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.

Still, he doesn’t regret having the liberation procedure.

“These kinds of complications happen to people all the time who have heart
surgery,” Layh said. He feels it’s cowardly of the Canadian government

to leave it to other countries to perform the procedure. Others at

Tuesday’s rally held signs of support reading “Looking for compassion,”

“People are dying” and “Open your eyes and open our veins.”

“Letting everyone else take the risk, that’s kind of a cop-out,” Layh said.

Zamboni has called the stance of Alberta Health Services “extremely confusing”
and “simply naive.” He sent a letter to the health authority’s chairman,

Ken Hughes, in response to Alberta’s advice to MS patients to hold off

on getting the treatment.

Health Minister Gene Zwozdesky spoke at the rally and told the group he met with MS patients, neurologists and
advocates about three weeks ago.

“We’re just looking at what we can do to provide additional information,” Zwozdesky said. He said he
was impressed to hear the treatment had improved people’s symptoms.

“It is our job to take a look at what we can do to help build that gap in
(scientific) evidence,” he said, noting it’s possible Alberta could

mirror the work in Newfoundland-Labrador, where an observational study

is following patients after they go through the procedure. Alberta could

also consider following Saskatchewan’s path to launch a clinical trial.

Zwozdesky said the government will decide “soon” how to proceed on the controversial issue.

jsinnema@edmontonjournal.com

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Liberation treatment case studies

Misty Schuster

Misty Schuster, a 28-year-old paralegal from St. Albert, spent $13,000 to
travel to New York to have the Zamboni procedure to open her veins,

though no stents were used. She was diagnosed with multiple sclerosis in

2003 after she woke up blind one morning and paralyzed on her left

side. Now, she no longer has to use her cane.

“Hopefully, I can just throw it in the garbage, actually,” Schuster said. “It’s changed my life completely.”

At Tuesday’s rally, she wore high heels, something she couldn’t have done
before because of balance difficulties. Gone is her “MS hug,” the

painful abdominal feeling of wearing a tight girdle.

“I would do it again in a heart beat,” Schuster said. The risks seem minimal
compared to the MS drugs that caused her throat to swell and sent her to

emergency.

Tim Davidson

When Tim Davidson went to Mexico to have the liberation treatment, he was accompanied by
his mother, father and one of his two caregivers, since his MS was so

severe. Although the 48-year-old wasn’t diagnosed until 2002, mother

Grace Davidson remembers her son often stumbled while playing tennis in

his 20s, and would also fall off his bike.

Since the Mexico trip, Tim has been more alert, stronger and more energetic. He can shout and
speak clearly, whereas before he was barely understandable, said Grace,

who also has a 42-year-old son whose MS is less severe than Tim’s.

“I don’t want anybody getting as bad as my son,” Grace said at the rally.
Tim is still in a wheelchair, but can walk with a walker at times. A

followup trip to Barrie, Ont., confirmed Tim’s jugular veins have not

collapsed again. Mexican doctors determined both of his jugular veins

were completely blocked before the procedure and Tim’s body had grown a

system of vessels around the blockages to feed his brain and body with

blood.

The procedure itself cost $12,000, said Grace, who lives in Sherwood Park. Because Tim needed a caregiver and both parents to help,
the hotel and airfare bumped the cost to about $20,000. That doesn’t

include the trip to Ontario for the diagnostic test.