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Sunday, December 26, 2010 10:26 PM | Ken Torbert Volg link

Last Updated: Friday, December 24, 2010 | 8:05 PM ET
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Mahir Mostic holds a fundraising poster for his surgery. Mahir Mostic holds a fundraising poster for his surgery. (Courtesy of Bedrana Jelin)In Canada's multiple sclerosis community, the year 2010 began with
enthusiasm for a new treatment that snowballed with anecdotes from

patients sharing their experiences on blogs and social networks.


Italian Dr. Paolo Zamboni first proposed the simple plumbing concept of blocked veins from the brain that could be cleared to relieve MS
symptoms. The idea captured people's imaginations and took off before

researchers and politicians could catch up.


The cold, hard look of science eventually dampened expectations somewhat. Speaking in Toronto in April, Zamboni himself reflected on the
sobering and ambiguous results of a study that showed half of MS

patients had blocked veins, as did a quarter of healthy people.


"I recommend people under treatment to wait for new evidence," Zamboni cautioned.At an international neurology conference in Toronto in April 2010, Dr. Paolo Zamboni advised MS patients under treatment to wait for new evidence.At an international neurology conference in Toronto in April 2010, Dr.
Paolo Zamboni advised MS patients under treatment to wait for new

evidence.
(Nathan Denette/Canadian Press)


MS patients facing worsening symptoms — including blurred vision, losing the ability to stand or walk, and short-term and long-term memory
problems — felt they couldn't wait for the slow pace of large-scale,

randomized, controlled trials — especially if vein opening actually

changed the long-term course of a disease that naturally waxes and

wanes.


The year ended with news of the death of Mahir Mostic, a Canadian man who had sought treatment abroad and suffered fatal complications.


Here is a timeline of events on Zamboni's treatment:


Feb. 8, 2010: MS patients were anxious to participate in a Buffalo study looking for narrowed veins. Asked about skepticism over his unorthodox treatment approach from the medical community, Zamboni tells reporters: "My suggestion is to investigate patients as soon as we can, not to simply criticize. Look and confirm the data."


Feb. 10, 2010: About 55 per cent of patients with multiple sclerosis and up to a quarter of healthy people studied
show narrowing of their neck veins that may be a risk factor in the

neurological disorder, a preliminary study shows.


April 7, 2010: A "desperate bunch" attend a forum hosted by the Multiple Sclerosis Society of Canada,
wanting to know what kind of testing and experimental treatment

approaches work best to open neck veins. One U.S. clinic that started

doing Zamboni's procedure stopped after a stent put into a patient's

vein went into his heart. Another patient died of a cerebral hemorrhage

after a similar surgery.


April 13, 2010: As hundreds of Canadians who with multiple sclerosis demand access to a new procedure that MS specialists warn is at best experimental and at worst dangerous, CBC News follows a Calgary blogger into the operating suite in Poland as she has the procedure. Ginger MacQueen says her experience is all the proof she needs. MS blogger Ginger MacQueen's personal experience with the treatment was compelling for patients.MS blogger Ginger MacQueen's personal experience with the treatment was compelling for patients. (CBC)


April 14, 2010: Zamboni publicly distances himself from initial media claims of a cure, advising "people under
treatment to wait for new evidence" rather than follow "blogger

patients." Some neurologists, vascular surgeons and MS patients agree

that following proper procedure is essential in determining if the MS

treatment is safe and effective.


May 5, 2010: CBC News reports a handful of Canadians with MS had angioplasty to open their neck veins under the radar in this country, paid for by provincial health plans, before surgeons voluntarily stop performing it here.


June 11, 2010: Multiple Sclerosis Society of Canada announces $700,000 in funding to support seven new research projects investigating the relationship between multiple sclerosis and impaired blood drainage from the brain and spinal cord, known as chronic cerebrospinal venous insufficiency or CCSVI.


June 15, 2010: The vein-opening procedure should be offered in a randomized clinical trial under the supervision of an ethical
committee, Zamboni tells the House of Commons health committee by

videoconference. He maintains the procedure has resulted in better

cognitive and motor function, and fewer symptoms of chronic fatigue,

among people with MS who were treated with balloons. A Toronto vascular

surgeon says a blinded trial of the treatment should be done in Canada.


July 28, 2010: Saskatchewan Premier Brad Wall says his province is willing to fund trials of the promising but unproven treatment.


August 23, 2010: Newfoundland and Labrador's health minister says his province is willing to fund trials to test
Zamboni's therapy following a meeting of provincial health ministers.


Sept. 13, 2010: Five months after the procedure, MacQueen said she has had no numbness, tingling or spasticity in her
muscles. Her heat intolerance and bladder spasms are also gone.

Scientists acknowledge her personal experience is compelling but caution there are no objective measurements showing real, long-lasting improvements. Calgarians with MS staged a rally in April asking Alberta to approve a new procedure to treat the illness. Calgarians with MS staged a rally in April asking Alberta to approve a new procedure to treat the illness. (CBC)


Oct. 26, 2010: Some Canadians who've travelled out of the country to treat their narrowed or blocked neck veins tell CBC
News they'll submit a claim for medical costs on their income tax returns — another idea discussed on blogs and Facebook.


Nov. 18, 2010: CBC News reports the death of 35-year-old Mahir Mostic of St. Catharines. Mostic died on Oct. 19,
one day after doctors in Costa Rica tried to dissolve a blood-clot

complication that formed around a metal stent used to prop open his a

vein in his neck. Like some other patients, Mostic spent thousands of

dollars for a second trip to a foreign clinic to have his veins

reopened. Vascular surgeon Dr. Marcial Fallas of Clinica Biblica in San

Jose announces he won't try a stent again unless it is proven to work specifically in neck veins.


Dec. 29, 2010: Mostic's girlfriend, Bedrana Jelin, grants permission to broadcast a home video of his attempts to walk in
the hopes it will spur officials to help other Canadians caught in the

same situation.





Read more: http://www.cbc.ca/health/story/2010/12/24/f-multiple-sclerosis-zamboni-ccsvi-timeline.html#ixzz19FtgHXiy