EDMONTON — Even though clots have developed around the stent in Gordon Layh’s left jugular vein, and they could dislodge at any moment to travel to his heart and cause a stroke, Layh believes the Alberta government still ought to offer the controversial and so-called liberation treatment to patients with multiple sclerosis.

Layh, from Bonnyville, will be attending a rally at Edmonton’s legislature building Tuesday at noon to convince the government to rethink its stance to not offer the treatment, in which veins in the necks of MS patients are opened with a procedure similar to angioplasty.

Governments and organizations like Alberta Health Services say the procedure is too risky and experimental, but Layh said living with MS is already risky.

“You never know. You could wake up blind the next morning or you just can’t get out of bed,” Layh said. He 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 approximately 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 — preliminary studies by Italian Dr. Paolo Zamboni found about 47 per cent of patients had veins that re-narrowed after the procedure — doctors inserted a metal mesh stent to keep it open. Layh and his wife agreed to that, even though they knew of the California case in which a woman required open-heart surgery after her stent dislodged and travelled to her heart.

Upon returning home, Layh’s MS 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 clot had formed closer to the brain, blocking 80 per cent of the jugular.

“The longer it stays there, the harder it will get and the harder it 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,” Layh, 54, said. “It leaves us in the position of wait and see. That puts us in a very uncomfortable position.”