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The Zamboni Myth: Why “CCSVI” is Surreal

Posted by Colin Rose on November 24, 2009

“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.

Extraordinary claims require extraordinary evidence.
Carl Sagan

“Fraud and false­hood only dread ex­am­i­na­tion. Truth in­vites it.”
Samuel Johnson

The plural of anecdote is not data.
Joe Schwarcz

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This story has nothing to do with lifestyle diseases but it is valuable in showing the creation of a medical myth in real time. Usually the sort of papers published by  Dr. Paolo Zamboni would have been rapidly relegated to the dumpster of science but this myth received a huge boost when two reporters working for CTVglobemedia, André Picard and Avis Favaro, usually quite rational, published a story and did a short documentary on it, calling it a “breakthrough” and related breathless anecdotal stories of dramatic “cures”. Thousands of MS patients and their relatives in Canada became convinced that Zamboni’s “treatment” was the miracle they had been waiting for. Blogs were full of conspiracy theories and indignation that drug companies had suppressed this surgical cure and many demanded funding from MS charities and government to make the “liberation treatment” available to all MS patients. Even Brother André, of St. Joseph’s Oratory fame, the miracle worker canonized in 2010, who cured with holy oil, imbued with the healing power of St. Joseph, would have been impressed. The Vatican’s Theological Commission for the Causes of Saints has declared “scientifically unexplainable” at least one of the thousands of healing miracles attributed to Brother André. I hereby nominate Paolo Zamboni for consideration for canonization based on the hundreds scientifically unexplainable miracles attributed to him and his acolytes.

Brother André, canonized on October 17, 2010. The Vatican has determined that two of his miracle cures have no scientific explanation. Has the Vatican heard of Dr. Zamboni?

Dr. Zamboni has also performed miracles with no scientific explanation.

The Zamboni myth is also a good example of a surgical procedure that is “tested” on a few patients, proclaimed as a cure with no controlled trial, and then gets done on thousands of patients at great cost. Every few years the same thing happens. We have written about coronary bypass, coronary angioplasty and bariatric surgery. Why do surgeons have this power to ignore science? If one wants to sell a drug for treating a disease, one has to test the drug in controlled trials in animals and humans, testing that takes years and many millions of dollars, to prove it is safe and effective. Not for surgical procedures touted to be a cure for whatever disease. As long as a new procedure is not obviously killing most of the patients it is used on, surgeons can do as many as they want with no restriction. Why the difference between drug treatments and surgical treatments? Maybe because surgical treatments, like blood-letting of the past that killed thousands of patients, maintain a special mystique, an approach to disease that superficially seems so obvious it couldn’t be wrong. For an extreme example of surgical impunity see the history of Dr. Walter Freeman, the ice pick lobotomist.

Dr. Zamboni, a varicose vein surgeon at the University of Ferrara in Italy, was distressed that his wife developed multiple sclerosis, one of the more miserable of chronic, incurable diseases. He was determined to find the cause and the cure. Naturally, he focussed on veins, those vessels he had been operating on for years. As Mark Twain apocryphally said, to a man with a hammer everything looks like a nail.

However, in order for some abnormality in hemodynamics (blood flow and pressure) to cause damage to the brain there must be either or both of an increase in pressure in the small vessels of the brain or a reduction in cerebral blood flow. Neither have ever been shown to be a primary cause of MS. Undeterred by the principles of cardiovascular physiology, Dr. Zamboni hypothesized that MS might be analogous to varicose veins in the leg in which there is very high venous pressure that can lead to red cell leakage and iron deposition in the skin, known as stasis dermatitis. He imagined that some abnormality in the flow patterns of veins draining the brain, he calls “reflux”, caused by possible venous constrictions which somehow causes a leakage of blood from the small veins and an accumulation of iron in the brain, which somehow causes an autoimmune response which somehow damages the myelin sheaths of nerve axons, the basic pathology of MS. But, high venous pressure in the entire brain can only be caused by blockage of the superior vena cava which drains all the blood from the head and arms and not just a blockage in one or both internal jugular veins because of extensive collateral veins (see below). Superior vena cava syndrome causes swelling of the face and arms but has never been associated with MS. Carotid-cavernous sinus fistula can cause localized high venous pressure which is obvious from proptosis and congestion of eyeballs but, also, is never associated with MS.

Proptosis and congestion of the eyeballs caused by a carotid-cavernous sinus fistula. Venous pressure is very high, but patients do not get MS.

Undaunted, Dr. Zamboni set about looking for abnormal venous flow patterns in patients with MS. Download a PDF of his only major publication on his investigation to date.

Stasis dermatitis in a leg caused by high venous pressures secondary to defective venous valves in the large veins of the leg. Dr. Zamboni claims that the same process in the brain is causing MS. But in order to do so ALL of the veins draining the head would have to be obstructed as happens in the superior vena cava syndrome. One or two blocked veins cannot raise venous pressure because of the many collateral veins draining the cranial circulation.

Colour Doppler imaging is able to visualize structures and direction of blood flow within them. But instantaneous flow patterns in large veins about the heart are highly variable, being dependent upon patient position and breathing pattern, like breath holding or forced expiration. Looking for presumed abnormal patterns of venous flow, Dr. Zamboni used colour Doppler to image the veins in the neck and upper chest of some MS patients and some normal subjects in various positions and breathing status. These studies were blinded as to the diagnosis of the patient, he says. Even so, a variety of patterns could be produced in each subject and a selection made after. Then Dr. Zamboni made an unblinded selection of the MS patients who had the  “abnormal” flow pattern and did venous angiography to look for obstructions in the large veins. Now, when one is looking for a certain result of an action be it in science or any other field, unless one is extremely careful to isolate one’s action from the effect, one can even subconsciously alter to action to achieve the effect. Medical studies are particularly prone to this type of manipulation. That is why good journals will only publish rigorously blinded, randomized controlled trials of drugs or procedures. In this case, the person injecting the dye knew the diagnosis. The dye can be injected faster or slower or in different locations to give a picture that one predicts; the MS patients “should” have blockages, so the dye is injected at various places and speeds to find one. But one doesn’t likely look so carefully in the normal subjects. This is not necessarily conscious, fraudulent behaviour, but more often a subconsciously motivated action. Then Dr. Zamboni took these potentially biased venograms and made an unblinded selection of the ultrasound images that seemed to correspond to the “blockages” on the venograms, nullifying whatever randomization he had done initially. Then these patterns were classified in four “abnormal” patterns of flow which Zamboni calls “CCSVI, chronic cerebrospinal venous insufficiency” and which he claims is only present in MS patients are making an unblinded selection of images. “CCSVI” is  presumably present from birth but only causes MS after 20 or 30 years. Possible MS causation by venous obstruction would be easy to test in an animal model but Dr Zamboni is not a “mouse doctor”, as he says. Doctors like William Harvey who discovered the circulation of the blood by animal experimentation and gave vascular surgeons, like Zamboni, employment are presumably just inferior “mouse doctors”.

"Abnormal" patterns of flow and obstructions in veins draining the head in patients with MS as divined by Dr. Zamboni from ultrasound images and venography. All of these patterns can be perfectly NORMAL, have no effect in raising intracranial pressure and, therefore cannot cause damage to the brain. "CCSVI" is just another name for normal variation in head and neck venous anatomy.

Then Dr. Zamboni had the idea to open the “blockages”, to “liberate” them, with a balloon-tipped catheter and insert a stent to keep them open in the same manner as is done in coronary angioplasty. He has done a small non-blinded, non-randomized, non-controlled trial of what he calls the “liberation procedure”  on his wife and a group of patients who all claim immediate relief of symptoms like fatigue, “brain fog”, heat sensitivity, cold feet, and facial colour, highly non-specific symptom, very susceptible to the placebo effect. The “liberation procedure” is the modern equivalent of faith healing; the name evokes the same emotion, one is liberated from evil spirits. If he had called it the “jugular vein stenting” would it have had the same placebo effect? With the waning of organized religion, instead of prayer to a divinity, modern, sophisticated but desperate people now put their faith in technology. Self-promoting surgeons wielding high-tech tools are modern shamans; no disease should be resistant to their power. Because of the long duration and intermittent nature of their disease, MS patients are particularly prone to the siren song of con artists of all sorts.

Another diagram of "abnormal" venous flows in the head as imagined by Dr. Marian Simka, a Polish acolyte of Dr. Zamboni. Those nasty looking red chevrons are supposed to indicate high pressures damaging the brain. But even total occlusion of both internal jugular veins does not raise intracranial pressure because venous flow is directed through the extensive perivertebral venous plexus.

Intra- (grey) and extra- (black) cranial veins. Emissary veins allow communication between intra- and extra-cranial veins. The transient rise in venous pressure with occlusion of an internal jugular vein is rapidly relieved by diversion of venous flow into the other extra-cranial veins.

Venous adaption after occlusion of the internal jugular vein so that there is no increase in intracranial pressure and no damage to the brain including MS.

Digital subtraction angiography of the cranial circulation (venous phase) after removal of both internal jugular veins for cancer showing diversion of intracranial venous flow through the emissary veins at the base of the skull into the extracranial veins so that intracranial pressure is not increased. So, even total occlusion of both internal jugular veins cannot cause brain pathology including MS.

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Why “CCSVI” is surreal:

1. Perhaps the most potent physiological argument against the Zamboni myth is that if, for whatever reason, brain blood flow were reduced, the first cells that would be affected would be the high-oxygen consumption neurones in the grey matter, not the low oxygen-consuming, myelin-producing glial cells in the white matter, dysfunction of which is responsible for MS. Normally, blood flow to the white matter is very small compared to that to the grey matter. So, any theory of MS causation that invokes some aspect of blood flow is absurd. With any cause of reduced cerebral blood flow, one would lose consciousness long before there was any damage to glial cells in the white matter.

2. Chronically high central venous pressure (high pressure in all cerebral veins) does not cause MS. There are a number of cardiac conditions, such as tricuspid insufficiency and constrictive pericarditis, in which central venous pressure and jugular pressure are markedly elevated over long periods. Never has MS been described as a complication of these diseases.

I note that Pacific Interventionalists of Southern California who consider themselves experts in treating diseases of the veins and say they are doing treatment for “CCSVI” initially had the following on their patient info page:

“Currently the relationship between Multiple Sclerosis (MS) and CCSVI is still being defined and is debated among leading MS experts. However, many of the symptoms of central venous occlusion and stenosis seen in CCSVI are well understood and have been treated for many years. Central venous occlusion and stenosis may cause a variety of symptoms including swelling of the head, face, or neck, skin color changes within the head, face, or neck, swelling, heaviness, and throbbing of the arms, and occasionally light headedness.”

Note that they confound CENTRAL venous occlusion, (superior vena cava syndrome) with “CCSVI”  (presumed  or real blockage of jugular veins) which does not raise distal venous pressure because of collateral venous drainage. Central venous occlusion  has never been associated with MS.

3. Chronic occlusion of one or both internal jugular veins does not increase intracranial venous pressure and, therefore cannot cause brain pathology. Intracranial pressure is increased transiently after internal jugular vein occlusion but quickly returns to normal as collateral veins open.  Collateral perivertebral veins are adequate to handle venous drainage from the brain.

4. Zamboni’s paper says there was NO INCREASE in jugular venous pressure, the only parameter that matters if “CCSVI” is to damage the brain. The small gradients observed across presumed “stenoses” are not pathologically significant. So there is no way that whatever Zamboni is seeing could possible cause pathology.  If “CCSVI” is causing brain pathology, it must do so via some mysterious, unmeasurable, un-disprovable “reflux”, not amenable to the scientific method.

5. Here are venograms of the internal jugular vein of  an MS patient done in Poland before and after presumed cure of a stenosis which is presumably causing the MS. There is no way that slight indentation of the vein, which may even be just an artifact of how the dye was injected or catheter placement in a very thin-walled vessel, could cause a significant increase in upstream pressure enough to cause damage to the brain and cause MS. It is highly unethical to insert such a stent without hemodynamic proof of the importance of the “obstruction” by measuring a significant pressure gradient across it.

Left: a presumed stenosis in the IJV. Right; presumed cure of the stenosis with a stent. This is a perfectly normal IJV. Inserting rigid stents into large, thin-walled veins is potentially disastrous. Rupture of a large vein in the chest would be very hard to repair. Pressure cannot be applied to stop bleeding and patients could bleed to death internally before repair could even be attempted.

Here is a video from the same Polish lab doing “liberation”. Note the streaming of the dye along the wall giving the appearance of a severe stenosis. Injecting dye slowly into a large volume vein with laminar flow will result in streaming along the lamina. This internal jugular vein is perfectly normal. As one can see in the reconstruction above there is a normal relative constriction in the normal IJV as it enter the larger innominate vein. It appears that these doctors are doing stenting of normal veins and telling MS patients they have been “liberated.” High tech, dangerous snake oil.

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The MS Society of Canada has now been intimidated by desperate patients into funding a trial of the Zamboni procedure. I will be surprised if any of these grant applications are approved by a scientific review committee.

Zamboni’s myth is not science; it’s a surreal artistic creation in that this process can never be reproduced by other investigators. But all this is really irrelevant anyway because such flow patterns can never damage the brain without causing an increase in cerebral capillary pressure.  Any MS patient with a large enough increase in venous pressure to cause red cells to leak out of  small veins would have a head that looked like a leg with severe varicose veins; his eyes and tongue would protrude and his face would be very swollen and blue. So, there is no point in even funding a trial of the “liberation treatment” because it is impossible to know what Zamboni actually did and the basic science says that there no point in even trying to figure out what he did. When one doesn’t even know how to reproduce a test, how can one do a clinical trial of it? No more money should be wasted on the Zamboni myth.

We will keep our readers updated on the expansion of the Zamboni myth and it’s inevitable implosion. When it does implode, I would hope Dr. Zamboni will compensate all patients, MS societies, governments and insurance plans who wasted time money on imaging for “CCSVI” or “liberation.”

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Nov. 25, 2009

A patient has reported that Dr. Michael Dake a professor of cardiothoracic surgery at Stanford University, is performing the Zamboni procedure in MS patients who ask for it. How he determines where the venous “blockages” are is a mystery. At any rate, it is unethical and contrary to the Hippocratic Oath, to perform a procedure, not yet proven to be safe or effective, outside of a blinded, randomized controlled trial of that procedure. Modern medicine is supposed to be evidence-based and  there is no scientific evidence that the Zamboni procedure, however one wants to interpret it, has any utility in MS patients.

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February 10, 2010

A private clinic in the UK has announced that it will offer diagnosis of CCSVI.

“Glasgow Health Solutions actively seeking to offer scanning for CCSVI in the UK in 2010 in both London and Glasgow. The Doppler ultrasound scan required to show the CCSVI abnormalities has been specially adapted and requires specialist training from Prof Zamboni and his team. It is vital to work with the recognised specialists in this field and we hope to have ultrasound technician trained by Dr Zamboni later this year. The cost of the scans in the UK is still to be finalized but should be around 250 to 300 pounds.”

Why does diagnosing “CCSVI” require special training from Zamboni? Why can`t he describe in words what he is doing? Can CCSVI be quantified? Is there a number for degree of CCSVI or is it an all or none quantity? Who are these specialsts and by whom are they recognized? Why would anyone spend 300 pounds on a test that can be interpreted only after being trained by a master of this occult art?

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February 7, 2010

From facebook group ms-ccsvi-uk

John Whitaker Hi Gang, I have just sent an email to AHMED in Warsaw who have started the CCSVI procedure at @5000 eu after being told by Dr Simca that their list is pretty full till 2011 at a future cost of $10,000 to $15000 ! These private medical companies are jumping on the band wagon me thinks !”

Dr. Marian Simka in Poland is charging at least $10,000 for inserting stents in what look like normal jugular veins and claiming that MS patients are now “liberated” from their disease. That’s chutzpah!

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Jan 4, 2010

Want money for “CCSVI” without having to show that it has some scientific validity? No problem. Just start a foundation, like the Fondazione Hilarescere, appoint yourself to its “Scientific Committee” and give yourself a grant.

Here is the committee,

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Gary Cutter
Professor of Biostatistics and Head of the Section on Research Methods and Clinical Trials, Birmingham, University of Alabama. Gary Cutter developed an outcome measure for motor and cognitive efficiency in multiple sclerosis known as MSFC. He is Professor of Biostatistics at the University of Alabama

Michael Dake
Chief of Cardiovascular and Interventional Radiology, Stanford University School Of Medicine, Stanford.  He was the first surgeon to accept  Prof. Paolo Zamboni’s suggestion to operate on stenosis associated with CCSVI

Claude Franceschi
Head of Vascular Laboratories, Saint Joseph Hospital,Paris (FRA). No doubt  the greatest venous haemodynamics expert in the world

Giulio Gabbiani
Head of the Department of Pathology and Immunology, Centre Médical Universitaire, Genève. One of the greatest world experts  in vessel wall structure

Roberto Galeotti
Head of the Interventional Radiology Section, University Hospital of Ferrara, Ferrara.

E. Mark Haacke
Director of the The Magnetic Resonance Imaging Institute for Biomedical Research, Detroit. Inventor of the  SWI system, i.e. the most sophisticated and advanced system for the diagnosis of  multiple sclerosis

Byung-Boong Lee
Chairman Georgetown University School of Medicine,Washington. Chairman of the International  Consensus Conference on congenital venous malformations

Francesco Mascoli
Director of the Vascular Surgery B.U., University Hospital of Ferrara, Ferrara (ITA)

Fabrizio Salvi
Head of the Centre for Rare and Neuroimmune Diseases, Bellaria Hospital, Bologna. He was the first neurologist to work with  Prof. Zamboni in the clinical experimentation  of  “removing the venous  obstruction” from MS patients

Franz Schelling
Author of several Hypothesis Papers in the 80’s on the etiologic role of the venous system in MS

Andrea Stella
Professor of Vascular Surgery, University of Bologna,Bologna (ITA)

Bianca Weinstock-Guttman
Jacobs Neurological Institute, Buffalo. One of the greatest experts of multiple sclerosis in the pediatric age

Paolo Zamboni
Director of the Centre for Vascular Diseases, University of Ferrara, Ferrara. He discovered and described  CCSVI in MS patients

Robert Zivadinov
Director of the Buffalo Neuroimaging Analysis Center, New York State University, Buffalo. One of the greatest experts in pharmacological trials for multiple sclerosis and efficacy measures using MRI

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And here is the grant.

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The Emilia-Romagna Region has approved a Clinical Governance Project which is co-financed by the Hilarescere Foundation. The 180,000 Euro grant will be used to provide evidence on the diagnostic accuracy of cerebro-venous echo-colour-doppler vs. advanced magnetic resonance in the diagnosis of  CCSVI, either alone or in association with Multiple Sclerosis. The Project will be conducted in the years 2010-2011 and will involve the Centre for Vascular Diseases of the University of Ferrara, the il Be.Ne Centre and the Neuroradiology Unit of the Bellaria Hospital in Bologna.

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Running a charitable organization to direct money to the directors of the charity would be highly illegal in most of the rest of the world. But this is typical of the Italian approach. Help your friends and they will help you even if the help is taxpayer funded. Ask for any disinterested opinion and risk having the money go to someone outside of the “family” doing real science? Why would anyone want to complicate their lives?

Five of the 14 committee members belong to the institutions in Bologna and Ferrara that are receiving the grant. And the others, most obviously sympathetic to “CCSVI”, get nice trips to Italy, no doubt funded by the Fondazione. Who’s to complain? Perhaps this sort of foundational incest has something to do with the fact that the last Nobel Prize in Medicine to be awarded to an Italian who did the Nobel recognized work in Italy was to Rita Levy-Montalcini in 1986. Her pivotal research was done in her own bedroom during WWII.

Below is a response to a post to the above effect on the Facebook group CCSVI in Multiple Sclerosis from it’s moderator, Joan Beal.

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I’m so glad my husband got MS, so I could go to Italy without him, pay for my flight, get no sleep and spend hours transcribing the lectures of the guest doctors. May you never have to watch your spouse suffer, writhe in pain or wish to end it all.

The man who started the foundation, Agosto Zeppi, was a young business man afflicted with MS. Dr. Zamboni treated him, and he has remained in remission for the three years since. He began the foundation with other business leaders with the sole purpose to help MS patients.

 

STOP WRITING ABOUT THINGS that are beyond your ken. That was your last post, I consider you abusive, Dr. Rose. Goodbye.
J

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For the true believer all criticism of their conviction elicits a censorship reflex.

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January 23, 2010

See stories in the National Post by Tom Blackwell and Terence Corcoran on the Zamboni hysteria.

“As science journalism goes, the Zamboni MS stories were typical manifestations of junk science — the abuse of science fact via oversimplification, distortion and exaggeration of risk, often to serve some political end.”

Here is Joan Beal’s response to Corcoran’s comment.

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Jan 2, 2009

FROM CTV.ca
“Meanwhile in Italy, one of the companies that manufactures the ultrasound machines used in the testing for CCSVI, is beginning to hold training sessions for doctors and technicians who want to learn the novel technique for scanning the neck and head. One training program is being held this week at the University of Ferrara with technicians who developed the tests, and with Zamboni. A second session is planned for March.”   Contact information for the course is available through: Claudio.Buffagni@esaote.com.

Zamboni is incapable of describing in print how he diagnoses pathological “CCSVI”, so he has to run courses (cost?) to transmit the secrets of his arcane ritual. This is not science.

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Dec. 2, 2009

The Journal of  Vascular Surgery has published another paper by Dr. Zamboni. Why it was accepted for publication is a mystery. The “study” is unblinded, unrandomized and unreproducible and is, therefore, unscientific and worthless. If anyone can figure out what Zamboni is actually doing and how he defines “CCSVI”, what is needed, before anyone rushes off to the neurologist demanding the “cure”, is a blinded randomized trial of the “liberation” procedure.

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MS expert downplays Italian surgeon’s treatment

Research head at The Ottawa Hospital questions validity of clogged veins theory during education session

BY LYNN SAXBERG, OTTAWA CITIZEN

OTTAWA — The “liberation procedure,” a controversial new surgical procedure that appears to cure multiple sclerosis, is based on circumstantial evidence and MS sufferers should not rush into getting it.

That was the message delivered by Dr. Mark Freedman, director of the MS research unit at The Ottawa Hospital, during an education session hosted by the MS Society of Ottawa on Tuesday night. For many in the audience, his words dashed much of their newfound hope.

One of a series of education events regularly presented by the society, this meeting attracted throngs of MS patients and their loved ones, all curious about the new theory proposed by Italian researcher Dr. Paolo Zamboni. A vascular surgeon by training, Zamboni believes MS is not an autoimmune condition, as widely believed, but rather a vascular disease that can be cured with surgery.

Zamboni’s theory is that MS is caused by clogged veins, a condition he calls “chronic cerebrospinal venous insufficiency” (CCSVI). Zamboni first performed the angioplasty-type surgery on his wife, who suffered from MS, and her symptoms disappeared. He then tested it on a group of 65 patients with remarkable results: 73 per cent had no symptoms two years after the surgery.

However, Freedman, like many neurologists, is skeptical. During his presentation, Freedman said he confronted Zamboni at a recent meeting in Lisbon.

“He was there presenting some of his data and had a hard time answering any of the questions from the MS guys,” Freedman said. Among their concerns was Zamboni’s claim that the clogged veins are present at birth, yet no studies had been done on children. Zamboni had not done animal studies, either.

“I said, ‘Why don’t you tie off a few of the blood vessels in animals and see if they develop MS?’ His answer was, ‘I’m not a mouse researcher’,” Freedman said.

“If his observation stands up to other people being able to reproduce it,” Freedman said, “I think we’re going to have something of interest to chase, but we need to have the supporting evidence before we start reaming out blood vessels and pretending that this is going to cure the disease.”

Still, the fact that most of Freedman’s presentation was devoted to explaining the new drugs that are being developed to treat MS did not satisfy many members of the audience on Tuesday night.

“The problem I have is that you take Dr. Zamboni’s work very lightly, and, quite frankly, you haven’t done any better,” Mike Sastre said during the question-and-answer session. His wife, Linda Hume-Sastre, has lived with MS for almost seven years.

“All I want to say is give the man a chance, give the people here a chance who haven’t been helped very much by what you’re promoting,” Sastre said. “If they get better using something very simple, you lose a lot of research money, and so does the MS Society.”

Zamboni’s research has given hope to MS patients such as Dayle Baich, who uses a walker to get around.

“This I would do,” Baich said. “It’s a very simple surgery, compared to two years of chemotherapy. In three years, I have gone from being normal to now. So where am I going to be in two or three more years? I don’t have the time. Neither do most of the people here.”

The MS Society of Canada has issued an invitation for research operating grant proposals on CCSVI related to multiple sclerosis from qualified investigators based in Canadian institutions. The competition opens Dec. 9. The deadline for applications is Jan. 22.

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Nov. 28, 2009

Comments from an Australian MS support blog

The recent news presented in Researcher’s labour of love leads to MS breakthrough, appears to give hope. I’m wondering what’s the back-story? What sort of hope is it?  Real or false?

Colin Rose, Cardiologist and Associate Professor of Medicine, at McGill University in Montreal, Canada advises great caution. As he explains:

“Any MS patient with a large enough increase in venous pressure to cause red cells to leak out of  small veins would have a head that looked like a leg with severe varicose veins; his eyes and tongue would protrude and his face would be very swollen and blue.

You can read Dr Rose’s assessment for yourself and make up your own mind.

In the absence of blinded randomised controlled multiple trials, as Colin points out the scientist is subject to “subconsciously motivated action”. If MS could be halted by such a simple procedure, it would be lovely wouldn’t it?
In that case, I’m lining up for it.

However, I suspect this is not the breakthrough we’re hoping for.

At this point in time, this case is more likely to be an educated man who desperately wants to help his wife (who has MS herself), grabbing-at-straws and two internet-savvy  journalists who made a deadline

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Here is the original report in the Globe and Mail

November 20, 2009

Researcher’s labour of love leads to MS breakthrough

By André Picard and Avis Favaro
From Saturday’s Globe and Mail

Elena Ravalli was a seemingly healthy 37-year-old when she began to experience strange attacks of vertigo, numbness, temporary vision loss and crushing fatigue. They were classic signs of multiple sclerosis, a potentially debilitating neurological disease.

It was 1995 and her husband, Paolo Zamboni, a professor of medicine at the University of Ferrara in Italy, set out to help. He was determined to solve the mystery of MS – an illness that strikes people in the prime of their lives but whose causes are unknown and whose effective treatments are few.

What he learned in his medical detective work, scouring dusty old books and using ultra-modern imaging techniques, could well turn what we know about MS on its head: Dr. Zamboni’s research suggests that MS is not, as widely believed, an autoimmune condition, but a vascular disease.

Share your stories Tell us what this potential breakthrough in multiple sclerosis treatment means to you

More radical still, the experimental surgery he performed on his wife offers hope that MS, which afflicts 2.5 million people worldwide, can be cured and even largely prevented.

“I am confident that this could be a revolution for the research and diagnosis of multiple sclerosis,” Dr. Zamboni said in an interview.

Not everyone is so bullish: Skeptics warn the evidence is too scant and speculative to start rewriting medical textbooks. Even those intrigued by the theory caution that MS sufferers should not rush off to get the surgery – nicknamed the “liberation procedure” – until more research is done.

U.S. and Canadian researchers are trying to test Dr. Zamboni’s premise.

For the Italian professor, however, the quest was both personal and professional and the results were stunning.

Fighting for his wife’s health, Dr. Zamboni looked for answers in the medical literature. He found repeated references, dating back a century, to excess iron as a possible cause of MS. The heavy metal can cause inflammation and cell death, hallmarks of the disease. The vascular surgeon was intrigued – coincidentally, he had been researching how iron buildup damages blood vessels in the legs, and wondered if there could be a similar problem in the blood vessels of the brain.

Using ultrasound to examine the vessels leading in and out of the brain, Dr. Zamboni made a startling find: In more than 90 per cent of people with multiple sclerosis, including his spouse, the veins draining blood from the brain were malformed or blocked. In people without MS, they were not.

He hypothesized that iron was damaging the blood vessels and allowing the heavy metal, along with other unwelcome cells, to cross the crucial brain-blood barrier. (The barrier keeps blood and cerebrospinal fluid separate. In MS, immune cells cross the blood-brain barrier, where they destroy myelin, a crucial sheathing on nerves.)

More striking still was that, when Dr. Zamboni performed a simple operation to unclog veins and get blood flowing normally again, many of the symptoms of MS disappeared. The procedure is similar to angioplasty, in which a catheter is threaded into the groin and up into the arteries, where a balloon is inflated to clear the blockages. His wife, who had the surgery three years ago, has not had an attack since.

The researcher’s theory is simple: that the underlying cause of MS is a condition he has dubbed “chronic cerebrospinal venous insufficiency.” If you tackle CCSVI by repairing the drainage problems from the brain, you can successfully treat, or better still prevent, the disease.

“If this is proven correct, it will be a very, very big discovery because we’ll completely change the way we think about MS, and how we’ll treat it,” said Bianca Weinstock-Guttman, an associate professor of neurology at the State University of New York at Buffalo.

The initial studies done in Italy were small but the outcomes were dramatic. In a group of 65 patients with relapsing-remitting MS (the most common form) who underwent surgery, the number of active lesions in the brain fell sharply, to 12 per cent from 50 per cent; in the two years after surgery, 73 per cent of patients had no symptoms.

I am confident that this could be a revolution for the research and diagnosis of multiple sclerosis Dr. Paolo Zamboni

Augusto Zeppi, a 40-year-old resident of the northern Italian city of Ferrara, was one of those patients. Diagnosed with MS nine years ago, he suffered severe attacks every four months that lasted weeks at a time – leaving him unable to use his arms and legs and with debilitating fatigue. “Everything I was dreaming for my future adult life, it was game over,” he said.

Scans showed that his two jugular veins were blocked, 60 and 80 per cent respectively. In 2007, he was one of the first to undergo the experimental surgery to unblock the veins. He had a second operation a year later, when one of his jugular veins was blocked anew.

After the procedures, Mr. Zeppi said he was reborn. “I don’t remember what it’s like to have MS,” he said. “It gave me a second life.”

Buffalo researchers are now recruiting 1,700 adults and children from the United States and Canada. They plan to test MS sufferers and non-sufferers alike and, using ultrasound and magnetic resonance imaging, do detailed analyses of blood flow in and out of the brain and examine iron deposits.

Another researcher, Mark Haacke, an adjunct professor at McMaster University in Hamilton, is urging patients to send him MRI scans of their heads and necks so he can probe the Zamboni theory further. Dr. Haacke is a world-renowned expert in imaging who has developed a method of measuring iron buildup in the brain.

“Patients need to speak up and say they want something like this investigated … to see if there’s credence to the theory,” he said.

MS societies in Canada and the United States, however, have reacted far more cautiously to Dr. Zamboni’s conclusion. “Many questions remain about how and when this phenomenon might play a role in nervous system damage seen in MS, and at the present time there is insufficient evidence to suggest that this phenomenon is the cause of MS,” said the Multiple Sclerosis Society of Canada.

The U.S. society goes further, discouraging patients from getting tested or seeking surgical treatment. Rather, it continues to promote drug treatments used to alleviate symptoms, which include corticosteroids, chemotherapy agents and pain medication.

Many people with multiple sclerosis, though, are impatient for results. Chatter about CCSVI is frequent in online MS support groups, and patients are scrambling to be part of the research, particularly when they hear the testimonials.

Kevin Lipp, a 49-year-old resident of Buffalo, was diagnosed with MS a decade ago and has suffered increasingly severe attacks, especially in the heat. (Heat sensitivity is a common symptom of MS.) His symptoms were so bad that he was unable to work and closed his ice-cream shop.

Mr. Lipp was tested and doctors discovered blockages in both his jugular and azygos veins. In January of this year, he travelled to Italy for surgery, which cleared five blockages, and he began to feel better almost immediately.

“I felt good. I felt totally normal. I felt like I did years ago,” he said. He has not had an attack since.

As part of the research project, Mr. Lipp’s siblings have also been tested. His two sisters, both of whom have MS, have significant blockages and iron deposits, while his brother, who does not have MS, has neither iron buildup nor blocked arteries.

While it has long been known that there is a genetic component to multiple sclerosis, the new theory is that it is CCSVI that is hereditary – that people are born with malformed valves and strictures in the large veins of the neck and brain. These problems lead to poor blood drainage and even reversal of blood flow direction that can cause inflammation, iron buildup and the brain lesions characteristic of multiple sclerosis.

It is well-established that the symptoms of MS are caused by a breakdown of myelin, a fatty substance that coats nerve cells and plays a crucial role in transmitting messages to the central nervous system. When those messages are blurred, nerves malfunction, causing all manner of woes, including blurred eyesight, loss of sensation in the limbs and even paralysis.

However, it is unclear what triggers the breakdown of myelin. There are various theories, including exposure to a virus in childhood, vitamin D deficiency, hormones – and now, buildup of iron in the brain because of poor blood flow.

While he is convinced of the significance of his discovery, Dr. Zamboni recognizes that medicine is slow to accept new theories and even slower to act on them. Regardless, he can take satisfaction in knowing that the woman who inspired the quest, and perhaps a dramatic breakthrough, has benefited tremendously.

Dr. Zamboni’s wife, Elena, has undergone a battery of scans and neurological tests and her multiple sclerosis is, for all intents and purposes, gone.

“This is probably the best prize of the research,” he said.

André Picard is the public health reporter at The Globe and Mail. Avis Favaro is the medical correspondent at CTV News.

With reports from Elizabeth St. Philip, CTV News

W5 DOCUMENTARY

Watch W5‘s documentary on the groundbreaking new treatment for multiple sclerosis, which includes the first time the “liberation” surgery was filmed.

It is available on the Web at http://www.W5.ctv.ca, and will be replayed Sunday on CTV Newschannel.

MS IN CANADA

An estimated 55,000-75,000 Canadians have multiple sclerosis, and every day three more people in Canada are diagnosed with the disease. Canada has one of the highest rates of MS in the world. MS is the most common neurological disease affecting young adults in Canada.

  • Women are more than three times as likely as men to develop MS.
  • MS can cause loss of balance, heat sensitivity, impaired speech, extreme fatigue, double vision and paralysis. The disease is characterized by lesions on the brain, a result of the breakdown of myelin, the protective covering wrapped around the nerves of the central nervous system.
  • The most common treatment for MS is corticosteroids. Steroids reduce inflammation at the site of new demyelination, lessening symptoms.
  • MS was first identified and described by French neurologist Jean-Martin Charcot in 1868.
  • MS is widely believed to be an autoimmune disorder, but the cause or causes are unknown. There are a number of theories about what might trigger the disease, including exposure to a virus in childhood; exposure to tobacco smoke; lack of the female sex hormone prolactin, which plays a role in the development of myelin; and vitamin D deficiency. Vitamin D may play a role in MS because it helps to construct the interior layer of blood vessels.
  • Despite the long-held assumption that MS is an autoimmune disorder, new research suggests it is actually a vascular disease triggered by a buildup of iron in the brain due to problems in blood flow.

Source: MS Society of Canada

—————————————————————————-

Here is an example of the  someone caring for an MS patient enthralled by the Zamboni myth. Joan Beal’s story was later related by the Daily Mail. Joan has been the major online patient advocate for “CCSVI.” Her husband’s MS sounds somewhat atypical. MS never causes “abnormal blood numbers, high liver enzymes, [and] high SED rate”. It can cause fatigue. But all of these can be caused by hepatitis. One could hypothesize that during her husband’s trip to a high altitude he was infected with a hepatitis virus, the resolution of which was coincident with the “liberation” procedure for his MS. His fatigue improved but it had nothing to do with “liberation”. If high altitude caused MS everyone living above a certain altitude would have it. So here we have an opera singer determined to find the cure of her husband’s medical problems, getting into diagnosis and treatment of what was probably at least two diseases, attracted by facile, unproven, superficially attractive concepts and then promoting it over the social interaction sites on the Web. Thousands of MS patients are now bombarding neurologists and MS societies with demands for “liberation”. This is the first major medical fad of the Internet age; it will be a fascinating story when it eventually plays itself out.

Hi everyone-
It’s just one person. Joan Beal, wife of MS patient Jeff Beal. We were the American family featured in the CTV documentary in part 2. There’s been alot of comments and some anger expressed as to “who set us this page???”. I just want folks to know that I started this page over the summer. Because I wanted to get the word out. I’ve been writing about CCSVI research on ThisIsMS.com since last December. That’s where Ashton Embry found me as “Cheerleader.” Lots of folks have been discussing this treatment over the last year at ThisIsMS…we have an amazing online community. And that’s how Avis Favaro found me. Come visit us and learn more.

I’ve been searching for the vascular connection to my husband’s MS since his diagnosis. And I have worked many months, reading medical journals online and learning all I could about the history of MS. When a friend on ThisIsMS.com posted Dr. Zamboni’s CCSVI research, it made sense with everything I had noticed in my husband’s MS- his first flare occurred after an hypoxic event (lack of oxygen to the brain) at high altitude, and he had many abnormal blood numbers, high liver enzymes, high SED rate, and overwhelming fatigue. These appeared to me to be signs of hypoxic injury to his brain. And in Dr. Zamboni’s research he found iron deposition, slowed perfusion and hypoxic injury to gray matter were the real insult to MS brains. And this was caused by closed veins. The blood heading back to the heart couldn’t get there in a timely matter, and it injured brain tissue. The demyelination happened AFTER the gray matter injury. By allowing oxygen to flow and stopping iron deposition with the Liberation procedure, Dr. Zamboni found a way to halt the demyelinating lesions and slow MS progression. And to relieve many of the worst symptoms of MS, including fatigue, depression, spasms, sleep issues and more.

I am not a doctor. I was trained as an opera singer. But I can write like a doctor now, because I wanted to learn all I could. There is no ulterior motive to this page. I just wanted to help other MS patients. Once I saw my husband’s twisted jugular veins on MRV technology, and his improvement after having them corrected- I knew this was real.

I promise I will never write and sell and e-book. Really. The supplement/diet/lifestyle program I made up for Jeff is on here for free. Look for Endothelial Health program in the notes section.

We all need to be our OWN ADVOCATES. No one will do the heavy lifting for us. If you want someone to learn about CCSVI, print out the research, print out the press and mail or bring the packet of information to the doctors you hope to reach. That’s all I did. Really. I tell you how to do it. Read the notes for “dubious doctors.” Read all the notes I wrote up…I tried to explain all of this in plain english.

 

So, go start your own Facebook or web page!! Please!!! Lots of folks are organizing around the globe. There’s no trademark on CCSVI, and Dr. Zamboni would be thrilled to have his research tested by other doctors. He’s wanted to get the word of CCSVI out….and thanks to Avis Favaro and Elizabeth St. Philip, now it is!
I’m just one gal who loves someone with MS. Really.
My best to everyone fighting to cure this horrific disease,
Joan


153 Responses to “The Zamboni Myth: Why “CCSVI” is Surreal”

  1. aldo29 said

    Colin,

    Are YOU a clinician or otherwise medically qualified in any way?

    If not then what you propose here is an opinion or conjecture as a layperson and it is a bit early for you to call new research material a myth.

    You are surely not seeking to create a myth yourself where none exists? The interest and excitement is understandable. People ARE being tested and FOUND with venous malformations – otherwise there is a case of medical malpractice. People are objectively better after treatment and continue to improve and not relapse.

    One needs to step back and look outside the box for answers because “within the box” to date no-one has been able to explain the actual cause of MS – it just is i.e. unknown origin.

    Consider this – the connection to MS aside a medical scientist in the fields of vascular or neurological disorders, would work in conjunction with others in and with team based approach probably at a major medical institution with very little funding by testing the hypothesis in double blinded studies where facts, methodologies and interpretations can be published and peer reviewed.

    This is the Scientific way and it is by its very nature a highly skeptical and efficient process. Scientific consensus will eventually result form the process and body of evidence. Medical investigators are skeptics by training and practice and your assertions appear to be unsupported by the evidence.

    Adolfo G. – Melbourne Australia

  2. remy9111 said

    Colin, You lost my respect and all credibility when you decided to personally attack Joan whom you say is “enthralled by the Zamboni myth.” I would find your case more compelling and “objective” if you didn’t feel the need to mock her. Why is that necessary? You are just as bad as the overly optimistic CCSVI proponents. Consider me a fellow PhD who thinks you behave badly for an educated person.

    • eddievos said

      To Remy, Reason, et al. Before you jump on Colin with comments like this, he IS a very senior cardiologist with probably about 10,000 diagnostic angiograms to his name; not only that, he’s an ass. prof. in medicine and has a PhD in physiology on top of his medical degree.

      I would disgree with him that this ‘liberation therapy’ does not deserve full examination since nobody knows the real causes of MS, that appear to include lack of vitamin D, demyelination of nerve cells [that's what some statins do in the brain] and who knows. Zamboni is, however, a respected researcher so I think the little money spent, versus the cost of MS in any terms, on his method is well spent.

      I could not wrap my brain around the issue as to why he would find quick relief with his angioplasty and how that slight but local ‘back pressure’ in drainage could affect iron status, locally known to by high in MS and other ‘venous problems’ The PDF Colin linked to, the most recent article with truly superb pictures, does not mention the iron factor.

      15 years ago nobody thought 90%, or even ANY, stomach ulcers were caused by a bacterium. Now that is medical dogma with a antibiotic quick fix. I think we have to agree that while arteries get all the attention, few pay attention to the venous system [in the brain] and clearly that is worthy more consideration in things affecting the brain. We cannot blame Zamboni for calling for more research since he has seen clinical benefit. It is up to the skeptics to to the trials to disprove the pathway. It seems that will be done.

      • remy9111 said

        Eddievos,

        Overly educated professional people still need to behave in decently–it doesn’t matter how many degrees or high positions they have. Listen, I’ve been in academia for many years. Some are wonderful supportive intellects. Others feel the need to mock and demean in order to make a point. My only issue with Colin is that he loses objectivity when he behaves in the latter fashion.

  3. reason21 said

    Is there any trustworthy information about the Colin Rose Myth?? There are many cases known of stressed and confused people who try to get attention. In most cases they focus on what seems to be emerging developments. They mention some important lines of the subject, followed by an opinion thtat lacks any knowledge of the subject they talk about. Colin Rose is a good example of such a myth.
    He never gets really interesting in his blog; he just screams; ‘Cars are dangerous and kill people, if yo hit al wall with 50mph..you’re dead!’
    I suppose one of the first “colin Rose’ cases was the man who tried to stop the introduction of trains in the US, a few centuries ago. Animals would die because of the pollution, the noise of the train would drive people nuts (well, one person did)
    Isn’t there a term for this…Rosalism or something like that??

    Maybe these Rosalized patients can be helped, maybe they got a disturbed blood stream, i pray for them. They are a worst case of lack of attention, interest and love.

  4. stillhere22 said

    To call Zamboni’s theory a myth at such an early stage shows very poor judgement.

    Zamboni and several other medical professionals (all very well respected in their particular disciplines) are actively working on the appropriate studies to assess efficacy. In fact, the MS Society of Canada has made millions of dollars available in funding to underpin such studies. Clearly, this sort of backing does not happen without there being sufficient reason to do so.

    Without facts and controlled tests it would be wrong to herald CCSVI as any kind of cure (although preliminary data does look extremely encouraging) and conversely, without evidence to prove otherwise it is equally wrong to pronounce it as a myth.

    Shame on you Colin, some might say that a person in your position should know better.

    Mark – UK

  5. chrishadms said

    Some of us are lucky enough to know the people with RRMS, SPMS, and PPMS who have had this procedure. Some of us are lucky enough to know that 65 MS people with 235 controls have been treated with the liberation procedure. Some of us know that no one progressed or showed any new activity unless they restenosised. Some of us realize the disability comes from Iron poisoning from the huge Iron deposits deep in the brain from improper draining of the tissue. Some of us know the same exact condition called CVI exists in the leg veins and also results in ugly lesions.

    Some of us are doorknobs who write articles that have 0 scientific fact. Some of us have fun playing Devils advocate because we have the same exact personality as the “Comic Book Guy” from the Simpson’s. Some of us want to be popular so they make inflammatory websites that have 0 to do with helping people. Some of us have never figured out how to make friends. Some of us have no idea how to be empathetic, understanding, or compassionate. Some of us are really sad and lonely.

    The previous paragraph totally describes the person this website belongs too…and I am saying this to stop him from doing it…I bet this is the same guy who would email me or leave a comment bragging themselves up because no one else would do it for them.

    For us MS’er’s out there reading this…just remember it could be worse, you could be as disabled as this guy!!

    Chris T. Young
    http://www.chrishadms.com

  6. lewchapman said

    I actually read all of what I hadn’t read already being a recipient of this ‘bogus’ procedure. One doesn’t even have to try to argue with this guy, who obviously has too much time on his hands (a classic case of “liberal arts PhD sans work”). I call bullshit with one sentence. “If you claim this is a myth in the absence of proof, then how can you say it is a myth since their is no proof in your argument either? Show us the proof of that. You show no real evidence of why this wouldn’t work, only that the research needs to be proven, which is in process right now. This same approach that the author takes could have been applied to Jonas Salk’s poliio vaccine when it was first introduced. There is a massive difference between ignorance and stupidity. Ignorance is simply not knowing, which is really what you say about this, yet you present it as stupidity. You speak about the turbulence of the blood in the large veins around the heart. Guess what dude?, these ain’t those.

    The writing style reminds me of Ignatius J. Reily in John Kennedy Thoole’s “A Confederacy of Dunces”, which should be required reading if you ask me. The words are eloquently laid out, yet there is no spine to the argument. Just eloquent prose which the writer probably had great success with in the halls of academia; not in the real world. So like IJ Reily, us that ‘go for this’ must be looked down upon and of inferior intellect. I’m not kidding. If you’ve read that book, it immediately had the feel of Reily writing in the first person.

    I won’t call you names or call you out, but use your own argument. Since it is now obvious that the money that has been “intimidated” out of the Canadian MS Society to research this will be spent to prove or disprove, just keep it in your pants until then.

  7. chrishadms said

    I just spoke to a doctor friend who is a Neurologist and had him read this paper. His words to me were this,

    “Ignore him. The man has absolutely no knowledge of the human body or he wouldn’t have wrote ‘peoples eyes would be bugging out of their heads.’ Let him be the guy who is sitting in the corner looking stupid in two years”

  8. Rebecca Hoover said

    Dr. Zamboni’s theories are interesting to me because he is not the first one to suggest that we need to look at the vascular system when trying to understand MS. I looked at PubMed and found many abstracts on this issue and there is a reasonable basis for thinking the vascular system is involved somehow in MS. I noticed, however, that in his December 2009 paper in the Journal of Vascular Medicine, Zamboni reports on changes in active lesions but not on changes in total lesion volume. That is problematic in my view. Also, it is disappointing to me that there was not more care used in selection of MRI machines–that alone creates questions about results. Finally, some way to blind the study certainly would have been appropriate. If you don’t think, however, the vascular system is involved in MS, take a look at all of the following studies:

    The following reports certainly identify a need for research to ID treatment for veins related to MS. Also, amazingly, it appears vein issues often precede MS lesions.

    Invest Radiol. 2009 Sep;44(9):491-4.
    A comparison of 3T and 7T in the detection of small parenchymal veins within MS lesions.

    Tallantyre EC, Morgan PS, Dixon JE, Al-Radaideh A, Brookes MJ, Evangelou N, Morris PG.
    … See More
    Department of Clinical Neurology, Medical School, University of Nottingham, Nottingham, United Kingdom.

    OBJECTIVE: Histologic examination of multiple sclerosis (MS) brain lesions reveals heterogeneity including the presence or absence of a central blood vessel. Recent work has shown that T2* weighted magnetic resonance imaging at 7T allows the identification of small parenchymal veins within MS lesions. The aims of this study were (1) to compare whether a comparable sequence at 3T was also capable of demonstrating parenchymal veins within MS brain lesions, and (2) to investigate the potential of 7T T2* weighted imaging to differentiate between MS white matter lesions and age-related vascular lesions seen in controls. MATERIALS AND METHODS: Seven patients with demyelinating brain disease and 7 healthy volunteers were scanned at 3T and 7T. Fluid attenuated inversion recovery (FLAIR) images acquired at 3T were used to identify each brain lesion in each patient. A comparison of images from both field strengths was then made to determine whether white matter lesions seen in 3T FLAIR images could be identified in T2*-weighted images, and whether a central vein could be detected. RESULTS: A total of 358 brain lesions were identified in the brains of the 7 patients using 3T FLAIR images. The 3T T2* sequence detected 89% of FLAIR lesions compared with 94% using the 7T T2* sequence (P = 0.0002). A central vessel could be identified in 45% of visible lesions using 3T T2* and 87% of visible lesions using 7T T2* (P < 0.0001). Using 7T T2* imaging, a central vein was evident in only 8% of the discrete white matter lesions found in the brains of healthy volunteers. DISCUSSION: This study suggests that ultra high field imaging is advantageous in demonstrating detailed structural anatomy of MS lesions. 7T T2* imaging can be used in the future to investigate the pathogenesis of MS lesions. The potential for ultra high field imaging to discriminate between MS white matter lesions and microangiopathic lesions warrants further investigation as this would represent a clinically useful application.

    AJNR Am J Neuroradiol. 2000 Jun-Jul;21(6):1039-42.
    MR venography of multiple sclerosis.

    Tan IL, van Schijndel RA, Pouwels PJ, van Walderveen MA, Reichenbach JR, Manoliu RA, Barkhof F.
    … See More
    Department of Radiology, University Hospital Vrije Universiteit, Amsterdam, The Netherlands.

    BACKGROUND AND PURPOSE: The distribution of multiple sclerosis (MS) lesions in the brain follows a specific pattern, with most lesions in the periventricular regions and in the deep white matter; histopathologic studies have shown a perivenous distribution. The aim of this study was to illustrate these distribution patterns in vivo using high-resolution MR venography. METHODS: Seventeen MS patients underwent MR imaging at 1.5 T. Venographic studies were obtained with a 3D gradient-echo technique. MS lesions were identified on T2-weighted images, and their shape, orientation, and location were compared with the venous anatomy on the venograms. RESULTS: The use of contrast material facilitated the visualization of small veins and increased the number of veins seen. A total of 95 MS lesions could be identified on both the T2-weighted series and the venograms; a central vein was visible in all 43 periventricular lesions and in all but one of the 52 focal deep white matter lesions. The typical ovoid shape and orientation of the long axis of the MS lesions correlated well with the course of these veins. CONCLUSION: With MR venography, the perivenous distribution of MS lesions in the brain can be visualized in vivo. The venous anatomy defines the typical form and orientation of these lesions.

    Acta Neurol Scand. 1999 Aug;100(2):81-3.
    Changes in the retinal veins in acute optic neuritis.

    Engell T, Sellebjerg F, Jensen C.
    … See More
    Department of Ophthalmology, Sønderborg Hospital, Denmark.

    OBJECTIVE: To investigate patients with acute optic neuritis (ON) for changes of the retinal veins. MATERIAL AND METHODS: Seventy-six patients with acute ON were extensively neuro-ophthalmologically examined. RESULTS: Multiple sclerosis (MS) was found in 41 patients of whom 1 had periphlebitis retinae (PR) and 2 had venous sheathing (VS). Probable MS was found in 15 patients without prior symptoms of MS. One had PR and VS, and 2 had VS. Twenty patients had mono-symptomatic ON, none had retinal changes. CONCLUSION: Changes of the retinal veins should alert the clinician to a probable diagnosis of MS. ON appears frequently as the initial symptom of MS. Our observation of VS in these patients suggest that clinically silent retinal disease activity had occurred prior to the ON.

    Arch Ophthalmol. 1996 Jan;114(1):34-9.
    Retinal venous sheathing and the blood-retinal barrier in multiple sclerosis.

    Birch MK, Barbosa S, Blumhardt LD, O'Brien C, Harding SP.
    … See More
    St Paul's Eye Unit, Royal Liverpool England University Hospital.

    OBJECTIVE: To assess the temporal relations among retinal appearance, disruption of the blood-retinal barrier, clinical subgroup, disease course, and disruption of the blood-brain barrier in multiple sclerosis. DESIGN: A 6-month prospective study involving monthly clinical ocular examinations, color fundus photography, fundus fluorescein angiograms, and magnetic resonance brain scans with gadolinium-diethylenetriamine-pentaacetic acid (Gd-DPTA) enhancement. SETTING: University-based ophthalmology and neurology departments. PATIENTS: Twenty-three patients with relapsing-remitting, primary-progressive, or secondary-progressive multiple sclerosis. RESULTS: Retinal venous sheathing was seen in six patients. The appearances observed included focal venous sheathing, diffuse venous sheathing, sheathing centered on sites of arteriovenous crossover, and focal perivenous hemorrhage. Arteriolar sheathing was also observed in one patient. Venous leakage on fundus fluorescein angiogram was detected in three patients, all of whom also had sheathing. The following three patterns of disruption of the blood-retinal barrier were seen on fundus fluorescein angiogram: focal leakage, extensive leakage, and very late wall staining. In one patient, the leakage was transitory. No correlations were observed between ophthalmologic features and multiple sclerosis clinical subgroup, disease course, or the number of new (Gd-DTPA-enhancing) lesions on magnetic resonance imaging. CONCLUSIONS: Disruption of the blood-retinal barrier, like the more frequent disruption of the blood-brain barrier seen on magnetic resonance imaging, is often unrelated to clinical neurologic relapses and occurs with apparently similar frequency in different patients independent of clinical disease course.

    J Neurol Neurosurg Psychiatry. 1988 Feb;51(2):260-5.
    Perivascular iron deposition and other vascular damage in multiple sclerosis.

    Adams CW.
    … See More
    Division of Histopathology, United Medical School of Guy's Hospital, University of London, UK.

    Evidence of damage to cerebral vein walls was sought in 70 cases of multiple sclerosis. Seventy control cases were also examined. The multiple sclerosis cases showed venous intramural fibrinoid deposition (7%), recent haemorrhages (17%), old haemorrhages revealed by haemosiderin deposition (30%), thrombosis (6%) and thickened veins (19%). In all, 41% of all multiple sclerosis cases showed some evidence of vein damage. Occasional control cases showed haemosiderin deposition in the brain but, unlike the multiple sclerosis cases, these were diffuse and almost entirely related to coexistent cardiovascular or cerebrovascular disease. Haemosiderin deposition was common in the substantia nigra and other pigmented nuclei in all cases. It is concluded that the cerebral vein wall in multiple sclerosis is subject to chronic inflammatory damage, which promotes haemorrhage and increased permeability, and constitutes a form of vasculitis.

    Brain. 1987 Apr;110 ( Pt 2):405-14.
    Retinal venous sheathing in optic neuritis. Its significance for the pathogenesis of multiple sclerosis.

    Lightman S, McDonald WI, Bird AC, Francis DA, Hoskins A, Batchelor JR, Halliday AM.
    … See More
    A systematic study of the frequency of retinal vascular abnormalities and cells in the media has been made in 50 patients presenting with acute optic neuritis. Abnormalities were found in 14 (fluorescein leakage in 10, perivenous sheathing in 6, cells in the vitreous in 6 and in the anterior chamber in 4; in 2 the cells in the media were seen without vascular changes). After a mean follow up of 3.5 years multiple sclerosis (MS) had developed in 8/14 patients with vascular abnormalities and/or evidence of inflammation and in 5/32 without; the difference is significant (P less than 0.02). The occurrence of perivenular abnormalities in a region free of myelin and oligodendrocytes provides evidence that the vascular changes in MS can occur independently of contiguous demyelination, and may be the primary event in the formation of a new lesion.

    Neuropathol Appl Neurobiol. 1987 Mar-Apr;13(2):141-52.
    Periventricular lesions in multiple sclerosis: their perivenous origin and relationship to granular ependymitis.

    Adams CW, Abdulla YH, Torres EM, Poston RN.
    … See More
    The periventricular region was studied in the brains of 129 cases of multiple sclerosis, with the purpose of establishing the mechanism and order of events in the development of the periventricular plaque, and deciding whether there is any relationship between granular ependymitis and such plaques. Periventricular plaques were found in 82.2% of cases. Observation and computerized morphology showed that the early stage of the periventricular plaque is the formation of a lesion around a subependymal vein and that adjacent lesions later coalesce. These plaques do not appear to arise from the ependyma, which is against any role for the CSF in their initial development. Chronic or burnt-out periventricular lesions often show overlying granular ependymitis (10.9% of cases) and subependymal gliosis (17.8%), presumably as a result of the long-continued low-grade inflammatory process. This process, which is not specific for multiple sclerosis, is sometimes associated with transfer of IgG and C3, as shown with peroxidase methods, across the subependymal vein wall and the ependymal epithelium. Increased permeability of the inflamed ependyma constitutes a possible abnormal entry route from plaque to CSF or, in reverse, from CSF to brain.

    J Neurol Sci. 1985 Jul;69(3):269-83.
    Inflammatory vasculitis in multiple sclerosis.

    Adams CW, Poston RN, Buk SJ, Sidhu YS, Vipond H.
    … See More
    Fifty-two plaque or lesion areas were examined from 25 cases of multiple sclerosis. Twenty-four of these showed acute features, whereas the rest were more chronic in nature. The acute lesions showed lymphocytic infiltration (79%), fibrinous exudation (63%), lymphocytic meningitis (50%) and venulitis (58%). Of the chronic lesions, there were only 21% with lymphocytic infiltration, 11% with fibrinous exudates, none with meningitis, 29% with organising endovenulitis, 36% with fibrosed vein walls. The finding of a fibrinous inflammatory exudate in the acute lesion is a new observation in multiple sclerosis. Likewise, the observation of an inflammatory infiltrate confined to the vein wall (and often present at a distance from the plaque) has not been previously recorded in the disease. The chronic lesion, by contrast, showed relatively little fibrin, but there was considerable reparative thickening of the walls of the involved veins. The evidence provides new humoral and cellular evidence of an inflammatory process in multiple sclerosis which precedes or is not directly associated with the demyelinating process.

    J Neurol Sci. 1975 Jun;25(2):165-82.
    The onset and progression of the lesion in multiple sclerosis.

    Adams CW.
    … See More
    The active established plaque in multiple sclerosis is characterized by hypercellularity at its edge and lipid phagocytosis (gitter cells). The hyperactive early plaque shows cells throughout the lesion. Active plaques seems to extend at their edges; proteolysis of myelin basic protein is perhaps an important factor in the myelin breakdown at the rim of these lesions. The hyperactive early plaque usually shows infiltration with monocytes, lymphocytes and plasma cells around its central vein. The phagocytic element is presumably a response to myelin breakdown but the significance of the lymphocytes in these lesions in uncertain. Perivenular infiltrates that are predominantly composed of lymphocytes are seen around veins and venules in the vicinity of established lesions in some patients who died during an acute episode…

    A little known sign of multiple sclerosis, periphlebitis of the retinal veins.]

    PAUFIQUE L, ETIENNE R.

    Ann Ocul (Paris). 1955 Aug;188(8):701-7. French. No abstract available. PMID: 13275768 [PubMed - OLDMEDLINE]

    • Colin Rose said

      I am not an expert in the histopathology of MS but it seems logical that since the inflammatory cells seen in MS lesions have to cross the BBB somehow and the easiest way is probably through breaks in the venular endothelium induced by whatever is causing the MS lesions. That does not mean that increased venous pressure or “flow patterns” are causing the MS lesions.

  9. Rebecca Hoover said

    I have to make one more comment. In Joan’s defense, I have seen her make posts about very sensible life style changes that should be made by those with MS. These are exactly the type of lifestyle changes recommended in this web site. In fact, I have seen Joan recommend these changes while we are waiting for reliable research on the Zamboni technique. When looking at Joan, it fine to look at the truth but it is also important to look at the whole truth.

    Also, those have been around MS for a while knows that even though the research may be lacking, life style changes are very important for those with MS. We have seen those with MS have symptoms melt slowly away after life style changes are made. We have seen MRIs improve and stay improved. Are there perfect random controlled trials for these life style improvements as a treatment for MS? Of course not, because there are no big profits to be made from selling inexpensive but healthy food and exercise. Even so, the evidence is compelling enough that even the Mayo Clinic suggests life style improvements for MS patients.

    We could all make peace and work to encourage those with MS to make life style improvements. Sadly, many just have not been educated to understand the importance of life style in preventing and treating almost all diseases. Personally, I think we need to push for health education classes starting in grade schools. As it is, too many of those we know, even those we love, are digging their graves with their teeth.

    • Colin Rose said

      There are good controlled trials showing the benefit of lifestyle change in preventing and treating atherosclerosis, diabetes and hypertension but to my knowledge there are no controlled studies of the effect of lifestyle in MS. If you know of any please let me know. Because of the variable and intermittent nature of MS symptoms, controlled studies in MS have to be done very carefully over many years.

      • Rebecca Hoover said

        The lack of RCTs showing the benefits of lifestyle changes in preventing and treating MS is indeed a problem. As you know, these trials are expensive but, because there is no great financial reward from showing the benefits of such improvements, no one steps to the plate to provide funding. Also, the pharmaceutical companies have a lot to gain by selling drugs to MS patients who have problems with malnutrition. Consider, for example, the study showing that about 60% of those with MS have vitamin D deficiencies. Why not sell drugs costing $25,000 per year instead of just trying some inexpensive Vitamin D3 first?

        At the same time, there are ethical issues with RCTs in the treatment of MS. Is it right to avoid treating a Vitamin D, B12 or B6 deficiency so researchers can see what happens with MS when deficiencies are untreated? Also, when recent studies are showing that diets high in cholesterol result in white matter lesions similar to those found in MS in older individuals, is it ethical to sit by while many with MS continue eating diets high in saturated fats?

        At the same time, the USA MS society seems to be owned by the pharmaceutical companies. The Canadian MS society is somewhat better. It is difficult even to get for funding for small studies such as the following study showing the benefits of Vitamin D supplementation in MS:

        Immunological Analysis of a Phase I/II Dose-Escalation Trial of Oral Vitamin D3 with Calcium Supplementation in Patients with Multiple Sclerosis

        Jodie M. Burton, Samantha Kimball, Toronto, ON, Canada, Amit Bar-Or, Montreal, QC, Canada, Hans-Michael Dosch, Toronto, ON, Canada, Donald Gagne, Montreal, QC, Canada, Roy Cheung, Cheryl D’Souza, Toronto, ON, Canada, Melanie Ursell, Etobicoke, ON, Canada, Reinhold Vieth, Paul O’Connor, Toronto, ON, Canada

        OBJECTIVE: To characterize the safety and immunological profile of high-dose oral vitamin D3 (VD3) in multiple sclerosis (MS). BACKGROUND: Low UV radiation and 25-hydroxyvitamin D (25(OH)D) are associated with increasing risk and prevalence of MS. We have recently established that high-dose oral VD3 is safe in MS with apparent clinical benefit. This is presumably mediated through immune-regulation and a hypothesized shift away from the pro-inflammatory state believed to be key in MS. DESIGN/METHODS: A prospective controlled 52-week trial matched MS patients for demographic and disease characteristics, with randomization to treatment and control groups. Treatment patients started VD3 at 4,000 IU/d and escalated over 28 weeks to 40,000 IU/d, at which they spent 6 weeks. This was followed by maintenance with 10,000 IU/d for 12 weeks, 4,000 IU/d for 8 weeks and a 4-week wash-out (roughly 14,000 IU/d over 52 weeks). Calcium (1,200 mg/d) was given throughout the trial. T-scores (a measure of T-cell reactivity to test antigens) were measured at the first and last visit. MMP-9/TIMP-1 values and cytokines profiles were measured at visits 1 (0 IU/d), 4 (10,000 IU/d), 7 (40,000 IU/d) and 11 (0 IU/d). Statistical methods included sign rank, Mann-Whitney U, McNemar, Chi-square and repeated measures modeling. RESULTS: Forty-nine patients were enrolled (25 treatment, 24 control). Despite a maximum mean 25(OH)D of 413nmol/L (66-729), no adverse events, including calcium abnormalities, occurred. T-scores (TCS) dropped significantly over 52 weeks in treatment patients (p=0.002), but not in controls. The proportion of patients with a TCS below the pre-determined threshold was also greater in treatment patients (p=0.032). Reduction in TCS was significantly greater in patients with an end of trial 25(OH)D => 100nmol/L (p=0.032). MMP-9/TIMP-1 and cytokine analyses will be presented. CONCLUSIONS/RELEVANCE: High-dose VD3 (10,000 IU/d, possibly higher) in MS is safe and tolerable with immunodulatory effects. Such effects may explain clinical improvement in treated patients. Supported by: Direct-MS and the Multiple Sclerosis Society of Canada.
        Category – MS and Related Diseases – Clinical Science)

        I think those of us who were fortunate enough to be well nourished by our families and well educated by our communities are lucky. Were it not for these advantages, we might well no clue as to what to do about life style related health problems. I am a big advocate of health education–starting in elementary school and continuing through high school.

        By the way, we might have not RCTs relating to life style and MS but we do have many, many epidemiological studies that provide valuable clues. I think those with MS would do well to heed those clues in the absence of RCTs. The epidemiological studies suggest that low saturated fat, largely plant based diets that include fish are good for those with MS. It makes sense to me that if these diets are good for everyone else, why wouldn’t they be good for those with MS? Studies support this view–they show that obese MS patients, MS patients who smoke, and MS patients who have high levels of saturated fats in their blood, have more disability than those who maintain good health habits.

  10. nothingventurednothinggained said

    I don’t think anyone is saying this is a cure but this is the only explanation I have heard so far that makes sense. I understand that trials are needed and studies to be done a certain way for science to acknowledge it, but for the patients, this is already a promising new treatment.

    Please don’t slow it down.

    I would love to get back to work and have a life again and, so far, none of the treatments have done anything for my everyday symptoms.

    Maybe if more doctors would open up a little, we’d have more treatments and cures to diseases.

  11. lebgin said

    I am an electrical engineer with a masters in biomedical engineering with focus on dynamics of the cardiovascular system and medical imaging. This intro is to explain that out of exprience CCSVI Liberation Treatment is a safe practice, as firstly MRV/ULTRASOUND/simple blood tests are normal safe practice and secondly the operation of broadening narrow venous is another safe practice. If any it has positive effects for the body even if its not related to MS. So in Brief SAFE PRACTICE.

    Now back to Collin – Are 65 patients hallusinating? they all went to Buffalo to be part of the new test underway which seems to be very promissing as data does not lie.
    We have seen patients known with their worldwide credibility that undertook the operation and are truly reliefed. All of them are fascinated by Zamboni?? Some are undergoing the operation at Stanford Uni they never met Zamboni.
    Furthermore; a period of 2 years has already elapsed on the operation and it has proven reduction in Leisure and preveilance of natural form of life.
    Finally in this CCSVI matter how come only patients with MS have this venous problem?? It is science and data.. Let’s give it a chance and embrace it.

    Now I have recently heard of Dr. Gallipau at McGuill Uni. probably a colleague to Collin. Dr. Gallipau developped a therapeutic vaccince that is working on mice for a similar form of MS. Everyone embraced his new achievement so why not embrace other ppl achievements too??

    The million dollar question is: if he can stop MS symptoms and does not stop the cause surely the disease will remain & we will surely see new trends of development. Where CCSVI makes total sense..

    It makes more sense then: “undifined/still to be understood T-Cells go crazy for no reason and attack the autoimmune system”
    Every action has a cause..

  12. chiefumtaga said

    It seems like the weaker the evidence the Liberation treatment the shriller the opposition becomes. I found it odd that none of the MS patients “treated” by Dr. Zamboni did not have their neurologists on W5 to say (hypothetically) “On patient X, her Babinski and Hoffman responses are now normal, patient Y has a normal Evoked Visual Response, indicating reversal of optic neuritis and patient Z has no plaque lesions detectable his MR scans”. What I saw appeared to be testimonials of a select group of patients (almost like a NutraSystem infomercial), describing a reduction in very subjective symptoms, for example, ” I could walk before but now I can walk very well.” and “I no longer am so fatigued”. Most odd was the video of the Liberation Treatment (shown on W5), the initial segment shows contrast injected demonstrating “stenosis” Right Jugular vein, but after the balloon venoplasty treatment they show the Left Internal Jugular vein that is open. Also funny are the changing numbers of patients, the W5 reporter states 120 patients have been studided by Dr. Zamboni, but the paper written by Dr. Zamboni speaks of 65 patients, and in the W5 show has less than a dozen patients present at the Buffalo clinic. I think in two years the name Zamboni will be only associated with the ice machine.

    • viaferria said

      There are many videos here which demonstrate improvements and you yourself can decide the extent to which you find them subjective, You will love the Babinsky Reflex filmed in the video by ‘erekki’.

      Enjoy!

      http://www.thisisms.com/ftopict-12172.html

      • chrishadms said

        Don’t bother. Around here any improvement by ans MS patient is only the placebo affect. It’ll take a marathon being ran post surgery to have any credibility over here.

  13. Rebecca Hoover said

    You could be right. But it is interesting that there is a Dr. Dake at Stanford University who is studying the same issue and who is putting stents in the same veins Zamboni identifies as problem veins. In fact, Dr. Dake will be running a trial in the near future to start to assess the effectiveness of his procedure in improving MS outcomes.

    And yes, I also noticed that assessing disability can be rather subjective, that the study was not blinded, and that Zamboni did not even both to use the same MRI machine before an after to assess lesion changes. Moreover, he did not report on total lesion volume changes, only on active lesions.

    To me, the major problem is with a reporter who seems anxious to make a name for herself. The reporting heads in the direction of tabloid reporting–exaggerated. (By the way, I have an alien baby after being kidnapped by a UFO.)

    All in all, I think Zamboni has made a real contribution even if his surgeries do not work for MS. There are studies show that MS disability increases as serum total cholesterol increases and as saturated fat increases in the blood. I am hoping that Zamboni’s work would spur researchers to investigate the extent to which cholesterol, saturated fats and lousy diets wreck havoc with the neurological system as well as with the cardiovascular system, the liver, etc. Personally, I think that because MS has a relatively late onset, it occurs in part because many are eating very unhealthy foods.

  14. chrishadms said

    Ignore Colin folks…another doctor comes out of the woodwork showing how CCSVI causes MS lesions

    Dr. Lorne Brandes
    Have you heard of the Semmelweis reflex? It is defined in Wikipedia as “the automatic dismissal or rejection of scientific information without thought, inspection or experiment.”

    Although it is not certain who first coined the term, it takes its origin from the story of Professor Ignaz Semmelweis. In 1847, the Hungarian physician discovered that puerperal sepsis (childbed fever), an often fatal infection occurring in women after giving birth, could be prevented if only the attending doctors would wash their hands.

    As Louis Pasteur was still years away from developing his germ theory of disease, Semmelweis’ admonition was at once rejected and widely ridiculed by his peers. In desperation, he publicly denounced obstetricians as irresponsible murderers. Fearing that he had become insane, his wife, among others, had him forcibly confined to an asylum where he was soon beaten to death by guards.

    Not a good end for the man who discovered the antiseptic technique that ultimately saved tens of millions of lives!

    With that as background, was the initial response of most neurologists and the Canadian and American Multiple Sclerosis Societies to Professor Paolo Zamboni not a classical example of the Semmelweis reflex?

    His paradigm-shifting hypothesis that MS is primarily a vascular, rather than an autoimmune, disease immediately hit a brick wall of uninformed and often violent criticism.

    In dismissing his theory, one Canadian MS specialist wanted Dr. Zamboni, who is already treating humans, to go back and do studies in mice, while a blogger venomously denounced his findings as a myth… all without a second of pause or reflection, let alone a single shred of experimental proof to back up such statements.

    Happily, in response to the demands of thousands of patients afflicted with MS, who are generally unimpressed with the results of standard immunosuppressive therapies, the MS Societies on both sides of the border did a rapid 180 degree turn from their initial negative stance and are now prepared to jointly fund research proposals testing the Zamboni hypothesis. Good on them.

    Central to Dr. Zamboni’s theory is the destructive role played by iron from the venous blood that backs up and leaks into the brain as a result of impeded flow at sites of blockage further down in the neck or chest.

    There is not a physician or scientist who could disagree with Dr. Zamboni that heavy metal deposition in the brain is toxic, whether it be iron, copper or lead. That said, are there any other data that might specifically support a role for iron in the causation of MS?

    As it turns out, there are!

    Similar to other neurodegenerative diseases, including Parkinson’s and certain forms of dementia, researchers at the University of Calgary and Imperial College, London, have linked the inflammation and nerve destruction in MS to an important, but poorly-understood protein called alpha-synuclein.

    Although usually present in a harmless soluble (amorphous) form in cells, a series of alpha-synuclein molecules can join together to form an aggregate that is toxic to the brain. Moreover, larger-sized aggregates, called “oligomers”, do the most damage to nerves.

    Now, in two recently-published studies, German scientists have demonstrated that, even at low concentrations, oxidized (ferric) iron dramatically increases the aggregation of alpha-synuclein molecules into their most neurotoxic oligomer form.

    Voila! We appear to have a newly-discovered mechanism that could explain how leaked iron in brain tissue might promote the development of MS plaques, thereby providing a new level of support for the central theme of Dr. Zamboni’s vascular hypothesis.

    Somehow, I believe that Ignaz Semmelweis may be smiling…not to mention Paolo Zamboni.

    • Colin Rose said

      I would be guilty of the “Semmelweis relflex” if I were rejecting “scientific information without thought, inspection or experiment” but, however well-intentioned, Zamboni’s creative collage of naive theories, unreproducible observations, and anecdotal cures is not science.

      • remy9111 said

        Colin, Where are your experiments testing this theory. Go out and prove that Zamboni is incorrect. Please, we are waiting. You’re a vascular guy. It shouldn’t be too hard to prove, right? The problem is you keep knocking the same straw man down.

  15. notms said

    Take it from someone who does not have MS and is a doctor, this guy is way wrong and has no medical bearing in his responses.

    The picture of what someones leg looks like with CVI is misleading. A head would never look like that because there are multiple pathways for blood to drain from the head. I a leg with CVI there is NO BLOOD being drained. Many of these folks who are testing positive for CCSVI are 50% narrowed -not 100%!

    If the hemodynamics were off upstream from a stenosis in a Jugular a lesion seems like a natural course because it already happens in the legs. If the pressure is being changed by too much blood remaining in a vein, and the veins walls expand to allow more blood in, this could very easily cause the immune cells to cross the BBB. It would explain why the O-bands common in MS are also common in Strokes. They leak into the CNS because of a flow issue just like it does with a stroke. It would also explain why there is no immune system involvement in new MS lesions.

    I for one think this is absolutely fascinating research and I look forward to seeing it proven that MS is nothing more than years of accumulated Iron which has poisoned the CNS. I just wonder if opening up this narrowing will result in the same success it has for legs.

    I for one can’t wait to see where the science leads us…

    Again folks, ignore this guy…I have seen nothing on this blog to make me think he understands medicine.

    Daniels Thurgood MD…and no you don’t get any more than what I gave you in that signature.

    • Colin Rose said

      What would a 50% narrowing in a large vein, if it existed, do to venous flow or pressure? Nothing.

      Even Zamboni admits that jugular venous pressure on average is not increased in MS but he claims that there is some harmful mysterious disruption of venous flow patterns. Based on his description of these flow patterns it would be very hard for other investigators even to reproduce them let alone do a randomized trial of the “liberation” procedure.

      • notms said

        Funny, because in CVI of the legs a narrowing of 25% is enough to cause varicose veins and ulcers.

        What would happen in CCSVI is the dead blood left over will be depositing it’s Iron deep in the brain. As we know Iron in the body causes free radicals and all of the issues of MS could be because of free radical damage.

        Also, the pic of the leg and saying someones head would look like that is completely false. A organ bathed in fluid like the brain or spinal column is going to have a completely different response than an organ in the open air like the skin.

        Venous pressure is actually very easy to detect using Zamboni’s methods. I also encourage you to look at 100 normal people than look at 25 MS people. If you can’t see a clear and defined difference you are operating with blinders on.

        Also, if this is such a scam, why are people with SPMS and PPMS now able to stop taking baclofen after the procedure?

  16. Rebecca Hoover said

    Many MS patients I know are having their veins imaged and those who read the images are writing reports that say, for example, the left internal jugular vein is about 5% open. Almost all of the MS patients having this imaging done are receiving reports describing neck vein abnormalities.

    At minimum, it makes sense to me to look at the veins draining the brain in those with MS and then to attempt to determine if there is some relationship between any vein abnormalities and the location of MS lesions.

    It is interesting that one person for whom the a left internal jugular vein was described as being about 3% open had MS lesions only on the left side of the brain. This could be a coincidence but maybe not.

    • Colin Rose said

      Exactly what is a “neck vein abnormality?” As you can see from the reconstructions in the blog, normal veins are tortuous with dilations and narrowings. How many normal people have vein “abnormalities” if one looks hard enough. It seems these MS patients are going to imaging centres demanding that some neck vein “abnormality” be found and something IS found to keep them happy. If anyone can really define what an abnormal vein is, randomized imaging studies must be done before imaging any more MS patients on demand.

      • remy9111 said

        If I understand it, randomized imaging studies are being done right now at the University of Buffalo headed by Dr. Zavadinov. I guess we will have to wait until early 2010 to see what the results of the first group are. But will this really change Colin Rose’s mind? I highly doubt it.

      • Colin Rose said

        Zamboni has not presented a number quantifying “CCSVI” or any reproducible way of trying to measure it. The best number would be a simple measurement of jugular venous pressure, an increase in which is the only conceivable way venous abnormalities can cause BBB damage, but this is easily semi-quantifiable by looking at the neck veins in a half-sitting position, a procedure taught to all medical students. Even Zamboni, himself, says that jugular venous pressure is not increased in MS. So why even bother trying to quantify “CCSVI?” It seems Zamboni would like to believe that there are some mysterious venous flow patterns that somehow damage the BBB without an increase in venous pressure. If it existed, this would be a revolutionary new physiological phenomenon. Well, he has to provide a reproducible number to measure. Until then his hypothesis is untestable.

      • notms said

        Think of it this way, your vein is a burlap sack designed for XYZ pressure. Now the vein doesn’t drain the blood properly increasing the pressure in the burlap sack. Those moments of increase pressure is just enough time that one or two immune cells were able to squeek through the burlap sacks membranes. Get rid of the pressure increase and you get rid of the BBB crossover issue.

      • aldo29 said

        “In CCSVI, substitute circles are activated that bypass blocked veins and therefore reduce resistance to drainage, avoiding intracranial hypertension. The time of venous outflow is longer than normal, however, leading to insufficient venous drainage, as confirmed by the mean transit time measured in magnetic resonance (MR) perfusion studies, even in normally appearing white matter”
        Colin read the Zamboni paper http://www.ncbi.nlm.nih.gov/pubmed/19958985

      • Colin Rose said

        I have already commented on the JVS paper in the blog:

        “The Journal of Vascular Surgery has published another paper by Dr. Zamboni. Why it was accepted for publication is a mystery. The “study” is unblinded, unrandomized and unreproducible and is, therefore, unscientific and worthless. If anyone can figure out what Zamboni is actually doing and how he defines “CCSVI”, what is needed, before anyone rushes off to the neurologist demanding the “cure”, is a blinded randomized trial of the “liberation” procedure.”

        Zamboni’s method for examining neck veins is so complicated that anyone who wants to do it has to be given a special course on it. So, as I said in the blog, anyone who wants to repeat his studies can’t do so just from reading his papers. It will be interesting to see what other doctors, if they bother to show up for the course, will think of it once they see what he is really doing and whether it’s even worth the effort to do an RCT of “liberation.”
        ———————————————————-
        FROM CTV.ca
        “Meanwhile in Italy, one of the companies that manufactures the ultrasound machines used in the testing for CCSVI, is beginning to hold training sessions for doctors and technicians who want to learn the novel technique for scanning the neck and head. One training program is being held this week at the University of Ferrara with technicians who developed the tests, and with Zamboni. A second session is planned for March. Contact information for the course is available through: Claudio.Buffagni@esaote.com
        ———–
        The company involved is esaote. Why is the company giving the course? Are they selling a special variety of ultrasound machine? What is the nature of Zamboni’s association with easote?

      • aldo29 said

        One vascular surgeon is suggesting that another vascular surgeon is profiting from the practice of their profession? That’s absurd.

  17. Rebecca Hoover said

    The MS patients are paying to have this imaging work done so I am not sure that it is anyone’s business other than their own. When so many MS patients have such severe problems, one can hardly blame them for seeking answers. Nor does it seem appropriate to me to tell these patients they cannot spend their own money to secure the images. Just the feeling of self control, it seems, provided by the search for solutions has value in the treatment of MS.

    It is interesting that one patient even said her report described a portion one of her internal jugular veins as missing. I was very surprised at that.

    The issue is complicated and I agree with you that RCTs are needed to figure out what, if anything, is the relationship between any vein abnormalities and MS. Sometimes, for example, I am not even sure that I know what MS is. For example, studies show that white matter lesions (in non-MS patients) are more common among smokers. At the same time, MS is more severe among smokers. Likewise, white matter lesions are more common in those non-MS patients with high cholesterol and high blood pressure while both high cholesterol and high blood pressure are correlated with more severe disability in MS. I definitely agree that RCTs are needed.

    Among the many studies I have found to be interesting is the following:

    http://www.ncbi.nlm.nih.gov/pubmed/19895719?itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_RVDocSum&ordinalpos=2

    At the same time I do have to disagree with you on the need for RCTs before MS patients are encouraged to follow the dietary recommendations that most medical practitioners recommend for everyone else. When scores of studies show relationships between MS severity and life style factors and even nutritional deficiencies, l think practitioners who do not recommend life style improvements to MS patients are remiss. I also think it is appalling that some practitioners think nothing of recommending drugs that cost $25,000 per year when nutritional deficiencies such as Vitamin D deficiencies are left uncorrected.

    • Colin Rose said

      While people are free to spend their money on any test or concoction promising immortality or cure of whatever disease, I think it is unethical and unprofessional for doctors to perform tests for which there is no standardization and no evidence of any medical utility. Doctors should flatly refuse to do such tests until utility is proven. But, some doctors cannot resist the temptation substantial income from an investigative placebo, an innocuous test that makes the patient happy by providing an easily understood but unproven explanation for their misery.

      As for diet, I certainly encourage healthy eating for everyone, with or without MS. The question remains, does the same diet that prevents, heart attacks, hypertension and diabetes also prevent or treat MS? So far, we have no proof. Dietary supplements added to a healthy diet have yet to be proven clinically beneficial for anyone or any disease.

      • notms said

        If all doctors waited around like you want them to, no one would ever get better and no one would ever think outside of the box and fix diseases.

        Colin, if you truly are a doctor, do you really treat your patients with such condescending tones?

        If it’s a patients choice, just from the simple scientific process and the desire to help people, why is it so wrong to either help confirm or deny the theory?

  18. eddievos said

    Hello Colin, what do do with your sentence: “Dietary supplements added to a healthy diet have yet to be proven clinically beneficial for anyone or any disease.” How to define a ‘healthy diet’? Evidently, I submit, anyone with bone or arterial problems is not eating a ‘healthy diet’ so your statement has merit. Then again, eating a ‘normal’ i.e. cooked and processed diet, adding supplements DO improve health, for example in bone fractures and stroke with B-vitamins ABOVE those obtainable from any ‘healthy diet’ and this in LATE secondary prevention when one would think prevention is too late: http://www.health-heart.org/HIPandHOPE.gif Then, there is additional vitamin D preventing bone fractures and vitamin D is NOT obtainable in these amounts from ANY healthy diet [unless based on fish liver oils or unless living near the Equator]. Best wishes, Eddie

  19. Rebecca Hoover said

    I think we are relying a bit too much on RCTs here. Do we have an RCT proving that a 200 Kcal per day diet in Somalia leads to death from starvation? I don’t think so and I don’t think we need one. Likewise, I don’t think we need an RCT proving that MS patients, with very few exceptions, need the same essential nutrients as others. I think the failure to provide essential nutrition and to encourage healthy nutrition for MS patients is a human rights violation just as it is a human right violation when the nutritional needs of the elderly are ignored.

    As to whether the same diet that prevents heart attacks, hypertension and diabetes also prevents or improves disease course in MS, epidemiological and survey evidence suggests this is true. I think anyone with MS is unwise to ignore this evidence as many seem to do to their own detriment. In the absence of RCTs, we should use the best available evidence. The better MS doctors here monitor the nutritional status of their MS patients and encourage them to adopt very healthy diets as well as exercise programs. Then there are the other MS doctors who pump their patients full of expensive drugs and keep them coming back for frequent checkups. And the health care industry talks about MS patients in terms of revenues.

    I get very concerned about this issue because I have seen so many with MS who are malnourished. It is frightening and heartbreaking. Colin I wish you could see what appears to be unnecessary suffering in these patients–their tired and pale faces and their listless and resigned eyes. I wish you could see how they turn around when somehow better diets are offered. As to trying to use supplements in lieu of healthy food, I largely agree with you. However, I also recognize that even here there are exceptions. Vitamin D3 supplements certainly seem to be help as do calcium supplements.

    I think doctors who do not adovcate strong for proper nutrition for MS patients are doing MS patients a great disservice.

    • Rebecca Hoover said

      My typing leaves a bit to be desired. For the last sentence, I meant to type: I think doctors who do not advocate strongly for proper nutrition for MS patients are doing MS patients a great disservice.

  20. eddievos said

    Hello NotMS, I like the ‘burlab sack’ analogy for regular capillaries that have windows [fenestrations] but my histology book [Fawcett] is pretty clear that this does not apply to capillaries in the brain, i.e. there are tight junctions and astrocytes that appear to be pretty controlling as to what can escape the capillary system [venous or arterial] and red cells are rather humongous! Why iron does appear to accumulate in MS is curious and probably not happy but removing accumulated iron would, I imagine, not be probable in the weeks following the ‘liberation treatment’.

    In that sense, I’m with Colin in not understanding how this ‘liberation treatment’ could work, but let’s find out — if nothing else, it will help our understanding of this mysterious disease.

    About our host, he has massive experience and insight in the physiology and arterial fields and he has been proven right about his non acceptance of cholesterol-lowering drugs and say 95% of bypasses and angioplasties so routinely done at the most trivial of indications. That would have saved mankind not far from a trillion $’s [that is billion with a T] up to now in treatments that have side effects but no life extending value.

    • Colin Rose said

      Thanks, Eddie.
      Venous insufficiency in the legs in not due to venous blockages but to dysfunctional venous valves that normally keep blood flowing towards the heart with leg muscle contractions, the muscle pump. Venous valves can be congenitally absent, degenerate with age or be damaged by inflammation, DVT.

      Venous pressure must be hugely increased to cause BBB damage and possibly MS pathology. A number of cardiac conditions can cause large chronic increases in central venous pressure but never cause neurological disease. Zamboni says that average venous pressure is not increased. So, he is really saying that in MS there are sudden huge transient increases in venous pressure lasting fractions of a second, caused by abnormal venous flow patterns that can damage the brain. Why has not measured such huge transient increases? Until he does, there is no point in trying to image purported venous abnormalities that are hypothesized to cause such transient pressure rises. Venous imaging is meaningless unless associated with a physiologic measurement like pressure that could potentially cause damage.

      If there were huge increases in jugular venous pressure, chronic or transient, the effect would definitely be seen in the face as well as the brain.

      • eddievos said

        Colin, first best wishes for a happy and healthy new year. Rather than pressure, could it be minor local temporary blockage or vein wall deformation issues in veins and their capillary branches and/or reverse flow that those micro or minor vessels react poorly to? Why veins and not arteries and their trees?

        Regarding veins, my 30 year old copy of Harrison’s stressed .. The lesions .. predilection for elongated structures where myelin abuts pial VEINS .. are regularly seen … in relation to VEINS .. ..Relatively recent lesions show a predominantly periVENOUS distribution of the DEMYELINATION .. [CAPS by me].

        As an aside, there are the issues of RE/DEmyelination of nerve cells -negatively affected by statins- and the issue of MS being rare between ~30º North and South, and the role of vitamin D in MS — references here: http://www.vitamindcouncil.org/researchMS.shtml –and with vascular disease.

      • Colin Rose said

        Happy New Year to you, too.

        The BBB is likely to be weakest at the level of the venule. Whatever is causing the demyelination probably also weakens the BBB permitting infiltration of inflammatory cells. Just a guess. Certainly venous pressure and Zamboni’s “CCSVI” invention have nothing to do with MS causation.

  21. Rebecca Hoover said

    Wouldn’t a lousy diet weaken the endothelial function and BBB? MS is rare close to the equator but the Eskimos do not get MS–probably because of all of the Vitamin D and Omega-3s in whale and seal oils.

    By the way, Colin, there was one random controlled trial done that showed that an average of 14,000 IU of Vitamin D3 per day over a one year period did reduce relapses in MS patients.

    • Colin Rose said

      Except in severe end-stage deficiency diseases like scurvy, I can’t imagine diet causing breakdown of the BBB. Why MS varies with latitude is a mystery. 14000 IU of D per day is a lot more than generated by sun exposure and may have some effect but not a cure. There are many variables.

      • Rebecca Hoover said

        Here’s what Harvard says about Vitamin D3 from the sun: “Sun exposure can be a good source of vitamin D for some people: For example, in a light-skinned person, one, 30-minute, full body exposure to summer sun at noon triggers the release of about 20,000 IU of vitamin D into the circulation; in a dark-skinned person, that amount of summer sun would create about half as much vitamin D.” So 14,000 IU is not so much D3 at all.

        http://www.hsph.harvard.edu/nutritionsource/questions/vitamin-d-and-chronic-disease/index.html

        It is interesting that I have to take about 4-5,000 IU to keep my D level at the high end of the normal range. With a supplement of only 3,000 IU, my D level starts dropping.

        Anyway, I do think something is going on with circulation in MS, Professor Roy L. Swank thought that also (a neurology profesor from Oregon who specialized in the treatment of MS). I really don’t know if Zamboni’s theory is correct but I am glad that it will be looked at and that his work is causing a lot of discussion about circulation, diet, etc. in MS.

        Also, my heart is much touched by Zamboni. Here’s a guy whose wife has MS and sets out on the hero’s journey to find a cure. Is that not the classic mythological tale that captures our hearts?

  22. Colin Rose said

    The facebook group run by the same Joan quoted in the blog has cut me off from commenting.

    Here is her post to CCSVI in Multiple Sclerosis, deleted shortly after:

    “…We’re done with Dr. Rose. He can go away now. Real doctors do not blog or post on internet forums. If people want to read his words, they can go to his website/blog, but as administrator here, I’m done with his disregard for research. J”

    I blog, therefore I am not a doctor??

    She did not say that she had deleted me, leaving the impression that I had voluntarily stopped posting.

    What really upset her was when she mentioned that Dr. Dake had diagnosed bilateral jugular vein occlusions in her husband which were “liberated” with stents with miraculous improvement in subjective symptoms.

    Here is her post to CCSVI in Multiple Sclerosis on Jan 1, 2009, deleted shortly after:

    “My husband has MS. He had two completely occluded jugular veins and couldn’t keep his eyes open for more than two hours and horrible brain fog. He now is energized, working full days, driving again, reborn. I do this because I believe there are answers for MS patients around the world in Dr. Zamboni’s research. Now, as to pressure gradients…I will “comment”-

    This is from Dr. Zamboni’s paper regarding pressure gradients-
    Pressures measured in patients and controls respectively were not significantly different (Mann–Whitney) (superior vena cava 13 (SD 4) vs 13 (4), azygous 16 (7) vs 14 (4), IJVs 14 (4) vs 12 (5)). In contrast, the pressure gradient measured in CDMS across the stenosies was significantly different. For instance, pressure in the stenotic proximal azygous vein was 3.9 cm/H2O higher as compared with the pressure measured in the adjacent superior vena cava of the same subjects (p<0.01; Mann–Whitney); equally, pressure in the stenotic IJVs was 1.8 cm/H2O higher with respect to the cava (p<0.04; Mann–Whitney). Finally, the pressure gradient measured across the venous stenosies was slightly but significantly higher.

    I do not have my husband’s pressure gradient numbers, but Dr. Dake commented they were greatly relieved over the actual stenosis with stenting, and his collateral veins disappeared. I will get the actual numbers from his file.

    You have never linked ONE medical paper or any research to back up your claims. I am a layperson, and I have spent hours finding relevant papers and research to back my claims. What Dr. Zamboni has found is researched fact. Show me one paper which disputes any of his findings. J”

    I pointed out that bilateral total occlusion of jugular veins was not compatible with life and directed her to a site on jugular vein occlusion http://emedicine.medscape.com/article/461577-overview

    "Thrombosis of the internal jugular (IJ) vein is an underdiagnosed condition that may occur as a complication of head and neck infections, surgery, central venous access, local malignancy, polycythemia, hyperhomocysteinemia, neck massage, and intravenous drug abuse. It is also reported to occur spontaneously. IJ thrombosis itself can have serious potentially life-threatening complications that include systemic sepsis, chylothorax, papilledema, airway edema, and pulmonary embolism."

    Note that MS is not listed as a complication of jugular vein occlusion.

    I also pointed out that in there was no increased jugular venous pressure, measured by Zamboni himself, there was no way that "CCSVI" could cause brain iron deposition, MS or any other disease.

    I also asked her if Dr. Dake had charged for his services or did the "liberation" as a charitable act, given the highly experimental nature of the procedure. No answer.

    I leave it to the reader to draw any conclusions from this episode.

  23. eddievos said

    Every cell type has vitamin D receptors that regulate whatever [including calcium husbandry] and, as in all micro-nutrients, some people have increased or decreased needs for then.

    Question to ponder: arteries have endothelial cells that react to flow that tends to be from one direction only. Veins / venules / capillary veins also have endothelial cells but how well are they or some of them equipped to deal with a reversing flow? Does that potentially mess with their cell wall receptors, their function and/or permeability? Does it take time to get used to reversed flow?

  24. Rebecca Hoover said

    It is interesting that whatever is causing demyelination seems to first cause vein problems as opthomalogists have found. Dr. Roy L. Swank, who was the head of a University medical school’s neurology department and who specialized in MS, long ago said that, whatever is causing MS, the problem is increased with high saturated fat diets that serve as a stressor.

    Swank and many others have reported that the plasma and blood viscosity of MS patients differs from those without MS. Swank and many others have also reported that plasma transfusions are effective in reversing MS relapses. In fact, Mayo Clinic offers these transfusions to patients with severe relapses and their web site describes their successes with these transfusions. This points to something in the plasma that is causing both vein problems and demyelination. Could a very small change in relative pressure increase related problems as suggested by Zamboni? Hard to say.

    Here’s what Swank said:

    “The absence or shortage of a critical component in human plasma, the factor X, is fundamental to the production of the disease. This “surface active” material assists in preventing aggregation of the circulatory blood elements and is probably also essential to maintain an intact blood-brain barrier. When the circulation is stressed by certain environmental factors, factor X becomes deficient and aggregation of blood elements occur. A high saturated-fat diet is the most important of these environmental stress factors. The large amounts of fat, periodically introduced into the circulation in the form of chylomicra, compete with red and white cells and other chylomicra for this factor, which when in short supply fails to prevent aggregation of the blood elements. The circulation then becomes sluggish and the microcirculation is microembolized. A breakdown of the blood-brain barrier in scattered areas of the brain results. Toxins in the blood penetrate to the nervous tissues, there is biophysiological impairment, and then pathological changes occur. Finally, gliosis results to form the sclerotic patches (plaques) characteristic of the disease.”

    Swank also said that microemboli caused by saturated fats in MS patients caused problems. Here’s how he described things: “As the microemboli traverse the microcirculation, they dilate the capillaries, widen the endothelial junctions, and increase their permeability.” He then goes on to say that “toxic materials” escape from the capilliaries to surrounding tissues. “These materials flow to the area surrounding the venule where they become concentrated.”

    Colin, does this make sense to you? What’s your take on this?

    • eddievos said

      Hi Rebecca, why SATURATED fat? It’s inert. We have 2 basic types, the 12 carbon type found as 50% in coconut oil and I believe as about 20% of fats in breast milk. Healthy and easy to digest, antimicrobial etc. As is the 14:0 saturate ref: http://tinyurl.com/ygkxtz6
      Then there is the 16 carbon saturate cows and people make when placed in a grain feed lot [in our case a supermarket/restaurant] from excess carbs. We can elongate the 16 to the 18 carbon saturate [and their mono-unsaturates]. I believe most saturates we carry around are self-made for storage and use in lean times. How a saturated fat can damage the BBB -an initiating problem- is a mystery to me.
      Saturates are also made by full hydrogenation of unsaturated fats, but partial hydrogenation generates a bunch of bio-active [toxic] molecules. In diet, here’s the fatty acids:
      http://www.health-heart.org/FattyAcidTable.gif
      8% of the brain fatty acids are saturated and there has to be a reason for that: stability and anchor ..

    • Colin Rose said

      Swank’s factor X seems to be the inverse of the factor X of Weston Price, a dentist of old, who postulated that there was a factor X dissolved in saturated fat and was necessary for dental and general health. Either factor X is hogwash.

  25. aldo29 said

    Colin

    1. “Publishers of scientific papers” decisions are not the issue, content is.

    2. Take another well respected publisher “Nature” and it’s publication of this paper regarding hypo perfusion of cerebral white matter in relation to MS: http://www.nature.com/jcbfm/journal/v28/n10/full/jcbfm200872a.html

    Colin what is your opinion on the author’ conclusion (below)?

    “Accumulating evidence indicates that there is a decreased perfusion throughout the NAWM in patients with MS. It occurs in both relapsing–remitting and primary progressive MS, strongly suggesting that it represents an integral part of the disease process. Ischemic changes might be involved in the development of a subtype of focal demyelinating lesions (type III lesions). There appears to be a relationship between reduced white matter perfusion and cognitive dysfunction in patients with MS. We provide a hypothetical framework for the reduced perfusion, implicating a key role of astrocyte dysfunction, possibly related to a deficiency in 2-adrenergic receptors resulting in an impaired siphoning and release of K+ in the perivascular spaces. The underlying pathophysiological mechanisms need to be further elucidated as it could ultimately allow us to understand and treat this complex disease better.”

    3. Do we really need to repeat the infamously quoted phrase “..we don’t know what we don’t know.”?

    • Colin Rose said

      Whatever is causing MS seems to be associated with reduced blood flow. That’s interesting and is probably flow autoregulation secondary to reduced cerebral oxygen consumption, but it has nothing to do with “CCSVI.” Venous obstructions can ONLY reduce flow if venous pressure is very substantially increased and even Zamboni says there is no increase in venous pressure.

      From Zamboni’s paper:
      “Pressures measured in patients and controls respectively were not significantly different (Mann–Whitney) (superior vena cava 13 (SD 4) vs 13 (4), azygous 16 (7) vs 14 (4), IJVs 14 (4) vs 12″

      • aldo29 said

        Colin,
        1. The disruption to BBB (i.e. the venous endothelium’s integrity) past stenoses may be caused by shear forces from regular pulses of increased (AND by implication reduced pressure) rather than a constant high pressure flow.
        2. Going on from your quote of his Dec 2008 above you will notice that he is comparing non-CDMS neurologically impaired patients and non diseased controls WITH CDMS cases and finding THERE IS a significantly different pressure gradient.
        “Pressures measured in patients and controls respectively were not significantly different (Mann–Whitney) (superior vena cava 13 (SD 4) vs 13 (4), azygous 16 (7) vs 14 (4), IJVs 14 (4) vs 12 (5)). In contrast, the pressure gradient measured in CDMS across the stenosies was significantly different. For instance, pressure in the stenotic proximal azygous vein was 3.9 cm/H2O higher as compared with the pressure measured in the adjacent superior vena cava of the same subjects (p<0.01; Mann–Whitney); equally, pressure in the stenotic IJVs was 1.8 cm/H2O higher with respect to the cava (p<0.04; Mann–Whitney)."

      • Colin Rose said

        Shear stress damage to endothelium would require huge instantaneous flow velocities. Physiological flow stress actually helps to keep endothelium healthy and is thought to be one of the benefits of exercise. If Zamboni thinks ordinary respiratory flow variations could injure endothelium it behooves him do show so experimentally. But he refuses to do animals experiments because he is not a “mouse doctor.”

        Although his reporting is somewhat ambiguous I think Zamboni is only reporting gradients relative to SVC in MS patients, the “same subjects”. The same gradients may exist in normals but these low venous pressures are very hard to measure accurately in the clinical situation given the large variations with cardiac cycle and respiration. He gives no standard deviations of his calculated gradients, likely because they are large.

      • Rebecca Hoover said

        It is hard to say, though, if shear stress damage would require huge instantaneous flow velocities in the presence of Vitamin D deficiencies. It is important to keep in mind that 60% of those with MS have vitamin D deficiencies.

        http://www.ncbi.nlm.nih.gov/pubmed/19584181?itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_RVDocSum&ordinalpos=2

        At the same time, one has to look at other nutritional deficiencies in those with MS. Given the widespread malnutrition in MS patients, how about Vitamin C deficiencies?

        http://www.ncbi.nlm.nih.gov/pubmed/19489786?itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_RVDocSum&ordinalpos=5

        The more I think about the CCSVI business, the more irritated I get about the lack of attention to the basics in MS patients. When we have a huge group of patients that are malnourished and as sick as MS patients can be, I can’t understand why the heck the malnourishment isn’t taken care of first.

        I do understand that the drug companies make billions pumping out dangerous drugs for those with MS and now stent companies stand to cash in too. I also understand that they companies have a lot to gain if MS patients are kept malnourished.

        By the way, the doctor from Stanford who has been experimenting on MS patients and installing stents here and there in their veins used to be an executive at a corporation that produces and sells stents. Hummmmm, I wonder how many stocks he owns in this company.

      • Rebecca Hoover said

        Sorry to repost this but I inadvertantly posted this after a much earlier post.

        I’m steamed up about the way these nutritional deficiencies are ignored in those with MS. I see study after study showing that nutritional problems are linked to white matter lesions yet the Vitamin D issue, for example, in MS patients is just ignored by most doctors.

        http://www.ncbi.nlm.nih.gov/pubmed/19940273?itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_RVDocSum&ordinalpos=1

      • eddievos said

        Hello Rebecca, since Colin brought in the late dentist Weston Price, let me quote from the foreword to his book by some Harvard Prof .. dated 1938 [enter the disease you want] “Since we have known for a long time that savages have excellent teeth and that civilized men have terrible teeth, it seems to me that we have been extraordinarily stupid in concentrating all of our attention upon the task of finding out why our teeth are so poor, without ever bothering to learn why savage teeth are so good.

        So, why don’t people near the equator get MS to the same degree as us Northeners? Why are we naked apes; why are there white folk at northern latitudes if that was not a survival benefit? So, on the first of each dark month, I take a 50,000 IU vitamin D pill; cost $0.01/day.

        Dental fillings and coronary stents have roles but don’t cure the fundamental disease or biochemistry that caused the problem in the first place.

      • Rebecca Hoover said

        Eddievos, thanks! I agree with you that addressing what caused by the problem in the first place is key. That is also probably the fiscally responsible route.

        I think that first we must correct nutritional deficiencies and then, if there are still severe MS symptoms that must be treated, we try the more potentially dangerous and expensive drugs and surgical procedures.

        When I see desperate patients being tended to by officious physicians who prescribe expensive Tysabri infusions (think cash registers ringing), I think that it is too bad that we do not train all high school students how to search PubMed and read abstracts.

      • aldo29 said

        Colin, would you not agree that the presence of long term reverse flow dynamics or reflux (as has been observed and measured in IJV’s and azygous veins) is a potential BBB or endothelial integrity disruptor?

  26. Rebecca Hoover said

    I’m steamed up about the way these nutritional deficiencies are ignored in those with MS. I see study after study showing that nutritional problems are linked to white matter lesions yet the Vitamin D issue, for example, in MS patients is just ignored by most doctors.

    http://www.ncbi.nlm.nih.gov/pubmed/19940273?itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_RVDocSum&ordinalpos=1

  27. costumenastional said

    i will try to be polite, at least as humanly possible.

    everything needed to be said has been said above. i just want to say that even if ccsvi could help only ONE patient, then it should be among the available ms treatments.

    by the way, is this person a doctor? i wont even bother to check it out. cause if he is, i already know a few like him. and guess what: they are all filthy rich.

  28. notms said

    Wow I hope Colin has been reading the new info coming out about CCSVI and the preliminary results.

    I am curious – if the CCSVI continues to be proven right, will you stop your blog? How much other info have you posted on this site that dashed the hopes of others, when they actually were looking in the right direction but because you bashed them into thinking otherwise, they accepted their lot in life rather than fighting their disease.

    • Colin Rose said

      To which “new info” do you refer. I am unaware of any independent scientific evidence, old or new, supporting Zamboni’s “treatment”.

      If you care to read some of the other blogs, notms, you would discover that I am extremely hopeful, based on good scientific data, that a number of lifestyle diseases, causing untold misery and great expense, can be prevented and treated without drugs or operations.

  29. notms said

    Hey Colin I thought you may not like this, because it throws your theory out the window, but I thought it may be important.

    Putnam TJ (1935). Studies in multiple sclerosis: “Encephalitis” and sclerotic plaques produced by venular obstruction. Arch Neurol Psychiat 33: 929-940

    In 1935 he restricted the Jugs of dogs and within a year all the animals had developed MS like symptoms and lesions exactly like those found in MS.

    So are dogs good enough or do we need to use mice, which may not live long enough, to prove the connection?

    There is your medical justification to pursue this theory much farther.

    • Colin Rose said

      Obviously you haven’t read the Putnam paper. Here it is.

      dl.dropbox.com/u/4089353/ANP-Putnam-MS-Veins. pdf

      Putnam did not constrict the jugular veins of dogs. He injected lard oil into the doubly ligated longitudinal sinus. That’s a long way upstream from the jugular vein. Of the 14 dogs he studied, two had no pathology, and only three had something he interpreted as myelin lesions. I am not a pathologist so I can’t comment on the validity of his technique. There were no control animals with just saline injection to control for damage due to the pressure impulse from the injection. At any rate, Putnam’s “experiment” has no relation to Zamboni’s hypothesis. There has never been an animal experiment in which the jugular veins were occluded and for good reason; occluding both jugular veins would cause immediate brain death by reducing cerebral blood flow to almost zero.

  30. notms said

    http://www.bnac.net/wp-content/uploads/2010/02/bnac_newsletter_02-04-2010.pdf

    Sorry to disappoint you but it is beginning to look like the CCSVI advocates and Zamboni are more right than you want them to be.

    I talked to someone on the inside who said the numbers will make your mouth drop.

    • Colin Rose said

      “Testing for each patient will be done over two days here at Buffalo General Hospital. A new Doppler machine, specifically developed for CCSVI, will be used for all diagnostic procedures. BNAC-JNI will be the first Center in North America to use such a machine, and will begin to provide training for other Centers that have expressed an interest in mastering the art of CCSVI diagnosis.”

      Why is diagnosis of “CCVSI” an “art”? Why does it require a special Doppler machine? Why does it require special training? How is flow in intracranial veins distinguished from flow in arteries? Why does it take two days? If the obstructions purportedly causing “CCSVI” are extracranial why does one have to do intracranial Doppler anyway?

      “We are planning a press release by mid-February, as well as submission of these findings to the American Academy of Neurology annual con- ference as late breaking news.”

      “What I can tell you today is that the preliminary results are exciting scientifically and will generate a great deal of discussion among our colleagues, the worldwide press, and individuals like you who are following very closely any developments about CCSVI.”

      If the study is truly blinded, how can Zivadinov be excited about a result he shouldn’t have known when the newsletter was written? That raises serious doubt about how well he was blinded to the diagnosis. Rigorous blinding is absolutely crucial in using a technique like Doppler which even he admits is an art requiring subjective decisions. Unless great care is taken, very subtle hints can give the examiner some idea of the diagnosis.

      Truly scientific investigators do not plan press releases of their work before it has been peer-reviewed and published in a good journal. I do not evaluate research from press conferences and await the publication, if it ever gets accepted.

      • Rebecca Hoover said

        I am looking forward to seeing the results of this work. It will be interesting reading. I’m not making any predictions about outcome, however. The CCSVI theory makes sense to me but it does not match up with my own observations. I’ve noticed that some with MS have some very bad times for a few years and MRIs showing many lesions. Then, they make life style changes (i.e., following the Swank MS or similar diet), the lesions almost completely disappear, and they go for years and years without relapses and their EDSS’s even improve. I know one man who follows the Swank MS diet who hasn’t had a relapse since 1992. I know others who have gone more than a decade without a relapse on an MS diet. This is very unusual when MS relapses average about two per year for RRMS. Also, one study from Canada has shown that taking 14,000 I.U. per day for a year will reduce the relapse rate by about 40%.

        As a result of my own observations and the Vitamin D study, the CCSVI theory does not make sense. If CCSVI causes MS lesions, why would dietary improvements or Vitamin D3 supplements reverse MS to some extent? Doesn’t quite make sense.

  31. Thought you’d be interested!

    http://www.bnac.net/wp-content/uploads/2010/02/bnac_newsletter_02-04-2010.pdf

  32. What have you got to say about the announcements at Buffalo Neuoimaging Analysis Center: http://www.bnac.net/wp-content/uploads/2010/02/bnac_newsletter_02-04-2010.pdf ?

  33. [...] The Zamboni Myth [...]

  34. notms said

    http://www.buffalonews.com/258/story/951949.html

    Here is the latest study on CCSVI done scientifically and “correctly.” Unfortunately there were no scans done of the spinal column veins, which may well account for the lack of a higher number presenting CCSVI, but when the borderline people were removed, it shot the results up another 10%.

    Now Buffalo (Jacobs Neurological Institute) agrees there is something more to look at too!! They have plans on looking at another 500 people!

    To bad this scientific study will still not be good enough for Colin to remove the condescending tone from his articles. However I bet he is used to being more wrong than right about things so it should be no hindrance to him spreading hysteria or lack of hope on the internet.

  35. notms said

    http://www.ms-mri.com/docs/Simka-hamilton%20-ccsvi-1.pdf

    Here is a report of another doctor doing CCSVI and his findings. Sorry folks its so unethical and he must have faked his findings I am sure.

    I don’t see how he faked the pics but I am sure Colin will tell us.

    • Colin Rose said

      I have commented on Simka’s images in the blog. To repeat, injecting dye into large volume vessels like veins can result in streaming in laminar flow along the vessel wall giving the appearance of a stenosis. I think he is seeing normal veins which normally have have dilations and relative narrowings. If Simka really believes he is seeing a vein blockage it is imperative that he measure pressures up and dowstream from the blockage and show a significant pressure gradient in order to justify an unproven potentially dangerous procedure like putting a stent into a vein. I have seen no evidence that Simka has measured any venous pressures.

    • Rebecca Hoover said

      Notms,

      It is interesting that I don’t think we are going to get to the bottom of this for some time. I think we need a lot more evidence before we know what is really happening. Colin makes some good points, with an unfortunate attitude that wounds and alienates others.

      I personally am quite a bit bothered by Colin’s scientific approach. He insists, for example, that we need RCTs to prove the effectiveness of diet in treating MS, that the RCT done that showed Vitmain D is effective in treating MS was too small, etc. At the same time, even though there are no RCTs proving cigarette smoking causes cancer and that vitamin b12 effectively cures pernicious anemia, I am sure Colin accepts the cigarette theory and b12 treatment question.

      I also am quite dismayed that Colin seems to lack empathy for others. Rather than jabbing mercilessly at Zamboni and writing rather insulting comments about his national origin, it would seem appropriate to have some empathy for some who is desperate to find a cure for his wife with MS.

      • notms said

        Hey he hasn’t done his homework all that well either because of he would have emailed Zamboni and asked him to show him the work he did show the pressure differences, he would do it. Joan actually had them available for the longest tie on the CCSVI page on Facebook.

        If Colin was any kind of a doctor he would email Zamboni for the info. It’s there. Unfortunately it would take his power away and we don’t want him being shown up. Making sure your info is vetted before putting it up here – like the eyes bulging out of your head comment would make more sense than just putting up here “what you think.” I have talked to two different vascular doctors, one of whom just did an angio on my fathers heart, and he thought the analogy was preposterous. He also thought that Iron deep in the MS brain made a bunch of sense.

        Then I took my friend to his neuro. I asked his neuro about the eyes bulging comment and he just laughed and shook his head.

        No – Colin isn’t a special doctor, just a special person. :)

      • Colin Rose said

        In his JNNP paper Zamboni did report upstream venous pressures and they were normal. So, there is no way that any venous blockages he thought he was seeing could have caused brain pathology. He does claim to have measured very small gradients at various points in the venous system which occur normally with respiration and are not significant. Zamboni invokes a mysterious mechanism of “reflux” to explain the pathological effects of “CCSVI”. “Reflux” is seen only in his subjective interpretations of Doppler studies and has never been correlated to any hemodynamic measurement. To diagnose “reflux” and “CCSVI” one has to take a special course with Zamboni so he can explain what he is doing and seeing. He seems to be incapable of explaining it in words so that anyone can repeat it. One is led to conclude that “CCSVI”, “reflux” and “liberation” are not science because they cannot be disproven; they are high tech occult arts analogous to the ministrations of a shaman to expel evil spirits. If MS symptoms recur after “liberation” Zamboni can and has said that another blockage has appeared needing “liberation”.

        Angiograms of coronary arteries to the heart muscle have nothing to do with jugular veins. That is the problem. Angiographers are used to looking at arteries. Very few if any angiograms have been done of jugular veins before because there was no reason to and there still is no reason to. Veins are very tortuous with variable diameters along their lengths in keeping with one of their functions, the storage of a reserve of blood in case of hemorrhage. Simka and Zamboni choose to interpret these variations as blockages in spite on no evidence for any significant pressure gradient across them.

        If your friend’s neurologist doesn’t believe me tell him to do the experiment on an animal of tying off both internal jugular veins simultaneously. I predict that before the animal dies from having brain blood flow reduced to almost zero it’s eyes will protrude and the face will become blue and engorged. That’s what faces look like in people who have been strangled.

        “In strangulation cases, the following post-mortem appearances could be seen: Face swollen and blue, lips blue, eyes opened, eyeballs bulging out, pupils dilated, tongue swollen and between the teeth”

        http://www.bprd.gov.in/writereaddata/linkimages/114390320441.pdf

      • eddievos said

        NOTMS, it would be nice if you could keep your comments nice also. Our host has done in the order of 10,000 angiographies in his career so he is a real doctor, something you doubt. Evidently he knows about blood vessels and what they do. What kind of a doctor are you to use such tone? This is supposed to be a debate about science. Let’s keep it that way. vos{at}health-heart.org

      • eddievos said

        To NOTMS, back to the science: nobody argues about iron being present, the key question is how veins affect/cause that local excess. Zamboni in his recent article (JNNP 2009) seems to downplay iron, in fact he does not mention iron once in the text.

        He does mention some pressures differences (I believe the American author did not but I could be wrong) and they would be in the order of 2.5 cm of WATER pressure which is about 2 mm of mercury pressure. That ain’t much, being about 1/50th of our regular arterial blood pressure!

      • Colin Rose said

        In his JNNP paper Zamboni did report upstream venous pressures and they were normal. So, there is no way that any venous blockages he thought he was seeing could have caused brain pathology. He does claim to have measured very small gradients at various points in the venous system which occur normally with respiration and are not significant. Zamboni invokes a mysterious mechanism of “reflux” to explain the pathological effects of “CCSVI”. “Reflux” is seen only in his subjective interpretations of Doppler studies and has never been correlated to any hemodynamic measurement. To diagnose “reflux” and “CCSVI” one has to take a special course with Zamboni so he can explain what he is doing and seeing. He seems to be incapable of explaining it in words so that anyone can repeat it. One is led to conclude that “CCSVI”, “reflux” and “liberation” are not science because they cannot be disproven; they are high tech occult arts analogous to the ministrations of a shaman to expel evil spirits. If MS symptoms recur after “liberation” Zamboni can and has said that another blockage has appeared needing “liberation”.

        Angiograms of coronary arteries to the heart muscle have nothing to do with jugular veins. That is the problem. Angiographers are used to looking at arteries. Very few if any angiograms have been done of jugular veins before because there was no reason to and there still is no reason to. Veins are very tortuous with variable diameters along their lengths in keeping with one of their functions, the storage of a reserve of blood in case of hemorrhage. Simka and Zamboni choose to interpret these variations as blockages in spite on no evidence for any significant pressure gradient across them.

        If your friend’s neurologist doesn’t believe me tell him to do the experiment on an animal of tying off both internal jugular veins simultaneously. I predict that before the animal dies from having brain blood flow reduced to almost zero it’s eyes will protrude and the face will become blue and engorged. That’s what faces look like in people who have been strangled.

        “In strangulation cases, the following post-mortem appearances could be seen: Face swollen and blue, lips blue, eyes opened, eyeballs bulging out, pupils dilated, tongue swollen and between the teeth”

        http://www.bprd.gov.in/writereaddata/linkimages/114390320441.pdf

  36. eddievos said

    To NOTMS, please have a look at my postings item 35 above.

    About the cause of MS: since all animals have veins, is there an animal model of a species that naturally gets MS symptoms?

    Where WE, humans in away from the equator climes MS territories, differ is in having much less vitamin D, and about 1/4th the B vitamin intakes and 1/10th the vitamin C status of non food processing wild animals. The vitamin D vs MS ‘association’ for one is rock solid.

    If MS [like Alzheimer's and premature cardiovascular decline] is uniquely human and mirco-nutrient related, how can any drug or procedure be the solution?

    Could there be an anti scurvy, rickets or pellagra drug, or an anti MS stent? However, if an ‘open vein’ or happier venule alleviates symptoms .. I guess we’ll find out but skepticism is well placed.

    • Rebecca Hoover said

      Eddivos,

      I am glad you also consider the MS/Vitamin D association to be rock solid. The more recent research shows that Vitamin D is as effective in treating MS as any of the MS drugs–and if taken sensibly has almost no risks. The Vitamin D level is, however, optimally kept at the high end of the normal range.

      If I could get people to do one thing–it would be to ensure that those with MS get enough Vitamin D and eat the same healthy diet that wise doctors recommend for everyone (low in saturated fat, whole unprocessed plant food based with some oily fish).

      I know that I may be prophet screaming in the wilderness, however. LOL I talked to a cardiologist at my food cooperative on Friday when shopping and that guy eats so much butter and cheese that he has to take statins. When I ask him why he did that, he said, following a healthy diet is the “old-fashioned way” to prevent heart problems but the “modern way is to just give people drugs because they work so well”. Can you believe this? I’m afraid this guy may not have a heart attack but probably will get Alzheimer’s or dementia.

      Why do doctors place so much confidence in drugs when there is so much research suggesting the drugs are no substitute for a healthy life style?

  37. dwcooper05 said

    I do not know Colin Rose and I do no know Rebecca Hoover. I do know MS, having helped my wife through a twenty-five year battle that now has her quadriplegic, on a ventilator, fed through a PEG tube. See http://tinyurl.com/mfyh47 for more details.

    My Ph.D. was in engineering / applied physics, but I taught environmental science and helped teach biostatistics at a famous school of public health. I hope you will give my comments some weight, though I may or may not ever return to this site to discuss your replies.

    A healthy lifestyle is of general benefit, agreed. I recommend it for everyone, and my wife and I pretty much followed such practices into what are now our 60’s. I’ve seen the Swank diet, bee venom, dental amalgam, and a host of other suggested cures for MS come, and go. We did Betaseron until her white blood cell count became too low. Still, the disorder progressed. [Note that Dr. Zamboni is not claiming success for those with progressive forms of MS.]

    Disagreeing with Dr. Rose is fair play, but imputing bad motives to him [or the others in the discussion] is unfair and poor argumentation. I found his analysis of the weaknesses of the CCSVI hypothesis persuasive, at least for now. He does not have to do experiments to criticize it. Pointing out the weaknesses of the evidence so far serves useful purposes:
    – It sharpens the questions that need to be investigated.
    – It alerts those who are desperate for a cure to look more closely before leaping.
    – It slows down the rush to spend MS research money on an area that may be less promising than some of the other areas under consideration.

    We know there is a genetic susceptibility factor. We know that latitudes closer to the poles have more MS. There seems to be a vitamin D connection (my wife is mildly allergic to it, for example), perhaps related to the latitude effect. We know autoimmunity plays some role. Epstein-Barr infection in youth also seems important.

    The recent Buffalo studies found CCSVI in about 25% of normal individuals and about twice that in MS patients. That’s a clue, a correlation, but statisticians alert us that correlation does not prove causation. [Eggs and milk are produces in corrlated locales.] Zamboni’s inital work indicated a substantially higher percentage of CCSVI (qualitatively determined)in MSers than this and ZERO cases in the hundreds of controls he studies. That zero makes me doubt his work, but time will tell.

    We all have motives that are mixed, some self-serving, some generous, so let’s stop wasting time sorting out the angels from the villains.

  38. mamagirl3 said

    Omg… I am a 52 yr old female with M.S. and other health issues over the years. I, like ALL MSers would like to find a cure especially for the generations of my loved ones to follow and am grateful for any treatments that will help. Also, like most MSers, I have been following the amazing subject of CCSVI through Facebook and also “other” CCSVI sites. I have stopped writing on some of them due to the ridiculously, rude and unclassy people I have met on those sites. What a shame that people and especially TRAINED doctors and specialists get shunned because they have a different opinion or expect to ask questions before they “jump” into agreement with these types of people. Shame on the way they speak to doctors who BY FAR have had more training and experience in their lives than they could EVER have. I understand the wall blocked between some drs and pts. I worked for 5 eye specialists and know some drs can be smug, rude, insensitive etc… but so can some laypeople; but that doesn’t give the right to insult with a person with crude words who has major training and experience to get your point across! I research the internet over and over so I guess I too am now considered a professions “RESEARCHER” as some has put it…but where is your YEARS of EXPERIENCE?????? Everyone has a right to their opinion and I purposely stopped writing back and forth on a certain site because if your opinion DIFFERED from theirs on the subject of CCSVI, then you were literally ignored or got back rude responses. Researching the internet DOES NOT make you a medical professional… your word is not the ONLY word!!! I am sorry but I come from a generation that has morals and respect and I was taught there are better and more decent ways to get your point across. Whether of not I agree with Dr. Colin Rose is not the issue at the moment, I simply thank him that he has put himself out there on the line to “question” very important issues. Some may feel that he is rude to question but that was the very reason drs became drs.. to check into health issues and question them. I agree, not all doctors do what they took a vow to do, like many people in this world they have fallen astray but I am grateful that this issue of CCSVI is being questioned and checked into and I am sure my children and family feel the same. So kudos Dr. Rose for your bravery and insight… I welcome it though I may or may not yet agree with it and apologize for all the scrutiny you have to face while doing so.
    -MamaGirl3

    • Colin Rose said

      “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.

      • mamagirl3 said

        Yes, and it unfortunately happens that nowadays there is less and less clear thinking…….. :(

  39. chrishadms said

    I knew there was something wrong with you. Now I know what

    YOU ARE A COMPLETE ASSHOLE FROM THE HEAD TO THE FLOOR

    I can’t believe your sorry ass has nothing better to do than to twitter people.

    You know I am so happy my wife loves me and I have kids. You must be all alone.

    YOUR AN ASSHOLE AND A WASTE OF HUMAN DNA. GOD MAY LOVE YOU BUT NO ONE ELSE DOES.

    YOU SUCK YOU WORTHLESS FUCK

    • jazzalta said

      Do your kiss your wife and kids with that potty mouth?

      • chrishadms said

        Yes I do!!

        Whats worse than me telling this jerk exactly what I think is him going to the CCSVI twitter page and twittering every single person on there telling them it is junk science.

        The simple truth of the matter is my wife and kids would never, ever, be so disrespectful and mean as this man is. My wife and kids spend a good deal of time working with MS charities and other various community programs making this world a better place.

        My kids would never dream of doing something like this “man” (more like troll)has done. They are more well behaved, compassionate, empathetic, and better behaved than this man more than 3 times their age.

        As for my potty mouth. As my oldest put it, “Wow Dad you are really mad. Can’t say I blame you because this guy is a jerk!!”

        Don’t chastise me…I don’t care about your opinion anymore than I care what this Colin Rose – a supposed “doctor” (word used loosely)has to say. I have helped more people with MS than you or him could dream of.

        Make sure to send Colin a love letter, it sounds like you are someone he needs.

  40. jazzalta said

    As a sufferer with M.S. I wish to thank Colin Rose for bringing some logic and reason to this highly emotional topic. Keep up the good work.

    • jazzalta said

      chrishadms, when you show me the science (real science) complete with trials and replication then maybe you folks can be taken seriously. Until then, I only see desperation and floundering for a treatment at any cost.

  41. gothicrosie said

    I wonder how such a statement can be considered a valid argument: “The faces of people with bilateral internal jugular vein occlusion would like like the faces of people who had been strangled.” Strangulation is immediate act. Just as the body adjusts to the ballooning of a section of skin over time to create a larger portion of skin for burn victims, perhaps CCSVI is similar and the body adjusts to it but in a negative way.

    Do coronary arteries go from open to blocked in seconds and stop a person’s heart instantly? Is that not a disease with a gradual increase in blockage and with slowly degenerative results? Would it then not be a possible explanation that a gradual narrowing of the veins contributes to the findings of CCSVI?

    How about the possibility the condition is congenital and therefore the body has adjusted to the lack of proper flow from conception and then perhaps worsened over time to contribute to MS?

    I do not argue that this is the ‘cure’ we have all been looking for. I have a strong suspicion there are multiple factors behind the cause of MS and therefore there will be no silver bullet. But I do see this as a piece in the puzzle that should be carefully looked at. Perhaps Dr. Zamboni was a bit aggressive and unorthodox in his releasing of his preliminary data, but are not the most radical of ideas sometimes the ones that are right?

    We are reliant on drugs to help us function as close to normal as we can, we rely on various devices to do body functions that many do not even have to think about, our worlds are restricted to our homes and the doctors we visit, and we would all prefer to leave all those issues behind and become a cog in the wheel of society again. So if it means looking at something drastic and untested, then so be it. Our lives are only getting worse by the minute and any possible improvement is more welcome than another pill or shot.

    MS is more than a disease that stops people from moving, it causes great pain and suffering, robs us of our dignity, keeps us from participating in activities we once loved, and transforms our bodies from a familiar friend to a monster who likes to play tricks on us and keeps us guessing.

    Many people who have had the ‘liberation treatment’ already are experiencing improvements. Understand me when I say, these improvements mean the world to us and will be fought for tooth and nail. My legs no longer work they way they used to. I was a walker and would walk 3 to 5 miles just to have lunch with my mom on my lunch-hour at work. Now, I can’t walk further than 1/2 block before my legs erupt in an explosion of buzzing, pain, itchy-fuzzy-pins and needles and wobbliness that requires me to rest. I can’t squat next to my son’s desk to help him with whatever he is doing because even that results in the same feelings. I also am temperature sensitive and no longer can exercise or run around; which means I can’t play with my son at the park because I cannot do all the walking around.

    A moderate improvement for these issues, would be most welcome. Even if for a short time, so I may play with my son before he gets older and no longer wants to be in the company of his mother.

  42. aldo29 said

    Tsk Tsk Colin, your arguments are sounding more strident by the day! Finding new ways to misrepresent the facts, distort research findings, casting aspersions on the character of researchers and other medical professionals – now those activities indicate you are the desperate party in these discussions.

    It is not beyond the realm of possibilities that certain ‘people’ in positions of some responsibility would even resort to the device of creating false identities and then using communications from these identities to ‘create’ a base of supporters to bolster their positions in certain matters. Such people are known to have a personality disorder and are best helped by encouraging them to seek the service of a psychology professional.

    • chrishadms said

      You cannot argue with a fool so quit trying. I have talked to a personal friend who is a coroner. The reason people die the way they do when they are strangled in the person is lacking oxygen which in itself will cause the same response. As he put it, “The old movie (Sudden Recall)with Scwartzeneggar on Mars shows a really good response to lack of oxygen when they go to the surface. Their eyes and veins bulged too. It was a lack of oxygen that caused it.” He also said the body will make new veins to help drain tissue. He sees it all the time in heart attack autopsy’s. The heart will have extra veins starting to grow to take the load off the heart. Only with the heart it kills you. The brain it makes you a cripple.

      Look, we all know the issue isn’t with the blood getting to the brain, it’s the dead blood getting out. We also know that veins that shouldn’t be there, aka collateral veins, or other veins in the area, are taking over the draining load. Most of these people with these stenosis have a vast array of these collateral veins all start above the blockage and reform to the jugular below it again.

      See Colin isn’t a good enough doctor to realize the body is very smart and figures out ways to solve issues on its own. So it creates more veins to remove the excess blood. In fact a good way to look at this is a person has a relapse, the body creates a new vein to drain the blood, the person remitts.

      Now what happens when the space becomes to narrow for anymore collateral veins? You end up with SPMS, and after a few years of the dead blood hanging out in the brain or Spine, you progress to PPMS now that the Iron Poisoning is in full effect.

      I talked to a real doctor, one of the ones on the board of the NMMS board deciding what to do about the money for these CCSVI tests. I showed him the Putnam papers. His mouth dropped and said, “You mean to tell me they knew this in the thirties and no one has done anything about this?? Thank you so much for showing me some proof of concept. I am going to talk to vascular surgeons downstairs and see if they might be willing to test and angio some patients. If the Sinus can be filled, directly upstream from a Jugular and create lesions, I can’t think of a reason having a crimped Jugular for a long period of time wouldn’t create the same issue. It would explain nicely why MS takes so long to rear its head in some patients and why the shortest patients I have seem to present MS earlier than tall people.”

      Aldo29, it’s OK to have Colin shoot down everything. There is plenty of science about this. Go over to http://www.thisisms.com and go to the CCSVI forum and read the people’s reports about being liberated. I personally know a buddy of mine did 12 jumping jacks the other day. He was SPMS and damn near wheelchair bound before he was liberated. Now he feels great. Letting Colin tell you there is nothing there where there is over 100 people who are feeling better – well they weigh more than Colin.

      As far as him seeking a psychiatric help, he won’t do it. He needs to reinvest in his medical degree, learn some important basis about the brain, blood and Iron, then if he is still depressed and antagonistic he can seek a rageaholics meeting group so he can take his rage out on them and not us.

      Misery loves company. Colin is miserable, so he wants us all to give him company.

  43. [...] The Zamboni Myth: Why “CCSVI” is Surreal [...]

  44. costumenastional said

    http://www.fightforccsvi.blogspot.com

  45. dwcooper05 said

    I found costumenastional’s post (#44) quite offensive. The language was crude and threatening and repetitive. The level of hate suggests severe damage has been done to those parts of the brain that help provide emotional balance and rationality.

    One hopes that CCSVI will have helped him. I await reports from those who have been helped, after about a year from having received the treatment.

    Raising false hopes and dashing realistic hopes both should be avoided.

  46. costumenastional said

    I never raised false hope and my hopes are more realistic than anyone else’s. I assure you, especially since i have had the operation done 3 weeks ago and had no obvious benefit. Should i believe Colin Rose in the first place and pass? I dont think so.

    If you are able to filter the meaning of that so called blog (something that might take more than one time of reading for you) you ll come to understand that this has NOTHING to do with CCSVI’s credibility rather than answering to an irrogant person in a language he MIGHT understand. I am not in a mission here. Just added my 2 cents the way i felt i should.

    Personaly, i never gave a damn for Colin Rose or whoever, simply because i am still cabable of taking my own decisions. I have no regrets for taking this path, i still hope that something good may happen, i only paid 2000 euros for something that has MINIMAL risk and i am planning to keep my veins open and functional from now on, no matter what.

    The problem is that not everyone is like me. And Colin Rose addresses openly to all people without having the slightest clue about the central nervous system OR THE IMPORTANCE OF CORRECT BLOOD FLOW INSIDE THE JUGULAR VEINS AND THE AZYGOUS in the long term. And this is dangerous in many ways. Therefore, i strongly suggest for you to check out your veins and after they have been found occluded, take this out of the equasion via a simple angioplasty.

    DO NOT WAIT A YEAR as you say you will because nothing significant will arrise by then. See for yourself instead of waiting for others to take the hit on your account. When you are done with that, come back and comment on my brain status all day long. All in all, IF you are an MS patient, i suspect that you have more serious problems than my mental status to attent to.
    Have in mind that as we speak, some brilliant minds are trying to PROVE CCSVI true or false, using methods which have nothing to do with blogging around like crazy.

    I wish you my best of luck with whatever you decide. Good luck with your MS.

  47. ggoss said

    Like Dr. Rose, I also disbeleive in CCSVI as a cause (or cure) of MS. Simply because there has already been another “scientifically” established mechanism for MS rooted in an immunolological model which has nothing to do with a circulatory cause. And they can’t both be correct (they have no relationship to each other). And in fact, just like greater than 80% of people treated with a stem cell transplant, I also have been cured of MS. Excerpts from my blog. . . . .

    http://themscure.blogspot.com/

    CCSVI treatment as a cure for MS is really just junk science that has yet to withstand any valid scientific scrutiny. What started me really thinking about this is the question “for people with hemotomachrosis (a genetic abnormaility that results in EXTREMELY high Iron in the blood), why do they not experience MS at rates greater than the normal population?” Additionally, if MS is a vascular disease then why do immunomodulators (interferon, glatiramer acetate and tysabri) have been proven to slow down the disease for several hundreds of thousands of people taking the medication around the world who are afflicted with MS? These drugs should otherwise have no effect at all if the cause of MS is “vascular” in nature. The answer is because MS is not caused by high Iron exposure to nerve tissue (as CCSVI purports). The putative mechanism of cure for CCVSI and that of a stem cell transplant (for now the only scientifically demonstrated cure for the majority of people that choose to receive the procedure) is completely different. And they can’t both be correct. And in addition to all the scientific results established in the stem cell transplant clinical trials, I now know that a stem cell transplant cured me because of my lack of clinical progression. I’ve taken the time to ensure it’s definitive, not just a placebo effect.

    What this really comes down to is not Dr. Zamboni, or even CCSVI itself. This really is all about the whining constituents of the MS community that are looking for an easy, cheap and painless cure for thier MS. However, such a cure does not exist. MS is not a vascular disease, it’s an autoimmune disease (just like Rheumatoid Arthritis or Scleroderma). So there is only one cure for MS; it is a procedure that “resets” the immune system so that it stops attacking one’s own body. And as of today only a hematopoietic stem cell transplant can do this.

    And by the way. . . . for all you paranoid conspiracy theorists out there that think I’m against CCSVI because I’m somehow in cahoots with the drug companies. . . . WRONG!. . . getting a stem cell transplant has completely and 100% freed me from ever having to again take ANY drugs to treat my MS. After 15 years of use I’m now off all MS drug treatment since my stem cell transplant cure. In fact, if the conspiracy theorists were actually correct in thier irrational assertion that somehow big pharma is trying to supress a cure for MS, then the pharmaceutical companies would be dead against a stem cell transplant as a cure becuase it frees people from continued use of expensive immunomodulator drugs. Making a logical extension of this concept, it’s not a conspiracy that is holding back CCSVI as a cure. It’s more fundamental. . . CCSVI physically does not work as a cure.

    Now don’t get me wrong. . . . . I wish that the medical community and researchers could find a quick & easy solution to cure MS. Unfortunately such an easy solution is not here yet (and perhaps never will be). I thank god that I had the opportunity to choose to be cured of MS with a stem cell transplant, hard & expensive as it was. At least I feel I worked for my cure. And that makes it all the more valuable to me.

    My thoughts specifically on the most recdent CCSVI study. . . .

    I read the study design, protocol and results. There is no doubt it was a properly conducted study. But by design the study does nothing to associate “causality” of MS via CCSVI. So all the study indicates is that more study is required. It provides no additional hope of a CCSVI cure beyond the unsubstantiated claims already made by Dr. Zamboni.

    Bottom line of the study result summary. . . . . people with clinically definite MS are roughly twice as likely to have narrowed (or slightly restricted) jugular veins compared with people without MS. But the study did nothing to address the understanding or underlying reason of why this occurs (which is the additional study required). And also, why do 22% (a very large and significant number) of people in the study that have resistricted veins not also have MS? I go back to my consistent previous contention that it is more likely that CCSVI has a non-causative association with MS, and is not itself the cause.

    So even if CCSVI as a cause of MS were proved correct, based on the results of this trial only about half of all people with clinically definite MS could be cured. That is far lower than the 80%-85% of MS patients that have already been shown to be cured with a stem cell transplant. So which one is the cure?

    Food for thought. . . . . there is a substantially stronger correlation between T-cell loading and MS disability progression than there is with CCSVI and disability progression (which is why immunomodulator drugs have a significantly positive impact at reducing MS progression). So if weighing these CCSVI study results in the most favorable light versus the pharmacological studies of immunomodulators, the preponderance of evidence still stacks up overwhelmingly in favor of MS being an immunological (autoimmune) disease.

    By the way. . . I’m all for more research on CCSVI. There is clearly some relationsip between MS and restricted jugulat vein(s). I’d really like to know why. More knowlege, not less is always better. It’s just troubling to see so many people understandably looking for a remendy for thier MS and and then irrationally jumping on the CCSVI “cure” bandwagon with absolutely NO scientific evidence that it has any positive impact on MS, as is the case today.

    • costumenastional said

      I ve read your blog thoroughly. While i am very happy that stem cells seem to have worked for you, i really dont get why you are attacking Zamboni so hard. You must know something many of us don’t. I couldn’t help noticing that you post only the articles that are against CCSVI while there are so many other that support the theory.
      Don’t get me wrong. I ve heard some stem cell success stories. But i ve heard so many failures also…Let’s hope you ll continue to share good thinks with us all after a year or so has passed…
      Finally, i feel like saying congratulations to you. You payed thousands and thousands of dollars to undergo a very dangerous treatment with totally unpredictable results.
      May God help me so i wont have to go there…

      Good luck.

      • Colin Rose said

        I would put both stem cell injections and the “liberation” procedure for MS in the same category, a totally unproven, physiologically improbable, expensive, dangerous “treatment” to perform which is highly unethical outside of a randomized controlled trial.

      • chrishadms said

        This is what I have to say to the Stem Cells as a cure…..HAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHHAAHHAHAHAHAHAHAHAHAHA

        I know a grip of people who did this and got nothing.

        I also know I did High Dose Cyclophosphamide w/o the Stem Cells and that lasted as long as the friends I have that did the Stem Cells – roughly 2 years with 6 months of feeling really good.

        This guy announcing to the world he’s been cured and knocking CCSVI…especially with the data coming out of Kuwait, Poland, and now Buffalo…well it’s just pure over excitement on his part.

      • costumenastional said

        Yes Colin, i am sure you would. We all are actually.

      • costumenastional said

        How rude of you Chris to speak like that… Leave that man in his happiness dude. Where are your feelings? He ll find the truth on his own in a few months time.
        Just for the record, “liberation” treatment is not expensive. Colin can sing his song as long as he likes but as time goes on it s getting cheaper and cheaper.

      • ggoss said

        You have said reasonable things, costumenastional. As soon as CCSVI shows a single scientifically established positive result toward a cure, I’ll post it on my blog. If you know of such an article that is being kept secret, please let me know about it so I can post it to share with everyone else. And it’s true that a stem cell transplant is not an inexpensive procedure. But I don’t think that makes it any less of the cure it has been shown to be (in clinical trials and for me).

        The only thing that is troubling to me is to see so many people piling on the CCSVI bandwagon that has not a single shred of ‘scientific’ evidence as a cure. It seems to me that it pulls attention (and possibly resources?) away from other avenues of research that might also otherwise be promising. I’m still amazed that hemotopoietic stem cell transplantation is so lackadaisically accepted by the MS community as the cure option it is. I can only ‘guess’ (but not sure) that the MS community is overly-focused on the cost of a cure, instead of the cure itself. The CCSVI producre is definitely cheaper, even if inneffective.

        With that said, if CCSVI were somehow proved correct as the cause of MS, I’ll be the first person to admit I was wrong and eat my words. However, today if Las Vegas offered a betting pool for either proving or disproving CCSVI as a cause (and cure) for MS, I’d be putting all my money on the latter.

        Anyway, thank you for your congratulation on my cure. It was scientifically predictable that I had an 85% chance of being cured by undergoing the procedure. Luckily for me stem cell transplantation is not ‘totally’ unpredictale like CCSVI is.

      • costumenastional said

        Well, it would be a very long conversation so i ll keep it down to 2 questions?

        Did you have a CCSVI screening?

        Who told you about that 85% success rate for stem cells apart from your doctor?

        Same goes for me. When transplant is proved beneficial i ll be the first to go for it. But it may take even longer than it will for CCSVI.

        And remember. This is Colin’s blog. Where everything is junk science.
        But i guess you have now realized it yourself…

        Anyway, i really wish you my very best of luck mate. Keep us in the loop please.

      • costumenastional said

        Aw, one more thing: you stated that what you did is not as unpredictable as the “liberation” is.
        Are you for real?
        Did you even think before you say that?

        There is virtually no risk there friend. I had an angio and i am on Plavix and baby aspirin man!!!
        I have had a huge regime of chemo myself in the past so i wont let you say whatever you like. Chill out please.

    • chrishadms said

      Unfortunately it takes 10 years for anything to be deemed a cure. If anyone is saying something is a cure before 10 years it is not, not, not, not, cured. At the 10 year mark if you still are MS symptom free then we will talk cure.

      Whats wrong with me? Blunt honesty man. I kept a website for two years that got over a million hits a year. I have talked to everyone and their uncle about this stuff. I have doctors in my email that would shock you. One of whom is rather annoying about stem cells and CCSVI and how one is good and the other isn’t and we get into it all the time. He knows how I feel.

      When he has people 10 years out then I will get giddy.

      The Liberation procedure w/o a stent is as safe a procedure as you can have now days. The chemo I went through to restart my immune system could have killed me.

      • costumenastional said

        Dont get me wrong man. I was being sarcastic. Not towards you of course.
        And i totally agree with you.

    • ggoss said

      BTW Dr. Rose. . . . I agree with you that stem cell “treatments” or “therapy” (which are just stem cell injections) are snake oil. (In fact, the Government of Costa Rica just shut down the largest unproven stem cell treatment center in that country a few weeks ago.) Such therapies are not the same as a stem cell “transplant” (sometimes inaccurately called a bone marrow transplant) which does show a clinically proven cure rate of greater than 80%. I mention this in my blog. . . . .

      . . . . . regarding other forms of stem cell therapy that are offered in an after-market environment. There are many companies offering stem cell therapies that collect stem cells from adipose fat tissue, bone marrow and other sources, and then do an IV infusion and/or intrathecal injections. The theories cited for these treatments are usually valid, but from what I have learned not a single such “stem cell procedure” of this type has shown any clinical evidence for curing MS. Probably the downside risk is small for these therapies, but the upside usually fails to materialize and can be drowned out by the marketing hype of these companies (which is why these therapies are not available in the United States due to FDA restrictions). I feel sorry for people that get sucked into these programs that offer little clinical benefit beyond a placebo effect. And I feel especially bad for anyone seeking such a treatment in lieu of the true cure of a stem cell (bone marrow) transplant.

      • Colin Rose said

        Ggross, please give us the reference to the randomized controlled study proving that bone marrow stem cell transplant can cure MS.

      • chrishadms said

        Yes I need to see a randomized clinical trial.

        I also need to talk to more than just one person claiming to have their MS cured because every single person, in Canada as well, who has done the stem cells for MS, have all reactivated. Whether it was freeman or whoever.

        Until you are 10 years out you ARE NOT NOT NOT NOT cured. So that is science talking there, not me trying to be a fuddy duddy. One person going around beating a drum for a treatment does not a cure make.

      • costumenastional said

        There s no such reference. Rebooting the immune system (something that is not to be taken for granted anyway except if one thinks that destroying means rebooting)would mean that every single autoimmune disease would have found its cure. The problem is that it seems that it s not only a matter of immune reaction. There is something else going on. CCSVI could well be one of the factors that can trigger or at least contribute to the immune reaction, MS speaking. There are some indications to support the theory already. No doubts on that.
        But it seems it s not the magic bullet we were all hoping for.
        This is why further research is needed towards this direction. It may help some of us and help science understand how some diseases are connected to the vascular system.
        Zamboni never stated that a cure is found. For the time being, he only says that CCSVI is one factor to a multi factorial disease.

        All in all, Zamboni first showed to the world that autoimmunity may be secondary to something else. And this is HUGE for whomever can dig it.

        It is a fact that my veins were a mess pre op. As it is a fact that they will never be perfect. That “poisoned mind syndrome” (only way i can describe it)has subsided significantly. Everything else is still there, some nerves of mine are gone for good and CCSVI wont fix em. But i am positive that this op helped a bit while everything else failed. We shall all know better in a few months time.

        Until then, some of us should relax a bit because noone is capable of coming into solid conclusions. After all, MS patients spend A LOT of money for every kind of unproven therapy.This is the least dangerous.

      • ggoss said

        http://themscure.blogspot.com/2010/06/stem-cell-transplantation-reference.html

      • ggoss said

        BTw Dr. Rose. . . being a doctor I’m sure you already know that such a (stem cell transplant) treatment regimen is not allowed by the FDA to be a “randomized” study. So besides being illegal, it would also be unethical.

      • Colin Rose said

        “Being a doctor” I know that the FDA would not allow a dangerous, unproven treatment to be preformed at all unless it was done as part of a controlled trial. Controlled trials of unproven treatments are very ethical. Where did you get your stem cell transplant? What evidence do you have that stem cell transplantation can cure MS?

      • daedalus2u said

        There may be another explanation for resolution of MS symptoms following this “stem cell” procedure. The report is that a prolonged idiopathic fever is common. I would like to see if there is a correlation between idiopathic fever and resolution of MS symptoms.

        Fever all by itself has therapeutic effects on a number of neurological disorders. The treatment called “Fever Therapy” was the “standard of care” for neurosyphilis for a couple of decades.

        http://daedalus2u.blogspot.com/2008/01/resolution-of-asd-symptoms-with-fever.html

        The man who developed Fever Therapy won the Nobel Prize. It consisted of giving people malaria, letting them go through ~10 cycles of fever and then curing the malaria with quinine.

        MS is rare among native born in rural Africa and the Indian subcontinent, but in the UK, children of those ethnic groups have the same incidence as among the general population, implying loss of exposure to a protective agent.

        http://www.ncbi.nlm.nih.gov/pmc/articles/PMC488256/

        This pattern is strikingly similar to other disorders of immune system deviation, epidemiological patterns which have lead to the Hygiene Hypothesis.

      • ggoss said

        Phase III fully “randomaized” trial now in full swing currently treating patients in Chicago. . . .

        http://clinicaltrials.gov/ct2/show/NCT00273364?term=burt+and+multiple+sclerosis&rank=2

        A similar protocol that just finished phase II will begin randomized phase III starting 2013 or 2014 in Seattle. . .

        http://clinicaltrials.gov/ct2/show/NCT00288626?term=MS+stem+cell+transplant&rank=1

        Within a decade this will likely become the standard curative therapy for MS. And Zamboni’s Liberation treatment will likely be forgotten by that time having shown no scientifically verifiable curative efficacy.

        http://themscure.blogspot.com/2010/06/stem-cell-transplantation-reference.html

  48. daedalus2u said

    My own feeling is that MS and varicose veins do have a common cause, that of low basal NO levels. It cannot be fixed by any type of vascular surgery. There may be slight temporary relief, but the symptoms will recur if the patient lives long enough. I discuss the role of NO in vasculature remodeling here, and especially the formation of tortuous vessels and capillary rarefaction.

    http://daedalus2u.blogspot.com/2008/10/role-of-low-basal-no-in-capillary-and.html

    Many of the symptoms observed in the lifestyle diseases can be explained by low basal NO. Changing the basal NO level is actually quite difficult and there is only one way that I know of, and that method is not generally recognized (neither is the importance of the proper basal NO level).

    MS is only one of the neurodegenerative disorders brought on by low NO.

  49. ggoss said

    Hi Dr. Rose. Did you cut me off from posting? I have the info but the blog does not allow me to post.

  50. ggoss said

    I think I was trying post too much info at one time. I think it will be easier if you go to this reference page:

    http://themscure.blogspot.com/2010/06/stem-cell-transplantation-reference.html

  51. ggoss said

    That life preserver is looking a lot more like an anchor. . . .

    Studies Cast Doubt on New MS theory

    http://online.wsj.com/article/SB10001424052748703787904575403160155710380.html#articleTabs%3Darticle

  52. jjll411 said

    90 day update:

    My wife had the CCSVI procedure done 3 months ago. We saw dramatic and immediate improvement in fatigue and stamina. Subtle improvements continue to this day. Spacticity – gone. Cog fog – gone. MS hug – gone. Numbness in extremities – greatly diminished. Ability to curl her toes and wear her stilettos again – priceless. CCSVI may not be the ‘cure’ for everyone, but it is certainly part of the puzzle. It worked for us.

    • chrishadms said

      It doesn’t matter to this guy. To him it’s all a placebo effect. I hate to be this honest and blunt but with this guy unless you agree with him, you have just wasted whatever time it took to write your post. I am glad for your recovery but Colin isn’t.

  53. [...] Almost a year ago at a much heralded news conference Dr. Robert Zivadinov, a Buffalo-based early disciple of Paolo Zamboni, claimed to show some difference in the presence of venous flow patterns in the heads of MS patients compared to controls using special Doppler ultrasound techniques that had never been validated. He never published the details of this study and has apparently abandoned ultrasound in favour of MRI venography which gives an overall picture of venous flow patterns in all head and neck veins. Zivadinov has now published a well-blinded study using MRV in MS patients and healthy controls which shows no difference in venous flow patterns in the two groups. There are almost blocked internal jugular veins in some MS patients and some normal people. But such blockages are insignificant because of the extensive collateral veins and the emissary veins connecting intra- and extra-cerebral venous circulations, as I described in my original response the Zamboni hypothesis. [...]

  54. mammananny said

    My neurologist would not have paraded on TV either. Instead he doesn’t treat MS anymore.You can’t dismiss a 7.9 EDSS and total disability, power chair and home health care with therapy with a myth. But do rave on.

  55. mstruths said

    I am just wondering where Mr Rose got his credentials and when did he have the actual procedure done? If he has not had the procedure done, then he has no idea of what he is talking about making him look pretty stupid. He has a theory that Dr. Zamboni,s theory is wrong. He even has his own theory. Except, the only part that is wrong is how idiots like Rose like to twist the facts.

    The CCSVI treatment is NOT a cure for MS. But it is a damn good start and by far better than anything any doctor has come up with for symptom relief to date. And any relief from the symptoms that are killing you in his thinking, is wrong. Dr. Rose wants you dead and suffering.

    I can attest that the treatment does what it is suppose to do. I can say that because I have had it done. My doctors and I can also say that I would be dead if I didn’t have it done. I can also say that I still have MS but it isn’t killing me as fast as it was. I guess patients deaths are acceptable to some so-called doctors, but it is still murder if you do nothing to prevent it.

    Therefore Mr. Rose.. you are no doctor, you are just some scum in it for the fame and money by spouting out theoretical crap with nothing to substantiate proof and no regard for human life. YOU ARE the problem with our current medical system.

  56. chrishadms said

    Folks the guy is nothing more than a Rush Limbaugh or a Glenn Beck on for medicine. He may get paid by a major MS pharmaceutical company.

    I don’t even respond to his silliness anymore. He stops progress where we want to go forward.

    The best thing you can do is exactly what I did, realize he is a Canadian Quack and just don’t respond to his stupidity. The guy is only in business because we keep responding to him.

    Notice I don’t have one post about the topic, I just help people not to be upset by this nut.

  57. ggoss said

    Researchers publish results settling multiple sclerosis debate

    “This work is significant because for the first time we are able to definitively establish a cause-and-effect relationship linking the marked T cells to the development of relapses and show unambiguously that it was the same T cells that mediated relapsing cycles.”

    http://www.physorg.com/news/2011-02-publish-results-multiple-sclerosis-debate.html

  58. newman50 said

    I can’t believe how simple some of these “medical” processional are here. CCSVI is not about blockages it is about REDUCED OUTFLOW from the brain. If you disagree that the volume of outflow blood doesn’t have to equal the volume of inflow blood then PLEASE explain why. With the circulatory system being a closed system ANY restriction in blood flow will cause a deficiency at another point. This is SIMPLE fluid power dynamics. My neurologist loves to start talking bout the receptors in the brina and this and that but there is not ONE piece of evidence that can show that opening an occluded veins is hazardous. The use of stents with the CCSVI procedure has resulted in blood clots which makes me question the possibility of hyper viscosity or viscosity issue with the blood of MS patients. Has your big medical brain thought about that? How about the gender bias of MS? How does this disease affect women at a rate of 2:1 or higher? Maybe if one of you big brained “doctors” thought about the link between the X chromosome and blood clotting in hemophilia you might notice that women are XX and men are XY… hmmm 2:1 ratio there. What about the effects of estrogen on blood clotting? Does anyone notice that MS attacks seem to happen around times when there are hormonal shifts in the body? IE during pregnancy, just prior to menopause or midteenage years? The resistance to a simple AND inexpensive procedure from “knowledgeable” doctors so quickly and admittedly wreaks of a nefarious under current. My neurologist could have EASILY dismissed this by sending me to have my veins scanned but he doesn’t because he doesn’t want to know. Actions speak volumes over word or dialogue. In fact, this theory could have been settled by now had attending neurologist promptly had there patients scanned, this hasn’t happened out of fear of the results. Considering the amount of money that the government pays to care for MS patients it’s unbelieveable the opposition to this procedure by “trusted” professionals. Hang your heads in shame while you drive your new BMW

  59. Zuppy said

    Zamboni says no conflict in applying for MS patents

    Brett Gundlock/National Post Files
    Dr. Paolo Zamboni talks at the American Academy of Neurology annual meeting, Wednesday, April 14, 2010, in Toronto, Ont

    .Comments Twitter LinkedIn Email .Tom Blackwell Apr 2, 2011 – 7:00 AM ET | Last Updated: Apr 1, 2011 10:03 PM ET

    The Italian doctor behind a furiously debated theory of multiple sclerosis treatment applied for several patents to protect his discoveries long before they became widely known, and has worked closely with a company marketing an MS ultrasound machine built according to his specifications.

    Dr. Paolo Zamboni’s patent requests and corporate connections add a new twist to what is often characterized as a clash between entrenched, Big Pharma interests and a scientific renegade with forward-thinking ideas.
    The neurologists who traditionally treat MS patients have been among the harshest critics of the new hypothesis; Zamboni supporters accuse them of being blinkered to non-pharmaceutical alternatives, citing the funding many receive from drug companies whose products are currently the chief MS treatment. The Italian physician himself has said he was personally motivated to explore multiple sclerosis by his own wife’s struggles with the illness.

    Experts on intellectual property and bioethics say it is not unusual or unethical for academic researchers like Dr. Zamboni to apply for patents around their inventions, but note that it normally means the inventor or someone else wants to make money off the discovery, and suggest he should have pro-actively disclosed any commercial interests.

    Many medical journals now require that study authors reveal patent applications around their research, as well as industry ties, a policy encouraged by the World Association of Medical Editors in its ethics guidelines. At least three of Dr. Zamboni’s major MS papers list competing interests as “none.”

    “You would expect that if this was really being done in the public interest, that he would announce it. He would say, ‘Yes, I have these patents, I obtained them on purpose, in order to facilitate access,’ ” said Richard Gold, an intellectual property expert at the McGill University law school.

    “The fact he hasn’t said anything and it was uncovered, it wasn’t him who uncovered it, would indicate it’s likely for profit, and one should question his motives in the same way one should question anyone’s motives who is both publishing research and commercializing a product.’’

    Medical scientists take out patents for a number of reasons, including simply to ensure that their discovery can one day be developed by a company and aid mankind, said Jonathan Kimmelman a bio-ethicist at McGill who specializes in ethics of health research. Accumulating patents can also bolster academic standing, he said. It’s wrong to believe, though, that only drug company ties influence researchers, he added.

    “I think it’s an absolute error of reasoning to suggest there is no financial interest in non-pharmaceutical approaches to treating disease, including multiple sclerosis,” said Prof. Kimmelman.

    Dr. Zamboni, however, said it is “ridiculous” to suggest his patent applications and work with Esaote S.p.A., the ultrasound manufacturer, represent anything like the conflicts of researchers who receive money from drug companies.

    Esaote has merely provided equipment to his lab and funded professional training, and he has no plans to commercialize the inventions described in the patents, he said in an emailed response to questions.

    “Scientific passion is my more relevant conflict of interest,” said the vascular specialist.

    In fact, one prominent Italian neurologist who is highly skeptical of Dr. Zamboni’s ideas dismissed as insignificant any commercial interests the surgeon might have. What is important is completing a slew of studies now under way that should answer whether the theories hold water or not, said Dr. Giancarlo Comi of Milan’s San Raffaèle institute.

    Love for his wife gives Dr. Zamboni a “strong personal motivation,” said Dr. Comi in an interview. “This is really more than any economic motivation.”

    Medicine has never pinned down the cause of multiple sclerosis but the prevailing theory is that it involves an auto-immune response, where the body’s defences essentially turn on itself. Treatment now involves a range of drugs — which earn manufacturers billions of dollars a year — but their effectiveness is limited, and the side effects can be miserable.

    Dr. Zamboni triggered a massive upheaval in the MS world with his theory that the illness is caused by a narrowing of veins in the neck, dubbing the condition chronic cerebrospinal venous insufficiency (CCSVI). That constriction, he said, causes blood draining from the brain to back up, creating iron deposits and setting off the brain inflammation that is key to the disease. He proposed using angioplasty, where a tiny balloon is threaded into the vein and inflated to open up the narrowing — or stenosis — and has published studies suggesting it works.

    Glowing media coverage of Dr. Zamboni’s findings in late 2009 caught the imagination of MS patients, even as their specialists warned that the evidence was preliminary at best. Hundreds of Canadian patients have travelled to foreign countries to undergo the so-called “Liberation” treatment, which is not available here, and many say it has transformed their lives. One Canadian man, though, died after a blood clot formed during repeated treatments in Costa Rica.

    Those initial media reports talked of Liberation as a possible cure, and quoted Dr. Zamboni as saying it “could be a revolution for the research and diagnosis” of MS and that “I am fully convinced that this is very, very important.”

    In the two years before those reports, applications were filed for several patents covering Zamboni inventions at offices in Europe, the U.S., Canada and other countries.

    One details a “system for diagnosing multiple sclerosis,” which includes using a doppler ultrasound machine to detect blood flows and a personal computer to analyze the results. Others are for devices designed to better treat CCSVI, though some experts worry those inventions might increase the risk of internal bleeding and other complications.

    In early 2010, just as excitement about the Zamboni ideas was building, Esaote, based in Genoa, Italy, launched MyLab Vinco, a doppler ultrasound system touted in the company’s online brochure as “the only product designed for the diagnosis of CCSVI.”

    Mariangela Dellepiane, a spokeswoman for Esaote, said the company has worked with Dr. Zamboni and his centre for vascular diseases at the University of Ferrara for years, and developed MyLab Vinco according to his research. The firm pays Dr. Zamboni’s centre to train its customers on use of the system, but provides no other payment linked to its sales, she said in an emailed response to questions.

    Several of the clinics worldwide offering CCSVI diagnosis and Liberation treatment advertise that they have bought MyLab Vinco, stressing its connection to Dr. Zamboni.

    Ironically, the largest stake in Esaote is held by Switzerland’s Bertarelli family, which until a few years ago controlled the pharmaceutical giant Serono. Its top selling drug, with worldwide 2010 sales of $2-billion, is Rebif, one of the MS drugs that Zamboni’s supporters often decry. As well as Esaote, the Bertarellis’ company — Ares Life Sciences — owns two drug firms.

    National Post
    tblackwell@nationalpost.com

    .

  60. Zuppy said

    Coincidence or pattern of spurious claims with profit as the motivational factor:

    Dr. Paulo Zamboni, Vascular Surgeon – Patent: CCSVI The Zamboni Method

    Dr. Edward Tobinick, Dermatology – Patent: CSVS The Tobinick Method

    Step One……Lay the Foundations.

    ZAMBONI
    http://www.fondazionehilarescere.org/pdf/tesi_zuolo-en.pdf
    SCHOOL OF MEDICINE 2007/2008
    Department of Surgical, Anesthesiological and Radiological Sciences – General Surgery
    Dissertation
    Chronic Cerebrospinal Venous Insufficiency in Patients with
    Multiple Sclerosis: An Experimental Study
    Supervisor: Prof. Paolo Zamboni

    ========================================================================

    TOBINICK
    http://www.medscape.org/viewarticle/522597

    The Cerebrospinal Venous System: Anatomy, Physiology, and Clinical Implications
    Edward Tobinick, MD

    Authors and Disclosures

    Published: 02/22/2006

    ===================================================================

  61. [...] http://medicalmyths.wordpress.com/2009/11/24/the-zamboni-myth-ccsvi-surreal/ [...]

  62. ggoss said

    Wow. Even Zadinov now says that CCSVI doesn’t cause MS. How much longer will the CCSVI mob continue to claim that the earth is flat?!

    Doctor Challenges Cause Of MS And Treatment

    http://www.npr.org/2011/01/31/133247319/doctor-challenges-cause-of-ms-and-treatment

    “Meanwhile in Buffalo, [Dr. Robert Zivadinov of the Buffalo Neuroimaging Analysis Center in New York says] says his research on CCSVI already shows a clear picture emerging. “CCSVI is not the cause of MS. . . ” Zivadinov says.”

    The only real cure to stop the progression & disease activity of MS. . . . .

    http://themscure.blogspot.com/2010/06/stem-cell-transplantation-reference.html

  63. jjll411 said

    Why would any of you give any credence to the opinion of Colon Rose?
    Where are HIS clinical trials?
    Why is he attacking Zamboni with such vociferousness?
    Maybe peni$ envy – because he didn’t figure this out first?

    Don’t tell my wife that CCSVI treatment doesn’t work.
    Nine months post CCSVI treatment, she is almost symptom free.
    It worked for us.

    “The (Colon) doth protest too much, methinks.” Shakespeare (Modified).

  64. ggoss said

    Massive study disputes Zamboni theory of multiple sclerosis

    http://www.theglobeandmail.com/life/health/new-health/health-news/massive-study-disputes-zamboni-theory-of-multiple-sclerosis/article2125784/

    “David Hafler, professor and chair of the neurology department at the Yale School of Medicine, said it’s “shameful” so much attention and investment is being placed on an idea that is simply not true in light of findings about the immunological roots of the disease.”

  65. The mention of Joe Schwarcz at the beginning of this post does nothing to commend it to me.
    I have seen how he deals with those who don’t agree with him – with arrogance, condescension ,ridicule.
    Not a pleasant thing to witness .It destroyed any respect I might have had for his opinions.There’s something very wrong when you feel obliged to shoot others’ ideas down in a nasty way in order to make your own prevail .

  66. mammananny said

    One wonders why someone would protest so vehemently against a theory that at least offers some causal effects of this condition, whereas the autoimmune theory is at least 6 decades old and still unproven.It’s been my experience that the likelihood of one having ulterior motives increases with the veracity of their attacks against others or their views. There is no evidence to date that Colin Rose has any altruistic motives for his rants.

  67. ggoss said

    I find it so amusing when people continue to ignorantly state that the cause MS is not proven to be autoimmunity.

    Researchers publish results settling multiple sclerosis debate

    http://media.wayne.edu/2011/02/22/wayne-state-university-researchers-publish-results-settling

    “This work is significant because for the first time we are able to definitively establish a cause-and-effect relationship linking the marked T cells to the development of relapses and show unambiguously that it was the same T cells that mediated relapsing cycles”

    “Targeting such disease-causing T-cells in MS is definitely a valid therapeutic approach that should be pursued,” Tse added.

  68. I have to say, this stuff is hilarious. so many of these arguments against this article are from people who have no idea what they’re talking about, haven’t been to medical school (which they’d think was manipulated by pharmaceutical companies anyway), and just spread this nonsense around.

    Like this:

    “I can’t believe how simple some of these “medical” processional are here. CCSVI is not about blockages it is about REDUCED OUTFLOW from the brain. If you disagree that the volume of outflow blood doesn’t have to equal the volume of inflow blood then PLEASE explain why. With the circulatory system being a closed system ANY restriction in blood flow will cause a deficiency at another point. This is SIMPLE fluid power dynamics. My neurologist loves to start talking bout the receptors in the brina and this and that but there is not ONE piece of evidence that can show that opening an occluded veins is hazardous. The use of stents with the CCSVI procedure has resulted in blood clots which makes me question the possibility of hyper viscosity or viscosity issue with the blood of MS patients. Has your big medical brain thought about that? How about the gender bias of MS? How does this disease affect women at a rate of 2:1 or higher? Maybe if one of you big brained “doctors” thought about the link between the X chromosome and blood clotting in hemophilia you might notice that women are XX and men are XY… hmmm 2:1 ratio there. What about the effects of estrogen on blood clotting? Does anyone notice that MS attacks seem to happen around times when there are hormonal shifts in the body? IE during pregnancy, just prior to menopause or midteenage years? The resistance to a simple AND inexpensive procedure from “knowledgeable” doctors so quickly and admittedly wreaks of a nefarious under current. My neurologist could have EASILY dismissed this by sending me to have my veins scanned but he doesn’t because he doesn’t want to know. Actions speak volumes over word or dialogue. In fact, this theory could have been settled by now had attending neurologist promptly had there patients scanned, this hasn’t happened out of fear of the results. Considering the amount of money that the government pays to care for MS patients it’s unbelieveable the opposition to this procedure by “trusted” professionals. Hang your heads in shame while you drive your new BMW”

    A surgical procedure without reason is hazardous, and people have died from this. stents can result in clots without hyperviscosity in any person, it’s a foreign body within a vein. Your XX and XY theory is just a plain jump. You can talk about correlations all you want but they can have nothing to do with each other. It’s not a simple procedure, it’s a hazardous and possibly fatal procedure that hasn’t been proven to help at all, and when you tout it without knowing anything about actual human physiology, current scientific publications and statistics, how to critique a scientific publication’s data, and only go to forums and google your information, you’re potentially putting people at risk.

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