Jan Mills can feel her fingertips. Most people take that feeling for granted, but Mills doesn't. Multiple sclerosis stole the sensation right out of her hands 24 years ago. But since a doctor in Mexico opened her clogged neck veins in April, Mills says she's been able to do all kinds of things she couldn't do before.
She can walk. She can drive a car. She can even play golf — though she jokes she's not going to make the Ladies Professional Golf Association tour any time soon. But the thought of hitting the links must have been far from Mills' mind this winter when she was confined to a wheelchair and walker.
Mills travelled from her home in Kelowna, B.C., to a private clinic in Mexico this spring for an experimental MS treatment that has given hope to scores of people who suffer from the debilitating nerve disease.
Surgeons opened her blocked neck veins with a stent. She says she felt a change on the operating table.
"I moved my arm and was able to feel the palms of my hands, which have been numb for two decades," Mills said.
"And I thought, 'Oh my God, I can feel the palms of my hands.' And then while I was doing that, I noticed the dexterity of my fingers.
"I was so excited when they were wheeling me to the recovery room, where I met my husband ... and I said, 'Honey, look! I can feel my hands, and look how fast I can move my fingers.'"
Mills believes in the treatment. But a group of leading researchers isn't so sure. Top North American scientists say there's not enough evidence to back claims by Italian doctor Paolo Zamboni that blocked neck veins are linked with MS. The Canadian Institutes of Health Research held a news conference Tuesday in Ottawa to make recommendations on MS research priorities. The head of the federal agency which funds health research says the experts weren't convinced Zamboni's procedure works and is safe, and so they say it's too early to back clinical trials.
"There was a unanimous recommendation by the members of the working group not to support such a trial at this stage," Alain Beaudet said. "Quite simply, the experts agreed that there is an overwhelming lack of scientific evidence on the safety and efficacy of the procedure".
"Nor is there any evidence at this time that there is a link between venous malformations and/or impaired brain venous drainage and multiple sclerosis." Multiple sclerosis has long been thought to be an autoimmune disease.
But Zamboni contends that iron builds up in the brain because blood isn't draining properly. So he treats his patients by opening up the veins, either by inserting a small balloon — a procedure called angioplasty — or by inserting a stent. Zamboni's research found vein blockages in all the MS patients he examined, and no blockages in healthy people he used as control subjects. But work elsewhere hasn't entirely supported his findings. It's not clear if MS causes blocked veins, if blocked veins cause MS, or if the two are entirely unrelated. Yet even the faintest glimmer of hope has been enough to persuade Canadian MS patients to travel to clinics in Europe and pay for the procedure.
Some sufferers of MS and their families have been vocal in their demands that the MS Society of Canada back Zamboni's treatment. The MS Society of Canada has said it wants to know more about any possible link between blocked veins and MS before it backs Zamboni's work. In June, the society and its U.S. counterpart awarded a combined $2.4 million in research grants aimed at finding out if Zamboni's theory is correct. That research is expected to take two years.
But the Saskatchewan government has opted to fund clinical trials of the contentious treatment despite the lack of solid proof it actually works.
Liberal MP Carolyn Bennett, her party's health critic, wrote on her blog that it is "disappointing that Canadians with MS will have to wait still longer for definitive answers on the efficacy" of Zamboni's treatment.
In my view, just knowing the cure is so close, would give me hope enough to hang in there a while longer. There is hope, the only thing we can't live without.
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