Liberation therapy for MS patients still locked away

A closed-door meeting, accusations of a stacked panel. The fallout from the latest MS decision.

Beatrice de Gea/The New York Times

UPDATE: On September 13, the government of Newfoundland and Labrador kicked off its role hosting the annual meeting of the country’s provincial and territorial health ministers by announcing it will fund “observational studies” to investigate the efficacy of the “liberation” treatment that restores blood flow in the neck and chest veins of multiple sclerosis patients. Newfoundland and Labrador Health Minister Jerome Kennedy pledged $320,000—and more if required—for in-province neurologists to examine MS patients before and after they travel outside the country at their own expense for CCSVI treatment. The announcement offers a defiant response to Health Minister Leona Aglukkaq’s Sept. 1 announcement, based on the recommendations of the Canadian Institutes of Health Research, that the federal government will not fund pan-Canadian clinical trials into the treatment. It also portends a looming federal-provincial showdown on the controversial issue. In July, Saskatchewan, the province with the the highest per capita incidence of MS, announced it will fund clinical trials into the treatment.

On Aug. 26, a panel of 23 “medical specialists” and three “observers” gathered in the Ottawa offices of the Canadian Institutes of Health Research, the federal agency that distributes some $1 billion annually for health research. The eight-hour meeting yielded the unanimous decision that it would be “premature” for the federal government to fund clinical trials for a controversial multiple sclerosis treatment pioneered by Italian doctor Paolo Zamboni, formerly a vascular surgeon. Six days later, federal Health Minister Leona Aglukkaq announced that her government would accept the CIHR’s recommendation, calling it “the most prudent course of action at this time,” citing concern for patients’ safety.

Exactly what happened in the CIHR’s offices at 160 Elgin Street appears destined to stay in 160 Elgin Street. No written minutes or audio recording of the meeting are available. A spokesperson for Dan Florizone, Saskatchewan’s deputy minister of health, who was an “observer,” said Florizone is “not allowed” to speak about the meeting. (Maclean’s contacted several panel members, all of whom declined comment.)

CIHR review panels rarely summon an iota of public interest. But Zamboni’s research, which broke in Canadian media last November, has struck a chord within a patient population unfamiliar with medical hope: the vascular specialist found blockages in the veins in the necks and/or chests of 65 MS patients, a condition he dubbed “chronic cerebrospinal venous insufficiency,” or CCSVI. The notion that MS could have a vascular component is not radical; as a theory, it predates MS’s identification as a neurological condition in the late 19th century. But Zamboni was abetted by technology, able to clear blockages using a balloon angioplasty. After, he found MS symptoms abated; in a few cases, the disease’s progression halted altogether.

Already the CCSVI hypothesis has pitted neurologists, the long-time MS experts who posit that the disease is an autoimmune condition, against interventional radiologists and vascular specialists. In the middle, an estimated 55,000 to 75,000 Canadians afflicted with a degenerative disease for which there is no cure. Unwilling to wait years for the clinical trials once called for by the MS Society of Canada, hundreds of Canadians have joined the more than 2,000 MS patients travelling offshore for treatment.

Now the wait for CCSVI treatment in Canada could be much longer. “Devastating” is how Liberal MP and public health critic Kirsty Duncan describes the government’s decision, one she fears will force more patients overseas. As the vice-chair of a parliamentary subcommittee on neurological disease, Duncan has solicited testimony from CCSVI pioneers including Zamboni, Sandy McDonald, a cardio-thoracic surgeon based in Barrie, Ont., who performed six CCSVI treatments pro bono, and interventional radiologist Marian Simka, who has performed hundreds of CCSVI procedures at his clinic in Poland.

Duncan is dismayed by the lack of CCSVI expertise on the panel selected by the CIHR and the MS Society of Canada: “You want knowledgable people looking at this,” she says. CIHR president Alain Beaudet, who chaired the panel, expresses sympathy for MS patients: “I understand how devastating the disease is—how small the hopes are, and all of a sudden this new possibility for hope opens. But my role is to make public what we know of the scientific evidence.”

That evidence, to date, is scant. Zamboni himself admits his research lacks scientific rigour: his sample was small; there was no control group. Two studies in the Annals of Neurology have refuted his findings.

Beaudet says he kept the panel small: “I wanted a frank and open in-depth discussion, not one of those theatre-panel types where everyone presents and there’s no discussion.” Physicians who weren’t “bona fide clinical scientists, i.e., researchers and recognized as such,” he says, were excluded. Most on the panel were neurologists; two vascular experts made the cut, though neither specializes in the venous system beyond the brain.

The absence of hands-on CCSVI expertise was intentional, says Beaudet: “We didn’t ask people who had been extremely vocal for or against the procedure,” he says. “I didn’t want it ending up as a bullfight—that ‘I’m right, you’re wrong.’ I wanted people who could take a higher ground and in an unbiased fashion review the science and make an unbiased recommendation.”

Yet panellist Paul O’Connor, a neurologist at Toronto’s St. Michael’s Hospital, has been a vocal CCSVI critic. In February, he told the National Post that MS patients shouldn’t get tested for CCSVI: “There is not a shred of real evidence anywhere that messing around with these veins does anything to help MS patients,” he said. Beaudet, a former neuroscientist, is himself a skeptic: “We have to be open-minded in science,” he says. “But [CCSVI] makes very little sense. It doesn’t fit with the epidemiology; it doesn’t fit with the prevalence in women; it doesn’t fit with geographic representation; it doesn’t fit with the pattern of veins in the neck.”

As Duncan points out, the current model for MS research is focused almost exclusively on drug therapies, an $8-billion global industry. And that, in turn, could raise questions about conflict of interest given that several of the CIHR panellists receive research grants and honorariums from pharmaceutical companies, a common practice in medical research.

The MS Society of Canada appears to have reasserted itself through the whole process. In May, the organization called for $10 million from the feds for CCSVI research: “It is obvious that the relationship between CCSVI and MS requires further investigation,” it announced in a press release. In June, it announced it was contributing $700,000 to a $2.4-million joint two-year research initiative with the National MS Society in the U.S. to fund seven studies investigating CCSVI-MS linkage through scanning. Three of the CIHR panellists—Anthony Traboulsee, Jerry Wolinsky and Brenda Banwell—are principal investigators in these studies, which now, according to a CIHR recommendation, should form an “expert working group” that provides regular CCSVI updates to the minister of health.

Panellist Ruth Ann Marrie, the director of the MS Clinic at Winnipeg’s Health Sciences Centre, presents another enigma: Marrie co-authored “Vascular comorbidity is associated with more rapid disability progression in multiple sclerosis,” a study published in March 2010, which concluded the subject “deserves investigation.” But that paper was not among the nine studies reviewed by the panel. Nor did they cast eyes on the abstract for a paper Simka will present later this month based on 381 cases that found 97.1 per cent had venous blockages.

The CIHR decision has summoned inevitable blowback. MS patient Ted Warren immediately resigned as chairman of the MS Society’s St. John’s-Mount Pearl chapter. Christopher Alkenbrack, a former high school principal in Wolfville, N.S., wrote minister Aglukkaq a blistering letter impugning the “integrity” of the CIHR decision-making process. The 43-year-old, who was diagnosed with MS 17 years ago, had CCSVI treatment in Poland in May. Since then, he has seen continual improvement. He now hopes to return to work. “The future is full of possibility for me. That’s something most MS patients can’t say.”

If anything, the government’s decision not to fund CCSVI trials has steeled rogue resolve.

Sandy McDonald, for one, hopes to set up a treatment trial at the University of Toronto. Last week, the San Diego-based Hubbard Foundation received national institutional research board approval, or IRB, for a multi-centre registry of CCSVI testing and treatment. Neurologist David Hubbard founded the organization this year after his 27-year-old son Devin was diagnosed with MS. After receiving CCSVI treatment in the U.S., Devin’s symptoms vanished, says Hubbard.

Forty years and billions of dollars of research into MS has yielded nothing; viral and autoimmune theories of MS remain unproven: “But that’s not what neurologists are telling patients,” he says. As he sees it, there’s no way around studying CCSVI but to do the procedure. Currently, he’s investigating whether his IRB can be extended to Canada. “I’ve never been so embarrassed to be a neurologist,” he admits. “We’re supposed to be the smart ones.”




Browse

Liberation therapy for MS patients still locked away

  1. Thanks for keeping the powers that be in the spotlight. My favourite quote: "I wanted people who could take a higher ground and in an unbiased fashion review the science and make an unbiased recommendation." Um, I think he means I wanted people who would do and think in the same manner as he does! Unconscionable! The Minister of Health should get some different advisors – these ones are really leading her down a path that will probably have her out on her butt after the next election.

    • Here's a great radio spot with Ann Kington talking about the experience she had putting together the first article for Maclean's back in May…
      http://tinyurl.com/2ub6fjt

  2. It's not surprising that these discussions were veiled in secrecy, given what we're learning about the MS Society and CIHR. Shady, corrupt organizations at best which should be investigated. The MS Society is doing nothing to help it's members get better – they are openly keeping their members sick – disgraceful. Something tells me they shouldn't get too comfortable about this latest decision – we're not going away anytime soon.

    • I would love to be a "member".

      • Oops………………….Membership is closed to private individuals. Only big pharma and neurogical societies are granted membership in the NMSS of both Canada and the US. We, those suffering from this disease, can only be participants………………..with NO voice…………………….

    • i couldnt agree with your comments more. I and fellow MSers are appauled at MS Society. MS Society is already hurting for donations due to economy; its going to get worse for them due to their disinterested and dismissive approach to ccsvi – members are leaving with their money, connections & volunteer efforts in Droves. Your last sentence says it all beautifully. I hope your on FB's ccsvi in Toronto link. cheers, :]

  3. Ms. Kingston, thank you for this very enlightening article about the FARCE-of-a-meeting. That this travesty was even allowed to take place while lives are at stake, is UNCONSCIONABLE, as Wendy wrote.

  4. This peice seems to ignore an important fact about the CIHR leadership.

    Dr. Bernard Prigent also happens to be the vice-president and medical director of Pfizer Canada.

    This conflict of interest is beyond belief but it gets better. According to the Office of the Commissioner of Lobbying of Canada, the government agency that regulates lobbyists, Prigent is a registared lobbyist. His position as Pfizer lobbyist is to sway policy at the "Canadian Institute of Health Researchers (CIHR) and other Research Oriented Spending Programs as it relates to private/public research and development partnerships," and Prigent is to achieve these aims through both oral and written techniques.

    In other words, Prigent the Pfizer lobbyist is paid to lobby Prigent the CIHR official.

    • Conflict of interest much? MS society is owned by the pharmaceuticals who definitely never wamt a cure for anything.

  5. Ann Kingston accurately and passionately tells this story for us – my breath is taken away by the level of greed and self interest so brashly flouted by these so called "experts". My government does not protect me, it shames me.

  6. Just a wonderful telling of the current situation. I love that she ended on Dr. Hubbard's quote: "Forty years and billions of dollars of research into MS has yielded nothing; viral and autoimmune theories of MS remain unproven: But that's not what neurologists are telling patients,” he says. . . “I've never been so embarrassed to be a neurologist,” he admits. “We're supposed to be the smart ones.”

    • Dr. Hubbard should check his facts. There has not been billions of dollars of research in Canada that has yielded nothing. There hasn't been billions. The cdn government spends very little on MS. The MS Society has been the main source of funding for research for 60 years. They are not for profit. I bet the government will end up spending a lot more now that this ridiculous story has taken a grip on the cdn public and scammed them so easily into believing a theory and turning it into a miracle. What a goose egg this will be on all the reporters and posturing politiicians when it's proven ineffective.

      • Dr. Hubbard is making a global statement . He is not saying the CDN government spends billions, he is saying that there have been billions spent on MS research so far on a global basis, yet we do not know the cause, and we do not have anything close to a cure.

        The major source of MS research funding is from the pharma industry, due to the huge potential profits from MS drugs. The MS society should focus on funding studies of things which do not generate such windfall profits: low cost drugs and treatment options,

  7. The only thing I would quibble with is the statement that Zamboni's theory has been refuted in two peer reviewed journals. I think it has been supported unintentionally by those same badly done studies.

  8. HEADLINE: Liberation therapy for MS patients still locked away

    STORY: Liberation therapy for MS patients not yet ready for prime time, although many with vested interests accuse others of vested interests.

  9. So you dont include individuals who know about ccsvi yet you include individuals who vehemently do not want it and have the audacity to suggest what you did was to STOP in fighting. Well what you have done is provided proponents of ccsvi treatment in Canada a means to rebuke the Committee and Minister. Fairness, not afforded one bit. You can rest assured this MP will need more help to get re-elected given her stance as Minister of Health. Minister of "stupidity" more like it for not realizing the nay-sayers overloaded the system.

  10. The fact is that many with MS, myself included, have tested positive for CCSVI and are actively seeking treatment to improve our vascular health.
    Another fact is while the Government and the MS Society debate CCSVI and it's role in MS with regard to "patient safety" MS patients are being denied treatment here in Canada and are dying.

    • Stop all the hype Dawn!!!! People are dying everywhere every day. People with MS may die from complications of the disease, but not directly from MS. My aunt lived with MS for 50 years from the time she was diagnosed at the age of 80 years old. That's a pretty normal age to die. Some people have the disease worse than others, different types, etc. Go pay for your snakeoil treatment at a private clinic in Mumbai where they allow anyone to pay for anything they want in medical tourism. Here in this country I want it to be scientifically proven and passed through an ethics committee before they start spending my money doing this procedure. I want to know that science not politics and raving people keep me safe and make my medical system work for me.

      • Are you saying she lived to 130??? Little bit incredulous! The "snake oil" comment shows you either don't have MS or you are keeping your head buried in the sand too!

  11. Well researched, Ms. Kingston seems to be a lone voice in Canadian journalism exposing the CIHR's panal of "experts" and the MS Society. The two studies out of Sweden and Germany only show us how not to do research. They were badly done and put out as fast as humanly possible.

    • Actually, there was an article by Colleen Toms about liberation therapy in the Thursday, August 12/10 edition of the Brant News community paper (www.brantnews.com). The story was about a patient from Brant county, Angela Lavallee, who received the treatment in Poland.

  12. I have never seen such blatant obfuscation in the face of published facts. This is very obviously a delaying tactic perpetuated by almighty pharmaceutical companies who are seeing their profits about to become extinct. They can't even hide it well anymore. The power of the internet and the democracy of thought it engenders is chipping away at the oligarchy of moneyed interests. You had a good run pharma; now say goodbye.

  13. Finally a truthful ,insiteful decloration of the truth.The only lack of information in it was the studies supposingly disproving Zamboni , actualy proved his work.I still wouldn;t see them as believeable because they were smaller than Zamboni's and thier criteria was questionable at best.I know the truth will win out in the end , especally with people like Anne Kingstone guarding it as she has , however the question i have is will these people have to answer for the deaths and disabilities they have caused by ignoring the truth and focusing on thier own egos and wallets.Evil should not be ignored or rewarded.I am sure of what i say, as i was liberated January 29th 2010 and have the life back i should have never lost.I was one of the 6 liberated by Dr.McDonalds efforts.

  14. Read this and comment, please. I have a daughter, age 30, with MS on Tysabri, but both of us are interested in the CCSVI potential. We are in US, but live close to Canada and view your medical options with interest. I am sorry that the health panel has zapped, for the time being, the further exploration of Liberation Therapy. How short-sighted of them. I trust, with the active and vociferous suporters of the therapy and further research, that the government will eventually listen to you all. Meanwhile, I am hoping the US research will help some.

    • Hi Deb,
      My life with MS has improved drastically since I started treating it like a vein drainage problem. I no longer deal with fatigue. I still hope for the procedure. My numb arm is now only half numb. I am off my pain medication -Lyrica. Yet I still deal with shoulder pain at night. (keeping the shoulder warm does help)
      1. Daily low dose ASA
      2. Elevation therapy for sleeping and resting. (A sofa cushion under my mattress at my head. I now do a wedgee.)
      3. Visualization and neck/shoulder massage for drainage. Especially every night. After years of frozen fingers, they actually feel hot.
      4. Drink lots of water. Thins blood a bit.
      5. Eat the g's. Ginger, grapefruit, and ginko etc. Known blood thinners.
      6. Avoid iron at all costs. in food and supplements. Actually I was anemic so this was scary, but now that I am off gluten, saturated fats and iron, I am not. Get that! I now use ginger to help me feel warm in cold weather.
      7. Get good massage/physio help on a regular basis.

      PS the drug Tysabri has been responsible for a number of deaths. You might consider changing it.

      • My daughter is aware of the risks and feels reassured with the Touch Program that is in place for Tysabri users. Her symptoms have been a bay during the many months she has been on Tysabri. When other medical options are approved that are equally as good, I'm sure she will consider their merits and leave Tysabri behind. She has confidence in her neurologist as well and by comparing her MRI, saw that some of the plaque in her brain MRIs reduced and disappeared over time. You're right, though, it is a risk she is taking with medical oversight. We in the USA along with you Canadians are all anxious to learn more from CCSVI research, if only it would be approved. Thanks for your helpful reply.

  15. Rather than speaking in negative terms about CCSVI like our federal government and many health care providers, Saskatchewan and Newfoundland have taken positive steps that could lead to proving the validity of the treatment. In fact, the MS Society of Canada has recommended the following plan that the Canadian government ignored:

    "Recommendation: That the Government of Canada commits $10 million to the budget of the Canadian Institutes of Health Research and earmarks it for research into chronic cerebro-spinal venous insufficiency (CCSVI) and its relation to MS."

    I guess Ms. Aglukkaq finds it easier to be a naysayer than take proactive steps to help MS sufferers and their families.

    As an aside, one has to wonder how much big pharma has invested in drug research into solving the MS problem that could be in jeopardy should CCSVI prove to be a low-cost, drug-free solution.

    http://viableopposition.blogspot.com/

  16. Having been to Poland with my son who is inflicted with this medical problem and have seen for myself the improvement in, not only him, but other people who were there for the procedure. I met them before and after this procefure, I know that the procedures done by Dr. Simca(???spelling) and his staff made a huge improvement in their medical condition.

    I think the whole panel who were written up in MacLeans have a vested interest in money from some venue rather than helping honest, concerned and inflicted Canadians with their medical dilemma. It is a sad state of affairs. Where were the people who should have been on the panel? My son was in Poland and benefitted as did others. Surely they should have invited some of the MS and CCSI patients who have had some experience with this to have taken part in this panel. Why did they bother at all????????

    At the time of his procedure there were people there from Canada, Switzerland, Scotland, Italy, and many others. I am the mother of a Vancouver participant in the procedure.

  17. We, in the MS community, are tired of holding our breath.
    Since having the procedure done abroad this summer, the MS which has held me hostage for 20 years, is now on the run.
    I have more energy, sensativity, balance and I can carry on a converation for more than ten minutes without falling asleep.
    Let's move this treatment forward so that we can put an end to this plight!

  18. Health Canada has no interest in seeing people actually get well. Neither have the folks whose conflict of interest is so blatantly obvious.

    People who are interested should check out the bio-warfare work done by Professor Don Scott here http://www.whale.to/v/scott.html While I don't think that CCSVI is the cause of MS, there seems little doubt the the CCSVI may be the result of the initial pathogen, in this case a mycoplasma, which according to Professor Scott, was actively studied and tested here in Canada at Brock University. Then it was released for live testing on the human population in this country and the US.

    Our government does not serve us. They don't protect "we the people". They interfere with natural health products, many that DO work, in favor of promoting pharmaceuticals which cure nothing, only cover up the symptoms. This article is just more of the same. Kudos to you Anne for having the guts to report the truth.

    To the rest of the sheople, it's time to wake up and smell the coffee.

  19. Finally an article that tells it like it is. Neurologists can't be anywhere near the CCSVI file without ADULT supervision.
    Mr Hubbard is an exception. It is obvious Neurologists are suffering from CCSVI in reverse. No blood flow to the brain.
    I wondered why they had all the nasty statements about Zamboni. After all he has a huge conflict of interest and that would be the love of a woman. Kind of like the Neurologist's conflict love of drugs and money. The biggest love though is the ego.
    The supposedly smartest of the smart are going to look pretty dumb after a few more hundred Canadians have to go away to get treated. Dr. Hubbard also had a huge conflict and that is the love of his son. When the MS folks go looking for the Neurologists that wouldn't give a referral to get tested, scoofed at them for looking for another way other than the drugs it isn't going to be pretty. These clowns that were on this expert panel should be ashamed of themselves. Huge grants for
    millions from the drug companies and huge conflict's of interest. I wonder if they had any lights on in the room when they met. Thanks to the writer for being fair. Thanks to Premier Wall for standing up for the folks with M.S. who can't stand up for themselves.

  20. What do we do for my sister who has stage 4 ovarian cancer? Nothing we can do. We support the families and we say how sorry we are for them. People die everyday from disease -it's no one's fault. Stop blaming people and accept that it's part of life. We can't make irrational decisions with health dollars because people are going to die. They will anyway. Whatever discoveries we make today won't help people who died yesterday, but they will help people in the future- it's the luck of timing.
    Why should we spend money on unproven treatment for MS when cancer is terminal? Why not spend it on half-baked theories that come out of the woodwork every few months.

    This is a senseless argument- wait for the science to catch up and stop blaming everyone.

    • I'm saddened that your sister has stage 4 ovarian cancer. Imagine if a simple angioplasty had a 66% chance of improving her condition and a 90% chance of stopping the progression. Imagine if the only real downside was having to perform the procedure again in a few months. Now imagine that she was denied this treatment option because it was validated. This is the analogy to the situation faced by the parents of the boy in Linda's note above.

      So in this case, there is something we can do, William. In terminal cases, the procedure should be available on a compassionate basis while Zamboni's research is being validated.

      All pwMS are asking for is the same compassionate treatment others would get in similar situations. Instead, the medical college has put a halt of a procedure available elsewhere with literally astounding success. Their own charity is a major source of delay. The frustration and anger is entirely justified.

  21. SOME damned Neuros can't see the Forest for the trees!

  22. Yes, they do. Check out the note from the Rebif page:

    Brought to you by EMD Serono, Inc. and Pfizer Inc, the co-marketers of Rebif® (interferon beta-1a) in the US.

  23. Now, you have read all the posts ahead of mine. You have read of those liberated and how this has changed theirs lives. Given back their lives.__Now, please, think about this.. Every day in Canada 1 person, 1 life is lost to the complications of MS.. A mother, a father, your son or daughter, your friend.. someone you love has died. __Could this have saved this life? We don't know.__Should we try? Yes.____Maclean's Magazine.. thank you__

  24. From an individual who actually has MS and traveled aboard two months ago to have the liberation treatment. It frustrates me to deal with our pharmaceutical driven medical system. From vascular surgeons directing us to neurologist that are downplaying the positive effects; that myself and many other Canadians are experiencing after a simple angioplasty. With such a simple procedure that is done daily all over the country for different reasons and has greatly improved our quality of life when addressing MS patients. It is a shame that our country is in such a delayed state as compared to other countries around the globe due to political and financial gain.
    The liberation treatment did not cure me but living strong…

  25. What's really sad is the funding for the clinical trails are not the issue. It's lack of approval for the permits to conduct the clinical trials is the issue. The same clinical trails that are being performed all over the world.

  26. You obviously are not a fact checker! You are for sure a nay sayer!!!

  27. Under what other circumstances would a canadian have to live with a blocked artery, affecting their bloodflow. They unblock arteries all the time, but if you have a diagnosis of MS they won't do the procedure????? This makes no sense to me. We all seem to know someone who has had the procedure and had their symptoms ease, subside or disappear, something years of medication regimes did not. how can this be bad??????

  28. Look at it this way, what do we have to lose. I have had MS for 19 years, and I am willing to try anything reasonable.

  29. How would all of these people feel if they personally had to take care of their own precious child..and watch as he or she was slowly deteriorating and dying mentally and physically right in front of their eyes? A child crying for a glimmer of hope to live a life just like people they see around them…It seems that some of these people are so cold hearted it would not bother them. They may even let their own child die if their payoff was good enough, I hope that they are all enjoying their powerful jobs and I am sure that are not having a problem spending their blood money.

  30. I was diagnosed with Multiple Sclerosis back in 1983. I can hardly walk now and it seems my condition worsens every day. When I first heard about the Liberation procedure and its results from a friend, I thought United States would be the first to conduct the trials. I could never imagine the corruption involved. I ended up applying for this simple procedure in Poland and waiting.. The other options were to get it done in India. After researching the internet extensively, I came across http://www.ccsviclinic.ca/ . They are screening for CCSVI in Fargo, ND and have very affordable packages for the Liberation procedure in India. I called (404)461-9560 and spoke to their nurse administrator Lisa whose priceless support made me realize that we are not alone in the fight against MS. They are screening within the US and Canada, their medical travel package includes flight arrangements and help with the visas, world class accommodation and meals within their hospitals, the liberation procedure, a stent if needed, medications necessary, a site-seeing tour, Pre-and post-procedure supervision, Full medical file including copies of charts, screens, CDs of Venograms, blood work, EKGs, etc. Post Procedure Screenings, follow-up and consultation with surgeons for the next 6 months and so many other provisions Lisa told me about, I can't recall however you might be able to find out more on their site.. http://ccsviclinic.ca/?page_id=564 . They are providing all of this at just $13000 as compared to the other companies that charge something like $20000 just for the procedure. You may also contact Lisa by emailing her at apply@ccsviclinic.ca or calling her on (404)461-9560. I am getting liberated mid- November and I am so very thankful to everyone at CCSVI Clinic for making this happen!

  31. I read this morning that a man died from the MS vein procedure. This does not deter me in the least. I do not mean to be rude, but he flew to Costa Rica to get this done. You think for such a complicated procedure, you would go somewhere where the medical system is similar to ours. Plus he spent 30,000 bucks. Who has that much money lying around.

  32. MUTIPLE SCLEROSIS LIBERATION THERAPY WITHOUT SURGERY
    On October 25, 2010 I consulted with the former professor of Dr. Paolo Zamboni* in Paris, to inquire about the possibility that my multiple sclerosis is caused by cerebrospinal venous insufficiency (CCSVI) as postulated by Dr. Zamboni. He examined the status of my vascular condition in the neck using the “Doppler” ultrasound device to conclude that there was no apparent abnormality. He informed me that a further examination using a dye injection would be necessary to complete the study and very kindly referred me to a medical colleague*. He added that should the veins in question be found abnormal, they could be treated during the same visit. 1

  33. He then explained that he had investigated Dr. Zamboni's hypothesis on MS that a narrowing of the veins leading towards the heart forced blood back into the brain and spinal cord, thereby damaging the tissue and causing paralysis. He indicated that since not all people exhibiting this “stenose” developed MS, it seemed to put in doubt Dr. Zamboni's hypothesis. (And since I have MS and apparently do NOT exhibit this abnormality, perhaps the hypothesis seems even more in doubt.) It was my impression that he no longer intended to study this theory. However, as a patient who has lived a good 30 years (if not more) with MS I am convinced that the theory that veinous blood backs up into the brain/spinal cord to trigger MS symptoms is fundamentally sound. It needs to be expanded and refined. 2

  34. Let's look at another issue. MS patients typically have hydronephrosis (myself included) – the distention of the kidney with urine due to obstruction of urine outflow. Isn't this essentially the same phenomenon, the urine backing up towards the kidney just as the blood backs up into the brain? I don't have a physical block such as a kidney stone, nor apparently defective veins. ApparentIy I do have a general circulatory problem. The concept of “circulation” needs to include the Chinese notion of “chi” or energy.
    What can impede circulation? Stress or tension are known to trigger MS “attacks”(poussées). There are multiple origins of stress – emotional stress, illness (a resurgence of a latent virus such as childhood mononucleosis –as in my case –is often cited as a triggering factor), allergic reaction (wheat is often considered a critical allergen to be avoided), chemical exposure, X rays (almost certain to trigger an attack in my case.) 3

  35. Let's add low blood pressure (mine is 90 over 60), general low vitality or “chi” (maybe owing to a latent virus) and conditions would seem ideal for blood to stagnate and even get pushed back up into the brain as the veins tense up. Dr. Zamboni apparently believes that it is the iron in the veinous blood which damages the myelin sheath. MS may not be an auto-immune disease at all. The well documented immune system activity may simply be the body's marshalling of its immune resources to heal the injured tissue.
    What works for me to treat MS (and hydronephrosis as well)? Any therapy that can relieve the stress and get the blood or “chi” energy flowing as soon as possible – acupuncture, acupression, shiatsu, swimming, a brisk walk (with a cane), a competent homeopathic remedy. Even a good massage may do the trick. (see postscript) An acupuncture treatment will halt an MS attack. (In one instance an acute symptom disappeared after only an hour's treatment to never re-appear. Doesn't this imply that blood backing up into the brain had reversed course to flow normally again?) 4

  36. ?) On 2 recent occasions I treated myself with simple TENS electrical stimulation pads on 4 acupressure points – 2 per leg – (Spleen 6 (3 Yin meeting) which is found 4 fingers up from the inner ankle bone and Gall Bladder 34 just below the outer knee bone.) and by the next day I had recovered from an incipient MS attack. Normally I would be have been laid up for weeks thereafter. I am appalled to realize that all the nerve damage sustained over the past 20 years was entirely unnecessary because I had the means to easily treat myself. But I lacked confidence and knowledge and, delaying treatment until I could find a therapist, often sustained considerable nerve damage over a period of weeks. (It might be interesting to see the effect of acupuncture on the veins/blood flow using the Doppler ultrasound device, though one difficulty with this is that the exam itself could distort the finding. A more reliable study would examen the status of hydronephrosis before and after a good acupuncture treatment – or a good swim – immediately after the bladder has emptied. I'm convinced the backed up urine will have been released, which could have implications for cranial blood flow in MS. 5

  37. In my opinion if a patient exhibits a physical anomaly –CCSVI or a kidney stone for example – it should be treated, keeping in mind risks/benefits. In the case of brain damage symptoms are likely to persist which will take time to heal. I have found nutritional therapies essential. In addition one needs to consider circulatory/energy therapies such as acupuncture, and patients should be encouraged to exercise. Swimming is the best treatment for me to empty the urinary tract system as well as “oxygenate” the brain. I know how to treat myself now which is a great relief although at age 62 my general vitality appears to be on the decline. Well, better late than never.
    In conclusion, I believe the condition known as MS should be treated as a circulatory deficiency disease; the definition of circulation needs to be enlarged

  38. After writing a version of this letter to the Doctor who examined me in Paris I suffered the first signs of another MS “attack”. As stress mounted over several weeks coupled with acute insomnia, my skin began to go numb, the muscles in my good left leg cramped, the leg lost coordination. Even though I used my TENS treatment on ‘ acupressure points, I continued to go downhill. In my experience the best way to stop this dynamic is to stay in bed until I can begin to doze off naturally. I took a sleeping pill Friday night, Saturday I stayed in bed all day, my body burned all over. I began to sleep fitfully. Saturday night I took another sleeping pill. Sunday morning symptoms persisted. I imagined a storm raging in my body, the blood spilling over into the brain like a river bursting its banks to flood unprotected territory. I told my husband I was having an “attack”; could he please massage my upper back and neck to relax the veins, open the blood flow and bring the blood down towards the heart. I visualized all this while he worked. It was a simple, unexpert massage which lasted no more than 10 minutes (if that). And it worked. The “floodwaters” receded, the storm subsided; I had recovered.

  39. . I was fragile all day but by Monday could go out and resume my daily walks. Monday I asked my physical therapist to adjust my back. The muscle contractions had pulled the vertebrae out of place. I told him that often MS attacks begin with a flu, and isn't it true that flus contract the muscles which could well contract the veins and reverse the veinous blood flow.? He agreed with this analysis as he adjusted my lower back and cervicals which were indeed out of place.
    What have I learned for myself? I continue with my TENS treatment. I can't drink coffee (that helped trigger off the stress -insomnia -anxiety cycle.) Overcoming my general resistance to drugs,if I need a valium or tranquilizer to sleep, I take it rather than lie awake with mounting anxiety . (I do wonder if a tranquilizer might slow the blood flow even more, which could cancel the positive anti-anxiety effect.) I do whatever is needed to reduce stress. And if I do get stressed, I ask for a short massage in the upper back and neck and visualize bringing the blood down. It is so incredibly easy, so basic, I wonder if all these years of nerve damage could have been avoided.

  40. . I will continue with once a month acupuncture treatments. I use homeopathy to avoid viral illnesses. I vegetable “juice” twice a week in the hope I can heal brain damage. I continue to take nutritional supplements recommended by my San Francisco naturopath who has treated me since 1984. Above all, if symptoms begin, I DON'T WAIT to find a therapist before asking for a brief massage coupled with visualization. I will seek a therapist for a more profound treatment as soon as possible, but I never should have waited while the “storm” raged, spilling blood into the brain where it doesn't belong. It will be up to Medical research to figure out how to treat this circulatory problem, but I need to treat myself now with the means at my disposal. We can all thank Dr. Zamboni for his original insight which has certainly liberated me, even without any surgical intervention. Probably with age my batteries are running down which accounts for persistent minor symptoms as the blood circulation slows down. But knowledge is liberating and I know what I must do to take care of myself. I hope others with MS will reflect on how this analysis corresponds to their own experience.

Sign in to comment.