91

CCSVI dead? Not so fast!

Anne Kingston on the latest headlines around CCSVI studies


 

In his latest column, my colleague Colby Cosh put on his coroner’s cap, declared CCSVI “dead,” and did exactly what columnists do: stir up controversy. As evidence, he cited two recent negative CCSVI studies—here and here–and noted a study funded by the government of Newfoundland and Labrador that concluded MS patients who received venoplasty to treat chronic cerebrospinal venous insufficiency, a vascular condition identified in 2006 by Paolo Zamboni, experienced “no measurable benefits” and in some cases saw a worsening of  symptoms.

This research is damning, no doubt. But a mortal blow it’s not. It also demands greater context within the polarized—and politicized—sea of CCSVI research.  PubMed  lists 136 CCSVI-related studies: the positive ones, which outnumber the negative, tend to be reported by vascular specialists in vascular journals; negative reports tend to be found in neurology journals.

Colby’s column arrives amid a rising crescendo of negative CCSVI buzz. As an indicator of how over-heated and irrational the subject has become, last week the supermarket trash tabloid  Globe magazine blamed Annette Funicello’s recent death on CCSVI treatment she had two years ago, though they failed to summon any evidence. Recently, the University of Buffalo researchers who staged the first randomized, controlled clinical treatment trial (on nine patients) took the usual step of reporting its negative results on YouTube before they’d been accepted for publication.  Even so, they didn’t see their results driving a stake in CCSVI’s heart: “This is not the last word on this endovascular treatment for MS,”  Dr. Adnan Siddiqui said: “This is the first word.”  Their work also showed benefit of venoplasty in improving cerebrospinal fluid (CSF) flow in MS patients.

The 2013 study Colby referenced from the Journal of Cerebral Blood Flow & Metabolism was produced by the same team that delivered one of the first negative CCSVI studies in the Annals of Neurology. That 2010 study elicited this letter to the editor from Zamboni who claimed the findings supported his theory that MS patients have venous flow irregularities. This new study also identifies venous flow abnormalities in people with MS:  “findings on cerebral veins are also reflected by  low  magnetic   resonance   perfusion   measures   (cerebral   venous  blood   flow  and   cerebral   venous   blood   volume)   and   other measures suggesting an underutilization of oxygen in MS brain tissue.”

Detroit-based physicist Mark Haacke, an internationally respected MRI imaging pioneer who invented the imaging techniques referred to by the researchers in this new paper, waves off doomsday talk: “CCSVI is far from dead,” he says. Haacke, also affiliated with Hamilton’s McMaster University, has screened more than 2,000 MS patients with MRI (he says the operator-dependent ultrasound used in many CCSVI studies is inconsistent). “We see significant abnormalities in the 650 cases we have processed so far,” he says.

Other much-needed research is ongoing. Canadian clinical trials,  announced in 2011, are finally screening potential candidates, says neurologist Anthony Traboulsee, the lead researcher. After months of bureaucratic delay, MS patients from Saskatchewan are again being sent to Albany, NY, to participate in a trial. Zamboni’s own delayed clinical trial is underway in Italy, after the sort of intrigues usually reserved for opera.

Zamboni appears unperturbed to hear his hypothesis has been declared “dead.” He’s used to media seizing on negative studies. “Every scientific paper with negative CCSVI results is invariably written by authors weighed down by conflicts of interest,” he said in an email. He noted that the Berlin editorial office of Journal of Cerebral Blood Flow & Metabolism is in the same department the study’s authors work. (I also noticed that in disclosures in the 2010 study, one of the authors revealed a conflict–“K.S. has received speaking honoraria from Sanofi-Aventis, Novartis, and Merck-Serono”; this time, there are no conflicts declared.)  But CCSVI pathology is an accepted medical entity, he says, with the “vast majority” of PubMed research “confirmatory.”

Colby writes that CCSVI is some kind of made-in-Canada mania unleashed by CTV and Globe and Mail coverage in 2009. In fact, Zamboni presented two papers on the topic to the Royal Society of Medicine in London, the first in 2006; researchers, including those at the University of Buffalo and Stanford, saw enough merit in his theory to commence their own research;  a clinic in Poland began offering CCSVI treatment. He also took Zamboni to task for being out of sync with medical orthodoxy concerning MS: “His theory of CCSVI seemed to contradict much that is known about MS, and failed to account for obvious features like the midlife age of typical onset,” he writes. But what is actually “known” about MS, an incurable, degenerative condition of uncertain cause, is inconclusive–though we do know that typical MS onset is not “midlife”: it’s typically diagnosed between ages 15 and 40.

We also know the condition is wildly heterogeneous in terms of symptoms and progression; it is also often misdiagnosed, confused with conditions with known vascular, infectious or auto-immune etiologies—lupus, Lyme disease, myasthenia gravis, central nervous system angitis, the list goes on, which could  help explain why some people diagnosed with MS benefit from CCSVI treatment and others don’t.

In fact, vascular links to MS predate the French neurologist’s Jean-Martin Charcot’s naming of it in 1868; the notion that they could be a co-morbidity factor exists in medical research, unproven, throughout the 20th century, as compiled here. Yet the still unproven auto-immune theory has prevailed, fuelling neurologist-lead MS research and education since the 1930s; it’s based on an EAE mouse model that some neurologists say offers a “misleading”  proxy for the condition. Even so, it’s become the foundation of a billion-dollar MS infrastructure buttressed by symptom-modifying drugs that can run upward of $50,000 per patient a year and are subsidized by governments: it’s a market forecast  to reach $20 billion in 2017—up from $8.2 billion in 2009.

The economics—and politics–of MS treatment is a subject ripe for investigation, especially given concerns about drug safety and efficacy. Colby reserves his concern for the wallets of CCSVI patients: “But after years of empirical setbacks for the whole notion of CCSVI, it is all looking like money down the drain,” he writes. To put this in context, we’re talking three years–and upwards of an estimated 20,000 treatments. But he’s right that CCSVI treatment outside of a clinical setting can be an opportunistic Wild West; standards and quality vary. Zamboni himself has cautioned people to await clinical trial results.  It’s also true that some people have spent tens of thousands of dollars on treatment that didn’t help and contains risks. There have been three known deaths.  Post-procedure complications can occur, with Canadians facing the additional worry of being denied after-care for CCSVI treatment at home, which—shamefully–is happening.

But CCSVI treatment has also benefited many, according to anecdotal accounts and research. Some improvements have been dramatic, as seen with Barrie, Ont. resident Steve Garvie who was treated in a limited trial in Canada in 2010. For more it has provided vital symptom modifying relief,  as seen with Funicello, who was diagnosed with MS in 1989 and was extremely disabled when she underwent venoplasty in 2011. According to this  CTV documentary, her husband reported small improvements that contributed to her quality of life.

CCSVI remains a puzzle. But increasingly it’s clear it’s a puzzle piece–and  building block  in terms of sparking investigation into the woefully  understudied and little-understood venous system. We’re now seeing research into venous abnormalities in other neurodegenerative disease, including Parkinson’s and Alzheimer’s, as outlined here. Haacke is now scanning Parkinson’s patients. Zamboni’s theory has also mobilized the formation of the interdisciplinary International Society of Neurovascular Disease which has  planned its fourth annual meeting next year. Venoplasty studies have begun to identify grey matter (rather than white matter lesions) as an important marker of brain health in MS patients.  So, as Zamboni jokingly puts it: “Who is really dead?”  The question is rhetorical.

 


 
Filed under:

CCSVI dead? Not so fast!

  1. Judging by the outraged comments on Cosh’s article by people who experienced improvement with the procedure, personal experience trumps theory every time.

  2. Ms Kingston is playing fast and loose with the facts about the University of Buffalo trial. It was reported on YouTube (for publicity I guess) but was also presented at the annual meeting of the American Academy of Neurology on 20 March 2013. There were 30 MS subjects in the trial, not nine as stated by Ms Kingston: 10 were a safety cohort, and 20 were randomized to balloon dilatation or a sham procedure.

    • The 2nd phase of the BNAC trial failed to improve blood flow and the first phase improved blood flow and showed improvement in the trial participants. BNAC has stated that they believe CCSVI is a disease (just one not related to MS) that requires further study and a different treatment protocol. The recognition of CCSVI is real, the fact that people with MS seem to have a tendency towards the problem is real and the treatment model seems to be the real issue for BNAC. My feeling is that in a couple of years they will come up with a drug.

      • “the fact that people with MS seem to have a tendency towards the problem is real”
        I’ve not seen any credible research that shows that. Can you provide the link?

        • Perhaps you didn’t watch the University of Buffalo youtube video in which, at the very beginning, Dr. Zivadinov clearly states “CCSVI is of higher prevalence in patients with MS than in controls”

          • So then you also accept the conclusions of the Buffalo Study? That the treatment offers no subjective or objective difference in outcome than the placebo?

          • They didn’t improve blood flow with the treatment so they didn’t do the treatment part correctly!

          • So, if the study doesn’t give you the results you want, the study must be wrong. Okay, then, I’m goning to stop wasting time asking you to explain things. Bye now.

          • The study is fake or done by idiots. My wife had a super result as did a friend in the states and this happened in the last month in Newport beach. By the way, just because the neurologist declared his conflicts of interest, does not mean that they did not influence the study.

          • Again…”So, if the study doesn’t give you the results you want, the study must be wrong”

            You’re simply digging a deeper hole.

          • Mostly Civil, We got the results we wanted, better than we imagined actually, and we videoed before and after neurological tests too. And a friend got a great result 1 week later. That’s why we know the study is a fake. I have a playlist called Jade’s autonomic system reboot, shows Jade before and after the procedure. And that is actually science, you do a before the experiment measurement, you do the experiment (the operation) and then you re-measure. All clear? I was a lab tech and that is how we did experiments of all kinds. The result of the experiment depends on the difference between the before and after measurements. Was there a difference? Hell yes! And it was HUGE! That is science, Placebos are a red herring, a layer of bureaucracy that is relatively easy if you are just taking a pill under the tongue but almost impossible to implement in an experimental surgery.

          • “That’s why we know the study is a fake.”

            Just stop, okay. You’re yelling at a wall at this point.

          • MostlyCivil, you may be a wall and people like you have people like my poor wife walled into your torture chamber because you will not look at the proof. But there ARE other people out there who care about their fellow human beings and care about human dignity. It is savagely cruel to deny someone the right to bladder control. It is savagely cruel to condemn them to exist in a brain fog, etc etc etc when a simple operation will give relief to 2/3 of them. It is also extremely mentally dull to not want to know exactly why this treatment has such a huge effect. If some of you are caring people, check my playlist, “Jades autonomic system reboot” and see for yourselves. She did neurological tests before and after. In normal science, or indeed a normal hospital, her results (and the results of many others who “feel great” afterwards) are considered successful but to the MS researchers, they are considered anecdotal and they refuse to measure the success themselves. It is perverse and by the standards of normal science and humanity, it is a crime.

          • “and by the standards of normal science and humanity, it is a crime.”

            By the standards of normal science, it’s not science. That’s your problem.

            I

          • Nobody ever did placebo surgeries. It is unethical to do so. It is reasonable for people to look at videos of my wife having a dramatic recovery. But many people refuse. If Galileo discovered Jupiter’s moons today, and said,” really, it is true, come look!” you and your co thinkers, would claim it is an anecdote and refuse to look through his telescope. A qualified surgeon treated my wife using the best surgical techniques available in the USA. Canada is in the dark ages.

          • I’m refusing to look through your telescope, because you’re using it as a magnifying glass.

      • She only quoted the number who were treated not shammed. Maybe the MS neurologist and MSS’s ought to get together to re-evaluate what the hell exactly are the so-called list of symptoms for MS now …..because if you ask me its no longer accurate on their website. The majority of symptoms of MS are basically the same symptoms that CCSVI causes? Oh and right lets spend more money (millions) to come up with another damn drug like we do for everything else out there when we can’t figure out any answers to what causes a disease! ….That will really save on taxpayers money. What a cop out!

        • Guest, you made a very good point, The surgeon ballooned my wife’s neck and kidney veins and “like turning off a tap” he turned off her numbness, her brain fog, her incontinence etc. What does that mean? Doesn’t it mean that all these symptoms are not ms symptoms at all! I mean, it is not as if he stuck a knife in her head and took out those nasty lesions that “cause” the disease.

    • Dr. Preshaw, I’m wondering if you ever bothered to check on my medical records like I advised–my neurologist documented that I am now “significantly better” following treatment for CCSVI–with neurological tests that prove it. This after being told by him for close to 20 years that I would only progressively get worse and NEVER improve. Some of the examination can be seen here: 1 year “Angioversary”
      http://www.youtube.com/watch?v=9BNL42wcFLE&feature=youtu.be

    • Ms. Kingston is correct. Nine patients were actually treated with venoplasty in phase 2 of the BNAC trial. The others were sham or control patients. And the AAN presentation was made for a poster. No paper has been peer-reviewed or published. The University of Buffalo press release, picked up by the NY Times and other media outlets, and the two-camera YouTube video professionally filmed and edited by the University of Buffalo, gave unprecedented press and prestige to a poster. Most curious.

      • You forgot to mention that they were UNSUCCESSFULLY treated with venoplasty,….of course there was no improvement since they didn’t fix the problem!!!

      • Joan, Like Ms. Kingston I thank you both not to mention Dr. ZAmboni and your husbands doctor for continuing the fight. The history book is being written and when people look back on this they will shake their heads and wonder how big Pharm was even allowed to have so much un controlled power. U of B- shame on you.

    • This is incorrect. 10 patients were openly treated (no randomizing). After that portion of the study concluded with no safety issues, another 10 patients were then randomly assigned to sham treatment, and 10 were assigned to ballooning, but 1 was found to have no obstructions and was not treated. The trial consisted of 9 patients treated and 10 sham. The earlier safety study portion of 10 openly treated patients was not included in the PREMiSe data since it was not randomized.

    • The UB have been a thorn in the side of CCSVI from Day one. They have gone played Zamboni like a fiddle. They are backed by big Pharm completly. 20 or 30 does not count as a study especially when they could not even replicate the methods used. Shame on them and you.

  3. Thank you Anne for providing a long list of fact finding information to accompany your article. I continue to support the treatment of CCSVI and continue to enjoy the profound benefits that I received from having this treatment in July 2010. Wow, I will be celebrating my three year “rebirth” in another two months.

    This is not a sham, a placebo or any other thing that they wish to call my renewed life. This country has saved over $40,000. annually since my treatment because I am drug free.

    We will all continue to fight the nay sayers who never take the time to interview or speak with any of us who can assure them that this procedure does work!

    • Jude, if any one would take the time to talk and hear us, this treatment would be getting underway now instead of the constant lip service we get.

      • Come on Gerald – Have a heart! MS neuros have to fight it with lip
        service or they will lose their million and multimillion dollar
        incomes and, Heaven forbid, end up, like so many of us who are well
        educated and had good jobs – living in subsidized housing and,
        depending on how far our MS has progressed, dependent on someone else
        to do everything from driving us to appointments to wiping our butts.
        And it’s all paid for by the taxpayer aka some not rich working
        stiff. The really rich have all those loopholes in the tax system to
        fall back on and use. And YOU want to take this away from them?? I
        can see my former MS neuro now, losing what little hair he has left,
        losing 100 pounds or so and how would his spoiled rotten kid fair in
        public school?? Oh my! What a cruel thing to contemplate!

        This
        fight has absolutely nothing to do with health or safety or viable
        treatment. It definitely has nothing to do with cause which has never
        seriously been looked into. It has everything to do with money and
        greed. Phoney drugs preventing unpredictable relapses at $40,000 per
        year per patient with some doctors being the drug pushers. Way back
        in the 60s when Medicare was voted in, I do not think we ever
        considered possible this ponzi scheme the pharmaceuticals are
        running. And it is a ponzi scheme – those at the top make big
        promises that those of us at the bottom buy. Those at the top make
        money (check out the financial pages sometime) and those at the
        bottom buy useless paper – or in this case- useless drugs and end
        up scammed – or for Msers, we often end up dead.. Perhaps we need
        to take the payment of drugs out of the Medicare scheme and the
        various insurance schemes. Bet you those $40.000 drugs would go the
        way of the dinosaur as no one could afford them.

        Oh! I left out an important phase. How many REAL Msers are out
        there? Are there in fact any REAL Msers? These doctors who claim to
        know it all never offer to test us for other things with the same
        symptoms like Lyme or Cpn. Of late, and due indirectly to the
        wake-up call from Dr. Zamboni, some of us have paid for Lyme tests
        and Cpn tests ourselves and, Can you believe it, THAT is what we
        really have.

        Gerald, Is there room on board that ‘ship with no heart for
        neuros’ for another? I want to get on board too.

        • You can get subsidized Housing? Lucky you. I pay full rent and on good days I buy food, if I’m lucky. And after paying taxes all year, I pay more. Like a lot of us, i had a good jpob and fairly good education. The job is gone and what I learned is now a waste. In effect, my life, like a lot of ours is wasted as we waste away waiting for the government to do something. Or worse, the “home”. Oh, sorry, the feds have silenced our scientists except the ones who “toe the line”, like Dr. Freedman.
          Our scientists can’t even look into the root cause of MS, whether it’s CCSVI, Lyme or Cpn.

  4. Thanks again Anne Kingston for reporting a solid story above, you have restored my faith again in reporting by writing stories with real facts and information on issues and subjects. It definitely shows when a reporter does do a thorough research job on their material before publishing it, an excellent example of professional journalism!

    • My CCSVI treatment was just over 6 years ago (in Katowice). I had a Stent put in my left IJV. Soon after my balance, autonomic function and fatigue problems improved greatly. My urologist took me off pills. My walking improved greatly (because of better balance). My fatigue just about went away. Other symptoms, such as my left side weakness, did not change, and these have continued to deteriorate.

      The right IJV ballooning (no stent) seemed to collapse right back, as did the ballooning of the azygous vein. We found this out when I went for a second treatment in California: my valves in both sites were missing, replaced by simple thickening of the veins. Ballooning of these veins resulted in no improvement, leading me to believe the veins collapsed again soon after the balloons were retracted.

      Besides some stories of “miraculous” recoveries, the most believable personal stories I’ve heard are of people who had improvements in the same symptoms that I saw. People who did not have these symptoms saw little improvement beyond what could be ascribed to a placebo effect.

      So did CCSVI treatment work for me? Undoubtedly. My autonomic function improvements remain to this day. With the new brain lesions and shrinkage of my cerebellum, my balance is getting as bad as it was 6 years ago (though that’s complicated by a left leg that is almost useless). My fatigue is still much better than it was. So, while I had guessed I would be in a wheelchair by 2011 before I’d had my treatment, I remain wheelchair-free. CCSVI treatment greatly improved my quality of life for more than six years. Yes, for me it was worth it.

  5. Thank you Ann. Well written and puts to shame the article by Colby Cosh. Thanks for the excellent links and references. This article is much more suited for the old McLeans Magazine I know.

  6. Since my CCSVI procedure in 2010 I improved enough that I am on the Alberta Board of the MS Society of Canada and represent them on the Alberta Disability Forum, 2 things that I would never have been able to do before CCSVI came into our lives as I was only awake 6-8 hours a day, now I only sleep 6-8 hours a day, something no MS Specialist did for me.
    I am not back to the way I was before, but I am no longer going downhill.

    • Same here…I did not get back to quite 100% either, but I am so grateful and so much better now after having CCSVI treatment almost 2.5 years ago… I can do things now I couldn’t do before, no medications since my treatment and I only keep improving …makes me think that someone’s on the right track medically with this!

    • doing sorry for mis spellings

  7. glad to see the word misdiagnosis used and lyme disease mentioned. a brilliant well researched intelligent article. thank you anne

  8. In the end, it doesn’t matter if CCSVI is related to MS (which, by the way, is not classified as a disease), because it is all about proper blood flow. Why is there so much controversy about letting people have venoplasty so that their brains don’t drown in their own blood?

    • They wouldn’t allow that to happen with a stroke patient would they Leslie? I agree with you 100%.

  9. Thank you Anne Kingston for telling it like it is.

  10. typo in article: “took the usual step of reporting its negative results on YouTube” – should be “unusual.”

  11. Clearly there is a strong lobby against this treatment.

    • Science?

      • Conflicts of interest!

  12. Thank-you for setting the record straight, Ms. Kingston. Nice to see great research & fact-checking bringing credibility back to Maclean’s on this important medical issue.

  13. Wonderful article, thank you very much Anne Kingston! Greetings from Finland – world is watching :)

  14. Thank God for Anne Kingston and her amazing ability to tell the truth!!! My son had treatment for CCSVI, even though he also has MS. His CHRONIC PAIN STOPPED!!! After watching him cry in pain, eventhough he had prescription narcotics and other medications to use that did not always work, seeing him in NO PAIN has been a miracle. Shame on Canada for not allowing treatment to a human being just because a ton of ‘studies’ have not been completed. The PROOF is in plain sight, should one want to see it!!! For almost 3 years now my son has not seen his pain specialist at the Pain Clinic at St. Paul’s Hospital in Vancouver BC Canada, he doesn’t need her any more, he misses her as she is a wonderful doctor. I have HOPE, because of good doctors and GREAT JOURNALISTS!!!

  15. I have [had] autoimmune ear disease. I stumbled on the CCSVI treatment and all of my symptoms of AIED made sense when I thought of them as a blood plumbing problem. I got the treatment and had a dramatic improvement in many of my debilitating symptoms immediately. Over time, my hearing is improving as the iron gradually leaves the tissue around my ears. My otoneurologist says I am the first person he’s ever seen reverse AIED. Everyone else ends up with cochlear implants. My vastly improved hearing tests are objective proof of the efficacy of this treatment for AIED.

    • I’m very happy for you! I am also curious if you live in Canada and if you received treatment in Canada or were forced to go to another country?

  16. Thank you Anne for a well-rounded, unbiased article: Your research, fact-checking skills and open mind are appreciated.
    Mr. Cosh tweeted about his article that he is angry with snake-oil salesmen and we can appreciate that. We are as well. Mr. Cosh, then, should be looking at the real snake-oil salesmen: MS neurologists, the MS Society and the pharmaceutical companies that support both of them.

  17. I’m just an AMerican, but why can’t Canada say “We won’t pay for it until it’s “proven” but meantime if you insist on treatment you can pay for it and we’ll follow up and keep your records” They could say who was allowed to treat, what they could charge and strictly enforce non-advertising and no-claims for the doctors (to prevent opportunism)

    That seems like an easy way forward to end up with patient sponsored research. The situations like Lori Bachelor’s would be documented….as would any potential patients with problems.

    • Why do they pay for drugs that are proven not to work for a condition without a proven cause? Hmm.

    • Marie, I just wanted to let you know that I have been interviewed by telephone for the BC CCSVI Registry so I know that Dr. Traboulsee (who is in charge of the Registry and the pan-Canadian trials that are supposed to happen…eventually…) has been made aware of my improvements. I also know that my neurologist was requested to submit a report to the Registry (even though “officially” there was no medical confirmation done on the patients in the Registry) and he advised me that he saw “significant improvements”, many of which were confirmed by neurological testing. Part of his medical examination can be seen on my 1-year angioversary video:
      http://www.youtube.com/watch?v=9BNL42wcFLE&feature=youtu.be

      I believe the “powers that be” are choosing to IGNORE positive results even when they are medically documented.

      • Indeed Lori. Kirsty Duncan often spoke about “wilful blindness”. Seems like the most appropriate word here. ;)

  18. I would think a later ‘midlife’ onset would actually make a stronger case for CCSVI as it would be likelier for vein function to have declined.

  19. I thank you from the bottom of my heart Anne, yes I’ve been lucky enough to have two procedures both with life changing effects :-)

  20. Thank you Ann Kingston, on behalf not only of Canadians with MS but, also, on our behalf, those of us who support and care for and about those Canadians with MS. We suffer with them and, when they improve after the CCSVI intervention, we rejoice with them. We, the care givers, are also part of the equation.

    • Thank you for this comment! Many people with MS would go to just about any length to be less of a burden on their caregivers–I’m so happy that after my treatment for CCSVI, my husband doesn’t have to worry about me as much as he used to.

    • Thank you, Old tailor. MS touches the whole family. I am blessed to have a fantastic support system, myself. They were as thrilled as I was to see my improvements following treatment for my CCSVI a year and a half ago. I can do more for myself and for others now. I love to cook and having the stamina and strength to stand in the kitchen now and cook a wonderful dinner for my family is priceless. There are many obvious improvements in my case, but it’s the small accomplishments which are overlooked by many in the medical community that often mean so much.

  21. Thank you Anne for the truth.

  22. I find it curious that the deaths (11 I believe) from the first ever pill for MS (gilenya) hasn’t received this type of coverage. If these medications for MS are so great, why do they keeping coming out with more. Gilenya is reported to be 48% more effective… how ineffective were the previous drugs?

  23. Thank you Anne for stating the facts!

  24. Thank Anne for setting the record straight-FACT based article. I was worrying that Maclean’s was starting down the tabloid route. I feel you’re article is unbiased. Great job.

  25. I also would like to thank Anne Kingston for setting the record straight with FACTS, once again. I am one of the people who after hours of research and patient interviews decided to be swinddled by those “snake-oil” salesman and raised money through fundraising to pay for my own CCSVI treatment in November 2010. I’ve had MS for 16 years now and I suffered and cried like Amy has described her son doing because of the pain associated with my MS. I’m 2 and a 1/2 years post treatment and have recieved ZERO follow up from any of my Canadian healthcare team and must admit slipping backwards recently, batteling my old demonds. What’s harder than not having anything that can help? Knowing that there is something that can and not being ALLOWED to have it!!!
    I’m 36 years old and single… I recently had to sitdown and think long and hard about whether to use my inheritance from my fathers passing (from Parkinson’s Disease- important to note) on a second treatment or a down payment for my own home. Explain to me again, I live in Canada correct? Where my medical care is supposed to be as guaranteed as my neighbours to the souths right to bare arms… How come their right is getting so much more attention and discussion than mine??? I’m done being a compliant MS patient and I’m really getting sick of being labeled an “advocate” or a “placebo”. I’m a Canadian trying her best to live her life, but because I have the label of “MS” I also have to fight for proper blood flow…

    • As an MS patient too and I am also really getting sick of being labeled an “advocate” or a “placebo”. I’m just a Canadian citizen trying her best to live her life, a better quality of life, but because I have the label of “MS” I also have to fight for proper blood flow in a modern westernized civilization, did I just say western civilization?…constantly trying to prove myself to our so-called medical community, how better I feel since being treated. Why? I don’t wish MS on anyone, but frankly I really do think that some of these MS experts/neuros need to have this disease in order to GET where we’re coming from!

  26. Thank you Anne … I once again have faith in good journalism. Fact based and without bias. You have done so from the beginning and we appreciate your support and speaking out for us who are trying so hard to be heard. You’re the best!

  27. Thank you Anne Kingston for this rebuttle article to Colby Cosh.
    It seems so immoral when a person can stoop this low & write an un-researched, non-totally truthful paper against people who already have a struggle in life, just to claim his minute of fame. Shame on Colby Cosh.
    For the record, CCSVI treatments saved my wife Dianne’s life!

  28. I hope that Mr. Cosh is pleased with his intended actions and reactions of stirring up the controversy “In his latest column, my colleague Colby Cosh put on his coroner’s cap, declared CCSVI “dead,” and did exactly what columnists do: stir up controversy. ”

    It pains me to see that while people like Mr. Cosh, the numerous MS Neuro’s and the MS Society continue to intentionally derail CCSVI by publicly stating misleading facts, headlines and out and out lies to fulfill their personal self serving interests and agendas, while the people who are suffering and progressing have to fight for any chance of improved quality of life and maybe life itself. People who have been labeled with MS have been abandoned and are left to fight an unfair and powerful enemy and I personally have nothing but contempt for those who align themselves and support this political turf war. Your blatant disregard for human suffering is unforgivable.

  29. Thanks Anne. No need to say more….you know you’re appreciated and you’re right on this one.

  30. Frankly I just prefer not to have my brain drowning in my blood.

  31. As I said in response to Colby Cosh’s piece – speak to Anne Kingston, who has not only done the research but has attended meetings on CCSVI and understands the science behind it. This is not going to go away but frustration levels amongst those of us who have benefitted from the procedure for CCSVI mounts daily when journalists report on subjects they have no knowledge of and are not prepared to the homework for.
    I add my thanks to Anne for this piece that sets the record straight.

  32. I am in California for CCSVI treatment right now; there were four other people on the same plane from Vancouver with me coming down for the same reason. We were all treated today and all feel improvements already! I started crying during the procedure because the constant headache I have had for 30 years went away during the procedure! I felt a ‘rush’ in my head and the lights in the room were instantly brighter and my ability to think coherently was immediately restored. I feel better right now than I have felt in 20 years!! I have had to use a walker for the past few years, but after the procedure, I almost feel like I could go without even a cane! My neck that has been sore and stiff non-stop is now relaxed and comfortable; I sit up straight rather than slumped over like a 90 year-old! Even though I was too excited to sleep well last night, I not only did not take my usual nap today, but also I feel too energetic and alert to feel like I will sleep again tonight! CCSVI is most definitely a real condition and venoplasty is an extremely effective treatment! And it also shows no signs of dying as Colby Cosh stated – Dr. Arata says he treats 5-7 people per week. Of the 5 of us who were treated today, not one says the procedure did not help them; I have fought for the past three years to get this life-restoring and sometimes life-saving treatment made available to all Canadians who want and need it; now that I have finally experienced this miracle for myself (for there is truly no other word that can describe it), I will be fighting with threefold the effort! My friend who accompanied me, burst out in tears and said “I feel like I’ve got the old Denise back!” – she has, that and more! With journalistic integrity like yours and bull-dog stubbornness like mine, we WILL win this fight! Thank you Anne!

  33. Shouldn’t Colby be apologizing for the condescending tone of his article, not Anne?

  34. Thank You Ann Kingston. Please do an article on how drugs for M.S. can be approved with only a 35% success rate, such as for Beteseron. What happened to the other 65% of people. I know for myself, I went from RR to progressive, From 1 or 2 “attacks” a year to progressively going down hill after a year on the drug. Was that documented. How can they develop a drug if they don’t know what causes the disease. How can they approve a drug if there isn’t a solid way of telling if a treatment works or not. All their saying with these interferon drugs is that it reduces the severity and the amount of attacks. How do they how many attacks that patient might of had. I went several years with no attacks and with no drugs. Put me on the drug…down hill all the way. Thank GOD for treatment of my veins. The only thing that has helped my symptoms. So frustrating when the Dr.’s ignore the improvements Thanks again Ann, but like I said, I would love to see an article on how all these drugs get their approval and I am sure that would open up a whole new can f worms

  35. My daughter and I were both diagnosed with “MS” in 2001 and both of us have been treated for CCSVI. We are walking,taking,breathing proof that this works. I,nor my daughter are the “placebo effect”. We both have our lives back and are living to the fullest. Thank you Anne for this article.

  36. Thank you for doing your homework and for presenting the truth, Ms. Kingston.

  37. Thank
    you so very much Anne Kingston for your very fair, unbiased account of
    CCSVI treatment. And, I like Dr. Zamboni’s question at the end of your
    article. To put it simply, “just what the doctor ordered.”

  38. Nice counter-article; except, as with many biased pieces, it leaves out much information, or just gets it wrong.

    For example, why isn’t there any mention of Zamboni’s conflicts of interest, such as his patent in this CSCVI detector, or the fact that he has a big emotional stake in CCSVI. Then there’s tidbits like : ” researchers, including those at the University of Buffalo and Stanford, saw enough merit in his theory to commence their own research.” In the case of Stanford, this is a mis-characterization – one doctor starting implanting stents in MS patients, with disastrous results in some cases; or, ” a clinic in Poland began offering CCSVI treatment.” Of couse they began offering CCSVI treatment – they could charge a handsome price for the procedure.

    How about: “We’re now seeing research into venous abnormalities in other neurodegenerative disease, including Parkinson’s and Alzheimer’s,”
    Why doesn’t Zamboni question this, or admit his studies were flawed? His original research showed none of those patients with other neurological disorders had CCSVI. Now, other researchers can connect it to everything.

    • What have you got against further research? If it can help other conditions that would be great!

    • No one condons medical tourism, we all just want the options of this treatment available in our own countries under proper medical conditions and followup care.

      As far as your criticism towards Dr. Zamboni…when he published his PILOT study (please understand what PILOT study means) he asked and welcomed further research to be done by others to further the research and learn how obstructed bloodflow affects people with MS. All initial studies will have issues and mishaps. That is why many studies need to be done, hopefully with intent of ethical and proper standards. Of course Dr. Zamboni had an emotional stake, his wife has MS and what better motive is there to try and discover new treatments or understanding of a disease that for the last 60 years the current experts have not been able to understand. We want the Turf war and self serving agenda’s to stop and all the medical diciplines working together for the benefit of the people who suffer every day with this progressive, horrific disease. Dr. Zamboni welcomes the connection to other Neurological diseases and that is why Dr. Zamboni founded the International Society of Neurovascular Disease (ISNVD). It appears to me that your knowledge is limited in regards to CCSVI, Dr. Zamboni and current studies…I hope this will help you to further your quest.

  39. Perhaps they should talk to the thousands (my husband being one) who have successfully had this procedure, to get some information. Who would ever think to try that sensible route?!!!!!!!

  40. Thank you Anne Kingston for this article.

    My three-year angioversary is coming up this summer – August 2nd. I was Dx with Primary Progressive MS in 2008 and told to “Just go home and live your life.” Nary a treatment offer was made. It kind of felt like they’d washed their hands of me. I wasn’t a cash cow – the Relapse Remitting more popular type of MS.

    I left work in September 2009 due to the more difficult-to-assess cognitive symptoms and memory loss that come with MS. My fatigue made making it through a day without a nap impossible.

    Since my treatment, I have not needed an afternoon nap and am awake – like any regular person – 16 to 18 hours a day! My cognitive functions and memory have all disappeared! I HAVE RETURNED TO WORK FULL-TIME!!!

    Still going strong.

  41. I do not understand. I had CCSVI surgery in 11/2010, since this time I have taken no drugs and I have had only improvement.
    Someone tells lies.
    Have much cost this MS drugs?
    Is it only lucky chance, that this MS drugs cost so much money?
    I can give advice to all MS-patients: WANT CCSVI INTERVENTION

  42. My wife had a fabulous result in Newport beach. Brain fog, balance and bladder issues are gone with video proof of the balance being gone. And she sees and hears clearer, i did not expect anything like that! Even feeling and reflexes came back in her right foot. I can only conclude that the people doing Buffalo were incompetent or worse. Sample size? The vascular surgeon we went to has done in the region of 1500 procedures and he is not up to 90% in his success rate. He claims about 75% of his people stay improved for 2 years or more. Experience counts, as does profession. Vascular surgeons do this procedure NOT neurologists. We have a friend in the eastern states who just got the same magical result in the same place. We feel we are helping people escape from a torture chamber! By the way, the surgeon has a very different theory about why it works. Which goes to show, if you test the wrong theory, you can get a false negative even if the procedure works really well!

Sign in to comment.