Liberation therapy has been hailed as a multiple sclerosis miracle cure.

But the recent death of Ontario resident Mahir Mostic, who died from complications after undergoing the
procedure in Costa Rica, has revealed a sobering truth: that liberation

therapy’s hype has gone far beyond what its creator, Dr. Paolo Zamboni,

originally claimed.

“Please,” Zamboni said at a web forum in April. “Refer just to what was published — not the blogs of patients.”

What the Italian vascular disease researcher published in 2009 was a small, uncontrolled study that
indicated one specific vein-widening procedure can alleviate symptoms

for one specific type of MS sufferer. “This is really a work in

progress,” Zamboni said in April.

Yet some doctors, who charge up to $20,000 to perform liberation therapy for patients from countries where
it is not offered, such as Canada, are willing to move beyond the

medical evidence — often at the insistence of MS patients, for whom the

disease has extracted such a steep toll that any risk is worth it.

With liberation therapy testimonials multiplying on the Internet, some of the facts have been ignored.

“Patients are making all sorts of ridiculous claims,” says Dr. Mark Freedman, director of the Multiple
Sclerosis Research Unit at the Ottawa Hospital. But, he says, “the

things they used to do, like pour ointments on themselves and wear

bracelets, didn’t really hurt them.”

The repercussions for ignoring the real research on liberation therapy can be deadly.

The procedure Zamboni described involves surgically threading a balloon catheter through the body and
into two major veins, the azygous and the jugular vein. The balloon is

inflated to expand the veins’ walls. Zamboni’s unproven hypothesis is

that the brain legions that cause MS symptoms arise from blocked and

twisted veins.

The risk involved is high because veins are tricky territory. Thin-walled and not muscle-wrapped, as
arteries are, they often recoil to their original size after being

inflated. Patients who undergo the procedure are sometimes fitted with

stents, or wire-mesh tubes, to hold the vein open.

But stenting veins is dangerous, doctors say. It can cause blood clots, and there is at least one
documented case of the tube dislodging and travelling into a patient’s

heart. According to accounts his Costa Rican doctor gave to the media,

Mostic’s death was caused by a blood clot that formed in a stent.

Zamboni has frequently warned against stents.

Many patients eager for a cure also overlook that Zamboni’s 65-person study only pointed to benefits for
some MS sufferers. Subjects with the most common type of MS, called

relapsing-remitting, experienced relief from symptoms that persisted 18

months later.

But those with two faster-acting, more severe types of MS, primary progressive and secondary progressive,
showed no improvement after 18 months. Outcomes for the two progressive

types of MS are “certainly less significant and promising,” Zamboni

wrote.

Mostic had progressive MS, according to reports. Others with the same condition have risked surgery despite
the lack of evidence it would help: both Andrew Katz and Rebecca Cooney,

co-founders of the pro-therapy website MSliberation.ca, have

progressive MS and did the procedure.

“It’s worth it for me to try — “$10,000 is nothing compared to the grief it’s causing me,” Katz said.

Zamboni’s research, he has said, was only a beginning. Better evidence about the therapy will require
controlled double-blind trials, two of which are underway in the United

States.

Zamboni, for all his words of caution, understands MS patients’ tolerance for risk too well: his first
liberation therapy subject was his wife. He has called for doctors to

perform surgery on severe MS sufferers on “compassionate grounds.”

As Katz says, some hope is better than none, whatever the risks.

“You have to understand the nature of the disease. It’s not fun. It’s a real bad disease,” he said.

http://www.thespec.com/news/canada/article/278010--hype-around-ms-cure-proves-deadly