Five months ago, Hamilton General Hospital nurse Debra Beckon flew to India to undergo an unproven
procedure called “liberation treatment” she hoped would help alleviate

her symptoms of multiple sclerosis.

And just like Ontario resident Mahir Mostic, the first Canadian to die of complications from his “liberation”
operation, Beckon had a stent inserted into her jugular vein where a

large blood clot subsequently formed.

Unlike Mostic, though, Beckon says Canadian doctors are treating her here at home using a slower and less
powerful clot busting regime that she hopes will restore the

improvements she felt for a few brief weeks after “liberation.”

“I do believe the procedure has merit,” said the 53-year-old Grimsby resident Monday.

Beckon is among an increasing number of Hamilton-area residents who say liberation treatment should be
offered in Canada where pre and post-operative health care is of a

higher standard.

“They need to start doing the procedure here so that they can impose their own standards of practice,
including everything they’ve learned from cardiac stenting.”

The liberation treatment was created by Italian doctor Paolo Zamboni, who theorizes that many MS symptoms are
the result of narrowed or twisted veins in the neck that do not allow

blood to properly drain from the brain and spinal cord. He called it

chronic cerebrospinal venous insufficiency (CCSVI). Treating CCSVI

involves angioplasty, where balloons are threaded into the blockages and

then inflated to widen the veins. Zamboni, however, has not advocated

the use of stents — metal mesh cylinders — to keep the blocked veins

open.

Canada has not approved the treatment, so MS patients are looking to places like Costa Rica, India,
Poland, the U.S., Mexico, Scotland, Germany, Belgium, Italy and Serbia

to get it done.

The CCSVI theory held no mystery for Beckon. For years, the 53-year-old worked daily in Hamilton General’s
heart unit where angiograms, angioplasty and stents are par for the

course. She understood both the procedure and its risks.

Both Beckon’s jugulars had structural blockages. A balloon opened the right one and doctors at Jaipur Golden
Hospital in New Delhi decided a stent was needed to keep the left

jugular open.

Almost immediately afterward, Beckon said she felt dramatic improvement.

“A whole shroud of fatigue lifted, there was more sensation in my legs, I could wiggle my toes again,
balance better and walk unassisted” for short periods of time, she said.

But two weeks later, the old symptoms began to creep back. Within a month, she was back to the symptoms
before the angioplasty. Back in Canada, her doctor sent her for a

Doppler scan, which revealed a massive clot at the site of the stent.

Under the care of her family doctor, a neurologist and a thrombosis (blood clot) specialist, her medical team
has put her on a heparin anticoagulant treatment to slowly melt away the

clot. Beckon said the treatment will take at least six months.

According to news reports, Mostic, 35, of Niagara Falls, travelled to Costa Rica in June for the procedure.
He developed a blood clot in Canada and sought treatment in hospital in

St. Catharines, where he was not treated for blood clot complications.

Mostic returned to Costa Rica where doctors administered a powerful

clot-busting drug into the stent on Oct. 18, but Mostic died the next

day.

Late last week, Federal Health Minister Leona Aglukkaq said Canadians should not head abroad for the controversial treatment.

“Based on the information I have received from the experts, personally I would not recommend it — but
individuals make their own choices,” Aglukkaq said.

Two months undergoing balloon angioplasty at the same clinic in Costa Rica as Mostic, Hamilton’s Mary
Jacobs says her MS symptoms have dramatically improved.

“I’ve gone from a wheelchair all the time to walking occasionally with two canes,” said the 55-year-old west Mountain resident.

Jacobs said she would have refused a stent because she was aware of other stent-complication cases.

“I went in with a lot of information and confidence that it was going to help.”

And it did, she said.

pmorse@thespec.com

905-526-3434

http://www.thespec.com/news/local/article/278171--local-ms-patients-still-support-liberation