Tour brings new hope for MS patients

Nigel Armstrong
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Claire Bungay, left, welcomes Tim Donovan of Beyond MS Association of Canada to a rally in Stratford. Donovan is on a cross-Canada tour called New Hope for Multiple Sclerosis, promoting the government support for the new but controversial surgical procedure to relieve narrow veins.

STRATFORD - Tim Donovan is all smiles as he takes a hop off the floor, all because of a controversial medical procedure being offered to multiple sclerosis patients.

“I couldn’t do that before (getting the treatment,)” he said of his skip during a stop in Stratford on Wednesday.

Donovan has been struggling with MS for 25 years but last summer he travelled to Albany, N.Y. to have what has become known as “liberation therapy.”

It involves widening the veins of the neck and chest using miniature balloons, a procedure known as venous angioplasty.

The procedure pioneered by Italian Doctor Paolo Zamboni is available to MS patients in 46 countries around the world, but not Canada.

Donovan, who is from Frederiction Junction in New Brunswick, is on a cross-Canada tour to try and change that situation. He started May 9 in Newfoundland, driving a vehicle colourfully marked with the tour logo, “New Hope for Multiple Sclerosis.”

“Our mission is to get the treatments available in Canada now,” he said during his stop in Stratford. “The reason for the tour is to educate and bring awareness to Canadians on exactly what’s happening.

“I am all for research and data collection and that type of thing,” said Donovan. “We need a study but we don’t need to wait because this treatment has worked for 12 to 15,000 people already.”

Donovan hopes to speak to political leaders, but has yet to get an interview with the P.E.I. government.

He just completed the Nova Scotia part of his tour before coming to P.E.I. and says the N.S. government has invited him back to speak to the legislature.

Some provinces have promised or even included funding in their budgets for the treatment but no dollars have yet come to MS patients, said Donovan.

Neither is there support from the MS Society, says Donovan.

“We disagree, agreeably,” he said. “There is a brick wall up in front of us. We don’t know who put it there. It doesn’t matter. We are just going to try and go around it and try and get the laws changed to fit the needs.”

Donovan says economics favours government helping to pay for the treatment.

“It costs more to keep me in the hospital and give me the medications that I have been on for the last seven years than it ever costs to have this procedure done.

“We can save the governments money and they are listening.

“In New Brunswick, I spoke to Premier David Aylward. I said ‘you paid $240,000 to keep me in the hospital last year.’ I said ‘I’m not in this year.’ I have been in hospital for the last five years, every year. He listened to that.”

The cost of the procedure is about $1,500 if it were done in Canada, said Donovan.

“My medications alone were $1,700 per month, so it makes more sense economically to do this,” he said.

Donovan agrees that the procedure does not work 100 percent of the time.

“Nothing does, but they need to be following us. There are no trials going on it Canada.

“Someone asked me, ‘what are the side affects of this treatment?’ You know what they are? I have less fatigue, I can think much clearer. I can walk now. I was in a wheelchair half of the year, every year for the last five years. We have never had any hope for M.S. until now. That is why we call it new hope.”

Organizations: M.S., Cross-Canada

Geographic location: Canada, Stratford, New Brunswick Albany, N.Y. P.E.I. Newfoundland Nova Scotia

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Recent comments

  • Ted from NB
    June 04, 2011 - 19:54

    By the way, Dylan, do you know how many other therapies or drugs have been proven to help people with primary progressive or secondary progressive MS? I'll give you a hint: it rhymes with "hero".

    • L. Stewart
      February 23, 2013 - 13:34

      I did Liberation proceedure in May 2010. This is NOT a fraud. It is interesting that these sort of comments are put on with no names. Just think of who would benefit from scaring people off doing this. Liberation is meant to halt MS which it does. If you get some things back, they are gifts. I have some gifts. I have fare lesst pain and stomach cramping, feeling in my feet again and my VOICE back. I can talk again. Also it allows me to work on balance as I have had no more attacks. I begain standing unaided for 30 seconds or less and some days can stand moving for 20 mins (like squats or twisting). So, Liberation is right, no fraud. They are beginning to add stem cell injections now, so that WILL be also a step up, in a couple years.

  • Ted from NB
    June 04, 2011 - 19:29

    I had the procedure done over 13 months ago. I've had improvements in my fatigue, balance, strength, mobility and bladder issues. My quality of life has improved hugely. Though any procedure, even a mildly invasive one such as this one, carry some risks, let's be realistic: the risks are insignificant compared to the certainty of my deterioration before I had the procedure done. The main side effects of "liberation" are that your blood flows properly from your brain - that can only be a good thing, especially over the long term. Incorrect analysis of Zamboni's results aside, improvements in quality of life come to 66 to 80% of the people who have had the procedure done (see, for example). It's ridiculous that governmen's aren't even doing clinical trials!

  • sunshine
    June 04, 2011 - 17:43

    I had it done and it worked to releave some of my problems like the spasms, tension headaches and numbness of my hands. I unfortunately was wheelchair bound for 3yrs prior to the surgery and I am still wheelchair bound. The relaf that i felt before has all come back with a vengence even though I continue with physio to try and strengthen my legs and core muscles

  • Dylan Blacquiere
    June 04, 2011 - 06:33

    You need to offer the other side of this. Dr. Jock Murray in Halifax has an excellent presentation recently on how this procedure has been presented by the media, and one of the many fascinating things he points out is that in Zamboni''s original paper, the success rate for this procedure was less than the success for the placebo groups in the latest trials for fingolamod, a new oral medication for multiple sclerosis. In our MS clinic the people we see get the procedure done have no change in their disability scores, and sometimes even have the veins reclot, and the clinics that gave them so much hope in the past wash their hands of them. There is no long-term follow up, we don't know if the self-reported benefits of this procedure last, and we no from past fad therapies of MS that the course of people feeling better for a while followed by a return to original symptoms seems to be holding true. Recent research has suggested that the "vein blockage" is present in people with normal controls and does not correlate to MS. Meanwhile, other therapies that have a proven benefit for people with MS remain expensive and unavailable for many, and people end up exposing themselves to harm with this. Remember the man from Ontario who died after the procedure; his vein restenosed and a controversial decision by the clinic who placed the stent ended up placing in on anticoagulation, and he had a fatal hemorrhage. The money that people like Mr. Donovan want spent on this would be better spent helping to provide equal access to existing therapies and supports for people with multiple sclerosis while the research process for this unproven procedure takes place. It is happening. We're doing it at my own institution and at centres around the world. People are being taken advantage of by this, and stories like this fawningly uncritical piece by the Guardian do them no favours. Nigel Armstrong needs to speak with people who are working in the field about the realities of this therapy, in order to provide his readers with a balanced and accurate account.

    • Eve
      June 04, 2011 - 15:41

      We do not know if the procedure works long term. Canada needs to do followup studies. It is such a shame. Canada should be all over this. Everyone with MS in this country see's a MS neurologist once a year, is tested and has a MRI. We have the data. All we have to do is test the people after they have had the procedure and publish the data. I notice the comment before mine is from a person woking at a MS clinic. Why are you not testing the people who have had the procedure and publishing the data? If it shows the procedure does not work, fine. At least we would know that. Maybe it shows the procedure does work. I do not know but the MS clinics should know and should let the rest of us know.

    • Christopher A from Nova Scotia
      June 04, 2011 - 18:34

      As per the previous comment by Dylan Blacquiere - Dr. Jock Murray has always studied MS as an autoimmune disease. I would like to share some quotes by Dr. Peter Behan, Emeritus professor of Neurology in Glasgow : "Multiple sclerosis is stated in most textbooks and journals as being an autoimmune disease, meaning that the immune system of the body is directed against putative brain components. But this hypothesis is incorrect, based on a misinterpretation of histological studies and comparison of the disease to an animal model. The autoimmune hypothesis has allowed investigators and drug firms to use and test powerful immunomodulating and immunosuppressive agents as therapy. Sadly, such trials persist despite recognised morbidity and mortality among patients. A review of papers published over the course of 60 years in one of the world’s leading journals in medicine shows that many research articles claim to show that it has an immunological basis. But, alas, not one of these claims has been confirmed, despite glowing editorials at the time of publication." Though CCSVI may open the door to many more questions, it`s a far cry from the unproven auto-immune theory believed by most. I think you should read up some more on the effectiveness of MS medication because in the words of Dr. Behan once again in an article published in the expert review of neurotherapeutics, it states: "“Studies of these agents showed that the inability to go beyond the 33% line raised the possibility that the entire observed benefit is only a placebo effect.” So I question your true knowledge of the existing immonomodulatory therapies if you are stating the points that you so confidently put forth.

  • libation fraud
    June 04, 2011 - 05:43

    MS is a terrible disease. But liberation therapy doe not work. It is just another in a long line of ways to prey on the pain of others. It's giving people false hope. If people want to try it, fine, but there are better uses for the money than this nonsense.

      June 04, 2011 - 15:30

      I have had MS for 20 years now. I`ve been secondary progressive for several years with no relief. I was found to have faulty valves inside my jugular vein IN CANADA and had the procedure over a year ago. I`ve found relief from many symptoms of MS. If this therapy is a "hoax" or another way to prey on the pain of others, then why are doctors having it ? Drs with MS such as Gianfranco Campalani (Heart Surgeon in the U.K. with MS), and Dr. Bill Code, Canadian Dr. from western Canada. They`ve both had the procedure and talk about it`s benefits. Why would a doctor who knows the risks of venous angioplasty give in to "fraud" as stated by "LIBATION FRAUD" ? You gotta wonder !

    • Leslie
      June 04, 2011 - 19:19

      @ liberation fraud. You must not have MS or paid for the costly drugs that don't work. This does work. Have you had it done? Know anyone that had it done? I didn't think so. Don't judge until you know all the facts.