Canadian study discounts controversial MS treatment but not everyone agrees

It's doubtful advocates of a controversial treatment aimed at easing symptoms of multiple sclerosis will be deterred by a new Canadian study saying essentially it's useless.

The research by a team at McMaster University in Hamilton, Ont.,, published Wednesday in the online scientific journal PLOS ONE, concluded there's no evidence that blocked and twisted veins in the neck are a factor in the disease and that unblocking them could help relieve debilitating MS symptoms.

MS attacks the brain and spinal cord, destroying the mylin sheath around the nerves and producing a variety of symptoms, from dizziness and balance problems, difficulty walking, bowel and bladder problems, pain, weakness, spasticity and tremors. The symptoms can come and go for a lifetime but often can progress to the point of serious disability.

Italian vascular surgeon Paolo Zamboni, whose wife suffers from MS, theorized that blocked neck veins played a role in the disease by preventing blood from draining properly from the brain. He dubbed the condition chronic cerebrospinal venous insufficiency, or CCSVI.

[ Related: Canadian study finds no blocked neck veins in MS patients, but CCSVI debate goes on ]

Zamboni, who published his theory in 2009, said more research was needed to confirm his hypothosis. But that didn't stop desperate MS sufferers from racing to seek the treatment.

The procedure, similar to angioplasty used to unblock arteries of heart patients, involves snaking a device through the blocked vein and sometimes implanting a stent to keep it open.

It is not approved in Canada, which has one of the highest MS rates in the world, so many Canadians have gone abroad to get the treatment, known as "liberation therapy."

Many returned claiming major improvements in their symptoms, including regaining function in their limbs and renewed strength.

I need to state a personal interest here.

My wife, Madeleine, has advanced MS and two years ago we went to a U.S. clinic so she could undergo the procedure. While it didn't get Mad out of her wheelchair, she showed some subtle improvements related to better circulation, including more sensation in her hands, more energy and an end to the three-day headaches she used to get.

Some of her friends also went to the U.S. and one as far as Poland to get the treatment, with varying results.

Mad wrote about her experience in seeking and getting liberation therapy and its aftermath in a feature article for Yahoo! News Canada last year.

[ Related: My liberation: A fight against MS and Canada’s medical establishment to try controversial treatment ]

The McMaster study used ultrasound to examine 100 MS patients and equal number without the disease, the Globe and Mail reported.

“We saw absolutely no evidence of CCSVI” in the MS patients, lead researcher Dr. Ian Rodger told the Globe. “I’ve been in research a long time and it’s rare that you find results as black and white as ours.”

The results buttress other studies that have cast doubt on the link between twisted veins and MS.

Nonetheless, some provinces and the federal government, faced with lobbying from MS patients, have launched clinical studies of liberation therapy.

Dr. Anthony Traboulsee, medical director of the UBC Hospital MS Clinic in Vancouver, is heading the $6-million federally-funded trial involving about 100 patients. He thinks it will be more definitive than the McMaster and other studies.

Besides ultrasound, Traboulsee will use venography, which involves injecting dye into veins, then X-raying them to determine whether they're blocked. The McMaster team's reliance on ultrasound and magnetic resonance imaging (MRI) to look for abnormalities is not the "gold standard" test for determining vein blockages, he told Postmedia News.

“It doesn’t mean that the results are wrong,” he said, but “as important as the research is, it has to be taken with a grain of salt."

Rodger took no satisfaction in his study's negative conclusions.

“I would dearly love for there to have been something which was so compelling that you could say this is absolutely something that the MS population could look towards,” Rodger told Postmedia News.

But his and other studies “are all saying that there is nothing here” that merits the the surgical procedure known as liberation therapy.

The results don't deter the treatment's supporters, such as Diana Gordon of Barrie, Ont., who underwent the procedure in New York in 2010.

“It’s been over three years now, and my improvements have been profound,” Gordon told the Globe. “I don’t even remember what [life with the disease] was like.”

Lori Lumax of Regina, diagnosed in 2003, agreed. She can't afford a trip abroad but hopes the treatment eventually will be approved in Canada.

“I just know too many people who have had success with it,” Lumax told the Globe. “All in all, I still think it’s a positive thing to do. It’s not like the drugs they give us are any better.”