Multiple sclerosis forum seeks answers

People living with multiple sclerosis had many questions Wednesday about what Canada is doing to test the safety and effectiveness of an unproven surgical treatment and when it might be available in this country.

But the message they got from experts at a Toronto forum was: Be patient and wait for more research.

The approach to MS that has excited so many patients was developed by Dr. Paolo Zamboni, an Italian vascular surgeon, who believes multiple sclerosis is a vascular condition, marked by blockages of veins in the neck. He claims many symptoms can be reversed with a simple but experimental surgical treatment to unblock the veins.

When Zamboni's treatment made international news last year, patients with MS scrambled to get it. At least 20 Canadians have spent thousands of dollars to travel to Europe to be tested for blocked veins.

But it is unclear whether opening up the two neck veins helps, or if so, for how long and what risks are involved, says the Multiple Sclerosis Society of Canada.

The organization hosted the forum to help meet what it called "unprecedented" interest in vein blockage, known as chronic cerebrospinal venous insufficiency, or CCSVI. About 430 groups registered to watch to live web stream and 800 groups registered to watch an online video of the event, the society said.

Patients want and need to know the latest knowledge of CCSVI, Dr. Jock Murray of Dalhousie University in Halifax said in an interview.  

He also said he knew that one U.S. clinic that started doing Zamboni's procedure stopped after a stent put into a patient's vein went into his heart. Another patient died of a cerebral hemorrhage after the procedure, Murray said.

Both Murray and the MS Society asked people to wait until more is known about what kind of testing and experimental treatment approaches work best — questions that can only be answered through clinical trials.

"We are a desperate bunch," said Barbara Dickson of Toronto. Like several others in the audience, Dickson expressed frustration about the slow process of getting tested through formal clinical trials in Canada.

It could be years before such a clinical trial happens in Canada. In the meantime, the MS Society continues to hand out hundreds of thousands of dollars in research grants to try to answer questions about the experimental treatment.