Posted by: Chris Maloney | April 19, 2012

Feds to fund clinical trial of controversial Liberation MS treatment in Canada

Paolo Zamboni University of Ferrara, Italy Ita...

Paolo Zamboni University of Ferrara, Italy Italiano: Paolo Zamboni Universtità di Ferrara, Italia (Photo credit: Wikipedia)

Feds to fund clinical trial of controversial MS treatment in Canada.

You’ve got to love the name:  “Liberation Treatment.” That was marketing genius.  I’ve got a bit of an issue here.  The doctor doesn’t just open up veins for MS patients.  He rejects the idea that MS is an autoimmune disease.  Based on?

I’ve written about MS before.  It appears to have a definite connection to vitamin D deficiency, which acts in the body as an immune modulator.  In a susceptible group of individuals, nerve inflammation results.  Various viruses, including EBS, are implicated in worsening the condition.  Nowhere does MS say to me: this is all due to venous blockages.

Dr. Paulo Zamboni is a vascular surgeon who’s wife has MS.  As a vascular surgeon he tried what he knows and it seemed to help his wife’s symptoms.

So far, so good.  But what is the evidence?  Dr. Zamboni has great results, but no one else has been able to replicate them.  So either go to Zamboni or consider doing something else.  Other researchers have also been unable to document his findings of neck vein blockages.

What is a patient to do? Well, before having someone roto-rooter your veins, you might have your PCP order some EBS titers during times of worsening symptoms.  When I did this with one patient, we found her thirty to fifty day worsening cycles matched exactly to the fluctuation of her viral titer.  She was much more able to maintain function knowing what was making things worse.   There are a few more non-toxic ideas at my website.

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Responses

  1. what about the 30 000 estimated procedures around the world? Your article sounds very much like a neurolagists arguments. Do your research on the background of MS and you will learn that it originally was believed to be a vascular condition then suddenly it was an auto-immune disease. They have still not proven the auto-immune theory and the treatments for this theory don’t work. HOW CAN THEY? I’ve done my homework and I believe that this is the best way for me to proceed. It’s not perfect but it does work.

  2. […] I wrote about Canada funding CCSVI treatments for Multiple Sclerosis, I figured people would be upset.  Everyone with a chronic condition wants […]

  3. Thanks for taking the time to write. I’ve looked more into the treatment. Zamboni is alone in claiming this treatment proves an entirely new theory for MS. What is more likely is that the treatment may be helpful with some of the symptoms of MS. Here’s the new post. https://alternativendhealth.wordpress.com/2012/04/22/chronic-cerebrospinal-venous-insufficiency-ccsvi-and-multiple-sclerosis-should-ms-patients-try-it/

  4. You need to research outside of your comfort zone. There are many doctors and clinics who aren’t basking in the World Wide Web limelight.They are seriously working on the never ending trials and studies that the MS Societies and politicians have insisted need to be done. How many people who have had the angioplasty procedure for CCSVI have you personally interviewed? How many medical records have you read?

    The media took off like a rocket with “The Liberation Procedure moniker. People with MS/CCSVI don’t use it.

    Since you must consider yourself well informed about MS then you won’t have a problem understanding the status of a person with SPMS for 17 years. This person would be in a power chair due to muscle weakness that won’t allow her to wheel her own manual wheelchair anymore.She has severe cognitive problems, unable to keyboard, remember what day it is or that her best friend died six months ago.She can’t be left alone all day due to dysphagia and the real potential of choking to death when she eats.She can’t drive, her eyes no longer track and are always looking in a different direction. Because she has a neurogenic bladder, she has to self-cath daily.She stutters and her speech is slurred making it difficult for people to understand what she is trying to say. MS Hug causes panic attacks on a regular basis. (It’s a bit frightening to be unable to take a deep breath.)

    Two years ago this woman was treated for CCSVI and is now asymptomatic for MS symptoms except for heat intolerance. Of course there is much more to recovery from CCSVI than a roto-rooter job. Many lifestyle changes need to be made, vitamin and mineral deficiencies addressed as well as proper aftercare. By the way, I am that woman and Dr. Zamboni was half a world away when I had angioplasty. There are doctors all over the world who treat CCSVI. His results have been replicated. That you are ignorant of the facts surrounding this condition and it’s treatment is obvious. You might want to “look” a bit more into “the treatment”.

  5. A very powerful story, and thank you for sharing it. I would like to think that it would work for everyone. In your case the treatment was very successful, but it’s the people who died of the procedure that I’d have to interview to get a balanced viewpoint. Lacking access to them, I am left with the compiled medical records and reports generated by medical experts. Thus far, a number of studies have been done looking for what Dr. Zamboni describes as the causative agent in MS patients. Some studies find it, and others do not. It is these findings that lead me to consider Dr. Zamboni’s treatment something that may be effective for symptom relief for a minority of patients. I am very happy that you were helped, but I cannot in good conscience recommend that patients who are currently in jobs with families to care for undergo the procedure before exploring other options. Here is my second response as a post: https://alternativendhealth.wordpress.com/2012/04/22/chronic-cerebrospinal-venous-insufficiency-ccsvi-and-multiple-sclerosis-should-ms-patients-try-it/


  6. Australia

    The information you have accessed is faulty. This is the truth about deaths connected to angioplasty for CCSVI.
    PML:

    https://www.facebook.com/pages/Tysabri-PML-Progressive-Multifocal-Leukoencephalopathy-Deferno-Trust/179672108730515

    Deaths from Tysabri:

    http://chefarztfrau.de/?page_id=418

    The truth about CCSVI related deaths:

    https://www.facebook.com/notes/ccsvi-ontario/how-dangerous-is-the-treatment-for-ccsvi/318177211586523

    I thought it might be helpful to you to know the truth and not what the drug companies spew to anyone who will listen. Apparently the number of politicians and doctors is astronomical.

  7. I thought it might be helpful to you to know the truth and not what the drug companies spew to anyone who will listen. Apparently, the number of politicians and doctors is astronomical. My story is not a fluke or one of a few. If you are truly interested this is my story:

    http://ccsvimammananny.blogspot.com

    http://www.youtube.com/user/mammananny?feature=guide

    Linda

  8. Dear Linda,

    Thank you for sharing your story. As I have said, I think CCSVI may be helpful with some MS patients, but I cannot recommend it for everyone with MS. The Canadian commission was very positive about CCSVI and obviously recommended funding trials. But their results were not terribly positive or definitive. In comparison to your powerful story, here is another wonderful, sharing individual for whom CCSVI did not work. It is a piece of the puzzle, but only a piece.

    http://cihr-irsc.gc.ca/e/44356.html

    Found few serious side effects, but no blinding of clinicians and no control group. Patients were not followed for side effects after the immediate post-procedural period.

    http://www.enjoyingtheride.com/2011/04/ccsvi-round-two-did-it-work.html
    http://www.enjoyingtheride.com/search/label/CCSVI%20Diagnosis%20and%20Treatment%20Log

    A report by another advanced case where CCSVI did not immediately resolve any of his issues.

  9. I am very excited by the prospects of this happening in canada. I just hope that it can happen quicker than i think it will, to aleive peoples suffering. there have been many positive stories and that is great it gives us hope where before they had only drugs and mobility aids to help us, so when somebody throws us a line it’s not hard to see why we all grabbed onto it. The first people who were getting it done felt that they had to do it. I felt like i had more time to wait for the studies to be completed. That is all that we are asking for in canada, the government to get moving on this. We want and need a dr. to follow up on our health care here in canada. I know of people here in saskatchewan who are being denied health care as punishment for going out of country to have a procedure that improves quality of life. I know of a woman who was having chest pains a year after the procedure and she was denied care by the college of physicians. she had to leave the country to have a follow up. That is disgusting to me. There are lots of people on the internet giving FALSE information, diagnosing people without medical training or experience. I personally try to help people by pointing them in the direction to research it themselves. I have found Dr.s to be the most skeptical in accepting the possibility that MS is a vascular issue. So i’m not suprised that Christopher Maloney would be hesitant, but i was suprised that a Naturopathic Doctor would be so hesitant and printing a very negative article about a non chemical treatment for a chronic illness.

  10. I agree its non-chemical, but I’m not certain it’s a good general treatment for patients. The diagnosing of venous insufficiency varies widely and the treatment itself isn’t giving the overwhelmingly positive results it should if it is indeed the cure. Realize as an N.D. I get a miracle cure every week. I’ve seen more failures than I have successes. And I’m particularly leery of intrusive surgeries which I regard as last ditch efforts rather than first-line therapies.

    Here’s my second post on the issue: https://alternativendhealth.wordpress.com/2012/04/22/chronic-cerebrospinal-venous-insufficiency-ccsvi-and-multiple-sclerosis-should-ms-patients-try-it/

  11. I am not aware of any person with MS who has proclaimed the angioplasty procedure for CCSVI to be anything close to a “cure”. The media uses that word quite freely and inaccurately. Recovery from the symptoms of MS/CCSVI involves much more than this minimally invasive and NON-surgical procedure.At that point it is still not called a cure by the people who have undergone the procedure. It IS however a viable alternative to the disease modyfing drugs that have been peddled to patients by their neurologists knowing full well that they are largely ineffective and dangerous.

    Every one is entitled to an opinion and the right to express it. I would expect that a medically trained professional would exercise more caution about what they print. A well informed opinion can be mutually beneficial. The opinion of a professional who lacks basic knowledge about the subject discredits himself at best. When this happens, future observations by that person concerning matters he genuinely has greater knowledge and insight about becomes supect.

    Mr. Ruttle seems to have a valid point.Not only has Canada fimly planted her heels in the ground about this issues, but they have indeed successfully applied punitive punishment for citizens who sought treatment out of country.

  12. the only people who are calling it a cure are the media and the ill informed. The majority of us do know that it is another treatment for ms that is actually working. the issues around the wide variations can be attributed to operator error. the recommended test is MRV with Hakee (i have no idea how to spell it) protocol. it’s supposed to greatly reduce operator error. The Dopplar ultrasound is basically the cheapest test to see if we need the bigger test. the dopplar ultrasound, in my opinion, is just a test to see if there is a change in blood flow. won’t tell you why or where, just that there is something wrong in the pipes. I was on Betaseron (beta-interferon) and it did do somelthing for me, it made me worse. I started having all the “MS” symptoms only after i started taking the injections. when i stopped the injections after 8 months i was able to stop all the medications. soo it leads me to believe that the “MS” symptoms are really “DMD” symptoms. The angioplasty is fairly safe, i’m not saying that its completly safe cause if it was they wouldn’t need to do it in the hospital. Roto-rooter is a completely arrogent and offensive way to describe it. I understand that you are somehow a medical Dr. (no offense intended) I don’t quite understand how a naturopath is considered a medical dr. I have seen an online kit to get a naturopath degree so it raises some questions in my eyes. anyways the whole Veinus Angioplasty as a treatment for CCSVI is completely plausible. you just have to keep in mind that CCSVI and MS are 2 different entities.
    I emplore you to keep an open mind when looking at the research and read all the reports not just the Neurolagist influenced reports. read the vascular dr.s who actually perform the procedures reports.

  13. You and the rest of the world need to stop calling it a cure. It is not a cure, we never believed it was, it is a treatment. It treats veins that are not flowing correctly due to many different factors, ones that still haven’t been found yet. These veins are not in the head, as you have written, but are in the neck and chest (jugular and azygos). If you have done enough research and talked with treated patients, you will even hear stories of those that didn’t feel better until it was discovered that their veins hiding under their collar bones were blocked, then they had those opened.

    CCSVI is a condition of it’s own, a separate one. It isn’t an issue with everyone with MS, just like Vit D deficiency isn’t an issue with everyone with MS, it is in MANY with MS, but not all. MS is also not the ONLY condition that has issues with having CCSVI either, it is present in those with ALS, Parkinsons and Lyme Disease too. What has yet to been determined is what came first, the disease or the blocked vein. In MS, studies are showing that the blood flow is refluxing and not draining out the iron and dirty blood from the brain efficiently enough, hence iron sitting stagnant and leaving the lesions. Trying to take a drug, herb or vitamin will never fix this problem. A surgical intervention is required to physically get these veins opened. There is even a condition called Eagles Syndrome that is being found to be an equation too with CCSVI. A calcified bone putting pressure on the jugular veins. An even more dangerous surgery is required to fix that.

    May I ask how long you did research on this? I’ve been reading up on it daily since mid 2010 and have personal friends that have benefit from the CCSVI treatment. In my opinion, your facts are out of sorts on this topic and you should not be writing about this until you do a very extensive, long term investigation. You are influencing others with lack of knowledge, and that alone could lead to a person not getting proper care for their condition.

  14. Dear Warren,

    I think we have reached the end of a useful discussion here. If you doubt my medical degree and my ability to understand the basics of the illness you describe, then surely my opinion carries no weight for you. I fail to understand why you would contact me in the first place.

    I have laid out an extensive explanation of who I am and my medical degree at http://www.maloneymedical.com, which you should feel free to look over. (It’s the “home site” link at the top of the blog page.)

    I wish you well. If you wish to respond, please do so with medical evidence from medline to convince me. Anything else is a waste of both of our time.

  15. Dear Linda,

    Having received three comments from three different individuals all saying the same thing, none of which address the multiple research abstracts I have provided, makes me think I am being targeted by a group that does not have open mind on this subject but is determined to silence legitimate concerns about this issue. In future comments, please provide me with medical citations that contradict what I have written. Simply claiming that I am ignorant without providing evidence of my ignorance amounts to a personal attack. As such, it does not further your cause.

  16. I do not target anyone. I am also not in a group with the other respondents. The word ‘ignorance’ means lack of knowledge, learning, information, etc. For one to be told they are ignorant of a specified topic is not a personal attack. That you perceive it in that light is interesting. Rather than flood you with information you clearly do not want from me, I would refer you to this link:
    http://www.ccsvi.org/

  17. Dear Chritopher,
    Having read your assertation that Veinus Angioplasty is akin to rotorootering your veins it is no wonder that proponents of CCSVI are commenting here. Until you make responsible comments and not spread fear mongering you are opening yourself to these comments. Demanding that I provide evidence that is only available from one source is very close minded. In my research I look at many different sources of information, many peer reviewed medical journals as well as patient testimony. You have never had to live with the knowledge that one day you will need a wheelchair and be unable to perform the basic tasks that we take for granted. Never had to live with what we experience daily. Therefore it is reasonable to see why many of us with MS are willing to take a chance on a procedure that is safer than getting teeth pulled.
    I consider the topic closed on my end, I will comment again if I continue to see fearmongering.

  18. Thank you.

    Forgive me for feeling that three individuals all saying the same comment who are proponents of the same issue might be working together.

  19. Dear Warren,

    As a person who has a family member with MS, I truly understand the pain of those suffering. But when I request studies from medline, I am talking about http://www.ncbi.nlm.nih.gov/pubmed/, which contains a repository of all peer-reviewed medical journal articles. These are the sources of information we need to look to for CCSVI, because it is a medical procedure that will not be done outside a hospital setting. Requesting that information is hardly ignorance on my part. It is a request that we move the discussion from one of opinion to one of facts. On my part I have provided the relevant analyses from the experts in the field. I do not base my opinion on case histories or individual reports. I must rely on those who perform the procedure to accurately report their results. It is their reports, not individual case histories, that inform my opinion.

    Fear-mongering is creating fear where there is no cause. In this situation, we are not talking about a riskless situation. The term “roto-rootering” is based on the http://www.rotorooter.com/ cleaning procedure, which involves cleaning a drain or blocked pipe of debris. It is an visual protrayal for a layperson of the procedures involved.

    Please feel free to forward me any medical meta-analyses that contradict what I have already written.

  20. Dear Linda,

    I have had a look around http://www.ccsvi.org/. You do realize that http://www.ccsvi.org/index.php/advanced-topics/the-great-debate-ccsvi-and-ms is more negative than what I have written? To quote Al Ossorio: “Clearly, given the contradictory research, no truly definitive statements about CCSVI can currently be made.” And a sentence or two later he says: “This article does NOT address CCSVI treatment effectiveness. Some may be disappointed by this, but the fact is that only two studies have explored CCSVI Treatment.16, 17 Both were “open label” (not scientifically conclusive), and both found similar results (that treatment may help, but that more research is needed before any conclusions can be drawn).”

    Given that the link you provided me gives a more negative impression of the CCSVI research than I have given, I truly do not understand your issues with my analysis. Perhaps your time would be better spend reading the material you provided than taking issue with my more positive review.

  21. Dear Kendra,

    I am going to refer you to http://www.ccsvi.org/index.php/advanced-topics/the-great-debate-ccsvi-and-ms for a complete analysis of the evidence available on CCSVI. According to the medical proponents of CCSVI, all we know is conflicting reports about whether the illness exists, and we have no definitive information on treatment. In both of my posts on the subject, I link to expert analyses of the available data. Thus, it is unimportant how great my expertise is on the issue. It is their expertise you are calling into question.

    Let us take on faith that you know far more about this issue than I do. As the expert, you should be able to provide me with studies and analysis that I have not accessed. If possible, I prefer peer-reviewed articles, but in this case I will accept any source. I look forward to increasing my education.

    In terms of referring to CCSVI as a cure, it is true that proponents are backpedaling from the cure idea, but we still have these words: “Chronic Cerebrospinal Venous Insufficiency (CCSVI) is a newly documented vascular condition that may profoundly change the way we think about MS.” If something is going to resolve symptoms and profoundly change how we think about an illness, the shorthand for that would be a “cure.”

  22. Multiple Sclerosis (MS): a Polish study confirms Dr. Zamboni’s theory

    Alessandro Rasman

    It was published on the medical journal “Functional Neurology” a study titled “Prevalence of extracranial venous abnormalities: results from a sample of 586 multiple sclerosis patients”.

    According to the Polish team headed by Dr. Marian Simka (Katowice) the aim of this study was to assess the prevalence of chronic cerebrospinal venous insufficiency in an unselected cohort of multiple sclerosis (MS) patients.

    A total of 586 patients with clinically defined MS underwent catheter venography of the internal jugular veins, brachiocephalic veins and azygos vein. The following findings were regarded as pathologic: no outflow, slowed outflow, reversal of flow direction, prestenotic dilation accompanied by impaired outflow, outflow through collaterals, intraluminal structures obstructing the vein, hypoplasia, agenesia or significant narrowing of the vein.

    Venous abnormalities were found in 563 patients (96.1%). Lesions in one vein were found in 43.5%, in two veins in 49.5%, and in three veins in 3.1% of patients.
    Venous pathologies in the right internal jugular vein were found in 64.0% of patients, in the left internal jugular vein in 81.7%, in the left brachiocephalic vein in 1.0%, and in the azygos vein in 4.9%.

    According to the authors venous pathologies were found to be highly associated with MS, yet the clinical relevance of this phenomenon remains to be established.

    These results made with a diagnostic methodology, venography, considered by many authors as the “gold standard” for diagnosis of CCSVI, confirm the earlier results published by Dr. Paolo Zamboni (Director of the Vascular Diseases Center, University of Ferrara), and refute some studies that oppose the hypothesis of Dr. Zamboni and were conducted with non-standardized methods (Doepp, Baracchini, Centonze, etc..) Including the one granted by the Italian MS Society (Aism) which last October announced to the press that “based on preliminary data, the presence of CCSVI was observed globally in less than 10% of the subjects.”

    Source: Functional Neurology Vol. XXVI (No. 4) – 2011 October/December
    I have 13 other links (just the link…not the entire article, including 3

    http://www.ncbi.nlm.nih.gov/pubmed? you are so fond of.

  23. I think you should take a look at these links….

    http://www.facebook.com/notes/ccsvi-ivcc/doctors-with-ms-treated-for-ccsvi-les-m%C3%A9decins-avec-la-sp-trait%C3%A9s-pour-livcc/160260514038006

    http://www.facebook.com/notes/amy-gaylord-preston/dr-gianfranco-campalani-on-the-nature-of-things-feb-9-2012/10150549143693191

    I’d like to challenge you to realize that abstracts are not concrete proof and often wrong, even studies can be influences with the wrong experts. The body works in mysterious ways, and people in medicine need to remember that they don’t have all the answers and new medical discoveries are being found often and even corrected. In an example…Fibromyalgia was once assumed a mental condition, now they know better…

  24. Have u ever seen a rotorooter? there is a huge difference in sending a whirling blade into a vein opposed to a small baloon that is inflated. The trials are still happening the majority of the papers that have been written have had unreported facts to skew the data. ie. a trial in the us had family members of those with ms which showed a higher prevelance in CCSVI.

    http://www.ms-info.net/ms_040504.pdf

    this is an article that describes how MS was first recorded as a vascular disease. I am sending background links to establlish why the vascular hypothesis makes more sense than an immune hypothesis

    http://www.geomednews.org/shared/issues/med199.pdf

    this is a study that has the information starting on page 29. “In all the cases we observed positive remission of the disease, the first ever documented case of MRI index improvement.” Direct quote from page 33 second paragraph down.

    http://www.functionalneurology.it/index.phpPAGE=number&ID_ISSUE=584&ultimo=1

    this one has many pdf to have a look at including the results of a 500+ patient study which found over 90% participants had veinus abnormalities.

    I will keep looking to remember where the other studies showing that angioplasty is a safe procedure, even safer than other procedures that are being done. The majority of us realise that this is a new use for an older technique so we understand that we are still learning more about it. At first they were over balooning the veins and causing scarring essentially plugging the veins. This lead to a change in protocol in that they were using smaller baloons with higher pressures.
    The prevelance of CCSVI in other patients with different neurological conditions is not an impediment to the acceptance of CCSVI. Many dr.s are starting to think that CCSVI is the disease and MS, ALS, ADD, PARKINSONS, AUTISM and many others are just different manifestations of the same disease. We share similar symptoms with the afforementiond conditions.
    I know they say that the blood flow will find a different path in the body to regulate itself, but how can the other pathways be able to accomidate the blood flow to allow proper flow?
    All we want in canada is the RIGHT to have proper blood flow. We are even willing to pay for it out of pocket. The lack of proper follow up care in Canada is evidence of punitive measures by the medical societies. Apparently we, as pple with MS, are supposed to have all treatments approved by a neurologist or MS clinic??????

  25. Dear Warren,

    Thanks for the links. The first is a book, which I skimmed, but didn’t read because I really don’t know if plaquing reports from the 1830’s should be taken into account today.

    The second link is a tri-lingual journal, which is really fun to look at. What you failed to read was the conclusion of the four-person study on CCSVI, which is: “two of whom did not worsen.” So two out of four patients did not get worse but did not improve on CCSVI, still positive results but not a stellar support for the theory.

    The third link, your piece de resistance, did not work at all.

    At the end of your comment you seem to be associating all sorts of other diseases into the mix, and I really haven’t yet researched CCSVI for any of the other illnesses, so I will not comment. But I will say that when I find something that cures everything, I run away as fast as I can.

    In the final paragraph you seem to have me confused with the authorizing authorities of the Canadian healthcare system. I will agree with you that healthcare is a Titanic, and I feel your pain in terms of getting anything authorized these days.

  26. Dear Kendra,

    I saw the first Facebook page of the six doctors who have been reportedly treated with CCSVI for MS. Of the six, only one appears to be actively promoting the treatment. Perhaps the French doctor is as well, but my French is not good enough for an accurate translation.

    I did not say that abstracts, or indeed medical journals, are without flaw. And the body does work in mysterious ways. Fibromyalgia is still considered by some to be a mental condition, as are many other physical ailments. None of this supports your claim to be more knowledgeable about CCSVI than I am. Where are the two years of research you have done? I am still waiting to be educated.

  27. Yes, I am aware that the studies have shown anywhere from 0% to 100% correspondence to Dr. Zamboni’s theory. You are citing the one with nearly 100% correspondence, the only one of its kind. Other studies have found no correlation. Could you please post the other thirteen links? I’m not sure what is gained by telling me you have them without posting them.

    I am fond of medline. It is the international clearinghouse of medical information, with free abstracts of the material for the layperson and the medical person alike. I consider it highly flawed, but better than anecdotal evidence, and a wonderful place to delve into the riches of lost studies and interesting correlations. It is my playground.

    PS. Care to comment on the CCSVI.org article you presented me as evidence that says there is none?

  28. ps I don’t know if you realise that there are many people out there in cyberspace who call u a quack. With this kind of attack on people presenting any knowledge it’s not hard to see why. I wonder how much time you wasted attacking CCSVI. It really does make people wonder. Good luck in the future.

  29. Dear Warren,

    Gosh, did you find one of the ten thousand atheist skeptic blogs that attacked me in an organized effort two years ago? Yes, I do remember receiving death threats and computer viruses. I even remember having one of them pass out threatening notes to all my neighbors after dark. I fail to see how this is relevant to our discussion of the medical merits of CCSVI.

    I have read your material, and explained that it was unconvincing of your argument. Your reply is not a reply, it is some sort of strange tangent that I fail to follow. Is your assertion that because a group of skeptics attacked me that my point of view is invalid? Or perhaps you are merely insinuating that I am a quack? In either case, I again fail to see how my point of view would have any weight with you.

    But evidently it does. Please respond by providing more detailed evidence of your point of view on CCSVI. So far only one of those commenting has provided me with anything interesting that might change my point of view (hint: it wasn’t you). I await further evidence of your point of view. Let’s leave the personal attacks to the atheist hordes.

  30. LOL so it’s wrong for me to mention that your abrasive attitude towards someone who responds to your posts, but you can be little anyone who tries to bring a different point of view to your post. I see how it is now lol. So I see that you are ignoring the GRAS principle and only believe what you can read and others have thought of before you. I was merely pointing out that the attitude you have on your posts is very confrontentational to your readers and hence the term quack gets thrown around. I don’t think I’ll keep this going as you are very close minded and anything I say or no matter what studies I show you, you will find a way to belittle them. “Oh that Dr. didn’t use the specific instrument that I am used to so I don’t believe him.” No matter what someone says you will always have a reply because you are scared that someone might uncover that you are really an idiot who is unable to see past your diploma on your walls that wrap you up in a secure little world telling you that you are right and the rest of the world is wrong.
    Good day.
    WR

  31. Wow Warren,

    Rather than provide me with more than one study of four people, two of whom were not improved with CCSVI treatment, you’ve decided that I have an abrasive attitude and I’m confrontational. I’m also close-minded and it doesn’t matter how many studies you show me I’ll find a way to belittle them. I also evidently am an idiot.

    All of this is a personal attack, deflecting from you any need to provide me with any evidence of your point of view.

    Let’s take a step back. I didn’t go on your blog and attack your point of view. You came here, claimed to have evidence and are now complaining about my attitude when you don’t provide it.

    You have now spent more time attacking me as a person than you have supporting the cause of CCSVI as a treatment. Here’s the reality: you have no evidence of your point of view. According to the expert proponents of CCSVI.org, the definitive evidence of whether this treatment is effective is still not available.

    So personal attacks will not provide you with the victory you seek. However you view me, I require only that you provide what you promised me. As I noted in a previous comment, the third link you provided me was not functional, and it was the one that had the most promise in terms of the number of patients treated. Could you please cease the personal attacks and provide me with a functioning link?

    Thank you.

  32. http://www.functionalneurology.it/index.php?PAGE=number&ultimo=1

    here is the functioning link. I did not bother to reply to your remarks to the fact that pple in the study from the one study had pple with no improvement as it is well known in CCSVI circles that 1/3 of patients who had the procedure had remarkable results and another 1/3 had medium results and the last 1/3 had little to no results. What are the results for the DMD if you don’t mind me asking. those of us with the disease usually understand the risks of going under a routine procedure (just the use is different) we are constantly learning from it all the time. there are many people who underwent the procedure who had little to no results who say they would do it again. there have been some cases of people who are worse off after but MS is an unpredectable disease and we do not know the eventual outcome they would have suffered. The Neurologists claim that it is just a placebo affect, but come on 30 000 procedures world wide and the majority have had good results. By the way How many people who underwent the procedure have u personally spoken to face to face? I have spoken to many people. I know a quadrapolegic lady who is now able to move her arms a little bit, for the first time in many years.
    the reason i can spend all this time “Attacking you” as you say is that I have MS and all the medications and holistic treatments have done nothing for me so now I am unemployed and unable to work. these kind of replies take a long time for me to type up. the only reason i started posting on your website is that you were comparing a safe medical procedure to “Rotorootering your veins” since you publish your OPINION on a medical website I felt that you were, and still are, presenting bad information to the public. I suggest that if you do not want people “attacking” your use of the term rotorootering I suggest that you refrain from using that INCORRECT term.
    Once again I say Good Day
    WR

  33. Thanks for the functioning link. I see the positive results that were also reported by another commenter. If those were the consistent results, then the matter would be settled and CCSVI would be the standard of care. But as another abstract on your link points out: “A high prevalence of obstructive lesions, ranging from 62% to 100%, has been found by some teams in patients with MS compared with a low prevalence (0-25%) in controls. However, others have reported absence of these lesions or a lower prevalence (16-52%). This variability could be the result of differences in technique, training, experience or criteria used.”

    So if we don’t know how to evaluate CCSVI consistently, then how do we know which MS patients even have it? It throws doubt on the first, very positive study.

    I appreciate you efforts on this, but it is too early to say anything definitive about CCSVI. Maybe most vascular surgeons are missing the diagnosis, but maybe other vascular surgeons are seeing issues where there are none. Since there is little risk to a surgeon for doing the procedure, and not doing the procedure doesn’t make them any money, I would suspect that there isn’t a massive conspiracy to cover this up.

    Currently, I have been blessed with a number of patients with a Chiari Type 1 malformation. It involves the descent of the brain into the spinal column. Some patients are helped by the surgery, which involves opening the back of the neck and making a sling for the brain. But other patients are being told that they don’t have symptoms bad enough to justify the risks. A number of studies have found that Chiari Type 1 malformation occurs in a high number of healthy people and is simply a natural variant of how the spinal column is formed.

    According to your logic, since some patients have been helped, all of my Chiari patients should have the surgery. I simply must disagree that any medical intervention should be undertaken for all individuals. In the case of CCSVI, the jury is still out. I’m sure that won’t stop thousands more getting the procedure, and if it proves safe and effective long-term, then it will be happily absorbed into the medical treatment. It never really has been an alternative treatment, just a controversial one.

  34. honestly we with MS don’t see it as controversial. It’s more controversial to not have the Canadian government all over the studies to prove or disprove it. As i have said earlier there have been an estimated 30 000 procedures done world wide. If the canadian govt was keeping track of the canadian patients who have had this done they would have had enough evidence to dismmiss the Placebo effect. All we have ever wanted was the proper studies to be performed in a timely fashion and make it available on a compassionate basis to those in rough shape. I would have jumped in right away if I had the money as it is I am too poor so I have to wait, I am glad I can wait a few years for the studies to be completed, as long as they are proper studies involving the vascular experts. The canadian Minister of health was being told what to think by a team of “experts” not one of whom had any experience in performing the procedure. in fact i don’t believe there were any vascular dr.s involved.

    In the meantime many people have died from drugs rushed into market for MS.

    I have seen how far the procedure has come in the few years since it’s announcement on W5. Its getting better all the time. The govt is still dragging it’s rear and the college of physicians is refusing treatment to ms patients who have gone out of country. They even told a patient to go to the ms clinic to see about their chest pains????? There are standards that are being put into place for the scanning and the dopplar ultrasound I believe is not among them as it is entirely operator dependant. Apparently if they push too hard it can and will skew the results. I still have faith in that this procedure at the very least will get pple thinking about the standard of care for ms patients in Canada.
    WR

  35. A good list of studies:

    http://www.facebook.com/notes/alessandro-urticante/why-the-attacks-against-the-theory-of-dr-zamboni/447229621958177

  36. Dear Kendra,

    I have taken the time to log in to facebook, look at the site, use the site references, and the end result of your information is worse than what I have already said about CCSVI. Not only did one of your sources show a 1.6% chance of severe complications from CCSVI, it recommended continual ultrasound during the procedure to avoid blood clots. That study provided no information on any positive results from CCSVI. The Italian studies showed a positive correlation, but they couldn’t agree on the criteria and even in Zamboni’s home country there was serious conflict between the different centers. Finally, in the meta-analysis (the examination of other studies) they concluded: “Our findings showed a positive association between chronic cerebrospinal venous insufficiency and multiple sclerosis. However, poor reporting of the success of blinding and marked heterogeneity among the studies included in our review precluded definitive conclusions.” In one analysis there was no correlation at all, and in another there was no more CCSVI in M.S. patients than other patients with other neurological diseases.

    Please take the time to read what you are offering as evidence before you conclude it supports your point of view. All the abstracts were sited on the facebook page you provided as evidence of the effectiveness of CCSVI. I am including the abstracts below.
    J Vasc Interv Radiol. 2012 Jan;23(1):55-9. Epub 2011 Nov 15.
    Safety of endovascular treatment of chronic cerebrospinal venous insufficiency: a report of 240 patients with multiple sclerosis.
    Mandato KD, Hegener PF, Siskin GP, Haskal ZJ, Englander MJ, Garla S, Mitchell N, Reutzel L, Doti C.
    Source
    Department of Radiology, Albany Medical Center, MC-113, 47 New Scotland Avenue, Albany, NY 12208, USA.
    Abstract
    PURPOSE:
    To evaluate the safety of outpatient endovascular treatment in patients with multiple sclerosis (MS) and chronic cerebrospinal venous insufficiency (CCSVI).
    MATERIALS AND METHODS:
    A retrospective analysis was performed to assess complications occurring within 30 days of endovascular treatment of CCSVI. The study population comprised 240 patients; 257 procedures were performed over 8 months. The indication for treatment in all patients was symptomatic MS. Of the procedures, 49.0% (126 of 257) were performed in a hospital, and 51.0% (131 of 257) were performed in the office. Primary procedures accounted for 93.0% (239 of 257) of procedures, and repeat interventions accounted for 7% (18 of 257). For patients treated primarily, 87% (208 of 239) had angioplasty, and 11% (26 of 239) had stent placement; 5 patients were not treated. Of patients with restenosis, 50% (9 of 18) had angioplasty, and 50% (9 of 18) had stent placement.
    RESULTS:
    After the procedure, all but three patients were discharged within 3 hours. Headache after the procedure was reported in 8.2% (21 of 257) of patients; headache persisted > 30 days in 1 patient. Neck pain was reported in 15.6% (40 of 257); 52.5% (21 of 40) of these patients underwent stent placement. Three patients experienced venous thrombosis requiring retreatment within 30 days. Sustained intraprocedural arrhythmias were observed in three patients, and two required hospital admission. One of these patients, who was being retreated for stent thrombosis, was hospitalized because of a stress-induced cardiomyopathy.
    CONCLUSIONS:
    Endovascular treatment of CCSVI is a safe procedure; there is a 1.6% risk of major complications. Cardiac monitoring is essential to detect intraprocedural arrhythmias. Ultrasonography after the procedure is recommended to confirm venous patency and to identify patients experiencing acute venous thrombosis.
    Copyright © 2012 SIR. Published by Elsevier Inc. All rights reserved.
    PMID: 22088659
    BMC Neurol. 2011 Oct 26;11:132.
    Chronic cerebrospinal venous insufficiency in multiple sclerosis: clinical correlates from a multicentre study.
    Bastianello S, Romani A, Viselner G, Tibaldi EC, Giugni E, Altieri M, Cecconi P, Mendozzi L, Farina M, Mariani D, Galassi A, Quattrini C, Mancini M, Bresciamorra V, Lagace A, McDonald S, Bono G, Bergamaschi R.
    Source
    Department of Public Health and Neurosciences, IRCCS C, Mondino National Institute of Neurology Foundation, University of Pavia, Italy. stefano.bastianello@yahoo.it
    Abstract
    BACKGROUND:
    Chronic cerebrospinal venous insufficiency (CCSVI) has recently been reported to be associated with multiple sclerosis (MS). However, its actual prevalence, possible association with specific MS phenotypes, and potential pathophysiological role are debated.
    METHOD:
    We analysed the clinical data of 710 MS patients attending six centres (five Italian and one Canadian). All were submitted to venous Doppler sonography and diagnosed as having or not having CCSVI according to the criteria of Zamboni et al.
    RESULTS:
    Overall, CCSVI was diagnosed in 86% of the patients, but the frequency varied greatly between the centres. Even greater differences were found when considering singly the five diagnostic criteria proposed by Zamboni et al. Despite these differences, significant associations with clinical data were found, the most striking being age at disease onset (about five years greater in CCSVI-positive patients) and clinical severity (mean EDSS score about one point higher in CCSVI-positive patients). Patients with progressive MS were more likely to have CCSVI than those with relapsing-remitting MS.
    CONCLUSION:
    The methods for diagnosing CCSVI need to be refined, as the between-centre differences, particularly in single criteria, were excessively high. Despite these discrepancies, the strong associations between CCSVI and MS phenotype suggest that the presence of CCSVI may favour a later development of MS in patients with a lower susceptibility to autoimmune diseases and may increase its severity.
    PMID: 22029656
    CMAJ. 2011 Nov 8;183(16):E1203-12. Epub 2011 Oct 3.
    Association between chronic cerebrospinal venous insufficiency and multiple sclerosis: a meta-analysis.
    Laupacis A, Lillie E, Dueck A, Straus S, Perrier L, Burton JM, Aviv R, Thorpe K, Feasby T, Spears J.
    Source
    Keenan Research Centre, Li Ka Shing Knowledge Institute of St. Michael’s Hospital, Toronto, Ont. laupacisa@smh.ca
    Abstract
    BACKGROUND:
    It has been proposed by Zamboni and colleagues that multiple sclerosis is caused by chronic cerebrospinal venous insufficiency, a term used to describe ultrasound-detectable abnormalities in the anatomy and flow of intra- and extracerebral veins. We conducted a meta-analysis of studies that reported the frequency of chronic cerebrospinal venous insufficiency among patients with and those without multiple sclerosis.
    METHODS:
    We searched MEDLINE and EMBASE as well as bibliographies of relevant articles for eligible studies. We included studies if they used ultrasound to diagnose chronic cerebrospinal venous insufficiency and compared the frequency of the venous abnormalities among patients with and those without multiple sclerosis.
    RESULTS:
    We identified eight eligible studies: all included healthy controls, and four of them also included a control group of patients with neurologic diseases other than multiple sclerosis. Chronic cerebrospinal venous insufficiency was more frequent among patients with multiple sclerosis than among the healthy controls (odds ratio [OR] 13.5, 95% confidence interval [CI] 2.6-71.4), but there was extensive unexplained heterogeneity among the studies. The association remained significant in the most conservative sensitivity analysis (OR 3.7, 95% CI 1.2-11.0), in which we removed the initial study by Zamboni and colleagues and added a study that did not find chronic cerebrospinal venous insufficiency in any patient. Although chronic cerebrospinal venous insufficiency was also more frequent among patients with multiple sclerosis than among controls with other neurologic diseases (OR 32.5, 95% CI 0.6-1775.7), the association was not statistically significant, the 95% CI was wide, and the OR was less extreme after removal of the study by Zamboni and colleagues (OR 3.5, 95% 0.8-15.8).
    INTERPRETATION:
    Our findings showed a positive association between chronic cerebrospinal venous insufficiency and multiple sclerosis. However, poor reporting of the success of blinding and marked heterogeneity among the studies included in our review precluded definitive conclusions.
    Comment in
    CMAJ. 2011 Nov 8;183(16):1824-5.
    PMID: 21969411

  37. Dear Warren,
    Thanks for the video. I found a shorter one on youtube:http://www.youtube.com/watch?v=kcKmyYgUTFs. Dr. Hubbard has a different theory than Dr. Zamboni, where he talks about white blood cells scavenging broken down nerve cells that fell apart because of backed up toxins in the brain. I am happy his son got better, but I think he’s working as an apologist for why the treatment was effective. I think at this point we’re still talking about if the treatment is effective, not why it is effective. It’s interesting, and I like to theorize with the best of them, but we really don’t know what is going on. I’m also really familiar with the “toxin” idea in what I do every day, and I can say that unless you label your toxin, you don’t get past the M.D.s with any theory.

  38. Dear Warren,

    I keep hearing the 30,000 procedures number, but I’m not sure where it’s coming from. Obviously there aren’t exactly 30,000, because more are being done, but I haven’t seen the number anywhere in the medical literature I’ve been looking through. Is it just an estimate, or is there somewhere someone has compiled 30,000 procedures? That would be an impressive database, especially if they tracked results.

  39. My very first post here I said the 30 000 estimated world wide procedures. There have not been too many concrete numbers on how many procedures have been performed as it is still fairly early in the life of CCSVI, it’s only been around for approx 3 years. the only results we see coming out this early are very small studies and are suspect in who was running the studies and the methods used. there are studies underway as we speak and I am hoping to see some concrete evidence one way or the other soon. In the meantime based on everything i’ve learned and all the patients I’ve spoken to first hand, I am convinced that there is something to this theory. Finally us MS sufferrers have hope that is not in the form of a drug. We tend to feel that there are enough testimonials to say that there is something positive here. I and many others will continue to have hope until the very end when all the nay sayers, conspiracy theorists and those who support whole-heartedly can finally agree on wether it works or not.

  40. Dear Warren,

    From your experience, is Dr. Hubbard’s idea about degenerative breakdown closer or do you think the backup of iron as an inflammatory agent is enough to explain the issues? Also, and I have yet to see anything dividing these into two groups, it seems like progressive MS patients do better with the procedure that relapsing-remitting.

    Could we be dealing with two different illnesses here? I’ve always been curious about progressive because it seems to follow a very different course than relapsing-remitting. My RR patients can have years where they are relatively well, gradually descending into disability. Progressives I have thought of as “hitting a wall” or having a cascade event that sends their body into a downward spiral. If/when CCSVI is globally accepted, it still raises the question of where the plaquing came from, and why this particular group of people gets neurological symptoms while other people with plaquing seem healthy.

  41. The way Dr. Hubbard had explained it was along the lines that I am familiar with having to do with the physics of fluid dynamics. the blood is hanging around in the brain longer and being depleted of neutrients and oxygen and that is killing the olygadendracytes (I have no idea how to spell it) and the immune system comes in to clean it up. It is my understanding that relapsing remitting patients show the most improvement and the secondary progressive show the little improvement. It, in my mind at least, could very well be due to the amount of damage that has already been done by years of running rampent in the brain. There is a stem cell treatment that has shown to be effective and they now know how to trigger the stem cells to repair the brain, but if the base problem of lack of neutrients/oxygen in the brain it’s just going to keep on happening.

    i know that RRMS has flares and almost a complete recovery for a while until the next flare. This is the one I am most familiar with due to me having this one. the others tend to have a gradual accumulation of disabilities that do not get better.

    there are people I know personally who have Secondary Progressive MS who have had the veinus angioplasty and have shown some improvement and they are working hard to keep that improvement.

    the long term effects of this treatment are unknown but the majority of us with ms would trade whatever comes down the road for whatever normality could be made available to us. A good number of us see this as our best chance (that’s those of us who have done our homework and researched it) There have been other neurological diseases that they have found CCSVI in as well. I know that parkinsons patients have had veinous angioplasty and have had some improvement so it is becoming a common idea that CCSVI is the disease and all the other neurological diseases are just different manifestations of the same symptoms.

    When I speak to people with parkinsons, als, adhd we share some very similar symptoms.

    I will try to hunt down the treatment of the parkinsons patients for you.
    ps. there are many diseases being revealed to have vascular issues related to them ie. the dr. in the us who is claiming to cure type 2 Diabetes through surgary on veins in the brain.


    ok this is just a news report but i’ll keep on looking. have to try to remember where i read the study a year or 2 ago????

  42. http://www.medscape.com/viewarticle/760923?src=stfb?src=stfb

    just found it today 🙂

  43. You asked for studies, so I gave you a list of studies that were listed that I could find. I don’t care too much about the studies myself, because I know they are flawed and ever person, with or without a diagnoses, is going to have a whole different set of health issues that may not have been taken into account. I prefer to go by what I’ve seen it done with my own eyes. My friend’s mother, in a wheelchair for 7 years, can now read the clock from across the room and feeling back in her right side, immediately after the procedure. Within months, she was able to write with her right hand again, and put on makeup again. She is still in her wheelchair, yes, but the woman has been sick for a long time. Her daughter then started to exhibit signs of MS, but without any MS diagnoses, she went off to Costa Rica and got tested for CCSVI. Sure enough her veins were blocked and she had the procedure done. Right after, she was able to walk backward again with out falling. Another friend of mine had the procedure, her cog fog lifted right away and she was able to get around more out of her wheelchair and lost a bunch of weight. If there is nothing to this, this wouldn’t be causing such chaos in the news. One day, hopefully our answer will have better light on how this is happening, but until then, I still stand by to say that your article and your attitude are irresponsible on this topic.

  44. Dear Kendra,

    Your personal stories are very powerful, and I truthfully have begun considering discussing CCSVI with every MS patient, simply as a screening test and certainly as another option when other treatments fail.

    That said, realize my request for studies and my resistance to the treatment is not irresponsible. It is a practitioner asking to have the appropriate responses ready for the insurance company, the neurologist, the hospital administration, the Medicare staffer, the social worker, and all the others who will ask me to justify my recommendations based on the available medical literature.

    As someone who has seen results and wants this available to others, you need to care about what the literature says about CCSVI. All we need are two major meta-analyses (studies of studies) that find it has no significant benefit for the procedure to be only available to the wealthy.

    As someone who is reserving judgment about CCSVI, I can only mention it to patients now. It will be shot down by their neurologist or other specialist. Even with solid evidence it is an uphill battle to change minds. Without solid evidence, it is much harder.

  45. It is obvious that the original blog post that started this diatribe was not well thought out or researched.The author seems anxious to make excuses for his lack of foresight before posting anything this controversial. Had he given his opinion without sarcasm we all likely would have passed on it as we do most other communications that are meant to shock and awe, then move on.

    Why do his research for him? Personally I have too much on my plate to continue to argue, claim and counter claim. I would think a doctor wouldn’t have time to indulge in such a fruitless waste of time.

    All of you appear to be as impassioned as I am about CCSVI advocacy. There are many places who need your input more than another naysayer.

  46. Dear Linda,

    No offense, but you have yet to provide me with: 1) a list of your thirteen medline studies you claim to have, and 2) any supporting comment for the fact that your choice of advocacy site (CCSVI.org) has a more negative view of CCSVI than I do.

    If you want to move on, please do so. But don’t post your lack of interest on my blog. It just seems rude and insincere. Also claiming I am a naysayer rather than someone interested in the truth is extraordinary given the amount of time I have given your group in following up all of your links and websites.

  47. Wow, thanks Warren. That’s a great study. It’s still open, but it definitely points to positive results in the majority of patients. It’s really hard to square that study with the one that appears next to it, which is “Putting CCSVI to rest” http://www.medscape.com/viewarticle/742590. Since one study is really interventional radiologist based and the other is a neurological topic, I’m really seeing the turf warfare clearly in this situation. The interventional radiologists are going with the procedure, which is right up their alley as a profession. The neurologists as a group are not really comfortable with the procedure on a very basic level, and they really resent the idea of the radiologists “taking over” their patients. I would think that someone wanting the procedure done would find a more open discussion with a radiologist than with their neurologist. But most insurances are still going to want the neurological referral before you see the radiologist.

  48. unfortionatly you are correct in that there is a turf war out there. I was having a relapse last year and knowing what treatment works best for me I was forced to have a lesser treatment. I had all the information but since I am not a Dr. I had no choice but to take the Neurolagists dosage and schedule of methylprednasone. I have tried to find a Dr. here who would listen to me and provide the treatment I require and know works best for me but was always told I have to go through my Neurolagist, who during my appointments barely looks at me. People here in Canada have been told to go through the MS clinic to have treatment for almost anything outside of MS. One patient I know was denied a visit to a cardiologist when they were suffering with chest pains and told to go see the MS clinic. In Canada we are being abandoned by the health care system and many have lost faith in it.

    Linda was right in that the original post was what caught my attention. But I have found since then that you seem to have come around and I no longer consider it my “DUTY to educate the uninformed” Now I consider the sharing of ideas to be benificial to your readers.

    Cheers
    Warren

  49. I’ve had the same issue here in Maine. The primary is supposed to be running things, but they completely turn over patient care to the specialist. Is it possible to go directly to an interventional radiologist in Canada without the neurologist? Here in Maine we might do it by getting the primary care doctor to refer directly to the interventional radiologist for “assessment,” with the understanding that the radiologist could also treat if necessary.

    I’ve also had some luck referring directly to the specialist I want, but they tend to support one another’s assessments rather than examine the case for possible changes in direction. Just diagnosed EDS and sent it out for confirmation from the rheumatologist. No assessment, no labs. He just sat there and told this hypermobile woman with a family history that she had arthritis. Very frustrating. Like sending a car out to get a brake job and having it come back with new window wipers.

  50. http://www.medpagetoday.com/Neurology/MultipleSclerosis/32604

    so the fda is willing to give the go ahead on drugs that have killed far more people than angioplasty has but because it threatens the drug companies bottom line it is deemed DANGEROUS.

  51. I had almost forgotten this unfortunate exchange until it popped up on my things to forget list.


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