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CCSVI: Separating Fact from Fiction

I just posted this to my blog, in response to the massive waves of misinformation and misunderstanding that are flooding the MS forums and chat rooms regarding the CCSVI theory.

All comments are welcome.

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Since the airing of a Canadian television newsmagazine piece on CCSVI, there has been a veritable frenzy on Internet chat rooms and bulletin boards regarding this radical new theory. Unfortunately, the tsunami of information that is being bandied about is often misleading and sometimes just plain wrong. Based on scant knowledge, many are making extraordinary claims regarding the theory and the treatment options it presents, most of them based on little actual fact.

For those unfamiliar with CCSVI (chronic cerebrospinal venous insufficiency), I've made two previous posts about it, which you can find here and here. I've been fastidiously following the development of the theory and the treatments being used as a result of the it for at least ten months now. Though I'm far from the be-all and end-all of CCSVI information, I do feel qualified to make some intelligent observations about it.

For those unacquainted with CCSVI, the theory basically states that blockages in the veins that drain the central nervous system (CNS) lead to an abnormal flow of blood through the CNS, which damages nerve tissue via several different mechanisms, and leads to the lesions and immune responses that are the hallmarks of Multiple Sclerosis. First proposed by an Italian doctor, Dr. Paolo Zamboni, whose wife was stricken with MS, the theory has won over several fervent supporters. Dr. Zamboni is treating MS patients with a modified balloon angioplasty procedure he calls the "The Liberation Procedure", and another physician at Stanford University is opening up the blocked veins of MS patients using stents. There is also a doctor in Poland who appears to be using a combination of these two methodologies. As knowledge of the theory has spread, many harsh critics have quite expectantly begun to ring in. I'll attempt here to cut through the noise, and present the facts as I know them, along with some commentary.

To begin with, let me state that although I remain somewhat skeptical, I'm a cautious believer in the concepts put forth by the CCSVI theory. It is certainly my hope that the theory bears fruit, as it will offer MS patients a myriad of new options to treat the disease, and will lead research scientists in entirely new directions as they investigate the many aspects of Multiple Sclerosis. Hopefully, it will help bring about a rethinking of the autoimmune theory of MS, which states that, for reasons unknown, the immune system goes bonkers and starts attacking the body's own cells. Quite frankly, we've been fed that line of ******** for far too long. If the CCSVI theory starts gaining significant traction, expect a withering storm of criticism to come from some mainstream neurologic circles, as well as from the pharmaceutical industry, which stands to lose untold billions in the sales of drugs designed to suppress the immune system.

Dr. Zamboni's research began with his imaging the vascular systems of MS patients, sufferers of other neurologic diseases, and healthy subjects. He reports that he found signs of vascular blockage in almost 100% of the MS patients he studied, but none in either the patients with other neurologic diseases, or the healthy subjects. On its face, this would seem to be very compelling evidence. However, as my doctors at the National Institutes of Health (NIH) have pointedly explained, this claim throws up some big red flags. Because MS is a notoriously hard disease to diagnose, and there are many diseases that mimic MS, in any large population of diagnosed MS patients, there will be a significant segment that have in fact been misdiagnosed. Therefore, finding 100% of practically any trait among a large population of MS patients is practically impossible. As a matter of fact, the way I first became involved with the NIH was as part of a study being used to identify patients that the National Institutes of Health could be certain actually suffer from MS, because misdiagnosed patients were skewing the results of many of the MS studies they had undertaken. The NIH is trying to identify a pool of patients they can be confident actually have MS, for use in future studies. This is how the NIH ascertained that it's very likely I do not have MS.

Still, the Zamboni findings appear to be compelling. Before they can be accepted as scientific fact, though, they must be replicated by independent researchers, and so far, no such evidence has been presented. There are several different research groups currently putting together studies of CCSVI, and a large imaging study is already ongoing at the University of Buffalo, so we should have either independent verification or refutation of the theory sometime within the next 6 to 12 months. Before we get these independent reports, however, it is extremely premature to state anything of certainty about the theory.

In my mind, the theory could explain several of the mysteries surrounding MS, but fails to explain many others. It's one of the first theories to adequately explain the formation of lesions and the immune response that are the calling cards of MS. It also explains findings such as those that tie cigarette smoking to an increased incidence of MS and a quicker progression of the disease. Since smoking is known to exacerbate vascular issues, if MS is in fact a vascular disease, it stands to reason that smoking would have a considerable negative effect on it.

On the other hand, the theory does not address what we know about the geographic distribution of MS, the male-female ratio that is well known to exist in MS, the existence of "MS clusters" (which would seem to point to an infectious cause), or the unmistakable link between MS and Epstein-Barr virus (100% of MS patients are infected with EBV. I know, many of you reading this have never had Mono, but the vast majority of people infected with EBV have no idea that they carry the virus. It can often be asymptomatic, or presents as a bad cold or flu).

Having said that, MS is an extremely heterogeneous disease, and it may be that CCSVI is THE answer for a subset of MS patients, but may play only a partial role, or no role whatsoever in others diagnosed with the Multiple Sclerosis.

As for the surgical interventions now being used on patients whose imaging (via MRV and/or Doppler imaging studies) indicates that they have venous abnormalities related to the CNS, there are controversies surrounding these, as well. The problems stem from the fact that the procedures being used were all developed for use in clearing out the obstructed arteries of cardiac patients. Remember, CCSVI is concerned exclusively with veins.

There are major differences between arteries and veins, both in form and function. Arteries are designed to facilitate the outflow of blood from the heart to the various organs and regions of the body. They must be able to withstand the tremendous internal blood flow pressures generated by the beating heart, and thus their walls are stiff and resistant to tears and breaks. Veins, on the other hand, function to return deoxygenated blood to the lungs and heart. They are designed to be flexible and pliant, and their walls are much thinner and more prone to tearing than the walls of arteries. Arteries grown narrower in the direction of blood flow, while the opposite is true of veins, which grow wider as they return blood to the cardiopulmonary system. Therefore, a stent that gets loose in an artery is typically only pushed deeper into that artery. A stent that gets loose in a vein generally has a clear path to the heart.

In self-reported results, Dr. Zamboni's balloon angioplasty Liberation Procedure appears to be quite effective in reducing relapse rates and disease severity. Unfortunately, as many as 50% of the patients treated suffer restenosis of the veins opened by the Liberation Procedure, and thus require multiple interventions. As with any surgery, there is risk involved, and that risk is multiplied each time the intervention must be repeated. Furthermore, stenosis that is found in problematic areas, such as high in the jugulars, is not treatable by balloon angioplasty.

The surgery being attempted at Stanford University is much more aggressive, and places stents at the stenosed areas of blockage. Stenting has very rarely been tried in veins, much less in veins associated with the brain and spinal cord, and the stents used have been almost exclusively designed for use in arteries. So far, slightly over 60 patients have been treated with this procedure, and there have been some serious complications reported. Despite the fact that I have a significant stenosis in my left upper internal jugular, my doctors at the National Institutes of Health have repeatedly and adamantly warned me against undergoing this procedure, citing the possibilities of brainstem hemorrhages, stent migration (which would almost inevitably lead to stents finding their way into the heart), and the ever present danger of bleeding and blood clots. Although the majority of the patients that have undergone this procedure report positive results, a minority have had a difficult time recovering from surgery, and have reported nerve pain and nerve damage. There have also been reports of much more serious complications.

In short, the research surrounding CCSVI appears to be very promising. Until this research is replicated by independent organizations, no real conclusions can be drawn. There have been many other promising leads in the history of MS research that have eventually led to dead ends. I'm hopeful that CCSVI will not be one of them, and instead will lead to a seismic shift in our understanding of not only MS, but other so-called autoimmune diseases as well. I cannot make any such statement, however, until the research is verified by multiple sources. As for the surgical procedures now being offered to treat stenosed veins, they must be characterized as experimental, and as such, carry with them a sizable degree of risk, more so with the stenting procedure than with balloon angioplasty. If CCSVI theory turns in to CCSVI fact, these surgical procedures will in time be refined, and the risk in undergoing them diminished.

As exciting as Dr. Zamboni's research is, I think it's important that the MS community as a whole steps back and takes a breath, and waits to see what further research bears out. I understand how hard this can be with a progressive neurologic disorder breathing down your neck. Believe me, I'm nearing the point of desperation, but in situations like these, we cannot let hope and emotion cloud our actions and understanding of the issues at hand. These are potentially life and death matters, and need to be approached with clarity of mind and a complete grasp of the complicated issues at hand.

Awesome post, thanks for this!

That helped me a lot. I was having problems understanding everything, and now I have a bit more understanding about it. I'm going to keep following the research, but maybe I wont show the information to my regular doctor just yet.

Might mention it to him "in passing" and ask him if he can research it and explain it to me sometime. His dad has MS, so maybe he'd do more than just glance at the info about it.

I'd actually rather try LDN first before I try anything else, and it's like talking to a brick wall getting either my neuro or my regular doctor to even consider LDN. At least my regular doctor is still doing research on the LDN for me and has been talking to other doctors about the LDN.

Marc,

I also had a problem with the 100% claim. Having studied statistics (briefly) I know it just isn't logical, and like you said, with such an indefinite disease like MS, it seems to me like he's trying to over-sell something. :confused:

I hope it pans out as a viable treatment, but the skeptic in me will wait for monitored clinical trials before I go under the knife.

Thank you, so much, Marc, for chiming in on this. A great post, which will keep us interested and yet ever vigilant of new treatments.

Nice to see you. :)

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Originally Posted by marcstck (Post 595232)

Excellent post Marc. It is very true that a lot more research on CCSVI has to be done in order to test Zamboni's science. But like you said, his work so far as been quite compelling.

If nothing else, it has certainly shaken up the world of MS medicine as we know it. Having a doc come by and question the previous established theory on MS by offering something very different is in itself, revolutionary!

My concern at this time is the amount of research $$$ that will available for CCSVI. We all know very well that only big pharma is capable of providing the huge amounts needed for something like this. And big pharma will not be intested in CCSVI!

Harry

Great thread, Marc. Thanks.
I brought the subject up to my neuro this morning...he stated that we all have to keep an open mind, but that over the years there have been many procedures, even "cures", that were proven wrong...
he also questioned the increased incidence of MS in women and those further from the equator...and how that would make for stenosis in the jugular veins...:confused:

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Originally Posted by Debbie D (Post 595375)

I was wondering what he would say Deb. And those are very good points too! Add that to the 100% claim by Zamboni and it just doesn't add up. :confused:

Dartmouth-Hitchcock Medical Center MS Center has taken the official position that its a very early "CLAIM" by a handful of researchers who have "CLAIMED" a 100% success, and diagnosis rate. DHMC said that the Stanford study has been shut down by the FDA until a safer, more proven theory arises. Until further more promising research DHMC is not entertaining questions, comments or debates other than to say they are not participating in any of it, until MUCH more is known. They say they mirror the current thinking of the NMSS.

I too really hope this is the magic bullet, but sometimes you dont want to be first in line for that magic bullet. The venous structure surrounding the blood brain barrier is a very fragile thing indeed, and I am not sure I would want to be the first patient to get a stent.

I want this to be the cure! I really want this to be the cure! I am gonna sit back and watch the studies and debates unfold.

I received this article in my email today about this treatment. Marc, I hope you don't mind me posting it on your thread. I just didn't see a need to start a new one about the same thing.

http://ms.about.com/b/2009/12/01/ccs...rosis.htm?nl=1

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Originally Posted by Debbie D (Post 595375)

If the vein blockage/narrowing causes an excess of Iron in the brain...Which in turn causes my MS symptoms,,, Then could the increase of MS in women be tied to women taking more iron supplements that men? Just a thought.

I personally have never taken iron supplements. My tummy just cannot handle iron.

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Originally Posted by Brian1958 (Post 597239)

I do not take a womens multi-vitamin that has extra iron nor will I take iron supplements, my bowels cannot handle iron. My multi-vitamin is the kind men or women can take so my iron intake would be no more than what it would be for a man.

for many years I have taken the senior vitamins because they have low or no iron in them. Maybe I was doing myself a favor.

I cant wait for more studies to be done. :cool:

I took iron-containing multivitamins for years without even giving them a thought :cool:

Hi Brian and Welcome,

Women monthly lose iron so they do tend to replace it in vitamins, but not in excess. Some don't take any replacement iron.

The food we eat has much iron in it. Not just meat. Anything grown in the ground has iron in it. Our cooking pot and pans, and utensils, especially the cast-iron ones our parents used.

Many pregnant women take iron in their baby-multi pill. But the baby takes that to use to build it's own body and health. Maybe the baby taking the iron is the reason why women feel so good when pregnant with no relapses of MS?

Then after the birth they still take the baby-multi and relapse as iron restores. We used to wonder why women had protection from MS attacks during pregnancy, it may not be EPF (early pregnancy factor) as once thought. It may be the baby taking the excess iron.

More women get MS than men. Maybe they lose more iron monthly, but store more to recoup the monthly loss? :confused: It's a long shot, but you never know.;)

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Originally Posted by marcstck (Post 595232)

Marc, thank you for the information you've posted here and elsewhere. I very recently stumbled upon your Wheelchair Kamikaze blog, rather it stumbled across me via a Google MS alert, and I've since subscribed. You are an extremely eloquent writer, among other obvious talents.

Although I am also extremely excited about the potential relevance of CCSVI and MS, I agree that caution and patience are in order to validate Dr. Zamboni's research and claims. It's encouraging that quite a bit of action regarding further study and validation seems to be taking place sooner rather than later. One of these is Dr. Zivadinov's Combined Transcranial and Extracranial Venous Doppler (CTEVD) Evaluation in MS and related Diseases study taking place through the University of Buffalo and Buffalo Neuroimaging Analysis Center. I believe they're seeking 1,100 MSers and 600 non-MSers as a control group for the study, which can be applied for on-line. If selected, all testing procedures are paid for by BNAC, although there is no financial compensation for travel, lodging and related expenses. I did fill out the on-line application, and would gladly pay my way, but was dismayed to read that no Doppler or MRV reports will be given to participants or to their physicians. Yet this is precisely what individual participants will desire to know. For all but local or nearby volunteers, I'm afraid once it becomes clear to traveling participants that they'll get no returns on their expenditure other than perhaps a thank you and the knowledge they've helped move this study along, there will be many who will not follow through if accepted, which could potentially greatly delay the study. I personally would not be able to justify the expense of the trip if this is to be the case. If I've understood this "no results will be given to participants or their physicians" correctly, hopefully they will reconsider this. If anyone has any further information or insights, I'd be eager to know of it. Thanks in advance.

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Originally Posted by Xopher (Post 598897)

I believe they're seeking 1,100 MSers and 600 non-MSers as a control group for the study, which can be applied for on-line. If selected, all testing procedures are paid for by BNAC, although there is no financial compensation for travel, lodging and related expenses. I did fill out the on-line application, and would gladly pay my way, but was dismayed to read that no Doppler or MRV reports will be given to participants or to their physicians. Yet this is precisely what individual participants will desire to know. For all but local or nearby volunteers, I'm afraid once it becomes clear to traveling participants that they'll get no returns on their expenditure other than perhaps a thank you and the knowledge they've helped move this study along, there will be many who will not follow through if accepted, which could potentially greatly delay the study. I personally would not be able to justify the expense of the trip if this is to be the case. If I've understood this "no results will be given to participants or their physicians" correctly, hopefully they will reconsider this. If anyone has any further information or insights, I'd be eager to know of it. Thanks in advance.

I got the same info about this data collection in Buffalo and I think it's great that doctors are collecting at this point, but I tend to agree with everything you've said about the collection of results and how they're not being given to our own doctors.
I live way far east in Canada, and I did get the email with the stuff to fill out, but declined because of the distance/work scheduling.

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Originally Posted by Xopher (Post 598897)

thanks for the kind words about my blog.

My understanding of the Buffalo study is that although you will not get a radiologist report on what your imaging results showed, you will be able to get discs of the images themselves. Therefore, you will be able to take them to a local radiologist or neuroradiologist for interpretation. This will give you a head start on getting any stenosis that is found treated, should the theory prove to have validity.

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Originally Posted by marcstck (Post 595232)

I enjoyed reading your post...Just what I needed to hear..The nuts and bolts...:) I am hopeful...

More hope going into 2010! :)

Edit: Blah link won't work!

Basically (excerpt):

December 22, 2009 — As 2009 draws to a close, the National Multiple Sclerosis Society (NMSS) has taken stock of some of the research highlights of the year that was and is looking ahead to 2010.

Among its priorities for 2010 is a call for grant proposals to investigate the potential link between chronic cerebrospinal venous insufficiency (CCSVI) and multiple sclerosis (MS). The society has issued an international call for grant applications to look at the CCSVI hypothesis in MS.

I am a true believer in the CCSVI Liberation Treatment. I will have patience, hard to do :), until they get all the bugs out of the testing and surgery. I pray it will be soon, PWMS need hope. It keeps us going, IMO

When I went to my Neuro on Tuesday, she saw the file folder I had brought with me on all the info I have accumulated on CCSVI. She knew of it and was very interested. She had other patients bring her info on the same she said.

I gave her more than she knew existed on the treatment. She plans to study it and discuss it with the many doctors at the hospital she is affiliated with. She will gather more info and knowledge she said.

She is all for the procedure, even with the stent issues in veins vs. arteries and their side effects. She said more training and testing will be done. This hypothesis/procedure has been brought up many times in the past with no follow through. Perhaps it will be taken more seriously now she said.

Blockages are not good to have for anyone. Especially total blockage of more than one of five (two internal and two external jugulars and one Azygos in the chest, with back flow). Some have small kinks, but with seepage down to the heart.

Hi Marc :):)

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Originally Posted by Lady (Post 603938)

Blockages are not good to have for anyone. Especially total blockage of more than one of five (two internal and two external jugulars and one Azygos in the chest, with back flow). Some have small kinks, but with seepage down to the heart.

Exactly! Even if I didn't have MS I'd want the plumbing fixed!

What's crazy is my entire workplace pretty much now knows the term CCSVI (I'm not even kidding.. it's common place terminology it seems in Canada now haha!). I think everyone here for the most part knows a PWMS who could potentially benefit, so it's definitely hit home for many.

What's not entirely surprising either are the folks who have MS-type symptoms here who are now going the CCSVI checkpoint route. Long-term migraine sufferers are another group who's been keenly interested in my circles. It would make sense (migraines/headache etc) if the flow in the head isn't correct, at least in my thinking and theirs as well.

Lady, that's great that your neurologist is supportive of this. You may have seen my post a few weeks bac about getting tested and the results showed 95% blockage in both my lower jugular veins. Like dmplaura I'm thinking I might want to get the pipes fixed. My DH likes the idea because it is concrete and biomechanical. He likes working on cars so the idea of fixing clogged/backed up hoses makes MS a little more concrete....I had to laugh. :D Even if it does nothing to my MS I still think it can't be healthy to have this problem and could very well cause other problems (headaches is definitely one...also cog fog because the de-oxgenated blood isn't getting out of the brain very well).

It sounds like it is getting LOTS of attention in Canada...not as much in the US. We should know a lot more soon (1-2 years) as opposed to a new drug (taking 10 years from start to finish). :)