The Rorschach test of CCSVI research

Experts and journalists are reading whatever they want into a new study examining CCSVI in MS patients

by Anne Kingston

F. Scott Fitzgerald once famously wrote “The sign of a first-rate intelligence is the ability to hold two opposing ideas in the mind at the same time and still retain the ability to function.” That line comes to mind surveying reaction to the much buzzed-about study in the current issue of Neurology, the journal of the American Academy of Neurology, that concludes CCSVI is not a primary cause of multiple sclerosis.

The study, whose initial results were announced last year, came just as the AAN held its annual meeting in Honolulu last week. There’s a nice symmetry here. It was a year ago that Italian vascular specialist Paolo Zamboni appeared at the AAN meeting in Toronto, fresh off having rocked the medical boat with his claim that MS, long considered an autoimmune condition, had vascular roots: he theorized narrowed or blocked veins in the neck and chest of MS patients, a condition he dubbed chronic cerebrospinal venous insufficiency (CCSVI), lead to reflux of blood back to the brain. That in turn resulted in iron deposits, he posited, which caused the neural lesions that characterize MS.

After administering a balloon venoplasty to clear the blockage, many patients’ symptoms abated, he reported, sometimes dramatically; in some cases, the disease’s progression halted altogether. Since then, an estimated 12,000 MS patients have had CCSVI treatment, which is not available in Canada, many of whom have reported improvements. Still, many neurologists, the traditional MS gatekeepers, dismiss the Zamboni hypothesis as yet another in a long line of quack MS cures and chalk up any salutary treatment benefits to the “placebo effect.”

The newly published study, lead by University of Buffalo neurologist Robert Zivadinov who has worked closely with Zamboni, looked at 449 patients with Doppler ultrasound—289 people with MS, 163 healthy controls, 26 people with other neurological diseases, and 21 who had experienced a clinically isolated syndrome (or CIS), defined as one “neurological episode.” It found 56.1 per cent of MS patients and 38.1 per cent of CIS patients had CCSVI. Meanwhile, 42.3 per cent of participants who had other neurological diseases and 22.7 per cent of controls also had CCSVI. It also found that far more patients with advanced MS—some 80 percent—had CCSVI, which suggests “CCSVI may be a consequence rather than a cause of MS.”

Of course, the chicken-egg conundrum gives rise to endless speculation. For instance: If CCSVI is the result, rather than the cause of MS, then why did 22 per cent of the control group have it? The fact that the control group in the Zivadinov study included front-line relatives of MS patients raises another set of questions given genetic predisposition to the disease.

Meanwhile, the study itself has become a Rorschach test, read differently depending on bias. Barrie, Ont. vascular surgeon Sandy McDonald, an advocate of CCSVI treatment, says it answers two important questions: “One, is CCSVI associated with MS? Answer: yes. Two, is CCSVI a contributing agent in the progression of the diseases? Answer: yes.” McDonald says the relationship in the presence of CCSVI in advanced MS (in more than 80 per cent of cases), suggests the condition may contribute to the disease’s progression. Not everyone agrees. Halifax neurologist Jock Murray, a vocal critic of the CCSVI hypothesis, told the CBC it suggests CCSVI is a “normal variation” and not even an actual condition. The two polarized takes on CCSVI are nicely summed up in this video.

Media reaction called to mind another idiomatic cliché: the one about the baby and the bathwater. The Vancouver Sun’s “Study Shoots Hole in Liberation Theory for Multiple Sclerosis” and Dr. Brian Goldman’s comment on cbc.ca that “new research is casting doubt on a controversial treatment for Multiple Sclerosis” conflate the CCSVI hypothesis with CCSVI treatment, which is where Fitzgerald’s line comes in: it’s possible CCSVI might not be a primary cause of MS and still be a piece of the mysterious MS puzzle. Even Zivadinov has stepped up to point out that his study doesn’t invalidate Zamboni’s hypothesis but rather that it calls for more study.

“More study” has become a mantra, as has the call for refinement in the techniques and criteria for CCSVI diagnosis which is all over the map. One AAN study led by neurologist Katayoun Alikhani of the University of Calgary that used magnetic resonance venography (MRV) found venous abnormalities in only 20 per cent of people with MS and 20 per cent of healthy controls. “This first independent Canadian MRV study confirms neck vein abnormalities are infrequent and independent of the diagnosis of MS,” the study’s authors concluded. Yet Zivadinov himself has questioned the efficacy of MRV scanning. Robert Fox, medical director of the Cleveland Clinic’s multiple sclerosis centre, chalked up discrepancies to “wrestling with a new technique.” Even how a knob is turned can influence outcomes, he observes.

While scientists calibrate knobs and investigate causal relationships, the crucial question of whether CCSVI treatment is useful for people suffering from a devastating, degenerative condition remains unanswered. That requires actual treatment trials. The Buffalo study concluded balloon venoplasty should be restricted to “a blinded, controlled clinical trial,” a position also held by Zamboni. The MS Society of Canada, too, recommends patients seek out clinical trials, though it has yet to advocate these take place in Canada. (Currently the society is conducting seven CCSVI studies, none involving treatment, with its U.S. counterpart. Results aren’t expected until July 2012.) An MS Society spokesman refers patients to the World Health Organization’s website  or Clinicaltrials.gov for information.

Provincial governments, variously setting up post-treatment observation trials and clinical treatment trials, haven’t been deterred by the Buffalo research. The New Brunswick government stands by its promise to provide funding to help MS patients get treatment. Urgency exists, says health minister Madeleine Dubé: “While this is being researched and debated, those people still need support and we are committed to that,” she said. Alberta’s health minister, Gene Zwozdesky, says plans to study CCSVI treatment remain “a go.”

Given such movement, a remark in the editorial accompanying the Buffalo study seems almost quaint: “It behooves the clinical research community to carefully pursue CCSVI to its end; we should neither jump on the bandwagon as it passes through town, nor assiduously miss the parade.” Anyone who sees CCSVI as a circus rolling through the medical landscape hasn’t been paying attention. Other neurodegenerative diseases such as Alzheimer’s and Parkinson’s are being looked at as potential diseases of impeded cerebral blood flow. Meanwhile, most of the AAN conference devoted to MS focused on breakthroughs in new drugs, all of which are designed to alleviate MS symptoms. None treat the underlying cause, a continuing mystery.




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The Rorschach test of CCSVI research

  1. I feel badly for people with MS diagnosis who can't afford to/or have been scared away from treatment if they have CCSVI. I was tested and had blocked veins; I have the records. I had this treated and watched it on a monitor; it really happened. I am experiencing relief of my symptoms; no, it is not "placeboeffect". How much more straightforward does it get?

    • Do you feel badly for people with other diseases who can't afford experimental treatments? Do you think that provincial health insurance plans should cover all experimental treatments?

      • most of us are willing to pay $10,00 to go outside the country.. it would only cost $2,000 to do it her.. and many will gladly pay that. there is nothing wrong with wanting to pay your own way to heal yourself.

        • That's not at all what Pete Tong asked though, is it?

      • Do you realize that the Canadian health care system pays the cost of MS disease modifying medications for patients that suffer with MS at a cost of more than $25,000/YEAR/patient??? What do you think would be a better way to go for the Canadian tax payer? Most MS patients would do anything for relief…they have been rats for years for the drug companies.

        • I don't think there is any evidence to support that the procedure would lead to long term cost savings, but if you can direct me to them, I would be happy to take a look.

          Ontario does not cover treatment that is generally accepted in Ontario as experimental, for research or a survey, including clinical and drug trials and if they did, they would not be able to do it on a disease by disease, or case by case basis without being susceptible to challenges under the Charter of Rights and Freedoms.

      • venoplasty is not an experimental treatment, it has been around for a very long time. It is also a cheaper and more effective way to treat MS than the MS drugs that are out there. If they came up with something that made as much sense as CCSVI for other people with other diseases, I guarentee you the MS community of patients and there families would support it, because we understand!!
        I feel bad for people who think they understand what is really going on here, but are unforntunetly either misinformed or are uneducated on what's being happening with MS and CCSVI since Oct. of 2009. Find more info and you'll see the truth!

        • Venoplasty has never been done before on neck veins and is therefore highly experimental, not to say foolish. There is no reason to. Even complete blockage of both internal jugular veins causes no symptoms and certainly not MS. Exactly what scientific data of which I am unaware proves that "CCSVI" exists and that "liberation" has a biological effect on the CNS lesions of MS?

        • Really? Then why doesn't the Ontario government cover it since OHIP covers all medically necessary services provided by physicians as long as they are not generally accepted in Ontario as experimental, for research or a survey, including clinical and drug trials. Oh I know… it's because there is not one single physician in Canada who does not consider the procedure experimental. There may be physicians who support it but no physician will say that there is sufficient evidence that it is safe and effective.

    • Which symptoms are you feeling relief from?

      • Colin, people often report improved bladder function, for one thing.

        I am in a proper, double blind TREATMENT study. I can easilly see that I could psych myself up to walk a little further, or forgo the use of my cane for a while and say that it is due to treatment . But bladder function? . It is one of those automatic functions; a healty person has a fair degree of control, to an extent , but those of us with MS often have very little control. How you fake that or "imagine" it better I cannot comprehend.

        • If this is a true double blind study, how do you know you got the treatment and are not in the control group? I thought the whole point of double blind studies was to determine whether the results of the treatment were demonstrably more prevalent in the group that received the treatment than the group that thought it got the treatment, but really didn't, i.e. the control group?

        • I quote from the Wikipedia article on micturition:
          http://en.wikipedia.org/wiki/Urination

          "Urination, also known as micturition, voiding, peeing, weeing, pissing, and more rarely, emiction, is the ejection of urine from the urinary bladder through the urethra to the outside of the body. In healthy humans the process of urination is under voluntary control. In infants, elderly individuals and those with neurological injury, urination may occur as an involuntary reflex."

          Without peripheral nerve or spinal cord damage there should still be some voluntary control over micturition. Except for the unlikely event that you had totally reflex bladder control it would be hard to prove that "liberation" had really improved CNS function.

          • Oh hi Colin…slow day today? Wikipedia? Really?

    • Being a person who got the 13th treatment in the US and then had it again looked at after about 20 months, I can say not very straightforward at all. At my last venogram, it showed that I'm open and flowing in both jugs and my azygous. Doppler showed it and then the gold standard venogram showed it. The fact that it works for some and not others makes it not straightforward. How could they just take it as gospel if it's not working for, even close to really, everyone? I've obviously a proponent, but we can't say the science is over.

      I got some relief initally but am progressing again. And no I have not restenosed, I had it checked at about 9 months by Dr. Haacke up at Wayne State and then at Albany last week by Dr. Siskin. So all I'm saying is we have to look at everyone. It is wonderful and enviable that you are experiencing symptoms, but not all are so I think the research has to go on.

      • As you said it works for some not others…I think part of the issue is "MS" is more than one disease process. In fact, a Dr Rice, MS specialist told me he thought it was about 40 different conditions. Why would veinous work for everyone….the drugs don't. Maybe the research needs to rid of the idea that "MS" is not one cause or cure – for too long any neurological look-a-like as been lumped into MS.

  2. I feel badly for people with MS diagnosis who can't afford to/or have been scared away from treatment if they have CCSVI. I was tested and had blocked veins; I have the records. I had this treated and watched it on a monitor; it really happened. I am experiencing relief of my symptoms; no, it is not "placeboeffect". How much more straightforward does it get?

  3. "The fact that the control group in the Zivadinov study included front-line relatives of MS patients raises another set of questions given genetic predisposition to the disease."

    If one of these "healthy controls" with CCSVI gets MS … it bring this picture into better focus

    • I'm quite certain that one of the controls with CCSVI was diagnosed with MS later on. I wish I could find an exact quote. If anyone could find it please post.

    • Zivadinov's paper says that some of the control subjects could be genetically related to each other. It says nothing about them being related to the MS patients.

    • The fact that the control group in the Zivadinov study included front-line relatives of MS patients …

      … means they were a pathetic choice for a control group.

      UPDATE: But now I see Colin Rose casts doubt on the "front-line relatives of MS patients" factoid. Still, if the some controls were related to one other, they still aren't that great, especially as independent controls.

  4. "The fact that the control group in the Zivadinov study included front-line relatives of MS patients raises another set of questions given genetic predisposition to the disease."

    If one of these "healthy controls" with CCSVI gets MS … it bring this picture into better focus

  5. It is unfortunate that the actual people suffering from this disease are being used as pawns in this turf war and the political agenda's of the MS Neuro's who in turn control the actions or inaction of the MS Society. I truly hope that sooner than later everyone will focus on the agenda of helping people living with MS in Canada. Let the informed patient and their informed doctor of choice make the best decision for their own choice of treatment. Let the Vascular experts treat the vascular condition under a controlled study so all concerned can learn the pros and cons as they go. Let the Neuro's treat what is left when CCSVI is removed from the equation. The government officials in charge of our health care system need to be open to listen to both sides.The MS Society needs a complete overhaul so they can be be effective for helping all people living with MS. They need to provide unbiased information not only on drug treatments, but CCSVI, diet, physio and vitamins. It seems to me that when a significant percentage of MS'er are fighting against their own MS Society, there needs to be a formal investigation and reorganization if this society is to survive and gain back any credibility. People suffering just want to feel better, they should not be the ones having to fight for their lives and a little dignity for proper health care in Canada. Common sense and compassion needs to be brought back into this equation.

    • This looks familiar Carol. Same attacks on the same organizations and groups of people. No matter what evidence is provided, you will never change your tune. MS orgs could come out tomorrow and say that CCSVI was the cure and you'd still have a beef with them. Neurologists who have dedicated their lives to helping MSers could start treating people who have had CCSVI treatment and you'd still have a beef with them.

  6. It is unfortunate that the actual people suffering from this disease are being used as pawns in this turf war and the political agenda's of the MS Neuro's who in turn control the actions or inaction of the MS Society. I truly hope that sooner than later everyone will focus on the agenda of helping people living with MS in Canada. Let the informed patient and their informed doctor of choice make the best decision for their own choice of treatment. Let the Vascular experts treat the vascular condition under a controlled study so all concerned can learn the pros and cons as they go. Let the Neuro's treat what is left when CCSVI is removed from the equation. The government officials in charge of our health care system need to be open to listen to both sides.The MS Society needs a complete overhaul so they can be be effective for helping all people living with MS. They need to provide unbiased information not only on drug treatments, but CCSVI, diet, physio and vitamins. It seems to me that when a significant percentage of MS'er are fighting against their own MS Society, there needs to be a formal investigation and reorganization if this society is to survive and gain back any credibility. People suffering just want to feel better, they should not be the ones having to fight for their lives and a little dignity for proper health care in Canada. Common sense and compassion needs to be brought back into this equation.

  7. Do you feel badly for people with other diseases who can't afford experimental treatments? Do you think that provincial health insurance plans should cover all experimental treatments?

  8. most of us are willing to pay $10,00 to go outside the country.. it would only cost $2,000 to do it her.. and many will gladly pay that. there is nothing wrong with wanting to pay your own way to heal yourself.

  9. Which symptoms are you feeling relief from?

  10. Not you again. Almost as much as I will enjoy seeing this treatment blossom into an ultimate cure, I will enjoy watching you eat crow when your worthless drivel is fed back to you.

  11. Not you again. Almost as much as I will enjoy seeing this treatment blossom into an ultimate cure, I will enjoy watching you eat crow when your worthless drivel is fed back to you.

  12. Colin, people often report improved bladder function, for one thing.

    I am in a proper, double blind TREATMENT study. I can easilly see that I could psych myself up to walk a little further, or forgo the use of my cane for a while and say that it is due to treatment . But bladder function? . It is one of those automatic functions; a healty person has a fair degree of control, to an extent , but those of us with MS often have very little control. How you fake that or "imagine" it better I cannot comprehend.

  13. Zavadinov has commented on operator variability, some of which may explain why his numbers do not agree with Zamboni's. That is why Zavadinov is still researching this field. I have had two independent Doppler exams, both of which confirmed presence of CCSVI. But now the researchers (including Zavadinov) will be be able to compare those examinations to several other methods: I also have had magnetic resonance venography and CT venography, in addition to catheter venography, which also included intravenous ultrasound venography. It will be interesting to see have the 5 modalities corelate.

    Your outright dismissal of this theory is simply ridiculous. The Buffalo numbers demonstrate a strong association between MS and CCSVI, moreso as the disease progresses. I think further refinement of CCSVI criteria and diagnotic techniques will resule in more consistant results between studies in future.

  14. Zavadinov has commented on operator variability, some of which may explain why his numbers do not agree with Zamboni's. That is why Zavadinov is still researching this field. I have had two independent Doppler exams, both of which confirmed presence of CCSVI. But now the researchers (including Zavadinov) will be be able to compare those examinations to several other methods: I also have had magnetic resonance venography and CT venography, in addition to catheter venography, which also included intravenous ultrasound venography. It will be interesting to see have the 5 modalities corelate.

    Your outright dismissal of this theory is simply ridiculous. The Buffalo numbers demonstrate a strong association between MS and CCSVI, moreso as the disease progresses. I think further refinement of CCSVI criteria and diagnotic techniques will resule in more consistant results between studies in future.

  15. But when we read the experience of MSers who have been treated on This is MS http://www.thisisms.com/forum-40.html , we can see there are many complications associated with venoplasty not suspected before: veins restenosis worst than originally treated, serious clotting or scaring issues with veins that are unrepairable after multiple treatments and even continuous MS progression with 100% flowing veins after treatment. The interventional radiologists who treat MSers are now modifying their strategy by using larger balloons, treating now the valves instead of the stenosis but they are not proposing to reimburse pwMS treated last year who are now presenting restenosis.

    in my point of view, venoplasty in MS is still experimental and I think it is still better to wait more time before considering to be treated.

    • that would be my recomendation to anyone with mild MS…for those of us already at a high EDSS, its worth the risk. I won't get my legs back, but maybe I can slow down any further progression and keep feeding myself.

  16. But when we read the experience of MSers who have been treated on This is MS http://www.thisisms.com/forum-40.html , we can see there are many complications associated with venoplasty not suspected before: veins restenosis worst than originally treated, serious clotting or scaring issues with veins that are unrepairable after multiple treatments and even continuous MS progression with 100% flowing veins after treatment. The interventional radiologists who treat MSers are now modifying their strategy by using larger balloons, treating now the valves instead of the stenosis but they are not proposing to reimburse pwMS treated last year who are now presenting restenosis.

    in my point of view, venoplasty in MS is still experimental and I think it is still better to wait more time before considering to be treated.

  17. Colin .. you must realize that the folks with MS talk to each other everyone online, and many of us are travelling and meeting each other in person. Some of us know the people in these trials. A lie can't be sustained… lets see how long Dr Zamboni can hang around.

  18. Colin .. you must realize that the folks with MS talk to each other everyone online, and many of us are travelling and meeting each other in person. Some of us know the people in these trials. A lie can't be sustained… lets see how long Dr Zamboni can hang around.

  19. They have shown that CCSVI is not specific to people with MS. Why is it wrong to treat the CCSVI in persons with or without MS diagnoses? Track the follow up of improvements in all patients… Follow up and follow through, as is supposed to be done with any treatment. But that doesn't generate profit for big pharma, does it? It's not about cure or quality of life, it is merely about "negligible" suffering and profit. Now that we have sufficiently identified the real problem, could we proceed to the real solution? Nah, too simple and no profit to be made.

  20. They have shown that CCSVI is not specific to people with MS. Why is it wrong to treat the CCSVI in persons with or without MS diagnoses? Track the follow up of improvements in all patients… Follow up and follow through, as is supposed to be done with any treatment. But that doesn't generate profit for big pharma, does it? It's not about cure or quality of life, it is merely about "negligible" suffering and profit. Now that we have sufficiently identified the real problem, could we proceed to the real solution? Nah, too simple and no profit to be made.

  21. Do you realize that the Canadian health care system pays the cost of MS disease modifying medications for patients that suffer with MS at a cost of more than $25,000/YEAR/patient??? What do you think would be a better way to go for the Canadian tax payer? Most MS patients would do anything for relief…they have been rats for years for the drug companies.

  22. that would be my recomendation to anyone with mild MS…for those of us already at a high EDSS, its worth the risk. I won't get my legs back, but maybe I can slow down any further progression and keep feeding myself.

  23. Thanks for this balanced report Anne. I found the headlines that resulted from the release of the study's preliminary results bizarre.

  24. Thanks for this balanced report Anne. I found the headlines that resulted from the release of the study's preliminary results bizarre.

  25. This looks familiar Carol. Same attacks on the same organizations and groups of people. No matter what evidence is provided, you will never change your tune. MS orgs could come out tomorrow and say that CCSVI was the cure and you'd still have a beef with them. Neurologists who have dedicated their lives to helping MSers could start treating people who have had CCSVI treatment and you'd still have a beef with them.

  26. Being a person who got the 13th treatment in the US and then had it again looked at after about 20 months, I can say not very straightforward at all. At my last venogram, it showed that I'm open and flowing in both jugs and my azygous. Doppler showed it and then the gold standard venogram showed it. The fact that it works for some and not others makes it not straightforward. How could they just take it as gospel if it's not working for, even close to really, everyone? I've obviously a proponent, but we can't say the science is over.

    I got some relief initally but am progressing again. And no I have not restenosed, I had it checked at about 9 months by Dr. Haacke up at Wayne State and then at Albany last week by Dr. Siskin. So all I'm saying is we have to look at everyone. It is wonderful and enviable that you are experiencing symptoms, but not all are so I think the research has to go on.

  27. venoplasty is not an experimental treatment, it has been around for a very long time. It is also a cheaper and more effective way to treat MS than the MS drugs that are out there. If they came up with something that made as much sense as CCSVI for other people with other diseases, I guarentee you the MS community of patients and there families would support it, because we understand!!
    I feel bad for people who think they understand what is really going on here, but are unforntunetly either misinformed or are uneducated on what's being happening with MS and CCSVI since Oct. of 2009. Find more info and you'll see the truth!

  28. If this is a true double blind study, how do you know you got the treatment and are not in the control group? I thought the whole point of double blind studies was to determine whether the results of the treatment were demonstrably more prevalent in the group that received the treatment than the group that thought it got the treatment, but really didn't, i.e. the control group?

  29. As you said it works for some not others…I think part of the issue is "MS" is more than one disease process. In fact, a Dr Rice, MS specialist told me he thought it was about 40 different conditions. Why would veinous work for everyone….the drugs don't. Maybe the research needs to rid of the idea that "MS" is not one cause or cure – for too long any neurological look-a-like as been lumped into MS.

  30. Hilarious! Dr. Colin Rose's comment removed by administrator! Well done chap.

  31. Hilarious! Dr. Colin Rose's comment removed by administrator! Well done chap.

  32. On the contrary, the situation with regard to "CCSVI" IS very straightforward. "CCSVI" as a disease doesn't exist. It should now be clear to you that any number of "blockages" in neck veins will have no effect on cerebral blood flow or any pathological effect on the brain. Both internal jugular veins can be completely occluded and the venous outflow will be directed to the paravertebral veins.

    With regard to the study under consideration, I will try to repost my comment, which was deleted by the admin, without some of the more inflammatory statements.

    Here's another quote of more relevance to "CCSVI" than Kingston's Fitzgerald quote:

    “Sorcery, astrology, acupuncture, and many other moonshine notions do not require research to be discarded – only clear thinking.”
    – Heinz Klatt, prof. emeritus of psychopathology, London, Ont.

    Most reporters, like Kingston, haven't even read Zivadinov's paper. They take the conclusions at face value without assessing how they were obtained. Let me quote from the Methods section:

    "As in any case-control study that includes disabled patients vs HCs, blinding was a challenge in the CTEVD [combined transcranial extracranial echo-colour dopper] study."

    Zivandinov is admitting that he didn't use adequate blinding. The data recorders were also the interpreters of the data and could have gotten hints of the subjects' diagnosis. At the very least the interpreters of the data should have been other investigators who had never seen the patient and were completely blinded to the diagnosis. So they found more "CCSVI" in MS patients than in the normal population. It is a well-known phenomenon that observers can subconsciously tweak a knob on a complicated machine like a echo-colour doppler to get the result one expects.

    There are now at least six well-blinded imaging studies some using Zamboni's protocol as well as MRI that have failed to find any difference in head and neck venous anatomy or flow between MS patients and normal subjects.
    http://medicalmyths.wordpress.com/2011/02/04/the-

    "CCSVI" is just a name for the normally large variation in head and neck venous anatomy some of which Zamboni chose to associate with MS in his UNBLINDED study. "CCSVI" as a disease does not exist and, consequently, "liberation" is a scam.

  33. I quote from the Wikipedia article on micturition:
    http://en.wikipedia.org/wiki/Urination

    "Urination, also known as micturition, voiding, peeing, weeing, pissing, and more rarely, emiction, is the ejection of urine from the urinary bladder through the urethra to the outside of the body. In healthy humans the process of urination is under voluntary control. In infants, elderly individuals and those with neurological injury, urination may occur as an involuntary reflex."

    Without peripheral nerve or spinal cord damage there should still be some voluntary control over micturition. Except for the unlikely event that you had totally reflex bladder control it would be hard to prove that "liberation" had really improved CNS function.

  34. WARNING: Colin Rose likes to mix things up and cause controversy for himself. Seems to have mastered curious people to check his web site. Hence makes lots of cash because they have been lured there. Nothing of worth going on there. That's the bottom line boys and girls!!

    • Exactly how could I make any money from my blog? I actually pay WordPress NOT to have any advertising on it. Even with the advertising only WordPress would have gotten the income, not me. You may think there is nothing of worth on my blog but it outlines in great detail all of the evidence against the existence of "CCSVI" as disease. If I can prevent even one MS patient from throwing away their life savings on "liberation" it's worth the effort.

  35. WARNING: Colin Rose likes to mix things up and cause controversy for himself. Seems to have mastered curious people to check his web site. Hence makes lots of cash because they have been lured there. Nothing of worth going on there. That's the bottom line boys and girls!!

  36. Oh hi Colin…slow day today? Wikipedia? Really?

  37. Yawn…quoting Zamboni is soooooooo 2009…going beyond that now.

  38. Yawn…quoting Zamboni is soooooooo 2009…going beyond that now.

    • We are indeed beyond Zamboni. He has been proven to be willfully naive, self-aggrandizing and bad scientist.

  39. Do you think there something wrong with Wikipedia's article on urination? If so, please correct it.

  40. We are indeed beyond Zamboni. He has been proven to be willfully naive, self-aggrandizing and bad scientist.

  41. That's not at all what Pete Tong asked though, is it?

  42. This comment was deleted.

    • Sigh I read and reread Loobie's post…can you point out where he says he was scammed please?

  43. I'm quite certain that one of the controls with CCSVI was diagnosed with MS later on. I wish I could find an exact quote. If anyone could find it please post.

  44. Venoplasty has never been done before on neck veins and is therefore highly experimental, not to say foolish. There is no reason to. Even complete blockage of both internal jugular veins causes no symptoms and certainly not MS. Exactly what scientific data of which I am unaware proves that "CCSVI" exists and that "liberation" has a biological effect on the CNS lesions of MS?

  45. I am M.S. progressive and have been tested for CCSVI I meet the criteria for this treatment yet I can not have this procedure done here in Canada why?…….The blood flow fom my brain, neck and chest are not working in a normal way, so why, why, why am I not getting the treatment to correct this!……because I have a label "M.S."!.. how sad we have become as a country when our doctors we trust are fighting over who is right when it come to this procdure what happeneds to doing whats right for the patient!….I want and need this procedure like yesterday!!!!…..HELP!

    • What is the evidence that your cerebral blood flow is reduced? Has anyone measured it? Just doing scans of veins says nothing about cerebral blood flow. If your cerebral blood flow was measured and was primarily reduced then there might be something to correct. But I can tell you that any significant reduction in cerebral blood flow would make you unconscious by hypoxia of the high oxygen consumption neurones of the grey matter long before it could possibly cause any damage to the low oxygen consumption glial cell in the white matter disease of which causes MS. So I am going to bet you don't need anything corrected in your neck and chest veins.

  46. I am M.S. progressive and have been tested for CCSVI I meet the criteria for this treatment yet I can not have this procedure done here in Canada why?…….The blood flow fom my brain, neck and chest are not working in a normal way, so why, why, why am I not getting the treatment to correct this!……because I have a label "M.S."!.. how sad we have become as a country when our doctors we trust are fighting over who is right when it come to this procdure what happeneds to doing whats right for the patient!….I want and need this procedure like yesterday!!!!…..HELP!

  47. What is the evidence that your cerebral blood flow is reduced? Has anyone measured it? Just doing scans of veins says nothing about cerebral blood flow. If your cerebral blood flow was measured and was primarily reduced then there might be something to correct. But I can tell you that any significant reduction in cerebral blood flow would make you unconscious by hypoxia of the high oxygen consumption neurones of the grey matter long before it could possibly cause any damage to the low oxygen consumption glial cell in the white matter disease of which causes MS. So I am going to bet you don't need anything corrected in your neck and chest veins.

  48. Sigh I read and reread Loobie's post…can you point out where he says he was scammed please?

  49. I was heartened to see the foam being wiped from the mouth of the infamous blogger. Some things we are better off not even being aware of their existence.

    • LOL Chris!.

  50. I was heartened to see the foam being wiped from the mouth of the infamous blogger. Some things we are better off not even being aware of their existence.

  51. LOL Chris!.

  52. Zivadinov's paper says that some of the control subjects could be genetically related to each other. It says nothing about them being related to the MS patients.

  53. Exactly how could I make any money from my blog? I actually pay WordPress NOT to have any advertising on it. Even with the advertising only WordPress would have gotten the income, not me. You may think there is nothing of worth on my blog but it outlines in great detail all of the evidence against the existence of "CCSVI" as disease. If I can prevent even one MS patient from throwing away their life savings on "liberation" it's worth the effort.

  54. The Michael E DeBakey Dept of Surgery at Baylor College of Medicine is now doing CCSVI veinous angio…those scammers lol. Now this is a reputable Texas school and Dept of Surgery…why would they be fooling all us poor, witless, desperate people?

    • Some quotes from the BCM site:
      http://www.debakeydepartmentofsurgery.org/home/co

      "Researchers have recently discovered a possible association between MS and CCSVI. CCSVI occurs when the flow of blood in the veins of the chest and neck is compromised. This causes less efficient draining of blood from the brain. It is proposed that insufficient venous blood flow, in turn, promotes development of brain dysfunction, especially in MS."

      "Proposed consequences of CCSVI syndrome include intracranial hypoxia, delayed perfusion, reduced drainage of catabolites, increased transmural pressure, and iron deposits around the cerebral veins. Iron deposition as a cause of MS received support when a relation between venous pressure and iron depositions in MS patients was found in a neuroimaging study. CCSVI itself, regardless of MS presence, is known to cause mind impairment."

      "Treatment for CCSVI is an endovascular procedure to dilate the narrowed vein with a balloon, which is delivered from the groin. This procedure is done in conjunction with the diagnostic venogram. It has been shown that this procedure may reduce symptoms in MS patients that are diagnosed with CCSVI."

      There isn't a shred of scientific evidence for any of these statements. "CCSVI itself … is known to cause mind impairment". Really? What's "mind impairment"? There is no publication showing any such thing. Is this a new surgical diagnosis invented by the BCN group? DeBakey must be turning in his grave.

      • Wow Colin you are better than Baylor! You probably should let them know…I think there is a contact number.

  55. The Michael E DeBakey Dept of Surgery at Baylor College of Medicine is now doing CCSVI veinous angio…those scammers lol. Now this is a reputable Texas school and Dept of Surgery…why would they be fooling all us poor, witless, desperate people?

  56. Some quotes from the BCM site:
    http://www.debakeydepartmentofsurgery.org/home/co

    "Researchers have recently discovered a possible association between MS and CCSVI. CCSVI occurs when the flow of blood in the veins of the chest and neck is compromised. This causes less efficient draining of blood from the brain. It is proposed that insufficient venous blood flow, in turn, promotes development of brain dysfunction, especially in MS."

    "Proposed consequences of CCSVI syndrome include intracranial hypoxia, delayed perfusion, reduced drainage of catabolites, increased transmural pressure, and iron deposits around the cerebral veins. Iron deposition as a cause of MS received support when a relation between venous pressure and iron depositions in MS patients was found in a neuroimaging study. CCSVI itself, regardless of MS presence, is known to cause mind impairment."

    "Treatment for CCSVI is an endovascular procedure to dilate the narrowed vein with a balloon, which is delivered from the groin. This procedure is done in conjunction with the diagnostic venogram. It has been shown that this procedure may reduce symptoms in MS patients that are diagnosed with CCSVI."

    There isn't a shred of scientific evidence for any of these statements. "CCSVI itself … is known to cause mind impairment". Really? What's "mind impairment"? There is no publication showing any such thing. Is this a new surgical diagnosis invented by the BCN group? DeBakey must be turning in his grave.

  57. Wow Colin you are better than Baylor! You probably should let them know…I think there is a contact number.

  58. Really? Then why doesn't the Ontario government cover it since OHIP covers all medically necessary services provided by physicians as long as they are not generally accepted in Ontario as experimental, for research or a survey, including clinical and drug trials. Oh I know… it's because there is not one single physician in Canada who does not consider the procedure experimental. There may be physicians who support it but no physician will say that there is sufficient evidence that it is safe and effective.

  59. I don't think there is any evidence to support that the procedure would lead to long term cost savings, but if you can direct me to them, I would be happy to take a look.

    Ontario does not cover treatment that is generally accepted in Ontario as experimental, for research or a survey, including clinical and drug trials and if they did, they would not be able to do it on a disease by disease, or case by case basis without being susceptible to challenges under the Charter of Rights and Freedoms.

  60. Well every student knows not to cite Wiki…I just would have thought a very impt doctor such as yourself would have cited real sources. Wikipedia=truthiness

  61. Well every student knows not to cite Wiki…I just would have thought a very impt doctor such as yourself would have cited real sources. Wikipedia=truthiness

    • There are lots of other sources but this is the easiest for the layman to understand. Again, if there is an error, please inform us.

      • You're being patronizing again tsk tsk…I'm in the middle of a meeting but I seriously cannot resist baiting you

  62. Say something new Colin…really. You're like Stephen Harper…if you say its the truth often enough, you actually believe it. I have touched the legs and hands of two persons who were liberated (stupid name)…the change in temperature and colour is remarkable. It might not be the stuff you went to med school with but there is something positive for many people. At the very least it warrants further research by vascular specialists. The End.

  63. There are lots of other sources but this is the easiest for the layman to understand. Again, if there is an error, please inform us.

  64. Is there any physiologically rational reason why dilating neck veins should affect the colour and temperature of hands and feet? If this is a consistent, real, objective result of "liberation" is should be easy to document with photos and surface temperature measurements. Why hasn't that been done by Zamboni and his disciples?

  65. Is there any physiologically rational reason why dilating neck veins should affect the colour and temperature of hands and feet? If this is a consistent, real, objective result of "liberation" is should be easy to document with photos and surface temperature measurements. Why hasn't that been done by Zamboni and his disciples?

    • Because the studies now underway involve imaging only..you know that. Tell you what…my husband knows nothing about how this treatment might change temps/colour….but he is always commenting on how cold my legs/feet/hands are. If he notices anything changing without me prodding him, will you accept that possible affect? I won't hold you to it…but just be a little more open-minded.

  66. You're being patronizing again tsk tsk…I'm in the middle of a meeting but I seriously cannot resist baiting you

  67. Because the studies now underway involve imaging only..you know that. Tell you what…my husband knows nothing about how this treatment might change temps/colour….but he is always commenting on how cold my legs/feet/hands are. If he notices anything changing without me prodding him, will you accept that possible affect? I won't hold you to it…but just be a little more open-minded.

  68. I had treatment for CCSVI in Albany, New York on April 9th. My MS symptoms have improved dramatically. I'm sure it is not just in my head that the pain in my legs is gone. Neurologists in this country need to stop being so arrogant and help those who are suffering by looking for the cause of MS and not just more drugs to manage this disease.

    • There is not a shred of SCIENTIFIC evidence that "CCSVI" is the cause of MS, only anecdotal stories of "liberation" like yours. Faith in Jesus and other deities also makes some MS patients feel better and it's a lot cheaper.

  69. I had treatment for CCSVI in Albany, New York on April 9th. My MS symptoms have improved dramatically. I'm sure it is not just in my head that the pain in my legs is gone. Neurologists in this country need to stop being so arrogant and help those who are suffering by looking for the cause of MS and not just more drugs to manage this disease.

  70. There is not a shred of SCIENTIFIC evidence that "CCSVI" is the cause of MS, only anecdotal stories of "liberation" like yours. Faith in Jesus and other deities also makes some MS patients feel better and it's a lot cheaper.

  71. Dr. Rose,

    I don't know what research you conducted that lead you to the assertion that I didn't read the Buffalo study, but please be informed that I did. If you want to comment on the BNAC research, that is your right. Making erroneous conclusions in an attempt to undermine a journalist's credibility is not.

    Anne Kingston

    • Perhaps I should have qualified my remark. There is a big difference between reading a paper and reading it critically. As soon as we learn to read we are all trained to blindly accept the truth of the written word. It`s a hard habit to break. In this Internet age, high school science education, in addition to the standard curricula, needs to teach skills in the assessment of the validity of data and conclusions drawn from them, using the Zamboni fad as a classic example of what not to do. Science journalists especially should be required to take a course in critical appraisal of publications. Medical journals are particularly prone to publishing less than stellar science. Reviewers of submissions to medical journals are often not willing to spend the time to properly analyze them or just hand them to students.

      A critical reading of the Zivadinov paper makes it quite obvious that the conclusions are not justified by the data. In a study like this very rigorous blinding is essential and it wasn`t done. The paper should never have been accepted by a reputable journal. Likewise, Zamboni`s original study made no serious attempt at blinding at all and should never have been accepted for publication.

      Why do you fail to mention the numerous rigorously blinded studies using both MRI and ultrasound that fail to find any difference in venous anatomy and flow between MS patients and normal subjects? Why do you fail to mention that MS patients do not have increased intracranial pressure, the only means by which blocked veins could induce brain pathology.
      http://medicalmyths.wordpress.com/2011/02/03/ms-p

      Why do you continue to write articles with statements like Zamboni "rocked the medical boat" implying that "CCSVI" is a major medical discovery? That neck vein obstructions cause brain pathology makes no physiological sense. In his desperation to cure his wife's MS Zamboni ignored 400 years of physiological science. No medical boat was rocked. No medical textbooks will have to be rewritten to accomodate Zamboni`s fantasy.
      http://medicalmyths.wordpress.com/2009/11/24/the-

      Why do you quote Canadian vascular surgeons who stand to make $millions, like the myriad unscrupulous charlatans in medical tourist clinics around the world, if "liberation" ever gets approved in Canada and politicians who know nothing about science and are only trying to appease the Zamboni cult that terrorizes them with accusations of "discrimination" and denial of potentially "curative treatment." Likewise, MS societies are terrorized into throwing money at "CCSVI" , unfairly bypassing the usual process of peer review of applications and assignment of scientific priority. If "CSSVI" research applications were to be judged fairly against competing applications based on real science they would never be funded.

      "CCSVI" is already the most expensive scam in medical history. While selling magazines, incendiary articles like this one only help to popularize it and give it legitimacy by implying that it is revolutionary new theory and that the medical establishment is potentially denying a cure for a terrible chronic disease. Even more MS patients are encouraged to spend their life savings and risk their lives on 'liberation". A truly ethical popular publication would ignore "CCSVI". If you insist on writing about it I would hope that the next time you will distinguish between scientifically valid truth and fantasy engendered by self-deception, self-aggrandizement, money and false hope.

  72. if it is proven to work finally , i m afraid some will debate it was not true ms patients in the first place ..

  73. Health care professionals like the neurologists in this article take anecdotal evidence everyday regarding symptoms of multiple sclerosis.  You cannot definitively measure pain, fatigue, brain fog and many other symptoms of MS.  One person may rate pain as 5/10 yet another person could have the exact same pain and rate it as a 3/10.  Regardless of the inability to measure these symptoms, neurologists accept that MS patients have pain by receiving anecdotal evidence.  In other words, the patients tell of a symptom and the neurologists accept that evidence.

    The irony of CCSVI and liberation is that the same neurologists, who are willingly able to accept anecdotal evidence of worsening or development of symptoms, will not take the anecdotal evidence of patients who report improvement of these same debilitating symptoms after venoplasty.  Many of these neurologists talk of placebo affect, but if so many patients’ quality of life is improved after liberation surgery, then why not conduct a blinded treatment study?  I hear tell of neurologists thinking that it is a waste of money to study the theory, but is it not in the public’s interest to have a definitive answer?  Yes or no.  Does it help or not?

    I have MS and I have been trained in western medicine as a pharmacist.  I was skeptical and cautious at first too, but as I told my neurologist, if 10,000 patients with MS started taking vitamin C and 2/3 of the people have improved quality of life, would the neurologists and experts not recommend trying vitamin C?  I respect the caution that the neurologists are showing, but as scientists who have committed their lives to the improvement of MS patients, would they not also want to know the answer to whether liberation could help or not?

    An even better question would be, whether a patient has MS or not, if blood flow in the jugular vein was blocked or moving in the wrong direction, should that not be treated regardless of condition?  I had a dopple ultrasound don 2 weeks ago at Port Perry, which I paid out of my own pocket for because I have MS, and a week later the results showed that my left jugular vein had no blood flow and my right jugular vein had backward moving flow.  I ask not only neurologists, but all Canadians, if you or your family member had the same condition, would you not go and get treated for it?  The answer for most would be yes and more importantly, if you didn’t have MS you could be treated here in Canada for no cost.  This is discrimination at its worst. 

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