MS patients lack followup after vein therapy

Some Canadians with multiple sclerosis who've received an experimental vein treatment in other countries say they're now suffering complications from the surgery but having trouble getting doctors in Canada to help.

Gordon Layh of Bonnyville, Alta., went to Poland to have the controversial procedure done in June. After receiving angioplasty, or ballooning, to open one vein and getting a stent in another vein, he and his wife said he showed much more movement.

Layh stopped having to search for words, was less fatigued and had normal blood pressure.

Suddenly, after nine weeks, Layh began to deteriorate. His neurologist said he had two blood clots near the stent, and he was prescribed more blood thinners. The couple fears what could happen if the clot moves.

"If it lets go, we were informed that he could have the clot move into his brain, which would cause a stroke," said his wife, Sindy Layh.

"I know they can fix it. He shouldn't have to wait to get into a dire situation where he is on death's door to be treated."

The couple is now exploring whether to seek treatment in the U.S. to dissolve the clot at a cost of $20,000.

Ethics of experimental procedure

Unless an emergency arises, Canadian doctors' hands are tied, said Dr. Lindsay Machan, an interventional radiologist at Vancouver Hospital.

The vein-opening procedure is not a recognized MS treatment in Canada. There are no standards on how it is to be administered, and it is not covered by provincial health insurance plans.

"It's a real struggle," said Machan, who has turned to the BC College of Physicians and Surgeons for advice. "We're right now seeking clarification."

"It is this College's expectation that physicians recognize their ethical obligation to treat patients regardless of the source of complications or illness using appropriate and tested standards of care," Susan Prins, director of communications for the College of Physicians and Surgeons of BC, said in an email.

"Physicians are not, however, obliged to repeat or redo experimental procedures which were performed outside of ethically approved research protocols."

The Layhs plan to join an MS rally at Alberta's legislature on Tuesday to fight for access to the treatment and followup in Canada.

The vein-opening therapy is based on an unproven theory that blocked veins in the neck or spine are to blame for MS. The theory, known as chronic cerebrospinal venous insufficiency (CCSVI), was put forward by Italian doctor Paolo Zamboni, who proposed treating multiple sclerosis by resolving the venous insufficiency by inflating small balloons to open up veins.