The ‘miracle cure’ - Macleans.ca
 

The ‘miracle cure’

A controversial new treatment for MS comes to Canada


 
Multiple Sclerosis, Vancouver, Cure

Photographs by Andrew Tolson

Last week, in a traditionally appointed Vancouver living room, Dr. Mark Godley made an announcement that could change the face of Canadian medicine. Addressing a multiple sclerosis support group that had formed on Facebook, the anesthesiologist and medical director of False Creek Healthcare Centre shared “very, very good news”: “A patient in B.C. had the procedure done here in B.C. today,” he said as the dozen people gathered erupted in claps, cheers and enthusiastic calls for details. The group here knows the lingo: “the procedure” is the radical and game-changing “liberation treatment” pioneered and named by Italian vascular surgeon Paolo Zamboni that has dominated MS chat rooms and academic research since it was first reported by media last November. The MS patient in B.C. showed results consistent with Zamboni’s, Godley reports: “He has warmth in his hands, the numbness has gone from his fingers, and for the first time [in years] he’s able to lie flat on his back.”

What’s stunning about Godley’s announcement is that, until now, the “liberation” treatment—a simple surgery that sends a tiny balloon to clear a clogged jugular vein—has been almost entirely unavailable in Canada, where it’s considered “experimental” by health officials. Provincial health care plans won’t fund it; doctors won’t perform it. Instead, Canadians have been flying to private clinics in Poland, Kuwait and India, paying upward of $10,000 for the surgery. In fact, the procedure that Godley describes was performed under the radar in an unnamed B.C. hospital, billed as a routine angioplasty. It was done “very quietly without the hospital knowing what he was really there for,” he says. Soon, though, such stealth will be unnecessary: in May, Godley said, his private clinic will be the first in Canada to openly offer the day surgery. “Wow!” cried out one member of the support group. “What’s the cost?” asked someone else, to which another replied, laughing, “Who cares?”

Such excitement has greeted Zamboni’s research among MS patients, who a year ago couldn’t have imagined a possible cure for the degenerative disease that affects 2.5 million people worldwide. Most are diagnosed at a young age—between age 15 and 40—more of them women than men, and most of Northern European descent. Canada has among the highest incidence of the disease—between 55,000 and 75,000 people, with 1,000 new cases every year. Not only is there no cure, researchers have not found a cause. All that’s known for certain is that the symptoms, which include numbness, loss of mobility, bladder malfunction and paralysis, are devastating.

Conventional thinking is that MS is an autoimmune condition that causes the body to attack and damage the protective covering, or myelin, around nerve cells in the brain and spinal cord, making them slow to emit impulses and move muscles. Zamboni’s findings, published in August 2009, point to the disease having its roots in the vascular system, a theory that dates back to the 19th century. When studying the ultrasounds and MRI results of MS patients, the medical professor at the University of Ferrara discovered that virtually all showed a blockage or a narrowing of veins leading from the brain, a condition he dubbed “chronic cerebrospinal venous insufficiency,” or CCSVI. Such blockages, he posited, could cause blood to flow back to the brain, resulting in toxic iron deposits that in turn could trigger MS symptoms. When he cleared the veins using a balloon angioplasty, Zamboni witnessed remarkable transformations: those in the early stage of the disease had a full recovery; those with severe disabilities showed marked improvement—more energy, renewed sensation and movement in hands and legs, and improved vision. Zamboni’s own wife, Elena Ravalli, who has MS and who inspired his research, has not had another attack since she had the procedure years ago.

As MS patients convened on the West Coast for Godley’s big news, the traditional medical gatekeepers of the disease were gathering in Toronto for the American Academy of Neurology’s annual meeting. Just how much MS has come to dominate the neurological agenda is reflected in the fact some 20 per cent of papers at the convention deal with the disease, a handful of which explore the possible CCSVI connection. Zamboni himself will make a star turn. The notion that MS could be caused by a vascular plumbing problem has turned MS research on its head, or, as a paper given at McMaster in February put it: “Is Multiple Sclerosis really Multiple Stenosis?”, the medical term for narrowed veins.

Many neurologists have yet to be convinced. At the far extreme, there’s professor Alastair Compston, head of the department of clinical neurosciences at the University of Cambridge and one of Britain’s pre-eminent MS researchers, who out-and-out dismisses Zamboni’s findings: “People with MS are unlikely to benefit from treatments that dilate blood vessels,” he said. Others suggest patients’ positive response is a “placebo effect.”

Dr. Amit Bar-Or, a neurologist at McGill University who co-authored a recent paper in the Annals of Neurology, takes a more measured approach. He says that Zamboni raises two important questions. Is CCSVI unique to MS patients, or do others have it too? And, if it is unique to MS, then is it a cause or a consequence of the disease? Bar-Or points out that as more research is conducted, there has been less and less conclusive evidence that CCSVI is found only in MS patients. Zamboni’s initial 2006 study showed CCSVI in 100 per cent of MS patients compared to zero in non-MS individuals; subsequent data by Zamboni and later researchers at the University of Buffalo, however, has not been so definitive: the first Buffalo study found 55 per cent of MS patients had CCSVI compared to 22 per cent of non-MS individuals. Then, findings released at the conference this week further showed “an increased prevalence of CCSVI in MS” but lower than Zamboni’s original study. “So what went from clearly distinguishing the illness from the non-illness [is] much more grey,” says Bar-Or

What’s more, if CCSVI isn’t the cause of MS, then liberation surgery may not be much help over the long term, says Bar-Or. “If you open up the vessels that are damaged as a consequence of the disease, you won’t necessarily solve the disease.” And given the “relapse-remission” cycle common in MS patients, it’s difficult to know yet—in the absence of rigorously controlled studies—whether individuals who report relief after liberation surgery are doing better “because of the procedure or in spite of the procedure.” Any neurologist will tell you that one constant in MS is that it’s ever-changing.

Another concern is the risk of using stents in veins (a departure from Zamboni’s balloon protocol), as many offshore clinics do to prevent them from collapsing. Inserting stents in veins, which tend to be floppy and flaccid, is more difficult and risky than inserting them in more rigid arteries. Even so, surgeons have performed angioplasties on veins since the late 1970s, mostly on legs. A CCSVI study at Stanford University was shut down in December after a stent migrated to one patient’s heart, requiring emergency surgery. Another patient died of a post-operative stroke.

The MS Society of Canada has shown reluctance to endorse CCSVI treatment. “This is a cause for real excitement,” president Yves Savoie says. Still, blind, placebo-controlled clinical trials are required. The history of MS research is peppered with purported cures—bee stings to snake venom. “We respect and honour the right of persons with MS to make the decision [about treatment],” Savoie says. “But we do not recommend people seek experimental treatment outside of clinical trials where there are safeguards for patient safety.”

Such caution is to be expected. It took Australian researchers a decade to gain acceptance for their research that proved ulcers were caused by a bacterium, not stress and lifestyle.

Geologist Ashton Embry, the founder of Direct-MS, Canada’s second largest MS charity, isn’t surprised by the skepticism. He experienced it first-hand as an early proponent of vitamin D in treating MS. “It’s finally starting to be accepted,” he says. “But if those people had been taking the proper amount of vitamin D for those 10 years it would have made an enormous amount of difference in their lives. That’s when I learned they didn’t give a damn about anything that wasn’t drugs.” And the market for MS pharmaceuticals is massive, with some estimates pegging revenues at $8 billion in 2009 and exceeding $12.5 billion by 2015. The battle comes down to competing interests, Godley says: “You have neurologists in the research communities that rely on corporate donations, large pharmaceutical companies that have a vested interest in maintaining or promoting the use of pharmaceutical agents.”

MS patients should be patient, Bar-Or says: “If this really is a cure then it ought to cure them in a year or two when we really will know more and will be much more able to endorse this as an approach.” But MS patients don’t have the luxury of time, says Godley: “If I put myself in the shoes of a patient with MS, I would want this done tomorrow. Not in six months—because I may be blind in six months. I may have no bladder control in six months. I may not be able to stand in six months.”

In Canada, MS patients and a handful of rogue doctors aren’t waiting for clinical trials or hypotheses to be proven. Dr. Sandy McDonald, a cardiac-vascular-thoracic surgeon in Barrie, Ont., has seen the benefits of CCSVI treatment first-hand. In what is believed to be the first informal liberation treatment trial, he performed six balloon angioplasties pro bono on MS patients in a limited trial earlier this year. One of his patients was able to give up his walker; a teenage boy could walk up and down stairs for the first time in years. Zamboni’s initial study intrigued him, McDonald says. He travelled to Italy to be taught Zamboni’s neuro-scanning protocol. And he weighed the ethical concerns.

“You look at the risk-benefit balance,” he says. “And, in this case, the risks are pretty darn small.” Using balloon angioplasties to clear jugular veins isn’t common, he says. But other “off-label” procedures (using medical devices in a manner they weren’t originally designed for) is routine. Venous angioplasty using stents is used to deal with renal failure all the time, McDonald says. “Are there controlled studies for that? No, but we’re doing it every day.” Cosmetic surgery is another off-label procedure, he notes: “It’s okay to get bigger breasts or a facelift, yet patients with MS, a debilitating, degenerative disease, have to wait for double-blind studies. Welcome to Canada.”

Gianfranco Campalani, a vascular surgeon in Belfast, Northern Ireland, who was diagnosed with MS in 1986, is even more blunt: “It’s unethical to prolong clinical trials when the procedure has been demonstrated amply that the risks are minimal or non-existent,” he says. Campalani had CCSVI treatment in Italy in 2006, administered by Zamboni. “The results were amazing,” he says. “My back was stronger; I could walk. Other functions not working 100 per cent came back.” His girlfriend cried the first time she saw him after surgery. Last year, when scans revealed a re-narrowing of the veins, he had another balloon angioplasty in Northern Ireland.

Campalani believes it’s scientifically acceptable that clinical trials of drugs be rigorous and safe and long given their potentially dangerous side effects. But CCSVI is different, he says: “If there are anomalies in the vascular system and you can demonstrate them, then forget about MS. You are not treating MS; you are treating a vascular condition,” he says. “And even an idiot knows that an open vessel is better than a narrowed or colluded vessel.” In some cases it may not improve symptoms, he allows: “But you have an open vessel instead of a closed one.” He has been asked to become involved in a private CCSVI clinic opening in the U.K. but wants nothing to do with it. The procedure should be publicly funded, he says, as it now is in Kuwait. Just last week the Kuwaiti government gave interventional radiologists the go-ahead to begin treating patients.

CCSVI brings with it a new public health care arithmetic. According to the Canadian Institute for Health Information, the estimated annual total cost of MS to the Canadian economy is $1 billion, more than that devoted to all infectious diseases combined. The overall direct costs of caring for and treating Canadians with MS is currently estimated by CIHI at $139 million annually, with drugs accounting for almost half of that. Meanwhile, the cost of a scan and angioplasty in a public hospital setting, according to McDonald, runs $1,500.

As dramatic as the economic reality is, the true cost of the disease has nothing to do with money, says Dr. Ian Rodgers of McMaster University, who’s coordinating a major CCSVI research project testing Zamboni’s findings. “The impact on quality of life is so catastrophic, there’s a very high emotional component to this. If there is a glimmer of hope that reversing these strictures in veins gives definitive improvement to people with MS, then absolutely it’s a necessary intervention.”

And that’s what is galvanizing a new tribe of warrior “MSers,” as they call themselves, who’ve united online—educating themselves on “Doppler scans” and sharing news and personal stories on ThisisMS.com. Facebook support groups are proliferating—forwarding online petitions and posting videos of their meeting: within hours of the Vancouver gathering where Godley broke his big news, a video of it was posted on UStream.com.

The power of the Internet and social media has changed the patient-physician dynamic, says Godley. “It’s put physicians who think that they can be guardians of our care in the place that they belong, and they need to become humbled.” An emboldened self-diagnosing patient has emerged. Sandra Birrell, a 51-year-old Victoria MS patient who organized the Godley meeting, represents the new patient-as-clinician mindset: “We’ve almost moved beyond our neurologists now to say we need to get our veins addressed,” she says, arguing that her CCSVI and her MS are separate conditions.

Heroes have emerged, like Dr. Marian Simka, a vascular specialist who operates a clinic in Katowice, Poland, where’s there’s a two-year wait list. Since the clinic’s opening last October, doctors have performed 224 procedures, 18 of them on Canadians. Canadian doctors have visited, too, says Simka, who travelled to Vancouver this year to meet with Godley at False Creek.

These people are on a pilgrimage, in search of healing, literally. One, a man in his late forties from southern Ontario, travelled to Poland last month. It was his last hope. In June 2009, he was diagnosed with primary progressive MS, the most aggressive form of the disease, for which there are no drugs. “The neurologist gave me nothing—zero talk of exercise or diet,” he says. “I felt they did everything but give me the plans for a wheelchair ramp for my house.” He was hesitant to travel across the world to get an experimental treatment, given that he could walk and even do push-ups. The risk of stent migration worried him: “But the wheelchair was more of a certainty.”

After the one-hour procedure, he felt clearheaded for the first time in months. “My wife couldn’t believe my colour,” he says. “It’s like a new life. I’m sleeping through the night; my leg is good. My balance is better. When I get up I feel great.” He says he doesn’t know how he’ll feel in six months. But the hope the liberation surgery has given him has been life-changing: “From getting diagnosed and the devastation of that, this was the best thing that has ever happened to me because now I’ve been given a gift.”

A visit to Simka’s clinic last month turned 45-year-old Calgary realtor Ginger MacQueen, diagnosed with MS in 2000, into a CCSVI militant. When she first heard about the Zamboni research, she was leery, asking her husband to scan chat rooms. Spending hours every day, seven days a week, reading blogs and medical research, turned her into a believer. MacQueen’s account of her surgery, which she describes on her “I hate MS” blog, sounds like an infomercial. “I’m walking now; all the numbness and tickling is gone from my body; the spasms are gone; I’m not limping, my foot drag is gone. I’ve got so much more energy.”

The day after her surgery, she and her husband walked for hours: “Usually I would have to stop every 10 to 15 minutes but I kept motoring.” Yet it was not her own experience but that of a 29-year-old man from Holland that had the greatest impact. “He arrived with impaired speech and his mouth looked like he’d had a stroke,” she says. A few nights later at dinner, he was a changed man: no slur, no facial disfiguration and he was talking about moving out of his parents’ house. “That’s when I got really furious,” she says. “To me it’s manslaughter if you don’t do something to help.”

Last week, MacQueen organized a protest outside of the MS clinic at Calgary’s Foothills hospital, agitating for CCSVI treatment to be available in Canada. Birrell, who plans on having the surgery, shares the sentiment: “It’s my first choice because I want to get follow-up care.” That’s also the hope of Dion Oxford, a 40-year-old MS patient who was diagnosed with CCSVI this week. Finding out he was eligible for surgery was an emotional moment, he says: “I went from inability to stop smiling to inability to stop sobbing.” Oxford, the director of Toronto’s Gateway Men’s Shelter, was diagnosed with relapsing-remitting MS 13 years ago. Last month, he was re-diagnosed with progressive MS. His decision to have CCSVI testing forced him to confront the new commercialization of the MS market: it cost US$4,500 in Buffalo, $2,700 at False Creek and $1,250 in Montreal. He ended up going to Barrie, where he was tested for free by McDonald, who is working to set up a CCSVI trial with Zamboni. Oxford hopes he will be a part of that, but research funding is required. To that end, he plans to donate the proceeds from his annual 190-km bike-ride MS fundraiser. He’s been doing it for six years and has raised more than $60,000 for the MS Society. This year, for the first time, he’ll ride for himself.


 

The ‘miracle cure’

  1. Progressive MS? Agressively progressive MS? Relapsing remitting MS?

    I know what it's like to want a cure. I want one for my spouse. But suggesting that people attempt unproven surgical interventions while trials are already ongoing is irresponsible. Doctor Godley has overstepped his professional boundaries, and should be suspended from practice. Right now, he's a snake-oil salesman, honing his craft with public funds, preparing to open his private clinic.

    Is this not theft or fraud?

    • "He has no more proof that his soon-to-be-commercially-available technique works than does Jenny McCarthy and her vaccine/autism hysteria."

      Well, he does have people who have gone through the procedure and now have an improved condition. I also think your Jenny McCarthy comparison is a bit off because the end result of her activism is people question whether or not to get their children vaccinated. I still think that doctors tell you to take your MS medication (if you have an MS therapy) even after you have the procedure.

      I do take your point that we should not be encouraging everyone to get the treatment before more study can be done. There is a risk/reward with any medical treatment and, as of now, we do not fully understand that balance. However, I can't really fault anyone who is at an advanced stage of MS who may see incredible improvements in condition with this treatment from getting it and, given that it is largely an already fairly well understood procedure, from allowing doctors to perform it as long as they disclose to the patient that it is still experimental and that the risks and rewards are not fully understood.

    • You obviously do not have MS too bad, as then you could speak about it and the effects of it. I do have ms and I hope that some day they find a cure, I am not sure that this is it, but I am sure that any narrowed artery in the human body (any human) can and should be fixed by a vascular surgeon with a proven miner procedure. Even if opening these blood carrying vessels only added 1 year to my life by reducing the risk of heart attack, stroke or massive coronary I want to do it. I know someone who had angioplasty done in her groin area because her KIDNEYS were failing do you think they should have not treated her as it has never gone threw clinical trials maybe all the heart patients should suffer too. How do you justify not treating a narrowed artery with proven procedures by Vascular Surgeons that are trained to do it? Instead you are saying I should allow a neurologist who is trained to deal with nerves to deal with my arteries?? You come across as a very narrow minded person.

    • To the MAN.

      Your comments are silly. Ask your wife what she wants instead of being a bully with your opinions, or continue to stuff her with drugs. I have a number of friends that have been essentially reborn.

      Again, ask your wife what she wants. Better yet, ask a friend to ask her so she does not feel the intimidation that I have gleaned from reading your crap.

      You are a bully.

    • It's too bad you don't know the whole story… Dr. Godley has set-up a world class CCSVI testing facility at False Creek Healthcare. At that facility, they have seen nearly 200 people with MS who also have blocked veins. He did not do the CCSVI Liberation Treatment, it was done by a surgeon in a Public Hospital. Dr. Godley is a trailblazer who is showing compassion, when so many who live off MS, put up road blocks.

      Dr. Zamboni said this Liberation Treatment should be made available immediately, especially for those who are fading fast, and no longer responding to any medication. The first person treated in BC has turned their life around. They have moved out of a wheelchair and can walk again. Darkness has been replaced by hope as they see their MS symptoms greatly reduced within hours of their Liberation Treatment.

    • bloody hell, M_A_N, why can't people be left to make their own health decisions?

      Here's what I say to your autism comparison:

      A New Jersey based think tank, The Center for Modeling Optimal Outcomes, LLC made an inadvertent and amazing discovery.
      "Because of its universal applicability, our Life Sciences group has already used the model as a tool to identify highly probable causal paths for several illnesses and disease entities. Autism was one of most difficult illnesses The Center had attempted to analyze. If it hadn't been for so many parents insisting that vaccines were responsible for the condition, we might never have found the fact that the stabilizer in MMR and a few other vaccines is hydrolyzed gelatin; a substance that is approximately 21% glycine. It appears that, based on readily verifiable science, the use of that form of glycine triggers an imbalance between the amino acid neurotransmitters responsible for the absorption rate of certain classes of cells throughout the body. It is that wide-spread disruption that apparently results in the systemic problems that encompass the mind and the body characterized in today's 'classic' autism."

    • as for the 'unproven surgical intervention' line, angioplasty has been used for over 30 years. do we really need proof that impaired circulation leads to impaired organ function? people, and especially those who have chosen the brain as their organ of specialty, should be bending over backwards to kiss dr. zamboni for opening their eyes to the fact that the brain's health is dependant on arterial AND venous circulation. restoring circulation should be the number one priority, researching the affect it has on a disease process is secondary.

      my theory is that relapses are the result of clot formation in the cerebral sinuses further impairing already impaired flow. improved vision and bladder control can hardly be chalked up to placebo.

    • MS does have different faces. Please read and do some research about what you are saying. They are different and are not all treatable with the 'day surgery' option because progressive MS becomes harder to fix if a bone moves into place where the vein should be. It will need two different types of surgeons. First a bone surgeon, and then an angioplasty surgeon.

      CCSVI had not been toted a 'cure' by anyone. It can totally stop and reverse MS if done early enough. However whether one totally will regain 100% nobody claims. The pharm companies only can SLOW things down.

      Do I want a stent? No way. I just want the day surgery that Dr. Zamboni does on weekends in Italy. It is a normal surgery that happens here in Canada to relieve and open narrowed or blocked veins. Let us MS patients get what other citizens have too!

    • The ZAmboni' s procedure has no risks, it is not so for all the drugs distributed by hospital at the moment.

      If you have an aggressive form of MS you would try even worse, like Tisabry or Mitoxantrone for instance.

      so, before speaking dear M_A_N, think deeply what you say please, it is an offense to the other who wants to read an

      opinion grounded on reality.

      thank you

    • There is nothing un-proven about angioplasty. If you had a blocked artery going to your heart, would you wait for more studies. I have had this procedure and the difference in my "quality of life" in just 2 1/2 weeks is incredable. Why would anyone deny a mother a run with her child, or a father from being able to play ball with his son. This is what MS has taken from so many people. Now this is a chance to regain some if not all of your life.

    • Sorry, but the the surgical interventions ARE PROVEN. But if you want to wait for your wife's neurologist to endorse a proof standard satisfactory to him/her…then you may as well make your wife comfortable with the idea of living with pain and preparing her convalescent room – TO SIT AROUND AND WAIT…OR TRUST YOUR MEDICAL PROFESSIONAL TO DO THE RIGHT THING IS STUPID!

      Drug companies control most doctors (and unfortunately hospitals) – and business is business.

      It's a simple PROCEDURE which is less expensive than a year of MS drugs…it's not snake oil. The drug companies (and neurologists) have a vested interest in denigrating this option because it's not proprietary and can't be patented… And NOTE: MS DRUGS DO NOT CURE MS…THEY REDUCE SYMPTOMS ONLY!!!

      It's extremely low-risk…it's not like an experimental drug with dangerous or unknown side-effects. Further, other countries with reputable medical professions (Australia; Italy; Germany etc. etc.) are all prepared to assess and treat – leaving Canada looking like a bureaucratic relic in the face of progress.

      It may very well be that this is not a MS cure…but it seems clear that it is a progressive TREATMENT of symptoms…and as anyone with MS will tell you it's the symptoms that are the biggest problem.

      • 'It's extremely low-risk…it's not like an experimental drug with dangerous or unknown side-effects"

        And we'll know how low the risk is after the studies are done. Sometimes, waiting is hard. And if the study shows incredible success, then it will be stopped and the procedure will be on provincial lists faster than you can say "health care budget".

        And it's incredibly lazy to prejudge all neurologists as being on the "side" of big pharma. That's not an argument, it's a tactic borrowed from the anti-vaccine movement. They use it when they can't counter hard science.

    • Obviously you do not have MS. Nor do I wish it upon you despite how ignorant I feel your comment is. The world is not flat. It is ridiculous to have come to such a conclusion based on simply having read only this article. This evidence has been documented by peer-reviewed scientific medical journals. This theory was presented 30 years ago by an Austrian researcher but ignored. They found large iron deposits in the brains of MS cadavers back in the 1870's. This information is not new. What is new is the internet and the inability of this news to be silenced.

      • No, my spouse has MS, actually. Thank you for making multiple assumptions about what I have read and my personal situation. By making incorrect guesses and attributing my statements to false premises, you completely undermine your own argument.

        Your ability to make statements of "fact" based on skimpy or non-existant evidence goes right to the heart of my argument. You're willing to believe what you want to believe before the facts are in.

        I really DO want this therapy to be effective. However, my spouse, who had a medical education and years of experience in her field pre-diagnosis, wants to see how the study comes out.

        • Yes it is provoking to make uninformed dismissive remarks and "multiple assumptions" without knowing all of the facts, is it not? I suggest you heed your own advice sir.

          • There is not yet peer reviewed science proving the efficacy of this treatment for Multiple Sclerosis. Thus, no acceptable scientific evidence. Not yet. To suggest otherwise is wishful thinking,.

            When the studies are complete, we will know for sure.

          • That may work for you. But others have a different opinion. And we live in a free country. People are free to make their own decisions about their own health and their own bodies. If a doctor and consenting patients choose to take their own path, that's their decision. You're a bully.

          • How it "works for me" isn't the point.

            I'm not telling them what to do.They can make whatever decision they like, even a bad one

            I'm making the argument that I don't want my provincial health care plan to pay for it unless it's been proven.

            But under the current health care system, we don't pay for unproven therapies. This therapy needs acceptable, scientific proof before our healthcare system will pay for it.

            Once we do that once, the floodgate opens, and we start paying for "gene therapy" in China and BS cancer cures in Mexico without asking for hard evidence. I've seen too many desperate, sick people fall pray to cons like these. All I'm asking for is the same proof required by every other medically approved treatment in Canada.

        • That is totally your decision – however, do not decide for me whether I should/could have the procedure done sooner. I should not have to wait for MORE proof… Not everyone has the luxury of time…

    • You know nothing.

      • Are not!

        • I feel your pain on this and regret the ad homenum [sic?] attacks, but the burden of proof on the science has already shifted.

          In the balance between an unnecessary safe angioplasty which might do nothing (but which will give us data to decide) and doing nothing, the patients' rights should win. There are 22,000 MS patients out there who have already volunteered for the studies. The studies are designed – they just aren't big enough. Your wife's personal decision to wait and see is a valid one – it's her treatment decision. For the 22,000 MS patients who want the treatment for their CCSVI now – where is their treatment decision. The studies should be required to show that the treatment does not affect short term outcomes.

          Half the country was inoculated against swine flu last year on less than 7 months notice at a cost much greater than the cost of treating a few thousand MS test cases in a controlled setting and treating the rest until it is proven ineffective. The inoculations are only effective for about 6 months. We got them anyway. This treatment pays for itself versus drug therapy if it provides 1 month of relief.

          As for whether or not its the vascular surgeons (with comparatively little to gain – 75,000 MS patients is nothing to the cardiac crowd) or the neurologists (with everything to lose) who are quacks – history will soon be the judge.

          • Thanks for helping return this to civility, Nick.

            Believe me, I get it. I want this to work as much as anyone else here, but the way our health care system works is "prove it works and then it gets funded". The problem with this situation is this: What constitutes enough proof to fund medications/procedures?

            We use the gold standard of proof in Canada. Peer reviewed scientific studies.. If we funded all the cures that might work or showed promise, the system would be broke from paying for mercury amalgam filling removals, prescriptions for Calcium ethylamino-phosphate, hyperbaric oxygen therapy, Prokarin, antilymphocyte globulin and tumor necrosis factor antagonists. All touted as MS cures, all had some level of public support, some even had early stage studies that showed . None stood up to real scientific research.

            And while it may be an almost foregone conclusion that this therapy has some benefit, the key word there is almost. As much as it sucks to wait to be sure, that's the very basis of our medical system's survival.

    • I have MS I can't afford the treatment over $20,000. I go to my specialist and he suggest trial this and that all the time. He has no proof or idea if his trial will help or hurt.

      I think it's up to the individual and not anyone else. If your spouse has an aggressive MS I don't think it wise of you to wait until nothing helps. It sometimes takes many years for the system to give the go ahead on medicine and procedures. Then a waiting list, if it's proven helpful. It depends where the person is with their MS and then PRO-CHOICE.
      My son was 3 years old and seemed fine he received his vaccine and now has autism.
      I don't think this post is helpful to anyone. It sounds like he has to take care of his spouse and that's not what he signed up for. Maybe he feels sorry for himself.

    • As a 42 yearold male with relapsing and remitting MS I am beyond emboldoned and inspired byt this simple procedure.
      Scan and ballon me now. I am all for research and you can monitor, track, chart and report my results with all the dilegence you can muster.

      We are talking $1500 instead of millions and billions on drugs. Which by the way are all proven to damage our organs.
      I like my organs the way they are. I was diagnosed 5 years ago and am blessed to be dapting to this insidious disease well.
      Whether or not this is a cure remains to be seen. Proof is proof people are walking again!~ How can anyone not be thrilled with that.

      My words are ABSOFREAKINLUTELY FANFREAKINTASTIC! Sin me up and baloon my veins please, purple is my fav colour. Thank God for Canada and our health care system .

      Joe Longo Guelph, ON Canada happyjoelongo@hotmail.com

    • You’re crazy. It’s been proven to work on enough people that it needs to be put into practice. He is a hero.

  2. Great article. The 'liberation procedure" has provided hope for many people living with MS and I hope that this does lead to a cure or a therapy that can improve the quality of lives for people living with MS.

  3. Let's see, I am very curious to see the final result of this debate & to catagorize a people those who stand for the life of human beings & those who are living simply for money or thier profit.

  4. The title is deceptive — only the media calls this vascular treatment a cure.

    If you have MS, you know the drugs can slow progression, but they cannot stop it. They can relieve some symptoms, but not all. And they bring with them serious side effects.

    This treatment is safe, less costly than one month of prescription drugs, and effective. The major symptoms that have responded extremely well in people treated — fatigue, brain fog, balance, bladder, spasms — are ones the drugs simply do not control well enough (for me) at all.

    Even if this treatment lasts only six months, or six years, I want it. I take more risks every day taking my MS drugs — let me make the choice to take a smaller risk to bring immediate relief to some of my most debilitating symptoms.

    • well said. I’m only at the 3 year mark since i’ve been diagnosed, but already i can feel what it is doing to my body. I am currently on a disease modifying treatment and it seems to help but the first 6 months of the injections were hell. if someone can get this treatment done, and it does make sence to open up blocked veins/arteries, then do it and spare them what i went through with the meds.

    • They are not saying though that after the treatment that we should stop our MS Drugs ( ABC's & R )

  5. If this does prove to be an effective treatment, just think of all the researchers that will have to find new jobs.

    Liberation treatment seems so simple that it's almost hard to believe that it could work. It goes against everything we expect from medical research where the more technical the cure, the more effective we seem to think it is. As well, in medical research, it appears that conclusive results are elusive. "Study A" will come to one conclusion and "Study B" will totally refute the conclusion of the first study leaving us where we started off.

    If I had MS, I'd want this treatment now. My friends suffering with MS want access to this treatment now, they don't want to wait years for so-called conclusive studies to be completed. This is a ray of hope that they've never had before.

    http://viableopposition.blogspot.com/

    • I agree 100%.

  6. this treatment does far less damage than the drugs that are used to 'modify' the synmptoms of MS. Patients should have a role to play in their treatment after all they're the ones that have to live with the disease. I hear a lot of may-sayers….thank God for doctors who have the courage to challenge the conventional wisdom. Insulin, penecillan and other medicines were 'discovered' by researchers thinking 'outside the box' of traditional mainstream medicine.

  7. Simple layman's terms…If you have a plumbing problem…would you call an electrician to come and fix it? Would you have to spend years in researching whether the plumber needs to use expensive chemicals as recommended by the electrician? Let's give reality a little freedom of individual choice here.
    .

    • I loved your analogy to a plumbing problem, right on!!

  8. This is very exciting and I will be interested in getting there! However, does anyone remember reading that False Creek CCSVI testing was shut down a while ago as they were doing the wrong test? If so, maybe that has all been taken care of?

    • No Ann, Dr. Simka was in BC in March and trained the False Creek Medical Center Staff to perform a proper CCSVI scan.

  9. as for the 'unproven surgical intervention' line, angioplasty has been used for over 30 years. do we really need proof that impaired circulation leads to impaired organ function? people, and especially those who have chosen the brain as their organ of specialty, should be bending over backwards to kiss dr. zamboni for opening their eyes to the fact that the brain's health is dependant on arterial AND venous circulation. restoring circulation should be the number one priority, researching the affect it has on a disease process is secondary.

    my theory is that relapses are the result of clot formation in the cerebral sinuses further impairing already impaired flow. improved vision and bladder control can hardly be chalked up to placebo.

  10. bloody hell, M_A_N, why can't people be left to make their own health decisions?

    Here's what I say to your autism comparison:

    A New Jersey based think tank, The Center for Modeling Optimal Outcomes, LLC made an inadvertent and amazing discovery.
    "Because of its universal applicability, our Life Sciences group has already used the model as a tool to identify highly probable causal paths for several illnesses and disease entities. Autism was one of most difficult illnesses The Center had attempted to analyze. If it hadn't been for so many parents insisting that vaccines were responsible for the condition, we might never have found the fact that the stabilizer in MMR and a few other vaccines is hydrolyzed gelatin; a substance that is approximately 21% glycine. It appears that, based on readily verifiable science, the use of that form of glycine triggers an imbalance between the amino acid neurotransmitters responsible for the absorption rate of certain classes of cells throughout the body. It is that wide-spread disruption that apparently results in the systemic problems that encompass the mind and the body characterized in today's 'classic' autism."

  11. It's always tempting to jump on new potential treatments for serious diseases like MS. The desire for relief is, rightfully, very high. However, it is essential that we ensure effectiveness of these procedures before diving headlong into them – to do otherwise is to spend money and time to provide false hope (even with the often strong placebo effect). We don't have that assurance yet. The downsides are also treated far too lightly here – any invasive procedure, especially one involving the blood flow to the brain, carries a non-trivial risk that should not be ignored.

    Yet, having seen a scan of an MS patient, it is shockingly clear that something is not right. Veins which are normally quite visible can be narrowed to the point of being nearly invisible on the scan. But what this narrowing means, what causes it, and what relieving it achieves is not well understood at this point. Not all MS patients have this observable narrowing and a non-trivial portion of the healthy population seems to have this narrowing as well.

    At this point, it's obvious that we should dive headlong into clinical trials, wide clinical trials (that is to say, anyone who wants in on the clinical trial should be able to). MS patients, quite rightly, want this procedure now, even with the risks and the lack of evidence of effectiveness. Obviously, being part of a clinical trial, some of those wanting the procedure would not get one, but rather be part of the control group, but as always, if treatment is clearly the better option, any study would be immediately suspended to provide treatment to those in the control group. Either way, studies like this work best with a large group – and we've got a lot of people who I'm sure would be eager to sign up.

  12. This comment was deleted.

    • Here's where things get sticky. "A physician using a public hospital to perform surgery not covered by the provincial drug coverage while misrepresenting his actions so he can access these public facilities?"

      This procedure, as it can hardly be classified as surgery, IS covered under our provincial health system. It's just not covered for one population and one population only, those who are afflicted with multiple sclerosis. Here's another tidbit for you, testing and treatment for cervical vascular anomalies was allowed up until January 2010, my sister was scheduled for over a month at VGH until the UBC MS Clinic realized they may lose their research dollars and not be able to develop their fancy new machine. When news broke that people were being treated guess who put a stop to it? That's right, the hypocrites at the UBC MS Clinic.

    • So what do I call a doctor willing to call venoplasty an angioplasty so his patients can be treated? A doctor. What do I call a neurologist who believes the health of the brain is independant of circulation? An idiot. And what is a person afflicted with MS called? A person. But unfortunately, to too many others, they are an MS patient, when they should be just a patient, and allowed treatment for any of the body's many systems

    • M_A_N – I agree with you completely and there are many of us in the MS world who do! We just happen to be a quiet group.

      I applaud the more vocal group for pushing for more action on CCSVI, but do not endorse those who are painting all neurologists or MS Society people with the same "against CCSVI" brush.

      CCSVI is exciting, but we have miles to go before we sleep.

      • There is a chicken and egg problem here. The government should fund an immediate clinical trial on the safety and effectiveness of this treatment using a venogram followed by balloon venous angioplasty procedure, if warranted, with follow up at 1 month, 3 months and 6 months; the study should happen at 10 medical schools across the country doing 8 per day (apparently it takes 45 minutes), 5 days per week. In a 10 weeks, 4000 MS patients would be treated at a cost of $6million and then another couple of million for the data collection and statistical analysis. The patients would have been getting follow up care for MS anyway – so that costs nothing extra. In 7 months we would have all the data we need – if this had been done in November, we would know in June!

  13. This whole debate about availability of the treatment is a farce. I have MS. I also have CCSVI. There is a cheap, quick, and well-know procedure (it's not an 'operation', it's a procedure) to open my blockages. I live in Toronto. Why is the procedure not being made available to me? Money. Careers. Empires. Egos.

    • I agree Thomas! I live in Barrie. If any of the big hospitals in T.O. (St. Michaels comes to mind since they have the M.S. clinic where I have gone on more than one occassion) would make this procedure available to us I'd be the first in line!

      • I totally agree, money is a real big issue to spend overseas with people, but money is only money, we need to live a pain free and a non suffering life. Lets tell all the neuros if they felt this way, wonder what they would do. Be the first in line, or wait till they are real going down hill.

      • Dr. O'Connor at St. Michael's put his finger in my face (after saying that Dr. Zamboni was a quack) and in an angry voice said "Even if he's right, that procedure won't be available in this province for years!" I was shocked. So there you go.

        • You need to shout this from the rooftops.

  14. Please stop calling this a "cure"…it is a treatment. MSers the world over understand this, why can't the press?

  15. My wife has MS was diagnosed in 87 since then she has daily been on 1000 mg Vitamin c, 500 vitamin E , 1000 Vitamin d, 500 Vitamin B, Primrose oil , Mendalamine and many different doctor prescribed medications saying they may reduce the symptoms. One medication she is on controls the spasms max daily dose is 80 mg. She is currently at 150mg. If this treatment would reduce her symptoms any amount we would look on it as a blessing. At this time she can no longer walk or feed herself, she has to have a catheter because she has no bladder control and her bowels are almost at the same level. The government think nothing of spending big dollars on someone with cancer to extend their life and quality of life for 1 or 2 years but wants to stand back and watch the people with MS suffer when a possibly cure or at least improvement of quality of life is available for $1500. Get off your high horses and do the research. Side affects are minimal but not unlikely to happen.

    • I so agree with yo !!

  16. I believe alternative treatments to surgery should be researched such as chelation therapy using DMSA (formerly EDTA) which has been used to remove toxic iron, mercury and heavy metals from the body. It was originally developed by US military. Possibly use these treatments in conjuction with serratia peptidase enzyme to remove permeate the blood-brian barrier and dissolve dead and fibrous tissue. MS Society should research these less expensive and less evasive treatments.

  17. Very good article. It's such a simple and safe procedure, many times safer than the dx of MS or all the drugs with their side effects. As the Doctor said in the article, everyone seems to think it's ok to do cosmetic surgery like breast implants which carry a far bigger risk and much more discomfort, but something as simple and quick and ballooning a vein, opinionated members of the medical society and the National MS Society can't seem to support. Who on earth would want to live with the knowledge that the blood from from their BRAIN is occluded and not do something about it???

    • Yes Brenda it seems simple ''common sense'' befuddles the so called "experts".

  18. This treatment seems interesting, but I have a few questions. I read the article published by Zamboni (which was not double blind) and it mentioned that the patients who got the CCSVI treatment were still on their prescription drugs (before and after the surgery). Were the people who have gotten this treatment since, still on their MS medication?
    I ask to clarify that the improvements in symptoms were purely due to the surgery and not because of the drugs.

    Furthermore, I have no issues with patients getting the surgery done.. but do we have scientific evidence that this procedure stops demyelination? (that is, over several years)

    oh and also, I don't work for a drug company, I'm just a university student interested in this topic

    • curiouscat,

      Excellent questions…please, stay interested for those of us with MS. There is no scientific proof that it stops demylination-yet. Still early but it's my understanding that those who have had the procedure report no new attacks no more progression. Time will tell.

      • Hey Kim,

        Thanks for your response. All of the people who choose to get this treatment now, are they still on their old MS meds?

        Also to understand this correctly, some MS patients are upset with the MS Society of Canada because it will not endorse this treatment (because without approval from the society, the treatment is not covered)? I understand that they are allotting a significant amount of money towards research for this treatment.

        Finally, I suppose it's easy for me to say since I don't deal with MS everyday, but isn't it scary to try out a treatment that hasn't been thoroughly tested? Sure, this way of exploring possible solutions to diseases has been successful before but hasn't it also failed? Improving the extracranial blood flow doesn't sound like it has any negative side effects, but won't only long term, highly controlled studies prove this?
        I can understand the frustration amongst MS patients, but I think if I were a doctor/scientist, I'd probably want to see a paper with a well structured experiment (because the one published by Zamboni wasn't double blind), over time, to know for sure, exactly what I was prescribing to patients.

        • There are anecdotal accounts from patients in the forums section athttp://www.thisisms.com which discuss people going off the drugs.

          Venoplasty has been done for years.

          The downside of doing nothing is disease progression.

          The drugs are pretty awful from a side effects perspective and cost between $20K and $40K per year.

          From a proof of linkage and effectiveness level, a double blind study may be of academic interest; but a clinical trial does not need to be double blind to be effective and establish the links to know this is the right thing to do.

  19. I can't help but respond to this article…the first time I have written about CCSVI on any forum.

    My Wife has MS – only diagnosed for a couple of years but it has affected all areas of her body (cognitive, fatigue, muscles spacity, bladder, nerve pain, senses -smell/taste, pins and needles, vision… etc). She had the doppler ultrasound (which showed narrowing), followed by the venoplasty procedure (balloon to open the blockage). Our lives have been turned back 4 years. She is now driving, can see better, improved cognitive clarity, fatigue level is that of a 'normal' person. 'Simple' things like cooking, shopping, housework, walking, late nights are now all possible.

    Were we 'ripped-off' to fund an opportunistic doctor? Absolutely not – cost $300 for the ultrasound procedure. venoplasty conducted through public health.

    • where did your wife made the liberation treatment?

    • I had tears in my eyes reading your wife' story. I am so happy for your family.

      Purely on a selfish note – Can you say where you had the test and treatment done? I have contacts with someone going to Poland, someone on a wait list in Barrie Ont and I am on a list as of yesterday at False Creek (so far they say only the test???) Anyway, any information you can share is greatly appreciated. Lived with this too long.

      Thanks
      Ann

    • Where do you live? I was diagnosed with MS 6 years ago and in the first year had been in the hospital more than I had been out! Subsequently I had to quit work and have been off ever since. I have RRMS and would like to have the testing and if necessary the procedure. Thank you in advance for any help.

  20. 1ist time comment continued….

    We have been on Betaferon followed by Tysabri – both appeared to be useless in helping slow the speed of relapses. And guess what – no chance of getting PML with this procedure.

    Is it a cure? I don't think so
    Is it a clue? Absolutely
    What is the link? That's what we want researched – what is the link between this and MS

    Whilst that research is conducted (which may take years) lets treat the symptoms that people present with – isn't this what they do today – if you have spacity – use baclofen, if you have myclonic jerk – use Keppra … if there is a blockage – fix it!

  21. I have read enough – 15 hours a day for almost 5 months – since hearing of CCSVI – which I originally dismissed as another bee-sting type therapy. As I learned, I recognised the root of all of my issues since my first MS attack 17 years ago.

    To those who do not have MS: The first attack, and the weirdness that follows is devastating. I was at the physical, and mental prime of my life when I was hit. I went blind over night, and was blind for almost a year. My two fledgling businesses died. I died. 1/3 of my life has been spent either trying to recuperate from an attack, or cowering in the face of the next one. When I had my first attack, it was suspected that I might have had a brain tumour. Oh, how I wish! A brain tumour could have been excised (or not). If not, it would have killed me. My initial MRI revealed, not a brain tumour, but “suspected MS”. I saw a neurologist. He looked frightened as he told me that my life expectancy just plummeted by 20 years. He looked ghastly as he told me that the prognosis was poor, that there was no hope – but for a new, experimental drug called beta-Interferon. He looked positively funerary as he suggested I get my affairs in order, that I plan for long-term care, and that I seek counselling, as some 30% of MS “victims” end their own lives. Pah!

    I have graphic evidence of blocked jugular veins, which do not behave normally (as related by a real doctor). My thyroid gland is compromised by impaired venous drainage (as related by a real doctor). I am wasting away due to impaired thyroid function – 6’2″ and just 149 pounds. I will be dead of wasting in a year if I do not have ny documented venous issues dealt with. I was listed for treatment until it was shut down. Brcause I belong to a “group” that has a disability (MS), I am denied treatment. Would someone with cerebral palsy, or ALS, or someone with no legs be refused treatment for a vascular condition because it has not been proven to grow new legs? That sounds an awful lot like a violation of the Charter of Rights and Freedoms to me.

    I can readily get treatment for vascular problems in my legs, in my kidney, in my heart, in my lungs, in my liver, in my arms, etc. I can get a face lift, and can take anti-depressants to help me quit smoking. I can get free needles to shoot cocaine and heroin into my arms. I can get a prescription for valium, anti-depressants, sleeping pills, waking pills, but the normal blood-flow through my brain can not be treated, because the MS Society of Canada, the National MS Society of the USA, the UK mS Society, say that an hypoxic, toxified brain, made so by impaired circulation, can not possibly be the root of my problems.

    I have not worked for ten years because of MS, yet I just spent $2350 to get the scans, so that I could be treated. Next month, I will spend over $20,000 dollars to haul my 3 year old son, and my wife, to Poland to have a procedure that costs $1000 in Canada for the public health care system. I do not collect disability. I pay $1360 a year for public medical insurance for my family, yet I can not get treatment.

    The book will be out soon. Grin.

    • I wish you all the best.

      • Solipsist,
        I share your disgust with this situation 100%. Based on Dr. MacDonald's cost estimates above. The entire MS population in Canada can be treated for About $100 million (less than the direct costs of the disease currently), new patients can be treated for $1,500,000 per year (yes about the cost of 6 neurologists who wouldn't be able to treat the 1000 new MS patients alone), and at a restenois rate of less than 50% (excluding stenting) the annual direct costs drop a fraction of what the treatment currently costs our system. Then there is the fact that current treatments do not generally improve symptoms, and that drug therapies are not approved for non-relapsing remitting patients.

        A $1500 treatment that appears to work at low risk versus $500 injections every week which don't and have clear damaging side effects. This should be a no brainer.

        Good luck in Poland with your treatment and your post op recovery.

    • You are a brave Man, I wish you the best!!

    • Well put solipsist, my daughter is one who is choosing to take the drastic option if the time comes when she can no longer look after herself. She has been liberated and it was a small risk to take as compared to death which was the only certainty in her life. Even now there is no certainty that she will stop progressing, but at least she has a chance, a better chance of improvement or stabilisation than has been offered to her up to now and is not pumping ineffectual drugs into her body.
      It will take a while before we know how effective this has been, all I can say at the moment (4 weeks after liberation) is that she is certainly not progressing and she is noticing some gradual changes in her ability to recover from fatigue. She is having her blood tested as we speak as she is hoping to see some improvements in her thyroid function too.

    • On a different tack… How would you feel about talking on a webbased radio show in the UK about your opinion on the situation with MS societies and CCSVI.
      Find me on facebook: Michele Findlay

    • Hi I will be at simkas clinic at the end of May I,am very excited about this Ron

  22. This theory was presented 30 years ago by an Austrian researcher but ignored. They found large iron deposits in the brains of MS cadavers back in the 1870's. This information is not new. What is new is the internet and the inability of this news to be silenced.

    • Also the doppler ultrasound and MRV technology to scan for the insufficiencies, those are new.

    • The Internet is very instrumental but my issue is what took the neurologists so long to not figure this out. How pathetic, no wonder they are trying to stop this theory, it makes them look like idiots. Now they look like the scientists that said Galileo was wrong, who are they? exactly but we know who galileo is and we will know Zamboni's name and Simkas for a long time. Shame on you neuros.

  23. I have no idea if this procedure works or not, but the reality of the health care system that we have bought into is simple – you don't get to decide. It will be up to provincial health departments and their bureaucrats as to what procedures will or will not be approved and funded. So if you want the Canadian health system this is the trade off. By now we should be use to it.

    I hope this procedure works for MS – but until it is 'approved' you will have to use your own dollars to get it. So sad, too bad, but again that is the tradeoff.

  24. What's pretty crazy is here in the states pick a day pick a program to watch anytime any day and during the commercials you will see 10-15 commercials for some new Rx American are the most prescribed society on earth. We are over dosed to the limit that crime is threw the roof But as they say your easily controlled when dazed and confused and hooked on a substance

  25. My husband is fortunate enough to be in the early stages of M.S. He can still work and afford to pay for this procedure. It is shameful to think that those who cannot afford it will be denied and that their condition will likely continue to worsen. The cost to society is too high. We need to pressure government to allow this procedure for all who desire it.

    • right on Chris

  26. There is Canadian Precedent for Action on this. Read the Polio Vaccine Story. http://www.healthheritageresearch.com/Polio-Connt
    Paul Martin Sr. pushed forward with the cure in the face of US vaccine problems and the rest is history. The feds and provinces picked up the entire cost. And this is pre-medicare!

  27. I live in calgary and this procedure seems very promising Where should one go to check this out more. Any help appreciated.

  28. What else does M.S. cost the economic and humanistic environment? Employees who can no longer work, parents who cannot care for their children, homemakers who can no longer maintain a household, spouses who can no longer be lovers, adolescent and adult children who take on way to many burdens and are deprined of normalacy; the list is abhorent and endless, along with all the losses that an MSer experiences emotionally, psycologically and physically. And we in Canada are a humane society!!! Perhaps CCSVI is unrelated to M.S., however, if a venogram procedure enables individuals to be more productive, does not that relieve the economy , caregivers and family, regardless of the enormous drug costs?. We cannot ignore scientific evidence, however, denying the humanistic aspects of M.S.for patients and families in a country that fights for human rights is an embarassment for our government.

    • "We cannot ignore scientific evidence"

      Exactly. That's why we're gathering some. Lots, actually.

  29. Una described the plight of MS families exactly and her words could be the scenario for a documentary on the life of those affected by this dreadful disease, the only aspect I would add to her storyboard is the plight of the people diagnosed in their teens such as my daughter who was just at the start of an exciting life. At the beginning of her disease she had done a degree, she had qualified as a talented designer, had met the man of her dreams, had got herself a home and was hoping that her condition would be stable enough for her to have a family. Before she had time to consolidate her achievements she was hit by a terrible relapse that had her in hospital for 8 weeks, unable to do anything for herself and within 6 months effectively destroyed her life and prospects. When she came out of hospital, she went into a rehab unit and eventually came and lived with us for 4 months, before she was able to start gradually rebuilding a life for herself. But this was a completely different life to the one she had led before and she had to rethink her future in view of the unrelentless progress of the disease.
    Even though CCSVI treatment may not be a cure, and she fully expects to be disabled for the rest of her life, she is hoping that her Liberation treatment in February and March will give her back some parts of her dreams… some hope and some purpose in life; it may give me back my daughter, she may decide to live and consign to the realm of nightmares her plans for suicide.

    • Please forgive my omission and thank you so much for addressing early onset M.S. My heart goes out to you. There is nothing worse as a parent than watching your child suffer. I recognise your pain, your loss and your frustration. Remember that your daughter has all the basic pre-requisites to fight this disease and the love and suppoort to fight for a cure. She is an intelligent, talented, loving,ambitious lady and you are by her side to help her.This is an exciting time in M.S. research and anything is possible. Wish her good luck with her Liberation treatment and I will keep her in my thoughts and prayers, as I do for all us MS'ers. DO NOT LOOSE HOPE.

  30. Yes, thank God for the doctors that have the courage to stand up to 'the system'. For the better part of 20 years I have had to learn to be my own advocate – and those of us with MS and our loved ones SHOULD be up in arms. Mainstream medicine and pharmaceutical companies have walked hand in hand for far too long, now. This whole debate needs to be over and the medical community should be ashamed. One doctor that I spoke with, head of Clinical Trials at UBC, said that it could be 2 years before funding was even in place to perform Phase 1 trials!!! OMG, my heart dropped – 2 years?? If I could count the amount of money I've spent on medications, not only for my MS, but for every other related condition – from optic neuritis to UTI's – and the amount of suffering all of those things entail on a day to day basis, it wouldn't even come close to what this realistically costs. Then, I think of my sister-in-law, who died last year due to complications from primary progressive MS. This treatment is the only one that could have offered her some relief…and, perhaps she would still be with us today. It makes me cry….and very, very angry.
    Again, shame on the medical community that is, literally, holding us financially, physically and emotionally hostage.

  31. Because they will have the same situation on their hands as the MS Clinics did right after the first media report back in November…they won't be able to answer their phone for a week

    • Christine, I did get thru right away on the phone! I got an appt in July. I then see the next day on the FB site that they are not doing the procedure, only the test. The article was not accurate. I guess I don't understand how that could possibly be misunderstood?!?!?

  32. The fact we are merely discussing the Liberation Treatment is mind blowing. Who's choice is it anyway? MINE, the same person who's choice it is to vote in or OUT a Government that does not support an individuals right to Choice. Keep this in mind contact your local MP and let them know. It's simply either support our decision or start packing.,,,,,,,,,,

  33. CCSVI is found in 50% of MS, in 42% of other neurological diseases such as Parkinson's and Alzheimer's and in 25% of normals. So with the liberation procedure, we can not only cure all sorts of diseases, but we can also cure normality. This is better than snake oil.

  34. What a fantastic article. Thanks so much for giving this problem the press it deserves. Bravo Macleans! As I type this comment I am getting ready to board my flight to Poland. I will be liberated on April 28th. Thanks so much for giving us a chance to be heard.

  35. If I had MS I'd be yelling to have the procedure done. The gamble not to do anything is too severe with extreme costs. YES YES to the liberation treatment. Regardless of the outcome, A person would benefit from having the neck vessels repaired.

  36. CCSVI needs to become available here in Canada!!

  37. The facts as I understand them – you do the math:
    2.5 million people diagnosed with MS world wide
    $33 million the Canadian MS Society raises annually – which only $7 million goes to research
    $8 billion annual cost of MS drugs sold in North America
    5 or so doctors doing the procedure as of April 30, 2010 worldwide?
    2 years – I understand this is the Poland Doctors waiting list to conduct the procedure
    1 country – Kuwait includes the procedure in their medical system (is this a tourist attraction ploy?)
    1,000 people diagnosed with MS every month in Canada
    $1,500 the cost of a scan and angioplasty in a public hospital setting – 45 minute procedure

  38. Again, do what you like. Just don't expect the health care system to pay for it until it's proven. That's how the system works. That's WHY the system, as flawed as it is, works.

    You are always free to persue your own means with your own money. If you wish to use the taxpayer funded system, you'll have to wait for the scientific evidence.

  39. Expect lots of interference from Big Pharma in any cure. They only wish to maintain customers, not cure them and loose a sale.

  40. "… In fact, the procedure that Godley describes was performed under the radar in an unnamed B.C. hospital, billed as a routine angioplasty. It was done “very quietly without the hospital knowing what he was really there for,” he says. Soon, though, such stealth will be unnecessary: in May, Godley said, his private clinic will be the first in Canada to openly offer the day.."

    I suggest that Dr. Godley pay full cost for this procedure. I would also suggest that the government of BC examine any and all procedures that this doctor may have performed; a full investigation into his billing practises. His deceit is inexcusable.

  41. A very dear friend has MS and I can't imagine what she is going through. This reminds me of Dr's vs Chiropractors – it's up to the individual situation what works best for them. All the money, paperwork etc, etc, for "more research"… is frustrating for those who themselves or family/friends are having to suffer through. I'm speaking not as a professional or anyone with medical background…just as a concerned "voice" who cares.

  42. The role of venous drainage issues in neurodegenerative diseases is not new. I have been writing about it for well over twenty years now. What's more, MS is just the tip of the iceberg and aging baby boomers and neurodegenerative diseases are the iceberg.

  43. I agree with Zamboni on CCSVI BUT I disagree with him on the primary cause, which he attributes venous stenosis in jugular outlets. Venous stenosis fails to explain the peculiar demographic aspects of MS; that is unless Asians, Eskimos and people living in southern and tropical climates have a lower incidence of venous stenosis to explain their lower incidence of MS. The most likely cause of the CCSVI is back pressure against the vertebral veins. For additional information on CCSVI please visit my website at uprightdoctor.wordpress.com.

  44. Canadian healthcare's new name is wealthcare, i wish they could pull their head out of their XXX long enough to read this, regarding MS Canada, "U SUCK"