I got a call on Saturday, November 21 from my friend Joe, asking if I'd heard about "this new thing, they think they may have found a cure for MS and I thought of you right away. You know anything about it?"
"Huh? I have no idea what you're talking about"
"It was on CTV, some kind of vein thing, I gotta go but you should look it up right away!"
Yeah, right I was thinking. Another bogus "miracle cure", probably scorpion venom or hot pepper capsules. Whatever. But I googled anyway.
Well I'll be damned, this one actually makes sense. And with a name like Dr. Zamboni, it has to be good, right? It's almost completely outside the box thinking. See, Multiple Sclerosis is a pretty mysterious disease. Prevailing conventional wisdom calls it an autoimmune disease, since the immune system does indeed attack the myelin sheathing of the nerves. A specific type of T-cell is found in the cerebrospinal fluid if you let them give you a lumbar puncture. I personally prefer Spinal Tap on DVD, thank you very much. But why? There's the rub. Virus? Bacteria? Food allergy? Nobody could say, although if you bring up food sensitivity with your neurologist you're very likely to get a pat on the head and told to stay off the internet.
Lots of us who have been diagnosed with the MonSter have pretty darn good results managing our symptoms by avoiding foods that our individual bodies don't tolerate. I avoid gluten, chicken eggs, casein (bovine dairy protein), and legumes (soy is completely toxic and horrible anyway and you should probably avoid it too, especially if it's unfermented), as well as most sugar and all chemical artificial sweeteners. Yeah I'm super fun to go out to eat with these days as you can imagine, but avoiding a relapse has become more important than having toast and a cheese omelette for breakfast, or Christmas cookies. Lacking any answers from the medical establishment, we go looking for ways to chill out our whacked out immune systems.
An Italian professor of medicine whose wife had MS, Dr. Zamboni went looking for answers. What he found is shaking the MS world to its foundation. In a nutshell:
He believes that vein disorder that he's called Chronic Cerebrospinal Venous Insufficiency (CCSVI) is what set in motion the neurological symptoms of MS.
snip
Zamboni, a professor of medicine at the University of Ferrara in Italy, has conducted research and found that nearly 90 per cent of MS patients in his study groups had a narrowing, twisting or outright blockage of the veins that are supposed to flush blood from the brain.
He also found that blood of his MS patients was "refluxing" and flowing back upwards to the brain, which he theorizes sets off a number of reactions, including possibly the symptoms that characterize MS.
With the "liberation" procedure, Zamboni inserts a tiny balloon into these blocked veins to "liberated" the flow of blood out of the brain.
In his small study of 65 patients who underwent the "liberation" procedure, to be released tomorrow in the Journal of Vascular Surgery, Zamboni says that 50 per cent of patients with the most common form of MS were relapse-free for at least 18 months.
In a control group of MS patients who did not undergo the procedure, only 27 per cent went 18 months without an MS attack.
Additionally, only 12 per cent of patients in the surgery group had brain lesions -- a sign of active disease -- compared to 50 per cent in the control group.
If you are so inclined, here is a .pdf of the study by Dr. Zamboni and his team. Something very interesting, in the early days of MS research, they thought it was a vascular disease, but when they had no luck treating it with blood thinners the theory was abandoned. But with today's medical imaging techniques, we can actually see the vascular structure and the blood flow, including the reflux of blood back into the brain.
Dr. Zamboni is no lone wolf on this, either. There was a CCSVI conference in Bologna in September which included researchers from all over the world:
Dr. Elliot Frohman, University of Texas Southwestern Medical Center Neurology, Dallas, Texas
Robert Zivadinov, neurologist and director of MR imaging dept Jacobs Neurological Institute, Buffalo, NY
Byung B. Lee, Georgetown University School of Medicine, Washington
Dr. Guilio Gabbiani, Centre Medical Universitaire in Geneve, Switzerland
Dr. Mark Haacke, the MRI Institute for Biomedical Research. Detroit, MI
Dr. Bianca Weinstock-Guttman, Jacobs Neurological Institute, Buffalo, NY
Dr. Alessandra Ferlini, geneticist at Universite deglie Studi di Ferrara
Dr. Patricia Coyle, Stony Brook University Hospital, NY dept. of Neurology
Dr. Roberto Galeotti, Azienda Ospedaliero- Universitaria di Ferrara, vascular surgeon
Dr. Fabrizio Salvi, UOC Neuroliogica Oepedale Bellaria, Bologna Italy
Dr. Michael Dake Stanford University, Stanford California - chairman of interventional radiology dept.
Although this research on CCSVI has been going on for several years, the MS Societies wanted no part of it. But then the CTV story was aired. The MS community online went completely gonzo, especially here in Canada where the story was shown. Canada is home to one of the highest incidence of MS in the world, btw. So very many of us contacted (read: barraged) the MS Societies in Canada that apparently they had no choice but to respond, and by the next day they announced they would accept proposals for grants to study CCSVI.
"As President and CEO of the MS Society, I am aware of the tremendous interest across Canada and around the world caused by the recent news coverage of the CCSVI study. Indeed I share your excitement and hope in the preliminary findings of this study. I also celebrate and respect the integrity of our research funding programs which will continue to ensure that the very best projects are selected and supported."
Yves Savoie
President and chief executive officer
President, Ontario Division
In the US, where the drug makers are treated more like overlords, the MS Society was more reluctant. In fact, there has been dramaticaly less press about CCSVI in the US than in Canada. Imagine that. But, they finally came around and are at least paying lip service to funding research. I'm not convinced by this statement that they actually will fund it, in fact the impression I get is that they're humoring us:
Q: Will the National MS Society fund research into CCSVI in MS?
A: The National MS Society is interested in funding research in CCSVI in MS. The Society welcomes research proposals from any qualified investigators whose research questions are relevant to multiple sclerosis. All proposals received are thoroughly evaluated for their relevance and excellence by our volunteer scientific peer review panels. We have invited researchers to apply for grant funding to explore this lead. If we receive a proposal related to CCSVI that is found to be outstanding and relevant to MS, we would likely commit to fund such a study.
Heh. Sounds real convincing. In the meantime, those of us with MS diagnosis are doing whatever we can to make some serious noise on this research. We are printing out abstracts and studies and information for our doctors so we can get referrals for the diagnostic tests on our veins. Many of us are of the opinion that whether or not CCSVI caused or is caused by our MS, if we've got blocked jugular veins causing blood to reflux into our brains and leaving iron deposits there, we should at least know about it! I am personally looking into getting an MRV (magnetic resonance venography) and a doppler ultrasound some time in 2010. If I have CCSVI, I will not seek surgical intervention right away, but I would like the fact that I have constricted or blocked veins added to the body of research. There is strength in numbers, and if we can show that indeed 91% of us have this as Dr. Zamboni found with his group, they will have no choice but to hurry along the research to fix us up.
About that fix. What has been done so far is ballooning or shunting the veins. Sounds easy, right? They do that to arteries all the time. Here's the rub though - veins are very different from arteries. They're more flexible and smoother, and they get wider as they approach the heart. If a shunt gets loose it could cause a clot or even the shunt itself to travel to the heart. Not my idea of a good time, and since my MS has been blessedly benign since my initial symptoms, I will let them perfect the techniques and devices before I would have any kind of surgery done.
In science, generally questions and skepticism are good. Outright refusing to see what's been put in front of you, not so much.
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.
Um, I wouldn't exactly call a research study with a control group "circumstantial". Circumstantial is the fact that I gave up foods that I'm sensitive to and have not had a relapse in over a year. Duh. The attendants of this education session/drug pushing meeting were not amused:
"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."
Dr. Zamboni was given the opportunity for rebuttal in the Ottawa Citizen:
I never discouraged MS patients from following treatments prescribed by their specialists. I never had "a hard time in answering any of the questions from the MS experts." Rather, I think that scientific exchanges between experts in venous circulation and experts in MS are still insufficient.
snip
Dr. Mark Freedman is right when he suggests we develop an animal model of CCSVI. Despite all the models of tissue injury from venous insufficiency described in the medical literature, such a scientific step will be certainly necessary.
On the other hand, the autoimmune concept in MS is built on feet of clay -- the animal model EAE (experimental autoimmune encephalomyelitis) where the antigen is brain tissue from another animal. In contrast, the recent description of CCSVI in MS demonstrates how inadequate EAE is. EAE assumes that brain circulatory function is normal and thus does not reflect what really happens in humans.
In turn, I invite scientists to develop a new model of MS, which takes into account the presence of extracranial venous blockages. I disagree that the development of a new animal model has to precede further studies on patients. This would be a parallel track.
Bottom line is, we don't have time to fuck around here. This disease continues to progress and will not stop while researchers screw around with tying off the veins of rats to see if they get MS lesions. The doctors and researchers of the various disciplines need to get over their egos and their territorialism and come together to do what they are supposed to be doing - curing this goddam horrible disease. Of course, with MS being described by at least one doctor that I've heard of as the "bread and butter of neurology", whether that happens will depend, I think, largely on patients loudly demanding that this research on CCSVI continue. We will either drag the MS Societies and neurologists kicking and screaming with us, or we will take our fundraising and abandon them altogether.
If you'd like to watch the CTV series on CCSVI and Dr. Zamboni, you can do that here.
If you have questions about MS for me, leave them in the comments and I'll do my best to answer them.
If you want to help, PLEASE spread the word about CCSVI, especially in the US where there has been so little press.
Cross-posted at A Creative Revolution.