MS patients want access to new surgery

Hundreds of Canadians who have multiple sclerosis are demanding access to a new procedure that MS specialists warn is at best experimental and at worst dangerous.

More than 20 Canadians have gone to a private clinic in Poland in the past two months alone. It is one of a handful of locations worldwide offering an operation toremove blockages in neck veins that drain blood from the brain back to the heart.

Dr. Paolo Zamboni of Ferrara, Italy, describes the condition as chronic cerebrospinal venous insufficiency or CCSVI. His research suggests the narrowed or blocked veins lead blood to move backwards or reflux back into the brain and spine, causing damage.

The hypothesis is unproven and studies are underway to show how common CCSVI is in MS patients, those with other neurological conditions and healthy people, as well as to explore its potential role as a major risk factor in MS.

While studies in Canada get underway, some patients are travelling overseas, paying for tests and surgery out of their own pocket. Others are lobbying for the Canadian health-care system to cover the diagnostic tests to look for blocked veins in people with MS.

"Even the Doppler testing is not covered by OHIP, for example," said Andrew Katz of Ottawa, who has MS and uses a wheelchair. Katz was willing to pay $500 out of pocket for Doppler ultrasound testing in Montreal.

Katz and his friends are also putting togetherposters and signs to carry in a march planned for May 5 on Parliament Hill.

"The point of the rally is to demonstrate and voice our opinions about the way the government is handling the CCSVI situation," said Katz. "It's not moving fast enough."

Tears of hope

Katz's fellow campaigner Rebecca Cooney has secondary progressiveMS, which means she never has periods where she can function normally.

Over almost 18 years, Cooney 's condition has worsened and she islosing the use of her legs. Cooney walks with a cane and worries that within a year she will be in a wheelchair. She has already moved to a house with fewer stairs.

"I was with my family and my daughters," Cooney recalled of first hearing news about the surgery. "I started to cry because I felt it was finally something tangible that can be done, that can be fixed."

Even if the angioplasty or stent surgery doesn't reverse anything, Cooney is optimistic the decline could be stopped. So far, she has spent $4,000 for tests in the U.S. that showed two severely narrowed internal jugular veins.

Cooney's objective is to help promote research and testing of CCSVI. She laments the lack of standard protocols and training todiagnose the condition.

Doctor urges patience

To that end, Cooney and other members of the MS Liberation Group are trying to raise money, awareness and build partnerships to facilitate training of technicians performing the diagnostic tests in Canada.

"People with MS have such a difficult time anyway," Cooney said. "To have them go through all of that and then give them results that aren't accurate I think is immoral."

There are indications that the treatment might only work for certain kinds of MS or for only a while, and there can be complications, said Dr. Jock Murray, an expert on multiple sclerosis who helped found the Dalhousie MS Research Unit in Halifax. Murray urges Canadians with MS to have patience.

"I don't want to discourage or remove hope, but I think it's important that people understand what do we currently know," said Murray. "It's not a lot. And I think one of the difficulties is it does take time to get the answers."

Brisk business overseas

Cooney and Katz say many MS patients don't have the time for science to weigh in on the unproven treatment that is not available in Canada.

"Anybody that has had MS is perfectly happy to be led down the garden path just for the chance that maybe having a shot at this," said Katz. "And that's the fact."

Experts with the International Union of Phlebology, which investigates and manages vein disorders, agreed CCSVI is a condition that should be looked at and taken care of, Katz said. He thinks the hesitation of Canadian vascular surgeons may reflect "the Canadian culture that needs to be so cautious that we need to validate everything we do."

Pierre Bouvrette of Montreal said he can't wait for treatment in Canada. Bouvrettewent to a private clinic in Katowice, Poland, and paid $10,000 for surgery to open up his neck veins. The fee also buys five days at a hotel and breakfast.

"It is not totally proven, there are some chances to take, but I am willing to take them," said Bouvrette. "If I don't do it, I'm going down the hill [to] wheelchair and eventually bedridden."

The Polish clinic is doing brisk business, performing five operations a day. It is booked well into next year.