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Friday, March 4, 2011 6:31 PM | Ken Torbert Volg link

The province has struck a panel of experts to look at multiple sclerosis patients who've undergone a controversial procedure overseas, and to see how best to care and provide treatment for them.


But for at least one local MS advocate who has undergone that treatment, the move is all "smoke and mirrors."


Tuesday, the Ministry of Health announced a seven-person committee composed of physicians, MS experts and neurologists, who will study MS patients who have received chronic cerebrospinal venous insufficiency (CCSVI), treatment also called the liberation procedure.


A disabling disease of the central nervous system, MS attacks the protective covering around nerves, affecting how the brain and central nervous system communicate with each other.


The procedure was developed by Italian surgeon Paolo Zamboni, whose research suggests MS is a disease in which veins from the brain are constricted. By inserting a balloon or stents inside those veins, the constriction is relieved and most patients, according to his research, experience an improvement.


But the treatment is not approved in Canada, although provincial and federal governments, as well as the MS Society of Canada, have agreed to study the procedure and its side effects.


Those seeking treatment must travel abroad to places such as Mexico, Hungary or India.


The panel plans to study what happens when they return, particularly after a Niagara region man died back in November due to complications following CCSVI treatment in Costa Rica.


"What they're going to do is provide guidance and advice to the ministry for the development of recommendations and best practice guidelines and followup care for Ontarians with MS who have gone (with) the CCSVI treatment," said Andrew Morrison, spokesman for the Ministry of Health.


He noted members sitting on the panel all have a connection to MS research and are drawn from across the province.


What the group won't be doing is assessing the merits of the CCSVI treatment itself, Morrison noted.


Vickie Butler, a New Sarumarea woman who received CCSVI treatment in July, questioned whether the efforts of that panel will pan out.


After she returned from Mexico, Butler scheduled a Doppler ultrasound test in Barrie as part of a followup treatment plan.


She cancelled that appointment, both in protest of the $250 cost for the test and because if her veins had become blocked again, nothing could be done because CCSVI treatments can't be done in Ontario.


"If they tell me I'm blocked, then what?" she said. "It's smoke and mirrors, that's all it is."


But Butler is hoping that the more people talk about CCSVI, the better chances are it'll become a treatment option here. She says she continues to find relief from her symptoms following her treatment.


"It's already done for so many different things -- for blocked veins, varicose veins, people with diabetes. It's not a dangerous or painful procedure, it's not time-consuming and it shouldn't be expensive," she said.


She also objects to paying the $250 for the Doppler ultrasound test.


"I couldn't see putting out $250 to have it done when MS people are the only ones who have to pay to have it done. It's very discriminatory as far as I'm concerned."


Meanwhile, Butler plans to continue her CCSVI treatment education efforts with an education session at Lord Elgin Branch 41 Royal Canadian Legion on March 26 from 11 a.m. to 3 p.m.


She said local people who have been abroad for CCSVI treatments will be on hand to tell their story and answer questions.


"Hopefully we'll have a good turnout," she said.



http://www.stthomastimesjournal.com/ArticleDisplay.aspx?e=3004336