TORONTO — Almost exactly a year ago, a theory about a potential contributing cause of multiple sclerosis burst into the public consciousness.
For many MS sufferers, it seemed an answer to their prayers; for the medical community it was variously viewed as a promising notion worthy of investigation to scientific nonsense or even an outright scam.
What can be said for certain, however, is that no other medical story has dominated the headlines in 2010 as the contention by an Italian vascular surgeon that narrowed neck veins could be an underlying cause of MS.
Dr. Paolo Zamboni speculates that reduced blood flow leaves iron deposits in the brain, leading to the neural lesions typical of MS. He suggests that reversing the condition — dubbed chronic cerebrospinal venous insufficiency, or CCSVI — by unblocking neck veins could help alleviate patients’ symptoms or possibly halt progression of the debilitating disease.
News of his theory created an avalanche of interest among people with MS and their loved ones, fuelled by discussion on Internet social media sites, YouTube testimonials by MSers “liberated” by Zamboni’s suggested technique for opening up the blood vessels, and hundreds of articles in the mainstream media.
In reaction to pressure from MS patients advocates, a few provinces have announced funding for various studies to help determine if Zamboni’s theory has any validity. But the federal government is steadfast in its decision to hold off financing a pan-Canadian clinical trial of the procedure until several other studies underway show whether CCSVI is indeed a hallmark of people with MS compared to those without the disease.
Meanwhile the MS Society of Canada has come under criticism for its handling of the issue, initially saying it could not back a scientifically unproven theory, then asking Ottawa to provide $10 million to investigate the concept, and finally supporting the federal government’s decision to wait.
“I think from all perspectives — the patients’ perspective, the medical community, the media, the social arena — the word that describes it for everybody is roller-coaster,” Ian Rodger, director of research at St. Joseph’s Healthcare in Hamilton, says of the last 12 months.
“A year ago, the notion when it was first released, gave people a huge amount of hope. And we heard all the positive stories and so it took off like wildfire.”
But as time has passed, reports have increasingly emerged about people who experienced little or no benefit from the procedure, says Rodger, who is leading a study looking at the prevalence of CCSVI in both MS patients and healthy controls. “We don’t hear so much about them, but I think we now recognize that it’s not a universal panacea.”
That hasn’t stopped MS patients from seeking the treatment, which is not approved for CCSVI in Canada.
Known as venous angioplasty, it involves inflating a tiny balloon inside the veins to expand them and restore blood flow.
In the last year, an estimated 3,000 Canadians with the disease have travelled to clinics that have popped up around the world — from Bulgaria and Poland to Costa Rica and Mexico to India and the United States — paying thousands of dollars each for the procedure.
Among them was an Ontario man who died in October after blood clots formed around a stent that doctors in Costa Rica had placed in one of his veins to prop it open. Stents are often used by clinics offering the procedure, despite Zamboni’s caution that they shouldn’t be used.
“There’s a lot of unfortunate things that have occurred,” says Dr. Jock Murray, who recently retired as head of the MS research unit at Dalhousie University in Halifax. “One of the really unfortunate things is that it has polarized all the groups that are normally co-operating.”
“So you have now the patients who see themselves pitted against the doctors and the neurologists. They also feel they are not being supported in the way they want to be by the MS Society, so now they’re attacking the MS Society.
“And they’re now pitted against the politicians, because they don’t see the politicians as being supportive as they would like to see.”
Murray, a member of a working group advising the MS Society on CCSVI, is among the minority of neurologists who agrees Zamboni’s concept should be scientifically assessed, like “any other theory of interest.”
For Linda Molyneux of Toronto, whose 23-year-old son with MS had venous angioplasty in Bulgaria six months ago and is showing improvement, there is no question it should be investigated — and more than that, she says the procedure should be provided by Canadian hospitals.
“MS patients would be happy if it was just available to pay for here in Canada, the way they might pay for a nose job or whatever,” says Molyneux, one of a number of activists raising money to fund CCSVI research.
She points out that her son’s improvements have been gradual, “not an overnight epiphany.”
“And I think that’s what people should look towards if they’re going to have this procedure, not that they’re going to jump out of their wheelchairs, but that gradually they might start feeling somewhat better and have an improved quality of life.”
Ted Robak, a professor of forestry engineering at the University of New Brunswick, believes that having his neck veins unblocked at a Polish clinic in April has not only improved his MS symptoms, but also will keep him working and mobile.
Diagnosed in 2004 with secondary progressive MS, one of the more advanced and debilitating forms of the disease, the 57-year-old says he expected he would have to leave his job in the coming year and be forced to use a wheelchair instead of a cane to get around.
“It’s changed a lot,” Robak says of his condition, particularly his level of fatigue, which had forced him to take several naps a day in order to do the simplest of tasks.
“I don’t have to steel myself to do little things like go down and check the mail in my apartment. My mobility has improved some ... I don’t use the cane anymore except for longer walks ... I’m not talking about retiring or going on disability this year.”
Robak, who spent about $9,500 for the procedure plus another $4,000 for travel-related costs for him and his wife, wasn’t prepared to wait the 10 years it might take to rigorously test Zamboni’s theory to prove that it works. And he doesn’t think others with MS who can’t afford to travel outside Canada for the procedure should have to either.
“We’re talking about people who are going downhill. If somebody told me that let’s say five years after this I would be exactly the same as I was when I had the treatment (and had not become worse), do you realize how much MS patients would pay for that? How happy they would be?”
It was that hope of improving the quality of his life and stopping the relentless progression of MS that sent Ben Steinfeld to an Albany, N.Y., clinic for the procedure in November, at a cost of about $5,000.
But the former Toronto journalist, whose career was cut short by the disease several years ago, has not seen a dramatic change in his symptoms, which include hand tremors and an inability to walk more than about six metres unaided.
“Are there improvements? Yeah. Do I have better blood flow? Yeah, I know I do,” says Steinfeld, who feels he has more energy and a better colour in his skin.
“But did my tremor go away? No. Can I walk like a I was going for a stroll in the park? No. But I couldn’t before. The bottom line is I’m definitely no worse off, it was definitely a non-invasive, non-negative experience.”
Steinfeld, who believes Zamboni’s theory has validity but needs refining, recalls that one neurologist he consulted dismissed the notion as here today-gone tomorrow, like so many other purported causes of MS that caused a lot of excitement over the years, then fell by the wayside when they didn’t hold up.
“In a year from now, it’ll be totally forgotten,” was the way the doctor phrased it, he says.
Given the level of interest — and some would say hype — it’s unlikely Zamboni’s theory will fade away anytime soon.
“We’re going to proceed with this, trials are going to go on, even though patients object to the time (they will take),” says Murray.
“I think the level of dialogue is going to calm down somewhat. It’s going to become a little more balanced as patients speak more about lack of benefit or complications. And so I think it’s not going to go way, but I don’t think it’s going to increase.”
Rodger agrees, saying the coming year will see more studies being conducted in well-controlled environments that will provide more definitive answers.
“If we were having this conversation a year from now, I think there’d be evidence that leads us in one direction or another: ‘Yes, it’s a correct hypothesis’ or ’You know what, no it doesn’t stand up to scrutiny.”’