Monday, November 30, 2009

CCSVI (the Vascular Theory of MS): Separating Fact from Fiction

Veins of the head and neck.

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 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 readers unacquainted with CCSVI, the theory basically states that narrowing in the veins that drain the central nervous system (CNS) leads 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 Liberation Procedure", and another physician at Stanford University, Dr. Michael Dake, is opening up the blocked veins of MS patients using stents. There is also a doctor in Poland, Dr. Marian Simka, 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 bullshit 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 abnormalities 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 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 with certainty about the theory.

In my mind, CCSVI 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 present 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 grow 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, and much less so in veins associated with the brain and spinal cord; 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, both the doctors at the National Institutes of Health and my primary neurologist 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 has been one near calamity associated with the surgery, as one patient required emergency open-heart surgery to retrieve a stent that had become dislodged in his jugular and migrated to his heart. (Update: as of 12/08/09, CCSVI surgical procedures at Stanford have been halted, pending the start of a clinical trial, scheduled to begin in the first quarter of 2010.)

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 will be 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 myself, but in situations like these, we cannot let hope and emotion cloud our actions and understanding of the issues. These are potentially life and death matters, and need to be approached with clarity of mind and a complete grasp of the complicated issues being presented.

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56 comments:

  1. Thank you. From the bottom of my heart, thank you.

    I'm reasonably new to MS and at this time have very few symptoms of the disease and when I let my rationality go I *know* that this is going to be the answer and I'll never, ever have to suffer like a lot of other MS patients.

    But when I look at it logically I know that this is probably one of a few answers to the baffling question that is MS, and I'm glad that I'm not the only one who's going to endure some abuse for not drinking the CCSVI Flavor Aid.

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  2. Absolutely thank you for your honest approach. I think everyone with MS needs to read the facts and separate our emotions from our desperate desire to "feel normal" again. Believe me, I want so much to feel right again. I want so much for the symptoms I experience on a daily basis to just go away but I think that more information and research is the best choice I can make right now. My heart hurts for those who are tired of waiting, I am tired too, but to add possible complications to an already tired body is just too much for me to handle right now. Thank you so much for this very important information. It is well taken.

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  3. I'm not a big drug chaser and after being on most of the CRAB interferons,novantrone,steroids and such I've decided to take a break. This looks promising. Dx in '03 with ppms my fall was sharp but seems to have leveled off for a bit. I wear my panty hose to keep my legs from blowing up too much,my leg straps are always on as they help with mobility, I miss walking but I can still pee standing up, cog fog and fatigue are the wurst..................excuse me I'm gonna take a nap I'll be right back....................AH that's better. Check me out sometime at http://www.sprucemeadowfarm.net . Thanks for the info, very leveling,insightful and helpful.
    I'm a firm believer in that God don't make junk. Thanks WK,
    Al

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  4. 10% bonus check in this week's pay, Marc.

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  5. Hi Marc,
    Agree with you we need to wait for further research to be done on these procedures.
    We need to evaluate that research.
    Love,
    Herrad

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  6. Really good article.
    Thanks for your clarity of thought. It is very easy to get emotive about these things and lose sight of reality.
    Stll it does sound promising.

    Des, Glasgow Scotland.

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  7. Marc,
    Thank you for being a voice of reason. Maybe CCSVI is the answer, maybe not. Taking the time to wait and see can be hard when you can feel the time bomb ticking away in your self, but wait is what I know I must do.
    kicker

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  8. Great post Marc, concise and spot on as usual.

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  9. Marc,

    Good post, but wanted to comment on one thing.

    A major difference between CCSVI and EBV is that so far, it appears that everyone with MS has some form of blockage (to be further verified by the work at University of Buffalo and Wayne State) while people with other neurological diseases and those who don't have MS do not have these blockages. By contrast, it is estimated that as many as 95% of ALL people have been exposed to EBV. Whether it is 100% or only 95% that have blocked veins when people without the disease do not, that tells me that there is clearly an important link between the two.

    I think another issue you raise needs further clarification.

    Even if 100% of people with MS have blocked veins, that doesn't mean that this is the only factor involved in MS, nor is it proof that clearing the blockage will make things better.

    Many have unfairly criticized Dr. Zamboni for doing angioplasty rather than stenting, but he has been very explicit about why he is taking this approach: until there is solid proof that clearing the blockages is of benefit, it is better to take the conservative approach of angioplasty than the higher risk of stenting.

    Another issue that you don't address, but which seems to be discussed widely with some confusion is what we should expect from treatment.

    If as Dr. Zamboni postulates, MS is the result of the accumulation of iron in the brain caused by poor circulation due to impaired drainage as a consequence of stenosis in critical veins draining the brain, clearing that stenosis should stop things from getting worse, but only to the extent that the iron deposits are cleared.

    That can't happen overnight. It likely takes time and as it happens, there should be obvious benefit. That seems to be the anecdotal evidence from the comments by people who have undergone the surgery.

    Whether the body can then undo some of the damage that the iron deposits have caused is an open question. It is one thing to stop the cause of the problem and something entirely different when we are talking about reversing damage that has already been done.

    Ed

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    1. tomorrow im calling univ of buffalo! im ready to see if this can help! I got a blood clot 2 days after having my 3rd daughter 2007, developed an aneurysm from my thrombolysis cath, had 4 great years running and for some stupid reason had an evlt procedure for varicous veins, even though i have only one really bad vein. ever since the 6/2011 procedure I have had drop and can no longer run and have now been diagnosed with MS and can barley walk, have falling on my face twice. anyhow going in for left popiteL venous aneurysm repair on Thursday 12/13/2012. hopefully i make it! delores geb

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  10. "need to be approached with clarity of mind and a complete grasp of the complicated issues at hand." So true!

    Great post, I could not agree more.

    I have enjoyed your videos as well.

    -Scott

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  11. What you have said is almost word for word what the neurologist said at an MS conference this past weekend. I believe that while this may give us that elusive corner piece of the puzzle, the puzzle is not complete and while it may offer a new avenue of treatment, it is not the cure. It does open a new avenue for pharmaceutical companies to develop medications that help the body to handle or remove excess iron from the brain and to create medications that will assist in blood flow. Angioplasty or stents that are created just for the veins will need to be developed. I don't think we're finished the race yet, but we can see the finish line. These are exciting times!

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  12. Thank you for this blog. My sentiments exactly. It's all sounds wonderful but we need to proceed with caution. Thanks again

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  13. Excellent post. You've put it all very well. and Ed, yes, the point about the iron is interesting. I assume with better blood flow it will eventually "wash out" but who's to say? Other heavy metals tend to hang about in fatty tissues, like the brain. My thought is that the iron may stimulate the immune response as the body tries to clear it, thus leading to the inflammation that we've been treating for so long.

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  14. Dabble and the Mad Sow said...
    I assume with better blood flow it will eventually "wash out" but who's to say? Other heavy metals tend to hang about in fatty tissues, like the brain. My thought is that the iron may stimulate the immune response as the body tries to clear it, thus leading to the inflammation that we've been treating for so long.

    As I understand it, free iron, as opposed to iron tied up with other atoms and molecules, is the problem. It attracts oxygen and that interaction is damaging to nearby tissue and likely triggers an immune system inflammatory response.

    Iron is also crucial in the development of myelin so that may another factor in all of this.

    This begs the question of whether chelating some of this excess iron is possible. There is a limited study that showed some promise for people with an iron-related disease, Friedereich's Ataxia. It showed that deferiprone was able to chelate some iron in the brain in a small study group with resulting improvements in neurological signs.

    Has it ever struck anyone as strange that we treat an inflammatory condition with a pro-inflammatory cytokine, interferon?

    I think one other point about this that is important is that it shouldn't matter whether you have RRMS, SPMS, or PPMS unlike the case with the other approaches.

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  15. I’ve been living with MS for well over a decade & hope not to die with it. As exciting as this possible treatment seems to be, your cautious outlook is valid. Let's all balance our optimism with some realism but not to the point of pessimism.

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  16. I find this other look very interesting and has certainly given me food for thought. I have actually made an appt today with my doc to get a referral to have the doppler of my drainage veins, just to see if they are indeed bocked. This is as far as I was going to go for now as Australia always seems to be the last to start these new procedures. I think thats where I will leave it for now for the next year or two and see what further developements happen.

    Jo

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  17. Good post, particularly with regard to risks and clarity of mind. Thank you.

    I disagree with your assertion that CCSVI doesn't explain the geographical distribution of MS incidence. I believe it does: vitamin D deficiency during early development could very well be involved in the malformation and/or narrowing of blood vessels. And, as Edward Murray says, the EBV thing is neither here nor there (in my opinion).

    The sex ratio thing, though... Hmmn. Hadn't thought about that. I'll have to ponder further. Thanks again.

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  18. Thanks for all of the insightful comments, folks. I'm glad my post has provoked some interesting thought and conversation. Your taking the time to comment is very much appreciated.

    As for the EBV connection, it's relevant because research has shown that people not carrying EBV do not get MS. The relationship between EBV and stenosis may be exist, but has yet to be established. I believe it is under investigation.

    The connection between vitamin D and geographic distribution is also an interesting concept, but this too has yet to be firmly established. It's important not to embrace theory as fact, but perhaps more important to follow up the possibilities such inquiries present.

    We must be cautious about forcing the puzzle pieces to fit. Hopefully, they will, and a major part of the conundrum that is MS will suddenly snap into focus. However, it is premature to assume that all the stars will align.

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  19. Hi folks,

    1. RE: "Liberation Procedure"

    This term is being used and quoted rather disparagingly on some other blogs and websites (not here) by certain apparently Anglo Saxon centric and somewhat arrogant commentators or MS industry stakeholders. Thereby an attempt is being made to diminish their achievements to the loony fringe of MS research.

    On the contrary, the Italian researchers involved with the initial studies at Uni. of Ferrera are extremely well spoken, sophisticated and precise with terminology as indicated by their published peer review literature.

    However their obvious struggle in spoken and written English translations as shown by the difficult to understand spoken English language presentation on the Hilarescere Foundation website or indeed the choice of literal terminology belie solid medical and academic qualifications.

    The above term may be appropriate in colloquial Italian but let's not get hung up on it - look rather at it as an attempt to concisely describe Zamboni's surgical approach to clear venous obstruction.

    2. RE: CCSVI Theory Validity

    Remember, there is no dispute as to the theory of MS being an AutoImmune related disease...the etiology, cause or origin however is still "unknown"..drug treatments treat only CNS inflammation (eg steroids/ABC's) or block lymphocytes (eg Tysabri).

    However, currently there is NO consensus explanation of what TRIGGERS the Auto Immune reaction against CNS except that "somehow" the Blood Brain Barrier is being breached at the ends of small veins (seen as pattern of plaques in MRI) followed by lymphocytes entering the CNS and attacking the nearest nerve cells (forming plaques/scar tissue).

    The CCSVI theory simply suggests a mechanism through which the BBB is breached i.e. via mechanical shearing of capillary walls due continuous backwards flowing blood. In most instances the body quickly repairs damage (breaks in wall clot up and killed nerve cells result in scar tissue) and it takes a long time for sufficient damage to accumulate in brain regions and expressed as functional deficit.

    In CCSVI it is postulated that the variability of MS is due to positioning of the refluxing blood flow pattern i.e. it differs depending on which vein is affected, how it is compromised and where it is located.

    It would follow that research would be directed towards the identifying cause(s) of the venous obstructions or malformations in the first place. The nature of these are postulated as being genetic and/or developmental including environmental factors such as reduced Vit.D/sun exposure etc.

    Future MS treatments (rather than cures) will depend on autoimmunity status, neurological deficits AND surgical repairs to any identified venous flow conditions.

    The CCSVI diagnosis tools, methods and surgical treatment are evolving in real time as per the private or insurance covered work being performed by Drs in NY and Stanford California on pwms who have been identified with stenosed, pinched or deformed Inner Jugular and/or Azygous Veins.

    Of course as well as the pioneering work (diagnosis & intervention) of these medical teams and patients there is an active recruitment for longitudinal studies which will form the basis for published research findings. The lab which invented the interferon drugs for MS at Jacobs Institute NY will be publishing in December 2009 some preliminary findings follows thereafter by Buffalo Uni.

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  20. This autoimmunity stuuf about MS is rubbish. Whenever "modern" medicine doesn't know a cause, they'll categorize it as an "autoimmune disease", and the public slurps it up. Like you or your readers seem to say - that it's "common knowledge". It's much more likely because people are EATING processed "food" in this "modern" era. Most probably THAT is the root cause for most of those "autoimmune" misdiagnosed cases. But don't expect a doctor in the U.S. to figure that out - he never took a course in nutrition - not once in his entire medical schooling - not once! He knows nothing about prevention. He's only the bandaid person whom you come to when the system already broken. Why does it break? Why ask the doctor? How would he know - does he know what you're supposed to be eating, does he know what you ate, what you took into your body, and how to get rid of that toxicity or built-up toxicity? He'll just talk about the esoterics of some far-fetched science, to make it look like he's worth the money you are spending on hom and his promoters.

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    1. yes, I agree! my now MS started 1/07 after I delivered our 3rd daughter, she was 2days old. I felt a clot move in my leg I asked my husband to bring me to the ER. they sent me home, silly woman u just have phelbitis. 2dAys later I awoke with positive homan! I recovered form dvt( extended throughout left leg to IVC) I ran for 4 yrs. but than in 6/2011 i had evlt to help reflux in left leg i have had drop foot ever since and now i have MS. left popiteal aneurysm repair 12/13/2012. of course, im worried i was an or nurse for 14 yrs i know what stretched out vein looks like! delores geb

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  21. Thanks to Marc for this post. This and the comments are food for thought that will benefit repreated readings. Its a pleasure to hear from fellow MS suffers who are thinking for themselves and 'out of the box' as opposed to the medical profession which here in the UK is determinedly closed in its thinking and doesn't seem to value the benefit of such 'conversation'. Maybe there is a UK equivalent of Marc's blog? If so, please link me. Once again, Marc, THANKS.

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  22. James, I too have noted the tone and lack of precision with explanations of CCSVI in their FAQ at http://www.mssociety.org.uk/research/az_of_ms_research/cd/ccsvi.html

    ...as well the phrasing and almost ridicule attempt in their other article on the original Zamboni publication at
    http://www.mssociety.org.uk/news_events/news/research/ccsvi.html

    Just who is writing these subtly prejudiced articles on UK site?

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  23. Thank you, Thank you!

    I have had it up to my neck with the "treatments" offered to me in the US. I no longer take a shot a day to reduce my chances of increased disability. Many with MS think I'm crazy, but I feel very clear-headed about my decision.
    I'm trying through exercise, stress reduction, and common sense to slow or halt an increase in disability. Physical therapy has been the most helpful thing the doctors have given me.
    I don't mean to be negative towards the doctors. I am grateful to them for their research and passion, but I'm determined to take responsibility for my health and to choose my own path.
    I'm so excited to find doctors who are thinking outside of the box!
    Again, Thank you!!

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  24. Hi Marc,
    Please come by my blog and pick up your award.
    Love,
    Herrad

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  25. just an fyi

    i live in the Buffalo area and had a neuro appt today and i've had better, thanks for askng :-)

    but anyway the results so far are the 75% of MS patients have atleast some narrowing of the viens in their necks. (inculding me)

    also my neuro said that as soon as soon as the data from CCSVI is analysized and it is approved for treatment, i would be one of the first people to get it in Buffalo area. (which makes me feel really odd. i didnt think i was that bad, but i am running out of MS drugs to take.)

    from pfrox9

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    1. hi, i live in syracuse and plan on calling univ of buffalo in the am

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  26. Just some more thoughts on CCSVI.
    I was also excited by this story when it first appeared but after thinking about it I'm not so sure. Mostly, the 100% correlation between narrowed veins and MS in the sample.
    As previously stated MS is difficult to diagnose, so how can you be sure that that ‘MS’ patients have MS?
    Is the correct question even being asked? Example : we took 100 patients with blue eyes and found they all had eyes!
    Most obviously; is the MS causing the narrowed veins instead of the other way round?
    Can you find anyone with narrowed veins who hasn’t got MS?
    If the 100% correlation were true then instead of doing MRI scans and sticking a giant needle in your back to get some CSF and asking about your first acute attack of MS (– how are you going to know if you’ve not had anything like it before?) all that would be necessary to diagnose MS would be a Doppler ultrasound scan of the veins in the neck.

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  27. To James U
    Yes i think you are on the right track
    cuase and effect has to be considered
    but if this guy is onto something think what it means in conjuctiion with the human genome project, screening for the gene which causes the problem then screening at an early age for norrowing of the veins then treatment.
    i have spms so it's pobably not going to do much for me but i have three children and if it can remove the risk for them in in the future then as far as i'm concerned it's a major breakthrough.
    Des Glasgow Scotland.

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  28. Hi Marc,
    I agree with Des
    Love,
    Herrad

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  29. Hi Marc, your insights are really worth reading.
    I have only discovered your site as a result of the CCSVI explosion but it has helped me enormously.
    I apoligise fro the spelling in the above post. It was writen on a friday night with too much red wine inside of me.But at least I can spell sceptical.
    Des, Glasgow. Scotland.

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  30. This site is very informative. Regarding CCSVI and MS, the discovery is promising but vurnetable to be undermined by the neurologists following the traditional line and the associated drug companies.
    Thank you

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  31. Marc, Ed, everyone

    I think this post represents an unbiased summary of the CCSVI finding.

    Great work! I am part of a rapidly growing group on facebook called CCSVI in ms and there has been tremendous news and updates around this but I believe this post represents an accurate representation of the most prominent arguments.

    All the best

    Josef

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  32. My theory is that there are two distinct processes. One that creates true MS symptoms (based on neurologist findings) and the other that due to physiological abnomalities, causes similar symptoms to MS but is not true MS. An MS-Doppleganger (MS-D). I think the people who are showing progress with the Zamboni procedure might have MS-D. The people who have had the Zamboni procedure and have not improved might have the "true" MS and be treatable by medications....OR...they might have disease that has progressed too far to produce irrevocable damage to the nervous system that no treatment can cure.

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  33. Hi Marc,
    Thanks for an excellent summation of CCSVI. I am an RN and was quite impressed by your writing and knowledge. I have a very close friend with MS and I am constantly pushing him to change neurologists and to even try stem cells.
    Does anyone know in the NY area who is specializing in the doppler imaging of the veins and arteries. While it is a basic procedure that can be done anywhere I would rather my friend with MS go to someone who has a positive outlook on the procedure. Unfortunately my friend neuro in NY has a lame attitude which may come from being a paid consultant to a major drug company that produces MS drugs.
    michele RN

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  34. Oh man, will someone help me light a fire under the arse of mother research. It's high time we do get pushy. Trust me, you dont want them taking forever in clinical trials just so big pharma can shuffle their money around and people can get paid.
    Dont tell me your protecting me while I progress.....give me the stent you have now thank you. Not into tooling around in my chair if I dont have to. Id gladly die trying to save myself.

    Raise hell, light a fire and maybe the end result might help you sooner rather than later.
    For decades groups that supposedly represented you overlooked something as basic as the vascular system...

    Like I said, GIVE ME A BREAK..PATIENCE MY ARSE!

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  35. ok, anyone have the vascular imaging/ballon procedure/stenting done in the metro NY area? This is crazy that we can't find a facility where they really want to get involved.
    Research what?? are they damn blind?
    michele RN

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  36. Has anyone heard anything new? It realy bothers me that I realy dont know if CCSVI is just wishful thinking or a whole lot more.

    Just a thought I need to share;

    'ThisIsMS' was a suggested as an unbiased place to read interesting threads.
    OK True, but why is it that their 'Home Page' contains nothing on a subject like CCSVI but lots on subjects like LDN and copaxone, even MS voodoo remedies such as Goat Serum. I would suspect there are sponsorships behind this web site that are not completely forthcoming. Lots of news on drugs, very little on CCSVI.
    Oh sure, you can join a thread but they're not offering any information, you need to find that yourself, pathetic and their selfish interest is shamefuly transparent.

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  37. I beg to differ with Anonymous, above. I just joined www.thisisms.com today because of the discussion threads on CCSVI. Realize, Anonymous, that the threads are recent and are down toward the bottom of lists. Please give it a second look.

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  38. I find the correlation between EBV and CCSVI interesting. I have a blood clotting disorder and I have had a deep vein thrombosis in my left popiteal vein 7 years ago. I was just diagnosed with MS on November 30, 2009 after being numb from the chest down for months which happened mid Sept. Is there any other material on these two being linked and how do you know if you have EBV?

    Des in PA

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  39. I'm kinda late coming in, but this blog was just referred to me. I enjoyed it, and the comments very much. It's not just hypothetical to think that pharmaceauticals will try to downplay this. Have you noticed that nothing is airing on TV at all? We are gonna need to be a loud voice on this subject if we want to be heard.

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  40. My name is Rick, I was diagnosed with MS back in 2001 and it was thought to be mild and non progressive to the point of being wheel-chair bound. Wishful thinking, I was later, around 2004, reclassified as Primary Progressive MS. I'm still able to get around via a walker albeit dragging my all too dead left leg/foot. I recently brought this discovery to my family doctor's attention and he was only to willing to set up an appointment to have an ultrasound of my neck arteries. The results were negative so my hopes were somewhat dashed. I'm thinking that this was a good finding but I don't believe it was conclusive. There are more veins and arteries from the brain to the spine etc.that may be compromised but as my Dr. had alluded to, a cardiologist may have to be summoned next. Basically it is what it is and until we are closer to cause and cure with the ongoing research be brave and address one day at a time.

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  41. Ruth Simonyi-GindeleJanuary 20, 2010 at 5:05 PM

    Hi Marc, Read your summary with great interest. Excellent work. Lovely photos. I had the diagnosis and the treatment in Poland on Dec 29th of 2009. I had stenosis of the left jugular vein. It was opened by balloon, no stent. I am much improved. Especially significant relief from the severe fatigue which had previously made my life just about intolerable. The results started immediately following the operation and I have been steadily improving. While I was not fully aware of all the risks, you so well describe, I still would have gone ahead as my situation was getting worse. The doctors were extra cautious as I am older and had MS for over 30 years, but still mobile and driving. My husband tells me that I am becoming my "old self" before MS progressed. I sincerely hope that some large scale clinical trials will be started. I have an appointment with MS physician tomorrow. All the best to you and yours. Ruth SG

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  42. Hi Marc.
    YOU ARE AMAZING! just finished watching your wheelchair adventures thru Central Park, my old stomping ground. I cannot tell you what joy it has brought to me. I have had MS for over 20 years & although I can walk into a friend's house or a restaurant w/ my walker, I am wheelchair bound at home & have a scooter for outside activities. I am also an RN who worked for 8+1/2 yrs w/ my MS, but it got too dangerous for me to continue as I worked in the OR. I went to a cane, then a walker & now my w/c. I had an experimental Bone Marrow Transplant back in 2002 which halted progression according to my MRI, but I am very slowly getting worse. It has slowed it down considerably. I deal w/ the fatigue, the spasms, the pain & do what I can & am looking forward to the release of Amaya to maybe help improve the little bit of assisted walking I can manage now. This new aspect of CCSVI
    is intriguing me, altho I am not 100% sold on it. I loved your article, you are very precise at what you write, just as you are on your w/c videos. But---U throw in much needed humor as you roll along. Especially loved the AUDREY HEPBURN one. I will research the CCSVI & follow it to see if there is really any merit in doing it, as there is not enough progress yet. I cannot tell you how I have enjoyed this website, all the pix & videos. Your lighthearted way of talking & describing the "curb cut" as you call it, amused me beyond anything I have seen in a while. This infuriates me also, things that are not accessible. I was born & raised in Manhattan, but have lived in Central NJ for 38+ yrs & I go thru the same problems here when I go somewhere. We call them "sidewalk divits" but I like yours better. I would like to keep in touch but when u click on your "email me" postcard, it won't let me email you thru my aol mail account. Could you post your email address so I can write to you privately? It is so hard to find someone who understands exactly what the vision of living your life in a w/c, "BELOW" everyone. I SO ENJOYED ALL THE VIEWS, THE TATTOO, THE BELLIES, THE FALLING DOWN PANTS!! Your comments are priceless, very laughable & imaginative & I enjoyed them all. I will continue to follow you & hope to remain in touch. Maybe someday my husband & I will meet you & your wife, it would be an honor! Thank you again for a wonderful 2 hours I just spent here. Sincerely, Ree K*

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  43. If excess iron is being deposited due to venous abnormlities, one wouold expect that epidemiologists would have already noted a correlation between MS and blood iron levels. Anemics, for example, would be less likely to have severe symptoms, etc.

    That all those studied that had MS also had venous abnormalities seems persuasive, but "abnormality" seems rather subjective. It does seem unlikely that MS could cause such narrowing, though. Perhaps "MS" covers several different disorders, one of which can be improved by opening the vein.

    The testimony of Ruth SG is heartening, but we would want to now how she is doing, say, six months or a year after the operation, when any placebo effect --- if present --- would be less intense.

    We would also like to know whether this will cure damage already incurred or prevent future damage or both.

    Nice to have an alternative to immune-system-suppression, if this does work.

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  44. I have an MS diagnosis for 5 years now. I did an ultrasound last month and they found that I have a stenosis in one of the jagular veins. Does anybody know of a place to do the operation? I leave in Ontario

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  46. Importantly, this is not an issue for a neurologist to advise you on. This is a matter for the most capable Cardiologist you can find in your area. Veins are generally worked on less than arteries, but work on both types of blood vessel is ongoing. In any area there will be people who specialize in vein work, who will have a very clear idea what to do, and not do. A couple of opinions would be good, but importantly, this part of the puzzle is not something a neurologist can advise you on and a good neurologist would be the first to tell you so. It is outside their area of training.

    This seems to me to be a puzzle of many parts: veins develop poorly (in northern climes, perhaps due to Vitamin D insufficiency) and over time iron builds up in the brain, causing damage that the body struggles to repair. If any part of that chain can be broken, or reversed, there is a chance the entire disease process can be halted and that the body, or stem cell therapy, or some other process can repair at least some of the existing damage. I think most people with MS would be thrilled with even as little as a 30% recovery.

    I think going into the matter with the understanding that it is a neurological problem, a problem of toxicity and a circulatory problem, all linked together, makes it easier than seeing it purely as something to discuss with a neurologist. All I can say is that so far a fairly low-key approach has worked well for us. We have what I would describe as a cordial partnership with a group of physicians, who would purely love it if a surgical solution could be found for MS. And so would we all.

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  47. Hang in there you guys. We all wish you luck.

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  48. See confirmation of Zamboni's results from University of Buffalo's first blind study on CCSVI started in April 2009.

    http://www.buffalo.edu/news/fast-execute.cgi/article-page.html?article=109370009

    Surprised this has not got a lot more publicity.

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  49. Marc, The non invasive testing could be an important diagnosis tool for the kids of MSers.

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  50. MS being a vascular issue makes a lot more sense than it being a so called, "auto-immune disorder." When you look at MS and some other diseases, they seem to be associated with acidic blood or tissues. If this is so, then that would make sense that a person with MS would have increased symptoms if they eat something that causes the blood to become more acidic, for example carbonated drinks. These drinks are filled with CO2. CO2 causes the blood to be acidic. If the blood or tissue is acidic, it can cause a slow break down of the veins. Specifically, the veins are composed of collagen and elastin. Both are broken down in acidic conditions. Yes, I know that if you test most people their blood doesn't present as acidic, but one has to understand that many people are very sensitive to even the slightest changes in their bodies, even changes so small that they can't even be detected. I suspect that MS, as well as many other so called auto-immune disorders, are caused by a venule break down. Meaning, for some reason, the bodies veins start to pull back or break down. When this starts to happen they become sensitive to even small changes like carbonated drinks or anything that is acidic. Think about this for a second, if this is true then, areas that are most vascular will have some kind of issue. Now unfortunately, in many people with MS, it might only be a vascular issue in the areas that only affect the CNS. But what happens when this issue spreads to glandular areas like the thyroid, or other glandular areas? These areas are very vascular. That means that if you are having a vascular issue, there is a possibility that you may face a whole new set of symptoms if glandular areas are affected causing hormonal depletion. Unfortunately, past research was not being focused in areas other than immune suppression. In the past I believe researchers were looking too deep into this issue instead of looking at the surface. Basically, I equate most of the past research in MS with a car, in that researchers were trying to learn why the car wouldn’t go by researching the molecular make up of the rubber in the tires instead of just checking to see if the oil was properly circulating around the engine. The later being simpler, but unfortunately, many researches tend to be over achiever, basically honors students when they were in school. I use to have a colleague that taught honors science, and he always stated, "you want to make a mountain out of a mole hill, ask an honors student." Enough with this way of thinking. Let's start checking the oil flow in the car instead of getting so complicated with the makeup of the rubber in the tires.

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  51. My daughter has PPMS for the past 12 years and is bed-ridden and basically unable to tend herself. The CCSVI procedure obviously grabbed my attention. She had been taking various medications over the years and has not had any positive effect from any of them except from the occasional placebo effect when she started a new treatment. While I don't know all their names, betaferon and various steroids come to mind.
    With the high failure rate of these meds, I tried to find out about all the double-blind testing and approvals they should have had. Came up dry! Various responses such as "Its none of your business." "Its not publicly available." "You wouldn't understand it." [after a career that included testing and statistical evaluation of results].
    I've come to the conclusion that while these meds were supposedly "approved", it was likely on the basis of "they might help if we're lucky."
    Does anyone have access to the testing of these toxic and debilitating chemicals? How can they be approved if they fail to help the patients?

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  52. Doppler of my Jugular (neck) revealed 8mm left, 4mm right.
    Does anyone know size of concern? Im a 40yr old male.

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