlled studies—whether individuals who report relief after liberation surgery are doing better “because of the procedure or in spite of the procedure.” Any neurologist will tell you that one constant in MS is that it’s ever-changing.
