EDMONTON — Though clots that have developed around the stent in his left jugular vein could dislodge at any moment and travel to his heart or brain, Gordon Layh thinks the Alberta government should offer the controversial “liberation treatment” he got to patients with multiple sclerosis.

Layh, from Bonnyville, attended a rally with about 50 other people the legislature Tuesday to convince the government to rethink its stance to not offer the treatment, in which veins in the neck are opened with a procedure similar to angioplasty. According to the hotly debated hypothesis, that prevents iron and blood from building up in the brain.

Governments and organizations such as Alberta Health Services say the procedure is too risky and experimental. Doing angioplasty in veins is more dangerous than arteries, according to Alberta’s health superboard position, since the walls of veins are more delicate and prone to damage. Doctors could face huge liability issues if they perform a procedure that is backed by few scientific studies, and something bad happens to the patient. But Layh and others who arrived at the government’s doorstep with walkers, in wheelchairs or leaning against friends, said living with MS is already risky.

“You could wake up blind the next morning or you just can’t get out of bed,” said Layh, who was diagnosed four years ago at age 50 and has numbness in his hands and feet, fatigue and balance problems.

He went to Poland in June for the liberation treatment, where doctors determined he had three places in his left jugular vein that had narrowed 50 to 80 per cent. When one portion of the vein continued to collapse even after being opened with a catheter-guided balloon, doctors inserted a metal mesh stent to keep it open.

Preliminary studies by Italian Dr. Paolo Zamboni found that 47 per cent of patients had veins that narrowed again after the procedure.

Layh and his wife agreed to the stent, even though they knew of a California case in which a woman required open-heart surgery after her stent dislodged and travelled to her heart. Zamboni himself does not advocate using stents.

After treatment, Layh’s symptoms improved greatly for about two months, then began to revert. Several ultrasounds determined one clot had formed inside the stent, blocking half of the vein, and another had formed closer to the brain, blocking 80 per cent of the jugular.

“The longer it stays there, the harder (the clots) will get and the harder (the clots) will be to dissolve,” Layh said. But although his family doctor and a neurologist in Edmonton have put him on blood thinners, Canadian doctors are not allowed to go into a blocked vein as they would a blocked artery to replace the stent or insert an agent to dissolve the clots.

“It’s not within the health system parameters, so they just won’t do it,” said Layh. “It leaves us in the position of wait and see. That puts us in a very uncomfortable position.”

Each day, Layh and his wife worry the clots will dislodge, first travel to his heart and then potentially to his brain, causing a stroke if the blood vessel is completely blocked. Yet each day, Layh returns to work in his retail store. His fatigue and balance problems have returned.