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Monday, November 22, 2010 8:27 PM | Ken Torbert Volg link

Lisa Maheu-Gauthier dreams of strolling along the streets of Paris with her
teenage daughter and gazing at the Eiffel Tower from a sidewalk cafe.


It's a trip of a lifetime she hopes to make if a California doctor succeeds
in helping her walk again with a controversial treatment offered to

multiple sclerosis patients all around the world, but not in Canada.


In mid-January, the 45-year-old Windsor woman will travel across the
border to undergo "liberation" therapy, which involves opening up

blocked veins using angioplasty.


The treatment is based on a theory dividing the global medical community and MS patients worldwide:
that MS is not an autoimmune condition but a vascular disease which

can be treated with surgery.


The recent death of an Ontario man who travelled to Costa Rica for the liberation procedure and
subsequently developed a fatal blood clot has not deterred

Maheu-Gauthier, whose condition has been steadily deteriorating over

the years.


She now uses a motorized chair to get around and relies on friends for help with day-to-day tasks. "I just believe from
the bottom of my heart that they've found the Holy Grail in this," she

said.


Last November, Italian doctor Paolo Zamboni suggested that improper drainage of blood from the brain, a condition he termed
chronic cerebrospinal venous insufficiency, or CCSVI, may be causing

MS, and could be corrected with the simple vein opening procedure.


His research, involving only 65 patients, made a big splash in Canada, but
many doctors were skeptical from the start, warning MS sufferers not

to get too excited and to continue their prescribed course of

treatment.


Heeding the advice of an expert panel on the issue, the federal government has decided not to fund clinical trials of
liberation therapy until more research is done to determine its safety

and effectiveness.


But to Maheu-Gauthier, Zamboni's theory makes perfect sense. There is a history of vascular disease in her family
and she believes she was born with an underlying condition that

eventually led to the development of MS.


The Windsor-Essex region has a comparatively high rate of multiple sclerosis. The local
MS chapter had about 400 members last year, but some doctors have

estimated about 1,000 cases in the area. Canada has one of the highest

rates of MS in the world, though experts have not been able to

determine why.


MS patients across the country have been petitioning Health Canada to approve the CCSVI procedure, voicing their
anger on social networking websites and organizing rallies.

Frustrated, many have gone abroad -- to countries such as India, Costa

Rica and Germany -- for the procedure with varying results.


The Multiple Sclerosis Society of Canada is funding several preliminary
research studies that will help decide whether clinical trials are

warranted. But that will take time, and Maheu-Gauthier's clock is

ticking.


"I don't have five years to wait for Canada to decide on this," she said in an interview. "My daughter doesn't have five years.
I want to be able to take her to Paris and see all the things we've

talked about, all the things we love. I've made her promise she will go

without me if I can't."



Maheu-Gauthier was in her 20s when she was diagnosed with MS, a degenerative disease
that affects the ability of nerve cells in the brain and spinal cord to

communicate with each other. Symptoms vary among patients and include

loss of balance, muscle weakness, paralysis, vision problems, impaired

speech, extreme fatigue and pain.


The past year has been especially difficult for Maheu-Gauthier. She was hospitalized for
months after a fall, eventually losing her ability to walk. Her husband

died in May and she became a single mom.


Her 14-year-old daughter Stefanie is the main reason she's going ahead with the
liberation procedure, despite all the negative attention it's received,

the warnings from health officials and the risks involved. "She's my

everything. I'm doing this because of her."


Maheu-Gauthier has extensively researched her options, settling on Pacific
Interventionalists Inc., a group of doctors in California specializing

in interventional medicine and vascular surgery. The treatment is not

cheap there -- the average cost is about US$10,000 -- and

Maheu-Gauthier could never afford it herself. But her sister and

brother-in-law have stepped in to help and will finance her trip.


At Pacific Interventionalists, the doctors are all board-certified and
highly experienced in angioplasty and other vein procedures, said Dr.

John Joseph Hewett, a partner at the clinic who will not be treating

Maheu-Gauthier himself.


He said the clinic treats an average of seven patients a day with the CCSVI procedure. Of those, about three or
four are Canadian.


"There is a lot of interest from Canada," he said, noting that outcomes vary, depending on the severity of each
patient's symptoms.


"I must stress -- this is not a cure," said Hewett. "There is no guarantee that it will work. Improvements are very
individual and all over the map. But in general, about two-thirds of

people have a positive benefit. And it's a very safe procedure. The

biggest risk is that it just won't work."


Although Maheu-Gauthier is "very excited" to try liberation therapy, she will
draw the line at having mesh stents inserted into her veins to prop

them open.


It's been reported that Mahir Mostic, the St. Catharines man who died after getting the CCSVI procedure in Costa
Rica, developed a blood clot around a stent placed in his neck. Other

MS patients whose procedures involved stenting have also complained of

blood clotting and other adverse reactions.


Zamboni's proposed method involves inserting balloons to widen patients' veins and then
removing them. He has advised against using mesh stents.


Maheu-Gauthier is heading to the U.S. with realistic expectations. She knows she
won't leave the clinic doing somersaults, but hopes her quality of life

will improve and she'll eventually be able to walk again.


Maheu-Gauthier's biggest concern is getting followup care at home. She hopes doctors in
Windsor won't refuse to see her because she's sought treatment outside

the country.


"Followup is very important to all of us who are doing this," she said.


Jackie Putterman of the MS Society's Windsor-Essex chapter said the
organization is aware of about eight to 10 local MS patients who are

either planning to undergo the CCSVI procedure somewhere in the world

or have already done so. But there could be many more people resorting

to medical tourism and spending thousands of dollars in hopes of

getting better.


Putterman said the society realizes "people so want this to be the answer," but it's not recommending to anyone where
to go for treatment.


"They are doing this solely on their own as it is not an approved treatment in Canada at this time," she said.




http://www.windsorstar.com/health/grabs+Holy+Grail/3865035/story.html





Read more: http://www.windsorstar.com/health/grabs+Holy+Grail/3865035/story.html#ixzz162bvWnrB