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The Best Science Writing Online 2012
Showcasing more than fifty of the most provocative, original, and significant online essays from 2011, The Best Science Writing Online 2012 will change the way...
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When vascular surgeon Paolo Zamboni reported in December 2009 that inflating a tiny balloon inside twisted veins in the neck provided relief from multiple sclerosis, he created quite a stir. The idea that surgically straightening crooked veins could somehow benefit a degenerative nerve problem was astounding. Physicians were skeptical. Zamboni himself concluded that his findings should be subjected to more rigorous testing. Regardless, many people with MS, which affects at least 250,000 people in the U.S., immediately began clamoring for the unproved treatment. Their demands, amplified through a wide range of social-networking platforms, soon proved impossible to resist. In the past year, for instance, hospitals in California, New York, Italy and Poland have offered the Zamboni treatment—at a cost of $10,000 or more because it is not covered by insurance.
Doctors found themselves playing catch-up every step of the way. Even before Zamboni published his results in the Journal of Vascular Surgery, a post on PatientsLikeMe.com (an online patient community) boasted news of his research, useful links and a dedicated Facebook URL. Community networks traded contact information detailing who would offer the procedure and where. Before-and-after videos were posted on YouTube. Like AIDS activists of 30 years ago but armed with much more powerful communications tools, patients challenged researchers and medical centers to explain why it was taking so long to offer Zamboni’s approach. Yet most MS experts believe that undergoing the procedure at the moment is a very risky proposition.
This episode highlights a growing challenge for patients: how to temper enthusiasm for experimental therapies, now widely and effectively marketed through personal testimonials posted online, until evidence shows that the treatments are likely to do more good than harm. “You can never blame people for being excited about something that sounds like good news, especially when they have a serious disease,” says Aaron Miller, a professor of neurology at Mount Sinai School of Medicine and chief medical officer for the National MS Society. “I think these social-media sites can have a positive function in that they allow patients to discuss research and share their experiences.” But, he adds, “they have a very major risk in leading patients to embark on therapeutic courses that are not necessarily appropriate for them or haven’t been established as being scientifically valid.”
A Dangerous Game
In the case of Zamboni’s work, it is easy to see how patients might be tempted to jump the gun and seek a treatment that initially sounds exciting. After all, the study findings came from a reputable surgeon (though not an MS researcher) publishing in a respected journal. As Daniel Simon, an interventional radiologist in Edison, N.J., says of the work: “It wasn’t Bob’s Journal of MS and Autobody Repair; it was the premier journal of vascular surgery.”
It is also easy to see why racing to get treatment can be a dangerous game to play. In the first place, one study, even a well-done one, does not show that a therapy is ready for prime time. Often in medicine, early positive findings wash away later. And Zamboni himself pointed out that the study had limitations. The small trial was not randomized, double-blinded or placebo-controlled—the combination of which is considered the gold standard in clinical research. Participants also continued to take immune system–modulating therapies known to reduce symptoms.
In the case of MS, as with some other disorders, the difficulty of knowing whether a treatment that seemed to work really did have an effect in a study is compounded by the erratic nature of the disease. The most common form—relapse-remitting MS—has a variable course marked by flare-ups amid symptom-free periods. So it is difficult to know if a certain treatment actually works or was simply taken during a naturally occurring remission. Patients taking placebo have often reported substantial improvements, according to Mount Sinai’s Miller.
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24 Comments
Add CommentAs a person with MS, I am waiting for better data on this procedure before considering it for myself. However, I feel compelled to comment on the appearance of yet another "MS crazies insist on bogus treatment" article.
Reply | Report Abuse | Link to thisThere are many reasons why people with MS feel so strongly about the potential for CCSVI. First, with one very recent exception, the MS drugs can only keep things from getting worse -- they don't actually improve things. Second, these drugs can cost over $20,000 per year and are an $8 billion a year market. MS patients are essentially cash cows. Third, the National Multiple Sclerosis Society only agreed to fund CCSVI research after a huge outcry from patients -- a number of whom called for people to stop making donations to the MS Society.
Meanwhile, it's difficult to have a lot of faith in neurologists, who have a great deal to lose if this treatment has any validity. A lot of MS patients (including myself) go undiagnosed for years because their doctors, including their neurologists, tell them that their problems are "all in their heads."
So, if MS patients are a little over-eager on this one, maybe there's a valid reason.
In 2008, I sent Dr. Zamboni's peer-reviewed published research to Stanford University, and encouraged the researchers at that institution to look into Chronic Cerebrospinal Venous Insufficiency. My husband, diagnosed with MS, was tested and shown to have major jugular venous stenosis. When supine, he had severely reduced blood flow through his brain returning to his heart. He was the first treated in the US and is almost 2 years post angioplasty, with no MS relapses, no progression, reduced fatigue, heat intolerence and cognitive fog. I never made a you tube video. I sent research to physicians, and continue to dialogue with doctors around the globe.
Reply | Report Abuse | Link to thisI find the whole slant of this article pejorative and misleading. Dr. Miller is a neurologist, and has been a vocal critic of funding vascular research in MS. To listen to a premiere cardiothoracic specialist discussing this topic, please visit www.ccsvi.org CCSVI Alliance is bringing doctors together for research and further understanding.
The published research is growing daily, as clinical trials are occurring around the globe. The venous connection to MS is not new, it goes back to Charcot and Rindfliesch. MRI and doppler ultrasound technology currently allow the researchers insight into slowed perfusion and ischemic injury of the MS brain.
As the first patient to be treated in the US for CCSVI (hint, I'm "Cheerleaders" husband from the above post, I can say the headline of the article is not in the spirit of what is really happening. My improvements from the CCSVI procedure were real, and some were immediate and dramatic - reduced daily brain fog, more useable hours during the day, increased ability to entertain social situations, no MS related flare ups or new symptoms. Also on my MRI comparisons over 2 years, no brain mass atrophy.
Reply | Report Abuse | Link to thisDo you really think anybody suffering from MS cares from which medium the information comes from if it proves to be correct, and more importantly helping improve the quality of life for those of us with MS?
All of the Dr.s involved admit we are in the early stages, but if Dr. Zamboni's discovery is in fact correct, CCSVI might just be a major root cause of MS. Decreased, an improper brain drainage (via the jugulars) might be the cause of the iron deposits we find in MS brains, which in turn possibly trigger the mylen attacking auto-imune response.
None of us involved have ever used the word "cure" but if a root cause, those of us willing to undertake CCSVI treatment are optimistic this could stop or slow progression. If my effects are merely "placebo" I think after 2 years since my stent surgery (ample time for such an effect to wear off) I'd even more confident in the reality of my improvement.
I recall sitting with our vascular Dr. at Stanford in 2009 looking at my severely excluded jugular veins on the MRI. Here was an anatomic deformity that could be addressed. For me, the decision to undergo treatment was a no-brainer. Compared to the severity of the drug treatments (esp. those being done by PPMS patients) CCSVI has a risk-reward ratio many with MS are willing to undergo, and many are seeing improvement. I still continue my regimen of supplements, exercise, and injections of Copaxone.
The idea that patients can research for themselves, share findings, and make their own informed decisions is what is so exciting about the CCSVI movement. Power to the patient and their loved ones!
Jeff Beal
composer, "Pollock", "Rome", "Monk"
diagnosed MS March 2007
www.jeffbeal.com
I read Scientific American often and am very disappointed to see such a slanted article here. Many of us with MS are intelligent, well educated, and not given to believing everything we read or hear without researching and understanding it thoroughly. The theory that MS is a vascular disease, as opposed to autoimmune, has been around for well over 150 years. There is a significant amount of research to support the vascular theory. Dr. Zamboni was able to link MS to vascular defects in the CNS because of the newest imaging equipment and angioplasty techniques - something not available to earlier MS doctors and researchers. Many of us who live with MS are experts on this disease. We live with it's effects daily and we copiously research both old and new studies. CCSVI captured our attention so quickly and profoundly because we were already aware that the autoimmune theory had little empirical support and that the vascular theory was supported by compelling evidence. But as an earlier poster pointed out, we are pharmaceutical cash cows - contributing more than $8 billion a year to the pharmaceutical coffers.
Reply | Report Abuse | Link to thisAnd those pharmaceuticals? The 4 diseases modifying drugs (CRABs as they are affectionately referred to by those of us with MS) have to be injected on a daily or weekly basis, cost upwards of $1500 per month, a host of miserable side effects and an efficacy rate hovering around 35%. Yes - only 35%! That's little better than placebo. The infusion drug that is now available - Tysabri - has a little better efficacy rate but a terrible safety profile. Scores of users have developed PML, a devastating brain disease that has left a dozen dead and many more badly and permanently disabled.
The contention of this article, that we people with MS have foolishly put ourselves at risk by being tested and treated for CCSVI by angioplasty does not speak to the truth. Angioplasty has an excellent safety profile.
The primary reason we in the MS community have been so vocal about CCSVI is because as soon as Dr. Zamboni published his results there was a rapid and very harsh response by the medical and pharmaceutical industry to shut down anything to do with CCSVI. With no good alternatives to offer people with MS, neurologists and the pharma industry stand to lose billions. Were it not for the internet, social networking sites, and patient activists, there would be no research going on today on CCSVI. That is the real story, the story Scientific American should be covering.
Zamboni's hypothesis does not have "a reasonable scientific rationale". "CCSVI" is junk science and his "liberation" treatment is a scam. No one including MS patients has abnormal blood brain flow due to blocked neck veins. In fact both internal jugular veins can be totally blocked with no adverse effects due to extensive collateral veins draining the head.
Reply | Report Abuse | Link to thisSee my blog for details.
http://medicalmyths.wordpress.com/2009/11/24/the-zamboni-myth-ccsvi-surreal/
I am surprised that a publication with your reputation has a number of factual errors and omissions in this article. For example, the Society of Interventional Radiology (SIR)has endorsed further research into Dr. Zamboni's theory. Last week the 23rd Annual ISET (International Symposium of Endovascular Therapies)devoted significant time over 2 days to discuss CCSVI with a panel of experts, including Dr. Zamboni. Over 700 people filled the room at both sessions to learn more about CCSVI. This began as a patient driven movement, true, but CCSVI is now well accepted in a significant portion of the mainstream medical community. Resistance naturally comes from the neurologists who have 'claimed' MS as 'their' disease. (Neurologists also used to treat diabetes until the field of endocrinology proved it was not neurological.)
Reply | Report Abuse | Link to thisMany, many patients have had their procedures covered by insurance. Your statement to the contrary is just factually wrong.
Your article states: "Yet most MS experts believe that undergoing the procedure at the moment is a very risky proposition." Well the so called MS experts are neurologists. They have a financial stake in shooting down this theory. The real risky proposition is for MS patients to continue to take the drugs that are expensive, don't help symptoms, are marginally effective, and often have devastating side effects, including death. Angioplasty is a very safe, minimally invasive procedure used daily in hospitals around the world for well over 20 years.
MS is an awful disease that I would not wish on my worst enemy. The MS Society is funding studies yet Dr. Miller continues to bash Dr. Zamboni's theory as 'junk science'. This is simply irresponsible. The drugs don't work for everyone, even when they are effective. And there are no approved drugs for the progressive forms of MS, which is what I have.
I had angioplasty of my veins performed in the United States by a reputable physician at a reputable hospital and have had good results. MS patients are intelligent, informed, and must be allowed to make their own decisions. You have an obligation to present a full, unbiased picture, which you have not done. For fact-based information about CCSVI I recommend the website www.ccsvi.org which is the CCSVI Alliance, a non-profit organization providing information about this exciting medical development.
Another factual error I just noticed. You state:
Reply | Report Abuse | Link to this"Participants also continued to take immune system–modulating therapies known to reduce symptoms."
The disease modulating drugs (DMD's) do NOT reduce symptoms. They can reduce the incidence of relapse or extend time between relapses in the relapsing-remitting form of MS but symptoms are not changed by the drugs.
The idea that surgically straightening occluded veins to have proper blood flow out of one’s brain is more than “astounding” it is normal.
Reply | Report Abuse | Link to thisNot only is there an opportunity to reduce or eliminate MS symptoms but to have blood flow out of the brain correctly might slow or stop the progression of the disease.
Most MS specialists are neurologists, who think this procedure is very risky? More risky than prescribing FDA approved Tysabri which was a randomized, double-blind, placebo-controlled trial where to date reports are that 85 people have contracted a the brain disease -PML, of whom 16 patients have died, while 69 are still alive with varying degrees of disability? Everything has a risk however this portrayed extreme risk or what might be considered, fear-mongering, is contrary to the perspective of endovascular interventionalists who perform angioplasty every day and contrary to the thousands of patients that have already been treated.
After decades and decades and tens of millions of dollars in pharmaceutical research on drugs that might reduce relapses, the origin and development of MS remains poorly understood, and its cause remains elusive. It has never been substantiated that MS is in fact an autoimmune disease. This finding of a vascular component has been around since 1863. In 1935, lesions on the brain by occluded jugular veins were replicated on dogs by Dr. Tracy J. Putnam, neurologist. "The similarity between such lesions and many of those seen in cases of multiple sclerosis in man is so striking that the conclusion appears almost inevitable that venular obstruction is the essential immediate antecedent to the formation of typical sclerotic plaques."
Following this vascular route we have read about Dow and Berglund (1940s), Zimmermann and Netsky (1950s), Dr. Torben Fog (1960s), Dr. Alfons Schelling M.D.(1980s),1990s Dr. Bernhard Juurlink and what has brought us all together is the research of Dr. Paolo Zamboni.
Unfortunately millions and millions of dollars have not been spent on this research perhaps because there was no money to be made not because it is not a possibility to be proven true.
The research money the MSS of US and Canada was presented to neurologists with strong ties to the pharmaceutical industry, the MS society or who have, nor their teams, firsthand experience with the procedure but more importantly with the testing.
Surprisingly or a tell tale, no funds were given to top CCSVI researchers at University of Buffalo, Stanford nor McMaster University who all have experience needed to expedite this research.
Reply | Report Abuse | Link to thisWhether YouTube, Facebook or online communication, we know the importance of being educated self- advocates and agree with the necessary research and clinical trials for the procedure. Unfortunately the national MS societies were very slow stepping up to the plate and have as yet to fund research on the procedure, instead adding several more years before the outcome of trials. This is where they lost the respect and support of many. Some are experiencing benefits, some none and a few worse but what we do know is that challenging basic assumptions about diseases has lead to some very important discoveries. Perhaps this will be one of them that alter the not so distant future understanding of MS
There has been recent exciting research on CCSVI, in the Journal of Neurology, Neurosurgery and Psychiatry (doi:10.1136/jnnp.2010.231613), the authors concluded,"...assessment of cervical and cerebral veins does not provide supportive evidence for the presence of CCSVI in MS patients. The findings cast serious doubt on the concept of CCSVI in MS."
Reply | Report Abuse | Link to thisAnother study looked into the theory that MS patients would have increased intracranial pressure(ICP) due to restricted blood drainage secondary to venous stenosis, a key concept of Dr. Zamboni's postulate. In the Multiple Sclerosis Journal (doi:10.1177/1352458510395982) the authors state, "In summary, there is no evidence of an increase in intracranial venous pressure in our MS patients due to a CCSVI mechanism in MS. Our findings do not justify operative procedures".
Of course we should not ignore the financial incentives that doctors associated with MS may have. Dr. Zamboni has applied for a United States patent for diagnosing Multiple Sclerosis, by detecting blood reflux using ultrasound (PCT No. PCT/IT08/00129). Dr. Zamboni is also a consultant for Esaote which manufacturers ultrasound machines used to detect CCSVI. What an oddly tangled web he appears to have weaved.
In regards to the videos on youtube of MS patients after having treatment of CCSVI, one can also find testimonials of MS patients walking after being cured by faith healers. After all hope, expectation and the placebo effect can have a great influence on the subjective course of a disease like MS. See Dr. Nolen's "Healing, A Doctor in Search of a Miracle" for his description of a young MS patient's experience at a faith healing event. Her experience is almost a duplicate of the reaction some MS patients report after their treatment for CCSVI (a subjective improvement in gait and a decrease in headaches). I find the comment on page 75 very illuminating "...because it (MS) is a cyclic disease and responsive to suggestion, it is one of the diseases charltans most like to treat."
I find it very sad that so many commenters accuse neurologists and the medical system in general of cruel, selfish intentions and conspiracies. Would you yourself do such a thing if you were in their position? MS is a cruel fate. Does it have to cause bitter suspicious projections of horrible inhumane act by 'them'?
Reply | Report Abuse | Link to thisOne of the main problems in issues like this is the money and social status that flows into the pockets of those who work for organizations that pretend to be non-profit.
Reply | Report Abuse | Link to thisIn a large number of cases... non-profits... are anything but non-profit.
The only thing that designation tells us is that the organization itself somehow fits the bureaucratic specs to fit into a particular category according to the IRS.
In a great many instances there are no small number of folks who take home a quite comfy paycheck while "working" at a "non-profit".
When it comes to diseases... a "non-profit" organization may well be founded for "legitimate" reasons. Soon, however, these organizations become "paycheck creators" and those who collect those paychecks have zero personal interest in the cause for which the non-profit was founded.
The very worst thing that can occur is for an actual cure to be found... such a cure kills off the cash flow to the employees of the organization.
The stench of self-interest reeks in the world of any and every "medical help" non-profit that exists.
As a minor side observation... I have been alive well over a half century... and it is forever to be observed that the health care industry is just that.. a soul-less industry seeking stats to spew upon the general population so as to increase their income... in both financial terms and in social approbation.
Reply | Report Abuse | Link to this@ e_caroline,
Reply | Report Abuse | Link to thisvery interesting comments on non-profit organizations fighting to prevent a cure for the disease they were originally set up find. Do you have any proof of anything like this actually occurring? Actual information would be appreciated, not speculation or musing. I hope you aren't casting baseless accusations at people or organizations that are trying to actually helping the afflicted.
After all, I can find no proof that the Juvenile Infantile Paralysis Foundation (the organization that funded research into Polio and set up the March of Dimes), tried to prevent Salk or Sabin from coming up with the vaccines that stopped the polio virus. In fact they received quite generous funding from that organization.
Similarly, the Multiple Sclerosis Society helps to fund research into the possible causes of MS, preventing MS from occurring and providing assistance to those affected by the illness.
I have discovered and invented a device that immediately stops the progression of any disease, allowing the body to quickly heal itself.
Reply | Report Abuse | Link to thiscbc.ca bruce voigt
How can anyone honestly criticize these poor people suffering from MS for wanting to give CCSVI a try? What alternative is there at this point? NONE, and that's the whole problem. Drugs? Please, the current batch of MS drugs are erratic and offer many patients little to no relief.
Reply | Report Abuse | Link to thisI just get so mad when medical folks dismiss Zamboni and CCSVI - at least he tried! What major medical breakthroughs have there been for MS patients in the last 10 years? Pretty much zero. I praise Dr. Zamboni for at least trying to think out of the box and challenge the MS research community with a new idea. What's wrong with that???
Again, the alternative to CCSVI right now is pretty much nothing. And nothing offers no hope. I just wonder if doctors understand this. I don't think they do unless they know someone with MS.
Eating is a good habit. We should eat 3- times in days. I have seen who are working with any organization or student. They never care about <p><a href="http://www.healthourhealth.blogspot.com">Our health</a>
Reply | Report Abuse | Link to thisthey just take minimum food and use to drink wines a lot. It is a main cause to harm our health.Many of us prefer snacks when they get bored and when you will ask why you are having at a time of dinner they use to tell us just time pass man. I don’t think this is a way to keep our health good.
Colros: My Cardiologist says that you are full of crap. So does even a basic understanding of physics and hydraulics.
Reply | Report Abuse | Link to thisSince history has proven beyond a shadow of a doubt that many Dr.s and medical researchers do indeed put their fame and wallets ahead of patient health and safety, I'd say yes it does need to have some paranoia and accusation. Other Dr.s sacrifice everything to help their patients so we mustn't make blanket judgements. There is nothing wrong with healthy skepticism.
Reply | Report Abuse | Link to thisThe one flaw in MS research is that it always assumes only 1 cause. Autism was labelled as 1 disease but now is listed as around 200 different disorders. The same situation occured with cancer. I have no doubt that we will find that MS has more than 1 possible cause and thus more than 1 possible treatment.
I doubt that increasing cranial blood flow is going to permanently cure anything but it may slow the occurance of symptoms. I've known a couple of people that were misdiagnosed with MS and eventually found it to be a food allergy rather than actual MS. They changed diets a little and have been symptom free for decades. One would hope that this kind of mis-diagnosis has become more rare since the 1980s.
Research on the brain is a tough arena. No living person wants chunks sliced out of their brains for study and dead brains may not indicate actual causes. There have been indications that a better Omega-3 to Omega-6 ratio might help build myelin sheathing. The jury is still out on this but it shows promise for a variety of things including heart disease and Alzhiemers.
I trust that you have patented this device and are going to tell us what it is instead of procliming this wonderful device without any hint that it actually exists. Not that I'm calling you a troll or a delusional idiot but without proof what else can we decide?
Reply | Report Abuse | Link to thisHere's a Youtube video of Zamboni answering a critic at the Controversies in neurology conference. http://www.youtube.com/watch?v=RFkE1HOZqK8
Reply | Report Abuse | Link to thishere's an article suggesting the high misery index and one of many troubling side effects of current DMD pharmaceutical therapy for MS .http://www.posters2view.com/ECTRIMS2010/view.php?nu=2633.
I had this treatment 7 months ago as part of a major US University program and have improved 75% and counting. Never got better before with drug treatment, just held back the MonSter a bit. Now I'm slaying the beast. I only take a baby aspirin a day now. Kind Regards
Patients who approach medicine as Jeff Beal (above) suggests--
Reply | Report Abuse | Link to this"The idea that patients can research for themselves, share findings, and make their own informed decisions is what is so exciting about the CCSVI movement. Power to the patient and their loved ones!"
are going to find themselves susceptible to pursuing risky treatment with no proven benefit. I would advocate that if you collaborate with the right physician, and ask the right questions (see "Questions are the Answer" website); you will be more likely to navigate to the sweet spot than when you research your questions without collaborating with your doctor.
I had my venoplasty for CCSVI in January at Albany Medical Center. What a wonderful placebo! My vision, hearing, energy, information processing speed, heat/cold tolerance, perpipheral pain and paraphasia all improved. My retina specialist is impressed, my cardiologist is supportive, and my neurologist is skeptical. But they all looked at the BNAC (Buffalo Neuroimaging Analysis Center) doppler study and MRI (which measured my brain iron) and were quietly impressed. Changing a paradigm is like moving a mountain. We keep on pushing. Participants in the BNAC diagnostic study and the people who were liberated are all getting together on Facebook and planning fundraisers to insure that more research is done. We want this all sorted out before our neurologists talk us into taking one more hideously expensive drug treatment with side-effects.
Reply | Report Abuse | Link to thisI work as a <a href="http://top-medical-schools.net/how-to-become-a-psychiatrist/">psychiatrist</a> and I can tell you that social Media helps not only to improve medical practice also it can help to get quality medical education!
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