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“CCSVI” Proven to be a Figment of Zamboni’s Imagination; “Liberation” for MS is a sham

Posted by Colin Rose on October 31, 2010

One has to feel a little sorry for poor Paolo Zamboni, the leg varicose vein surgeon whose wife got multiple sclerosis and who convinced himself that the problem must be in the neck veins analogous to stasis ulcers in the legs. No doubt he was well-intentioned but he was also very naïve. He was willfully ignorant of the powerful effect of faith healing in MS patients, including his wife, a phenomenon observed with every purported instantaneous “cure” for MS that has been inflicted on desperate patients over the last hundred years. Thousands of MS patients have travelled to clinics in such countries with lax medical regulations such as Poland, Italy, Kuwait, India, Bulgaria, Mexico and Costa Rica with unscrupulous doctors who perform the “liberation” for non-existent blocked veins for $10,000 or more. There are many YouTube videos describing instantaneous relief of subjective symptoms, like brain fog, cold feet and lack of dreaming. Some patients arise from their wheelchairs, just like those who go to Lourdes or St. Joseph’s Oratory. Zamboni created a monster that even he is powerless to stop. Initially he was recommending that everyone with progressive MS should have “liberation” on “compassionate” grounds but he has seen the writing on the wall and is now recommending that “liberation” not be done outside of controlled trials. That has not stopped thousands of medical tourists determined to be “liberated.”

There are now three good studies (see below)in MS patients and controls using sophisticated imaging techniques showing that “CCSVI” as a pathology does not exist. There are normal variants in venous anatomy in at least half of the population which have no pathophysiological significance. “CCSVI” is just another name for normal venous variation in neck veins. Only when venous pressure is increased can blockage of veins cause pathology. Of course, Zamboni never described his technique for diagnosing pathological “CCSVI” so that other investigators could repeat it and he can always claim that only he can see it. He always knows that the patient has MS before diagnosing “CCSVI”. That is not science, it’s shamanism.

These papers prove what I predicted about one year ago when CTVglobemedia announced a “breakthrough” in treatment for MS. If “CCSVI” doesn’t exist then the “liberation” treatment, dilation of purportedly significantly blocked neck veins, is a sham and there is no point in doing controlled trials of it, as I also recommended in my first post on the subject.

None of this is likely to stop the likes of Marien Simka in Katowice, Poland who makes at least $500,000 per week doing “liberation”.

Here is the latest and most important paper using contrast-enhanced magnetic resonance venography with blinded interpretation in normals and MS patients: PDF File Download

 

 

 

CCSVI

Lobby of the Qubus Hotel in Katowice in September 2010. Marien Simka's clinic was grossing at least $500,000 per week doing "liberation".

CCSVI

Medical tourist MS patients in the lobby of the Qubus hotel in Katowice on their pilgrimage to get the "liberation" treatment

15 Responses to ““CCSVI” Proven to be a Figment of Zamboni’s Imagination; “Liberation” for MS is a sham”

  1. beveikrimtas said

    Unfortunately the battle to stop this CCSVI “thing” is designated to be lost from the beginning.

    Hilarescere Foundation, born by Intesa Sanpaolo Bank (read Big Guys from Turin, you know what that means, who are Big Pharma and Healthcare Providers’ shareholders worldwide, but esp. in Europe) will do everything to create a brand new (and extremely profitable) medical market for IRs at the expense of MS people. The profit would be equal to current profit from MS medications. Looks like a “win-win” situation for Big Guys but not for MSers.

    The irony is that MSers became a big part of that, blindly ignoring all red flags poking from every corner of CCSVI. A little knowledge is a dangerous thing, it was always been that way, but this continuous brainwashing must be considered as a crime.
    I can’t imagine any other medical field where an Entertainment CEO (Beal) and a Geologist (Embry) loudly do encourage people with devastating disorder to go for this absolutely unproven and hazardous treatment, manipulating on their desperate wish and hope to get better, and they get away with that.

    The recent death of 35 years old MSer after CCSVI treatment was muted by all “CCSVI promoters”, but more deaths will come. Browse MS forums and you will find dozens of MSers who became worse after this “Liberation” procedure (and this is only beginning, the follow-up is still short, for majority it is less than 1 year), but only positive (short-term) experience were posted everywhere, and re-posted many times on hundreds of FB pages and blogs.

    I’ve compared Dr. Zamboni with Dr. Mengele in one of my previous comments, well, I’ll take it back.

    The size of the scam and the methods of propaganda deserve him a “better” comparison, not less than “famous” Joseph Stalin. Don’t talking about their similar neurologic symptoms here, but about their similar level of insanity.

    BTW, did you see Dr. Hubbard‘s last interview – he talked about “preventive CCSVI procedure” (!), airing this idea for the very first time. Of course he forgot to mention that he is having the same narrowing of jugulars as his son, but he is MS symptom free; my bet is that he will never do such operation on himself.

    Crazy and scary times, God save us all!

    BR

  2. moreconcerned said

    Is there a source for that $500,000 dollars a week or was it just hyperbole.

    • Colin Rose said

      I know from talking to the desk clerk at the Qubus Hotel in Katowice that at least 100 patients per month stay there while getting their “liberation”. We also know from patients who have been there that he charges about $10,000 per patient. That work out to $500,000 per week. But it’s worse than that. That’s just one hotel. Other patients say that he does ten “liberations” per day, five days per week. So that’s more than $one million per week. Simka’s expenses can only a very small fraction of that. Faith healing is an extremely profitable business. Much more than the pharmaceutical business which Zamboni zealot conspiracy theorists blame for attacks on Zamboni’s hypothesis.

  3. rob1992 said

    Glad to see you have a lot of followers.

    EuroMedic Poland does 6 patients per day typically. They average 28 per week. Their complications are related to allergic reactions to the Anti-clotting drug that is administered. They have performed approximately 900 procedures in 8 months. That is just over 100 per MONTH not per week. What is WEAK are your facts.

    The procedure is 6900 Euros with a refund if no stents are placed. Of the six of us done the day of my procedure, none of us received stents. They were deemed un-necessary by the doctors. Are they gouging their patients? Why wouldn’t they just maximize their revenue. The Qubus hotel charges approximately 150 zl or or CAD 60 per night.

    In the prescreening with MRI and dopler ultrasound they found no blockage in my veins. In the venogram they did. The rib cage and collar bone can and in my case did obscure the prescreening imaging. Did your quoted studies follow the procedures set out by Dr Zamboni and his team. It also amazes me how you quote from studies that worked with 76 and 41 subjects but Zamboni is a quack for working with only 70 + subjects. What makes your quoted studies any more reliable given that Zamboni’s was essentially a phase 1 trial and was never intented to be randomized and blinded. Were yours? And your drug companies treat ONLY symptoms, Zamboni’s treatment is either symptom or maybe cause. One on the latest drugs causes cancer. Tysabri causes fatal brain infections. Zamboni’s treatment is not perfect but the risk are quantifiably similar.

    Don’t get holier than thou with we who have MS. Your just jealous that 9 million in potential research dolars just went to Poland alone, and India, and Germany, and Bulgaria and wherever else rather into your pet projects.

    Tough

    • Colin Rose said

      Whether he does 28 or 50 per month Simka is still clearing much more than the CEO of any drug company.

      How much is the refund if no stents are used?

      As I explain in my first blog on Zamboni

      https://medicalmyths.wordpress.com/2009/11/24/the-zamboni-myth-ccsvi-surreal/

      injections of contrast into large veins can be manipulated by position of catheter, and direction and speed of injection to show just about any pattern one wishes.

      In the trials I quoted those interpreting the data were blinded to the diagnosis. Zamboni wasn’t. He can only diagnose “CCSVI” with Doppler when he knows the diagnosis.

      The drugs for MS on the market have been shown to slow progression of the disease in randomized trials; they don’t primarily treat symptoms. Drugs have side effects because they have an effect on the disease but can also potentially upset other biological processes. Drugs available at present are not silver bullets that only affect the disease.

      “Liberation” ONLY treats subjective symptoms, highly susceptible to faith healing; there is no controlled trial showing that it slows progression of plaques.

      If Zamboni only did a “phase I” trial why are thousands of patients demanding “liberation” before any blinded randomized trial?

      If a procedure like “liberation” has no proven benefit but some risk then the risk/benefit ratio is infinite. No so with the available drugs.

      I am not jealous of anyone. I have no connection with any drug company. I am only trying to save desperate patients from wasting their money on charlatanry.

  4. adaskothebeast said

    The question is how neurologists came up with protocols from a neurologist’s perspective in only a few months.

    I would hope, they would take the time to verify facts and not mislead the public as their extremely similar articles did.

    Dr. Zamboni answered to Doepp “study”

    Regarding ‘‘No Cerebrocervical Venous Congestion in Patients with Multiple Sclerosis. Intraluminal Jugular Septation’’ Paolo Zamboni, MD

    I read with interest the article titled ‘‘No Cerebrocervical Venous Congestion in Patients with Multiple Sclerosis’’ by Doepp and coworkers.1 Contrary to their conclusions, I believe that the authors’ results are a further validation of venous flow irregularities in multiple sclerosis (MS) patients.

    One of the major regulators of cerebral venous outflow is posture, due to the gravitational gradient between the cerebral parenchymal veins and the base of the neck (␣30mmHg).2 The authors demonstrate a much larger change in blood flow volume in normal subjects compared to MS patients when the subjects go from a supine to an upright position. They find a change of 128ml/min and 56ml/min for the right and left sides, respectively, for MS patients. But they find a much larger change of 266ml/min and 105ml/min for their normal subjects. This result actually suggests the presence of chronic cerebrospinal venous insufficiency (CCSVI). Possible causes include intra-luminal septum, membrane, and immobile valve affecting the hydrostatic pressure gradient in the upright position. The presence of such blockages in the extracranial and extravertebral cerebral veins has been proven also by using catheter venography, the unquestionable gold standard in medicine.3,4

    There was a trend toward significance (0.06) when comparing the mean global cerebral blood flow (CBF) in MS patients with that in controls. However, the level of significance is under- estimated by the low control sample, 20 versus 56 patients. The reduction in CBF in MS, meaning in practical terms stasis, might become significant by simply increasing the control sample.

    Both the above-reported results correspond with the reduction in CBF and in cerebral blood volume with increased mean transit time, assessed by means of magnetic resonance imaging (MRI) perfusion study.5

    The authors failed to demonstrate CCSVI through the assessment of the criteria originally proposed by our group. However, it seems the latter were not precisely assessed. For instance, the authors exchange the parameter for defining stenosis we used in angiographic studies (>50% lumen reduction) with those used in Doppler ultrasonography. In addition, the frequent detection of intraluminal jugular septation is not described by the authors.

    The latter is the most common cause of flow blockage, and can only be diagnosed with high resolution ultrasonographic probes capable to explore the jugular in the supraclavicular fossa (Fig. 1) 3-4. Clearly, a complete understanding of the system is required before drawing conclusions about the lack of venous abnormalities, and this requires ultra- sound, MRI, and catheter venography. This underscores the urgency of establishing an internationally accepted protocol. In the attempt to achieve this cultural osmosis, my group is available to travel to Berlin and rescan with German colleagues the entire series by the means of the proposed methodology.

    FIGURE 1: High resolution B-Mode image of the internal jugular vein (IJV), in longitudinal access. An intraluminal septum/malformed valve (arrow) causing a significant stenosis, with flow block and increased resistance at the junction with the brachiocephalic venous trunk (BCT), is showed. Intraluminal septation is the most frequent stenosing lesion in course of CCSVI and does not involve the reduction of the vessel cross-sectional area. It can be detected by the means of a probe capable to explore the supraclavicular fossa.

    Potential Conflicts of Interest

    Nothing to report.

    Zamboni P.

    Vascular Diseases Center, University of Ferrara, Ferrara, Italy

    References

    1. Doepp F, Friedemann P, Valdueza JM, et al. No cerebrocervical venous congestion in patients with multiple sclerosis. Ann Neurol 2010; DOI: 10.1002/ana.22085.

    2. Gisolf, J, van Lieshout JJ, van Heusden K, et al. Human cerebral venous outflow pathway depends on posture and central venous pressure. J Physiol 2004;560:317–327.

    3. Zamboni P, Galeotti R, Menegatti E, et al. A prospective open- label study of endovascular treatment of chronic cerebrospinal ve- nous insufficiency. J Vasc Surg 2009;50:1348–1358.

    4. Zamboni P, Galeotti R, Menegatti E, et al. Chronic cerebrospinal venous insufficiency in patients with multiple sclerosis. J Neurol Neurosurg Psychiatry 2009;80:392–399.

    5. Law M, Saindane AM, Ge Y, et al. Microvascular abnormality in relapsing-remitting multiple sclerosis: perfusion MR imaging findings in normal-appearing white matter. Radiology 2004;231:645–652.

    DOI: 10.1002/ana.22152

    LETTER VC 2010 American Neurological Association

    Source: Annals of Neurology 2010 Nov 8 © 2010 American Neurological Association & Pubmed PMID: 21061390 (11/11/10)

    • chiefumtaga said

      To my mind Dr. Zamboni’s letter seems like a jargon jumble (along the lines of if you can’t blind them with brilliance baffle them with b__s__t). He does not address the question raised not only by Doepp but Sundstrom and Wattjes. Where are these constrictions and refluxes in the venous anatomy that can only be seen by Zamboni and his acolytes?

  5. Colin Rose said

    Zamboni has never published his method for diagnosing “CCSVI” using any technique so that other investigators can reproduce it. So how can he complain that the data of Deopp, et al. was not “precisely assessed”? Zamboni has also said that in order to diagnose “CCSVI” it is necessary to go to Ferrara and take a course he gives using a special Doppler machine, sold by a company with which he is associated.

    The bottom line is that Zamboni can only diagnose “CCSVI” when he already knows the the subject has MS. No one has ever shown that “CCSVI” can be reproducibly demonstrated when the observer is well-blinded to the diagnosis of the subject.

  6. moreconcerned said

    Wouldn’t Zamboni’s affiliation with esaote be a conflict of interest?

  7. adaskothebeast said

    i try to imagine what if vermiform appendix treatment had to be revealed second time in history by double blind procedure ]:->
    how many more should die, how many years must pass to accept new facts and theories (probably up to empty warehouses from old not working drugs)

    170 years of history http://ccsvialliance.org/index.php?option=com_content&view=article&id=58&Itemid=65

    shame on you medicine people

  8. perwest said

    Facts is that MS-people have less bloodflow through their brains. Last confirmed on a meeting sponsored by the Sclerose-society here in Denmark, where the head of the neurological society in Denmark, Per Soelberg Soerensen spoke about CCSVI, and that he also didn’t believe the philosophy would have any future in the treatment of Sclerosis.

    According to PSS, the minimized flow was coursed by damaged braintissue, and as a result, the brain in itself called for less blod, lead through the arterias.

    To me, it seem very logical, that if we accept that the brain is the most important organ, provided to the body of all mamalian it, unlike the neurologes, prioritates it self mostly, and do what brains has to do, to lower the pressure led to its tissue.

    This is done by lowering the hartbeat, just to make sure that the pressure will not reach a critical level, and consequently cause brain hemorrhage because of overload on the blood-brain-barrier.

    And this is probably what happens, to start the MS-sequence. The barriere leaks blod with iron and CD-8+ T-cells out through the myelin.

    This would also fit very well with the MS-sympthoms, cold hands and feets because unfortunatly we don’t have an extra pump to manage the auxiliary bloodflow in our body.

    10 billion $ pro year to medical treatment. And the largest lobby in the US is the medical lobby.

    I can’t help wondering if this site is an examble of their efford to stop any progress in finding a reel cure for many of the diseases related to damaged nerves in our brain?

    It would be very easy just to measure the bloodflow in the four arterias that leads blood to our brain, and then find the amount of flow. If MS-people have less bloodstream than the controlgroup, then something is wrong, and as a consequence, the arterial very plastic venouesystem will have more narrowed appearance, and probably show less diameters in the whole vascular apperance.

    If this is not the case, then it must be because there is something blocking the bloodflow, and then we are back to Zambonis teory about blocking of veneus.

    The mainquestion to be veryfied is. How much blood is led to the brain of a sclerosepatient?

    Here in DK, tests are going on, where patients recieve EPO to find out if more oxygen to the small mitoes might help.

    I heard a quote the other day. Einstein: Imagination is more important than knowledge.

    Maybe some of the neuroes should start imagining what also could show up to be the truth, other than just the small segments they have learned in their study.

    After Hippocrates died, his pupils, studying medicine have fought to share the amount of patients, so everybody could make a living out of their work.

    This have resulted in the circumstances for todays patients, that if put into some doctors area of medicine, no one else is allowed to treat this patient.

    Hope any understands my danish/english.

    Maybe it is time to change their ways in the lobby, and end the 170 years long endless medical research into the mysterious disorder of mine.

    http://www.jameslindlibrary.org/pdf/testing-treatments.pdf

    Talk about waste of money, I groumble…

  9. ccsvi1234 said

    CCSVI has changed my life17

    Jul

    My name is Philip and I live in Scotland, I am 57 years old and have had MS for 11 years.

    Since 2005 things had got worse and I had to give up my physical work farming and building, suffering from constant fatigue, no feeling in feet, legs and other areas, lots of double vision and a great intolerance to heat and light, bowel and bladder urgency etc. Fortunately for me I have had no walking difficulties, except fatigue.

    I did not want to take the drugs the neurologist suggested and instead started using the Hyperbaric Oxygen Chamber (HBOT) at my local MS Therapy centre. This was for me fantastic. The double vision I had for nine months diapered after 5 sessions, and I was able to sleep through the night for the first time in years, as I did not need to get up five or six times for a pee.

    Although the hyperbaric had made great changes in the way my ms was managed, I still had fatigue, bowel urgency, little or no feeling in limbs and I could not close my left hand.

    Then I read about CCSVI and I could see the logic of it as I had such huge benefit from HBOT. I did hundreds of hours research on google,reading up medical papers and found some as early as 1839 talking about MS lesions showing altered vasculature, a experimental study in dogs published in 1935, claiming when the cerebral veins were artificially blocked, lesions developed that were strikingly similar to ms lesions. I found dozens of testimony`s from people who have had the simple angioplasty to their Jugular and Azygos veins and had mostly found some relief of their symptoms.

    I must have this treatment. I find that it can only be done privately and find excellent facilities are available in many countries around the world. I sign up for the treatment package through the Essential Health Clinic in Glasgow (the only place in the UK at the time).

    I go for CCSVI screening (non-invasive Doppler ultrasound scan) and am found to have faulty Jugular valves which is causing blood reflux and malformations of my Jugulars. I need to have a simple Angioplasty to correct this.

    The procedure was to be carried out on the 15th December. We meet the vascular surgeon the day before, and he talks us through the procedure, then I have cognition tests (to be repeated 6 months later).

    I receive a small amount of sedative and local anesthetic and away they go. The surgeon tells you what is happening at all times and I did not feel a thing when he inserted the balloon catheter, until it reached the Jugular vein valve on the right side. When he inflated the balloon I felt a very small pin prick type pain behind my ear and a popping as if you had just cleared your eardrums in an airplane, as quick as that the Jugular gets good blood flow. The left does not clear as easily and he uses a cutting balloon to cut a slice off the valve, again popping and tiny pin prick pain lasting milli-seconds and again job done. On to the Azygos vein no pain simple expansion of vein and good blood flow all round. On the table for approx 70 minuets and back into recovery for an hour.

    Results are fantastic. I can close my hand that I could not close before, less fatigue, all the feeling back in my feet, legs and hands. Much better eyesight, no more intolerance to heat and light, much better bladder and bowel control and now very little indigestion and I have had no problems swallowing(trouble for a couple of years – very frightening). I am able to work again and have even been able to shovel two and a half tons of gravel around my new pond !

    If this is a placebo effect ( I don’t believe it is ) then I say bring it on.

    If the plumbing is blocked get a plumber to sort it out.

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