Thursday, October 28, 2010

A Roundup of CCSVI Info: Thoughts and Observations

The veins of the neck, viewed from the front.

Image via Wikipedia

But first, a little shameless self-promotion: I was recently interviewed for a radio piece on CCSVI that will be airing on National Public Radio this coming Monday, November 1, between 6 AM and 9 AM, during their Morning Edition program (click here to find the NPR station in your area). I have no idea how much of my interview they'll use, and wouldn't at all be surprised if only a few seconds of my voice is heard. Still, it was very flattering to be asked to participate, and it's also very encouraging that NPR is doing a segment on CCSVI, which has been largely ignored by the US media. For everyone who misses the live broadcast, the segment will be archived on the NPR website, and I'll post a link as soon as it's available.

And now, on with the show. I haven't written about CCSVI in quite some time, so the below post is very long, almost twice as long as any other piece I've ever posted. You might want to grab a cup of coffee and a couple of toothpicks to hold your eyelids open before attempting to plow your way through it…

The topic of the vascular theory of MS, which was initially hypothesized by Italian vascular surgeon Dr. Paolo Zamboni, and has come to be called CCSVI (Chronic Cerebrospinal Venous Insufficiency), continues to inflame the MS community among both patients and physicians alike (if you're unfamiliar with CCSVI, please click here). At times the debate over the validity of the CCSVI theory and the efficacy of the procedure used to address it (known as "The Liberation Procedure") has reached the level of hysteria on MS Internet forums, countless CCSVI Facebook sites, and in the print media, with outrageously hyperbolic statements pouring forth from both sides. The most fervent CCSVI advocates claim with absolute certainty that CCSVI is the cause of MS, and that the Liberation Procedure is a cure for the disease, while the theory's staunchest critics label it a hoax, and those physicians practicing the Liberation Procedure con artists selling desperate patients snake oil.

At this stage of the game, when very few scientifically valid trials have been conducted, both extreme viewpoints have absolutely no basis in fact, and these vehement arguments only confuse the issue all the more, creating adversarial tensions precisely when a spirit of open-mindedness and cooperation are desperately needed. Furthermore, these loudly voiced conflicting opinions can only work to the detriment of chronically ill patients vainly searching for answers that simply do not yet exist, adding clutter and confusion to an already complicated issue.

We are in an age of discovery in regards to CCSVI, and over the last several months much has been learned about the condition and the treatment protocols used to address it, though the picture remains far from clear. Many patients, understandably clamoring for easy access to the Liberation Procedure, argue that the procedure is nothing more than angioplasty, which is performed quite commonly on cardiac patients in hospitals around the world, and that they should be given access to the treatment for the simple reason that blocked veins need to be unblocked, regardless of whether or not a patient has MS. Both of these arguments seem quite valid at first glance, but don't really hold up to greater scrutiny.

Angioplasty is indeed a common procedure, and a very safe one at that. The Liberation Procedure, though, is not angioplasty, which is performed on arteries, but venoplasty, performed on veins, a procedure that is done much less commonly. This may seem like a minor discrepancy, but in fact presents some significant challenges to both the doctors performing the procedure and the technologies used during it.

In terms of anatomy, veins and arteries are very different creatures. The major arteries are quite rigid, designed to withstand the intense pressure of blood being pumped through them by the beating heart. Thus, when they are ballooned or stented open during angioplasty, they tend to stay open, given their natural rigidity. Veins, on the other hand, are thin-walled and flexible (just play with the ones on the back of your hand to see what I mean), presenting a very different target for the balloons or stents used during the Liberation Procedure. Virtually all of the equipment used during the Liberation Procedure was originally designed for utilization in arteries, and this has led to less than ideal efficacy when used in veins, as I will discuss in more detail a bit later. From a safety standpoint, as long as the procedure is confined to the use of balloons to open narrowed or blocked veins, the Liberation Procedure is quite safe.

As for the assertion that blocked veins need to be unblocked regardless of the overall health of the patient, this too is not as clear-cut as it first may seem. Since arteries are the primary culprits in cardiac disease and strokes, human venous anatomy has been very little studied by modern medicine. Incredible, but true. I've been told by several radiologists and vascular specialists (including those at the National Institutes of Health) that there truly is no definition of "normal" that can be used as a benchmark when assessing an individual patient’s venous system.

Indeed, initial studies have shown that up to 25% of healthy people appear to have the vascular blockages known as CCSVI, to no apparent ill effect (click here for info). Venous anatomy is redundant and adaptable, and it had been thought that blockages in veins are largely compensated for by this adaptability. Blood flow blocked in one vessel was assumed to be simply routed through another, or through new vessels grown by the body to make up for the blockage, called collaterals. Perhaps one fringe benefit of the investigation into CCSVI will be closer attention paid to venous anatomy on the whole.

It's important to keep in mind that Dr. Zamboni's theory involves not only blockages in veins, but more precisely, the reflux of deoxygenated blood back into the central nervous system caused by those blockages. Therefore, not all venous blockages meet the requirements of CCSVI.

My own case is a perfect example. A catheter venogram revealed that I have a significant blockage in my right internal jugular vein. Further testing indicated that this blockage is quite unusual, as it is not caused by an abnormality internal in the vein, as is the usual case, but rather by an external muscle pinching the vein significantly closed. The Interventional Radiologist who did my procedure reviewed my case with Dr. Zamboni, who is of the opinion that although my vein is clearly blocked, this blockage has not resulted in a turbulent backflow of blood, and therefore should not be treated. Not really what I wanted to hear, but facts is facts. I do plan on getting further testing to confirm Dr. Zamboni's opinion.

Earlier this month, one of the major international MS conferences took place in Sweden. Known as ECTRIMS (European Committee on Treatment and Research in Multiple Sclerosis), this year's conference featured many presentations on CCSVI, which in itself is something of a victory. During last year's conference nary a word about CCSVI was mentioned.

Much of the evidence presented at ECTRIMS was mixed, on the whole seemingly confirming a correlation between Multiple Sclerosis and the vascular abnormalities known as CCSVI, but also casting some doubt as to whether or not CCSVI is a cause, rather than an effect, of Multiple Sclerosis. Dr. Robert Zivadinov, who leads the team of researchers vigorously investigating CCSVI at the University of Buffalo, presented several very interesting papers. One paper demonstrated that the severity of CCSVI increases with the severity of Multiple Sclerosis symptoms experienced by patients, and with a more advanced disease course (click here for abstract). These findings were backed up by papers presented by researchers from Beirut (click here for abstract) and Italy (click here for abstract). If CCSVI were the cause of MS, the researchers would expect that a constant level of vascular abnormalities would be seen across the entire spectrum of disability levels and duration of disease among patients studied, which is not what their studies demonstrated. Other research presented at the conference contradicted these findings, such as a paper presented by Dr. Marian Simka, an Interventional Radiologist in Poland who has done hundreds of Liberation Procedures, which found that CCSVI plays a role in the cause and progression of MS, and that the vascular abnormalities were most likely congenital (click here for abstract).

Another study presented by Dr. Zivadinov found that subjects who presented with CCSVI had significantly more lesions and brain atrophy as measured by MRI than those MS patients without vascular abnormalities (click here for abstract). Yet another investigation presented by Dr. Zivadinov looked at the correlation between a gene implicated with MS, and CCSVI, and found that the data supported an association between MS disease progression and CCSVI separate from the suspect gene. The implications of these findings are that CCSVI could be a risk factor in developing the disease, or a result of the progression of MS (click here for abstract).

Clearly, the data presented at ECTRIMS was a mixed bag, which some CCSVI advocates found disappointing in that much of the evidence offered did not point to CCSVI being a direct cause of MS. Still, the studies did reveal a very strong correlation between vascular abnormalities and Multiple Sclerosis, which in itself is a giant step forward in convincing a dubious scientific community that these abnormalities do play a significant role in the puzzle that is MS. Much more research is needed to resolve the challenging questions posed by CCSVI, and such research is ongoing at the present time in multiple locations worldwide.

Some staunch CCSVI advocates have tried to dismiss research with findings not to their liking by claiming that the methodology used was faulty, or that the researchers themselves were tainted by their associations with pharmaceutical companies. As for the methodology used, it may be different than that originally used by Dr. Zamboni, and thus might in fact be invalid, but it does occur to me that the physical abnormalities found in CCSVI are not subtle in nature. We are talking about rather severe blockages in blood vessels, significant enough to cause blood to actually flow backwards through those vessels. It would seem that abnormalities of this magnitude should be detectable by more than one set of extremely specific methods of measurement. But, as I stated previously, venous anatomy has been little studied in the past, so perhaps the technological choices are indeed limited.

As for researchers whose integrity has been compromised by their ties to pharmaceutical companies, if all such physicians were prohibited from taking part in research studies, there would be practically no medical research conducted at all. A tragic truth about our current medical system is that almost every physician practicing in the United States has some affiliation with a pharmaceutical or medical device company. This phenomenon is not limited to neurologists, as some would make it seem, but is epidemic throughout the medical community. A wide range of doctors have affiliations with drug companies; orthopedic surgeons have relationships with the makers of artificial joints (click here for a fascinating New York Times article on this), cardiac surgeons are courted by the makers of replacement heart valves, and Interventional Radiologists have associations with the makers of the stents, catheters, and balloons with which they ply their trade. I've said it before, and I'll say it again, capitalism is a wonderful engine for driving an economy, but is absolutely corrosive when applied to the practice of medicine. When patients are viewed first as consumers of medical products and services, something is seriously wrong. I previously expounded on this disturbing topic in a previous post, "The Medical Industrial Complex: Sick People Required", which you can access by clicking here.

One of the big problems involved in the study of CCSVI in that none of the noninvasive imaging techniques used to try to detect venous abnormalities in patients before having them undergo an invasive catheter venogram are all that reliable. MRV imaging in particular has proven to be almost worthless, as yet another study conducted by Dr. Zivadinov and presented at ECTRIMS demonstrated (click here for abstract). Doppler Sonography, while more accurate, is only useful in detecting CCSVI when used according to very specific protocols, and conducted by a highly skilled operator. Even when such conditions are met, Sonography is somewhat subjective, as the Zamboni trained sonographer who did my Doppler scan has said. Sonograms can be interpreted differently by different physicians, and time after time both MRV and sonogram imaging done on patients have proven to be unreliable once a catheter venogram is performed. The blockages suggested by the noninvasive techniques simply don't correspond to what is actually found in patients when the catheter is inserted into their veins.

While the academic questions regarding CCSVI are all very interesting and fodder for great controversy, the biggest question for those of us suffering from Multiple Sclerosis is whether or not the Liberation Procedure can relieve our symptoms. If it turns out that the procedure is a cure, well, then MSers have hit the jackpot. If liberation "only" results in a dramatic drop-off in the misery caused by the disease, it's still a huge win, and will forever change the way MS is researched and treated. More importantly, hundreds of thousands of MS patients around the world will have a new and relatively straightforward conduit to relief.

Since no formal treatment studies have been conducted thus far (several are currently underway), we can only rely on the anecdotal accounts of patients who have undergone the Liberation Procedure when assessing its effectiveness. It's been estimated that over 2000 procedures have been performed in various locations around the world, but we've only heard from, at most, perhaps 100-150 of these patients. When assessing these accounts, which are usually quite encouraging, it's important to keep in mind that the preponderance of mostly positive reports related on Internet forums and YouTube videos are a product of the natural phenomenon of people who have positive outcomes to be much more inclined to make their results public than those with negative experiences. This isn't an attempt at subterfuge on anybody's part, but merely human nature. Reports from several clinicians doing the Liberation Procedure indicate that the success rate is less robust than might be inferred from Internet accounts. Still, some important trends can be identified in the anecdotal reports available.

It does appear that the Liberation Procedure does positively impact MS symptoms for a significant portion of the patients on whom it is performed. These positive results range from dramatic to slight, but another significant portion of patients, albeit a minority, report receiving no benefit from the procedure at all, some even telling of a worsening of their condition post procedure. We are also seeing the very troubling trend of restenosis (veins closing back up) several weeks or months after balloon venoplasty, and also an increasing amount of accounts of problems with stents implanted in patients' jugular veins, primarily in the form of stent thrombosis (clotting), and stented veins stenosing in areas above or below the location of stent implantation.

Although the accounts of restenosis are discouraging for the patients who experience it, their stories speak loudly to the validity of the CCSVI hypothesis and the effectiveness of the Liberation Procedure. Patients tell of experiencing marked improvements after having had the procedure, but then a dramatic worsening when their veins once again collapse. Upon a second attempt at liberation, most of these patients once again experience benefit. Unfortunately, many of these patients restenose yet again, accompanied by the return of their MS symptoms. This is a strong indication that resolving vascular blockages at the very least results in symptom improvement for a significant number of MS patients. However, with the incidence of restenosis far too common, strategies must be developed to address this vexing problem. Obviously, patients can't be expected to undergo repeated invasive procedures (which include a not insignificant dose of radiation) to address a continuing pattern of restenosis.

Stents have been used to treat veins that were resistant to ballooning or were otherwise problematic. The use of stents in the jugular veins has been somewhat controversial from the outset, as all of the available stents were designed for use in arteries, which generally carry a much more robust blood flow than veins, and which narrow in the direction of blood flow. This means that the risk of clotting in arterial stents is much less than in veins, and that any stent getting loose in an artery would only get pushed further into that artery, rather than have a clear path to the heart, which is the case for stents implanted in the jugulars.

As accounts of problems with stents increase, several doctors and clinics that perform the Liberation Procedure have shied away from using them. Since, once implanted, stents generally cannot be removed, the long-term failure rates of stents are also of considerable concern. The only other patient population that regularly receives venous stents are late stage renal patients, whose veins collapse as a result of kidney dialysis. Studies of the patency rates of stents placed in these patients are less than encouraging, finding failure rates as high as 50% after one year (click here for info). While the two patient populations in question are extremely different, the risk of stent failure in the long term is a legitimate concern, especially since the currently available stents were designed for use primarily in thoracic arteries, where they're not subject to the constant bending, twisting, and torque they experienced when placed in the very flexible human neck. Whether or not to allow the use of stents is among the many very difficult decisions patients considering liberation must make. I personally decided that I would not allow their use.

Obviously, large-scale treatment studies are desperately needed to determine not only the efficacy of the Liberation Procedure, but also the best methods and practices for performing it. Currently, the techniques used vary widely from doctor to doctor, with no real consensus among the treating physicians regarding the size of balloons to use during venoplasty, the use and placement of stents, or even what constitutes a treatable stenosis. Furthermore, many of the Interventional Radiologists performing the procedure have commented on the rather steep learning curve involved in getting it right.

Increasingly, it appears that the CCSVI picture is more complicated than originally thought, with more blood vessels (including the lumbar, iliac, and vertebral veins) likely involved. The Liberation Procedure is a work in progress, and procedures done a year from now will probably differ significantly from those done today. Physicians are still in the early learning stages in regards to the treatment of CCSVI, and patients should be wary of being a part of anybody's learning curve. The success rate of Interventional Radiologists who have done numerous procedures appears to be much greater than those with less experience. Again, the decision of what physician to choose needs to be given very careful consideration by patients considering liberation; not just any doctor offering the procedure will be adept in its performance. There is increasingly a "Wild West" environment developing out there, as the prospect of huge financial gains made by offering the Liberation Procedure becomes apparent to physicians worldwide, who might undertake the procedure without the proper training and requisite experience. This is a pitfall that patients need to be very aware of, and must be very careful to guard against. Ask any potential treating physician serious questions, request patient references, and do as much research as possible. Until the myriad questions regarding CCSVI and its treatment are fully resolved, there will be plenty of opportunities for hucksters to take advantage of desperate patients.

A burgeoning medical tourism industry has sprung up around CCSVI, with clinics offering the Liberation Procedure in such diverse locations as Poland, Bulgaria, India, and Costa Rica, for prices generally ranging from $10,000-$20,000. Because of the persistent problems with restenosis, stent thrombosis, physician competency, the necessity for post procedure medical care, and the constantly evolving knowledge base regarding the best standards and practices of the Liberation Procedure, I strongly urge patients to forgo traveling long distances for treatment.

In a best case scenario, in which a patient travels thousands of miles and spends heaps of money to be treated with balloon venoplasty, and finds themselves to be amongst those lucky enough to see significant benefit from the procedure, there is still the large risk (some place it at 50%) of restenosis some weeks or months post procedure. In such a case, the patient would be back to square one, less the large amounts of money they spent on travel and the procedure itself.

Furthermore, aftercare is very important, as patients are commonly placed on blood thinning drugs post procedure. These drugs need to be carefully monitored for months after treatment. If a stent is implanted, it may be quite difficult for patients experiencing complications to find appropriate treatment locally, with the possibility of dire consequences. Keep in mind, too, that there is no guarantee that any given patient will be among those who experience dramatic improvement. One prominent Interventional Radiologist that has performed well over 100 Liberation Procedures estimates that one third of his patients see no benefit from the procedure. Given those odds, combined with the high risk of restenosis and the very small but real chance of medical complications that might arise after liberation, traveling long distances and spending tens of thousands of dollars to pursue treatment cannot be recommended.

Of course, every patient must make decisions regarding CCSVI and the Liberation Procedure based on their own unique circumstances. For the majority of patients, I would strongly advise waiting 6 to 12 months before seeking liberation, as much more information from both academic and treatment research studies will be available, and some standardization and identification of best practices will be achieved in the coming months by the Interventional Radiologists performing the procedure.

It's very important, and very difficult, to make an unemotional and accurate assessment of your own condition and rate of progression. Karen likes to chide me about the fact that I've been saying that I'm six months away from being bedridden for the last three years. Presently, my right side is almost completely paralyzed, and my left side is weakening considerably. Not a good combination. I understand the desperation that all MS patients feel, regardless of the particulars of their state of disability. We all want to just be rid of this disease. But unless your situation is genuinely dire, it will absolutely be in your best interest to allow the science of CCSVI and the techniques that go into the Liberation Procedure to mature, as doctors gain experience and more hard facts about the condition become available. Most MS patients experience a relatively slow progression of disability. Waiting, especially in the face of the hype surrounding CCSVI, is extremely difficult, but in this case might save you considerable bodily wear and tear, significant sums of money, and much heartache. If your situation is genuinely dire, and your condition is rapidly declining to the point that your quality of life soon will be nonexistent, then all bets are off. Do what you feel needs to be done.

I firmly believe that CCSVI will prove to play a major part in the MS puzzle. Like all things related to MS, its impact will vary from patient to patient. For some patients, it may very well be THE answer to their problems, for others only a partial solution, and for others still it may play no role at all. MS is a very complex and frustrating disease, truly a scourge to those who suffer from it. CCSVI offers a light at the end of the tunnel, but there is still much work that needs to be done. Thankfully, dedicated researchers and physicians are actively looking for answers, even in the face of sometimes withering criticism, and their findings may very well result in paradigm shattering changes that rock the world of MS. But it is still very early in the game, and it's important to remember that discretion is often the better part of valor, and that the race does not always go to the swift.

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  1. One bright side to the results so far is that they provide a demand for better imaging techniques. My neurologist told me one of the biggest problems with MS is it's just very hard to see what's going on in someone's brain while they are still alive.

    But now, with veins also needing better imaging, we can practice and develop better imaging methods on lower risk areas than the brain. Then those techniques might also work on imaging the brain better, which will allow researchers to really see what's going on. That would be huge.

  2. First of all, nice to see you posting again and such a thorough post too.

    The part that resonated with me most was the need for the people who will only listen to pro-CCSVI theory and the CCSVI nay-sayers to chill and open their minds. The truth is always somewhere in the middle.

    Thanks for giving us so much to think about.

  3. Well you may think I am just one of those CCSVI fanatics, but the following is reasoned and experience-based. I am not a doctor. Just a sentient human.

    The only reason anyone needs a Doppler Ultrasound, if they already have a clear diagnosis of MS, is to reassure medical professionals that their patients are not malingering. If you have 'MS', you need venoplasty. The whole Doppler thing has been used for too long as a red herring.

    It is a screening tool only, and will in the end find its only use, in detecting restenosis (if NOT in the azygous vein) as a follow-up measure.

    Neurologists are just mainly sissies who don't like to think about pain, but the procedure is almost painless. Balloons can be used as an exploratory tool. It is a day procedure. And venoplasties may not be as common as angioplasties, but they are very very common as well.

    I was home the next day from Albany.

    I have had two Doppler ultrasounds, both after my venoplasty. I had two before that, one very informal just to see what my stenosis looked like. The other was done using the Valsalva maneuver, so it's a good thing it was cheap, as it came back as 'normal'. I was only 'normal' if you used Valsalva. On the venogram, I was far from it. If you want, I can show you the pictures.

    Do *not* accept a verdict that you should not have venoplasty based on a Doppler Ultrasound. If you have MS, you need it.

    Stents are still a lot more risky, especially just upstream of the heart. Thromboses happen, and when they do it is a short journey to heart and lungs and possible death. But that does not stop doctors from operating on jugulars every day, as they are an easy way to do things like plasmapheresis, and some dialysis, chemotherapy, etc. Clots happen and these veins are carefully monitored, and blood thinners are used.

    I had 3 stents implanted in my arteries, and blood thinners were de rigueur there too, for longer than commonly used for ballooning.

    Clots still happen with ballooning, and follow up is vital. Mine is coming up in January but I have already had a 1-month exam. Stay local if you have confidence, and book it as soon as you return. Find out beforehand, so you do not end up without. The worst danger to you should be from prolonged use of x-rays.

    What to do until the neurologist comes around... If you are worried, wait. Wait until your follow-up exam, unless you are in obvious pain. The healing will continue for a long time, maybe years. Give your body a chance.

    "The darkest hour is always just before the dawn." - David Crosby

  4. Anonymous-thanks for your contribution, and I'm happy that you had positive results from your procedure. The most recent research, though, indicates that not all MS patients have CCSVI. Therefore, the facts would indicate that the statement "if you have MS, you need venoplasty" is incorrect. It may eventually be proven true, but at the present time that statement is not supported by the research.

  5. And again thank you for your well balanced written blog, Marc.

    Personally I think there is a hidden factor (or two, three?) apart from CCSVI that can cause MS. A fatal combination of these factors can cause MS. To make the puzzle more complex: may be several combinations can lead to the symptoms of MS.

    Another posibility might be that at the moment MS is some container diagnosis for all kind of different diseases. CSSVI can be just one of those diseases.

    Anyway, thank again, Marc. I am very sorry to read that your body is not cooperation. Fortunately you have a mind that is sharper than a Swiss armyknife.

  6. What an amazing service you provide to our community. Thank you.

  7. Excellent post Marc, no thoothpicks required.

  8. Wow, Marc. A lengthy post indeed. Making up for lost time, apparently. I am so glad you are doing better.

    Just judging by how my MS has behaved over the past 30 years, I don't believe my answer lies with CCSVI. Oh well.

  9. This is absolutely the very BEST info I have ever read on CCSVI... It was fair and accurate ....As an MSer , I have been watching this closely.... I am still doubtful of this procedure... And scared.... We all want a cure. I just don't want to die being cured .... I believe in research in all things that might help us... I know 2 people who were liberated and were great for a spell and now down worse than ever ... And the CCSVI ads look like ads for a vacation ...Hotel ,meals. spa, pool...OMG... It's like ,Stop the madness.... Thankyou for this MOST informative article ... From Nova Scotia Canada... Keep us tuned to what is going on ...

  10. Get your veins cleared and get out of your wheelchair - you are confused.

  11. As always Marc a thoughtful and inspiring piece. I have to be honest though, and make it known that I have gone to Costa Rica and was treated. Both jugulars had issues with reflux in the right one. May Thurner's syndrome was also found as with the jugulars, venoplasty was performed.

    I'm constantly asked how I'm doing and have I seen any improvements which I honestly answer that it's hard for me to say. I live and breath in this body and subtle improvements that slowly add up over time I sometimes can't see and I tell people that they are they best judge of my progress.

    I do not regret doing this but I have come to the realization that I have a large amount of work to do to help my body get things back! It took 10 years of PPMS to get me where I am and 6 weeks is not enough time to reverse that.

    It is a hard decision to make but if you do make it go forward with your eyes wide open.


  12. Marc, Thank you for a highly informative and well balanced post! I believe it’s quite easy to get caught up in the frenzy around everything CCSVI and this post truly helps to let us take a step back and view things in a more grounded and objective way. And, I managed to go through only one cup of coffee while reading the post (which I did twice!). I do have a couple of comments…

    While the Buffalo study showed that up to 25% of healthy controls met the criteria for a CCSVI diagnosis, this result does not necessarily mean that 25% of the population has CCSVI. It was later revealed by Dr. Haacke and Dr. Hubbard at a recent CCSVI conference that a number of those healthy controls were related to MS patients participating in the study. If CCSVI is proven to be congenital, it may also be hereditary. After Dr. Hubbard’s son was diagnosed with MS and CCSVI, he had both his wife and daughter tested, both of whom are healthy but suffer from fatigue. Both showed signs of stenosis in the same areas as his son, just not to the same degree. Hopefully the research that is in process now will help us understand a possible correlation better.

    With respect to those who see limited or no immediate benefit from the procedure, it appears that some are experiencing improvements over time. I just spoke to a friend of mine who had the procedure in July. In the past several weeks, he has started to dream again, something that he claims he hasn’t done for 10 years. The doctors in Bulgaria are telling patients to expect improvement for many months after the procedure (although it’s not clear where they have that experience from). So it may be important for people to have the long term perspective, even if there is no immediate benefit.

    Thanks again. You are a tremendous resource and I don’t know where we’d be without you!
    Best, Ann

  13. Love your take on the CCSVI debate. Refreshing and describes how I feel. Distributing it to all my friends, to get a better understanding of where I am coming from.

  14. Hi Marc,
    Excellent post. I appreciate all the info you have put in one place so I didn't have to go searching all over the net for it. Thanks!

  15. Well thought and organized post Marc.

    It's essential to make an objective opinion available given the current environment so keep up the good work.

    Despite a few unhappy comments, you're making accurate information available to the people who need it.

  16. Marc, thought you might find it interesting that I wrote my daily haiku triptych about this post. It also includes a link back to this post. As the poem says, amazing!

    CCSVI - Wheelchair Kamikaze Roundup

    An amazing post
    by Wheelchair Kamikaze
    another must read.

    research, results, and prospects
    are surveyed fully.

    All one needs to know
    presented with thoroughness

  17. Interesting and thought provoking post as always, Marc.
    My own take on CCSVI is slightly different. Rather than get hung up on the issue of which is the cause and which the effect, a matter, as you rightly say, that will require a lot more research to establish, I chose to view the operation for the time being as offering potentially great symptomatic relief.
    Personally, my own operation, carried out by Prof. Simka's team of endovascular surgeons and interventional radiologists in Poland, has given me a huge improvement in quality of life. I appreciate that there are others, like yourself, for whom this was not possible.
    There is a site,, which is working to compile data from MS patients who have had the operation on the improvement or otherwise experienced. While this is again not absolutely scientific, it should provide a better picture than word of mouth, both positive and negative.
    Regards thrombosis, I would point out that, as a group, MS patients are already at a relatively high risk of DVT, because of our lower mobility and tendency towards a sedentary lifestyle. Our pain and spasticity issues may also mask the signs, and lead to a failure in diagnosis.
    Life is not without risk, and we need to assess on an individual basis what we feel comfortable with.

  18. Mark,
    Thank you for this thoughtful and balanced post.
    I was dx-ed with MS in 2003 and was tested for CCSVI in June this year via a MRV and venogram (with internal ultrasound). Unfortunately, no stenosis was found. Needless to say I don't think everyone with MS has CCSVI, although you don't hear that much about that on the forums and research yet. I do think that more research has to be done as people get tested to understand their relationship.
    As disappointed as I am with the results of my CCSVI tests I don't regret having the test done. In fact, of all the treatments/medications I have tried in the last 7 years it was the least painful and most straight forward. I intend to follow the research - perhaps new data, research will warrant revisiting the issue at some point.

  19. Thank you for the your indepth and unbiased review. I appreciate your deep insight into this topic and more generally, your insight into human nature as we desperately struggle to keep control over our lives.

    In the nearly 20 years of my struggle with MS, I have looked everywhere for healing and I have made uncountable changes and adjustments in the way I live; but sadly, there is no magic bullet.

  20. Really great and informative post! Is iron build-up in the brain from blocked veins still being investigated as an MS factor? And if so, is chelation therapy still being investigated as a possible alternative to opening veins?
    I've searched the web but thought I'd ask so I'm not reinventing the wheel. Thanks!

  21. Thank you for this post. I have been researching CCSVI and find your remarks objective and straight forward. I will definitely be following your posts in the future!

  22. Mark;

    Wonderful post!!! What insight and more important, how you deliver. I have always said that it is not the subject, but how the subject is explained that makes it understandable and appreciated.

    What an analysys and summary of CCSVI! Amazing! You are the type of individual that would be a success in whatever you do! I admire you!!

    You are absolutely correct! I am one who went to Bulgaria..was immediately able to walk, get up, down, total bladder relief, etc. But after one week, a one month downhill roller coaster ride. People are still running overseas out of desperation. No one really considers after care. It's considered when it's too late...after.

    I truly believe that you have summed up hours and hours of reading CCSVI blogs and posts on the various sites.

    Had I relegated my time to the wisdom and writing of the Kamikaze, I could have saved much time, effort, cash (Bulgaria ran in total about $15K) and aggravation, the very least to say...wear and tear on my body.

    So sorry to hear about your right and left sides. Are you still able to wheel around the city? Have not seen a new video for a while.

    Your posts are never too long...

    May the Almighty bless you, my friend, and all of those afflicted with this terrible disease, with a complete recovery.


  23. Four Star Post! Thanks for all the info. Wait to hear you on NPR Monday.

  24. Marc,

    Another sterling contribution to the CCSVI debate, thank You. I was tempted to nit-pick but won't cuz you got all the important points just right.
    We need to foster cooperation and inspire MS providers to be interested in helping with the research.
    While I agree with your recommendation to wait 6- 12 months--if you can, I am grateful for the pioneers who have gone before me. I decided to risk it, and join them when I found a university based program where my case would contribute to the answering of the many questions being asked. I have been seeking clinical trials since I was diagnosed. Always being rejected, for 8 years, because of being SPMS. This was the study where I was accepted and I couldn't be happier.

    I still need more work, but I am no longer thinking of a wheelchair in my near future. i threw away my cane in the desert of the middle east 3 weeks ago cuz it no longer is helpful. I can walk unassisted-- all day.

    Fortunately, I am in the group who has seen marked improvements. I'm a classic case of SPMS in zamboni's criteria. I'm 3 months out and have my life back. getting a bit better every day instead of a bit worse. I have 1 stent. may get another one next year, but I'm older than you and have more tolerance for risk.

    The pathology is variable in our local group, CCSVI-MSkteers, as are the results. No one has regrets for being treated, tho some of us were hoping for more. Some, like you, declined a stent, those problems are not fixed. And I'm happy to hear that the stent folks are thinking about where the technology might lead. I do think stents will be much better in a few years, and those of us who have the current ones will likely be stuck with an inferior product.

    for now, I'm one happy grandma who can be trusted to hold the babies again, and one motivated activist who is getting involved in promoting high level clinical research at Stanford and U of Maryland.

    We have raised $30,000 so far with our sights set much higher, thanks to the support of Annette Funicello. She has been waiting a long time for such a promising research opportunity to come along. By donating to her foundation 100% of money collected will go to CCSVI research. She donates all administrative costs, as do we. All for one, and one for all.

    Kind Regards to you and your many faithful followers. you have done a great service to us by writing this blog. exciting times ahead.

  25. Marc, welcome back to the blogosphere. Thank you for this superbly written, thoughtful, well-researched piece. I hope everyone with questions about CCSVI will find it and read it.

  26. Marc, thank you as always for being such a crucial and objective resource.

    I agree CCSVI is going to be a piece of the puzzle, but not a cure all. I think MS is a wide spectrum of diseases, not a single entity. Because of that, I don't hold out much hope of a cure in our lifetime. The condition is just too complex.

    NPR, eh? Another notch in your belt. I'm telling you, it will be the Today Show before we know it. I hope you remember us little people when you are up there on top. lol

  27. have you seen that new balance band everyone is raiving about? The company went from gross sales of 8,000 last year to 17 million this year. I guess it makes your balance superior. The U of Wisconsin just proved that by using a plain rubber band the results were exactly the same. CCSVI angio is the balance band to me.

  28. Marc,
    NPR's Morning Edition had no mention of CCSVI this morning. Do you know if this is still to be aired, or is this topic too potentially injurious to the drug industry for it to be mentioned on a US broadcast network?

  29. Hi! I am not aware of thrombosis being a major concern. To my knowledge only one patient in Canada has had this happen and it was not life threatning.
    Also restenosis, does occur. but certainly not at a rate of 50%.
    Doctors have shied away from doing the procedure because they have been threatened with losing their hospital privileges, not because they see failure.
    I don't think that people should go abroad to have this surgery, but that's mostly because I think we need to push to have it done at home.

    What galls me is that I can't even pay to have it done in Canada; let alone that the government is denying me my rights under the health act, to have it done as part of my universal healthcare.

    I appreciate your post yet at the same time some of your facts just don't stand up. this either. Yeah it's nice that you were interviewed but until you do some intensive research you should be careful what you say. You are simply adding to the confusion.

    If angioplasty works or doesn't work,I see no reason to to deny people who want to try this. The risks are slight and at home, it is a fairly inexpensive procedure.

    From my point of view there really isn't a whole lot of treatment out there that works or works well, so what have we got to lose? I say let's go for it! Cast doubt aside and Damn the torpedoes!!

  30. Taxingwoman-I have indeed done intensive research, which has included talking to multiple physicians, patients, and experts at the National Institutes of Health.

    Thrombosis is certainly an issue that is growing of growing concern, particularly in those patients that have received stents. Once a stent clots over, it is very difficult and sometimes impossible to remove that clot, thereby closing down that vein permanently. More and more patients are reporting this very problem with the stents implanted in the jugulars. This conclusion is not in question. A simple look at the patient accounts on the "ThisIsMS" CCSVI forums will illustrate this point beyond a doubt.

    As for the rates of restenosis, in Dr. Zamboni's original study he himself found restenosis happening at a rate of about 50% within 18 months after having the procedure. Again, the anecdotal reports coming out of patients who have visited Poland or Bulgaria, as well as many who have had the procedure done here in the states, back up that number. Since there have been no formal tracking studies done, putting a precise number on the chances of restenosis is difficult, but numerous patients are reporting this problem.

    You are correct in stating that most doctors are shying away from doing the procedure because of pressures from their administrators, but I never even infer that they're not doing the procedure because of risk of failure. Some have become reticent about using stents, though, because of the above stated reasons.

    Before you accuse me of not doing my research, you might want to conduct some of your own. I pride myself on the presenting the facts in a fair and balanced fashion, and I while I welcome dissenting opinions, those opinions should be based on fact.

  31. The smaller wheels make it easier to move the wheelchair in tight spaces, such as an apartment or crowded office.

  32. Marc, Thank you for another wonderful writing on CCSVI..and all in one place! It is very informative and very classy indeed..because you never throw insults on either side and that is what keeps us coming back to read your words more and more. I for one, appreciate the compassion you have for those who are for it, those who against it and those in the middle simply trying to get an honest, factual answer. When trying to decide on these CCSVI decisions, you need people who will help you feel comfortable just questioning your medical health and not have your head bit off because you have a different answer. This was a factual article written for all of us with MS to help us understand it all better. I am very very sure that your articles on this subject has helped many many people and comforted many more.
    So, I look forward to more of your writings and thank you from the bottom of my heart for the work you do here. It is surely appreciated.
    Thank you and GOD bless, MamaGirl

  33. Marc,
    I have always found your writing to be unbiased, factual, well researched, compassionate and extremely well written. As far as I am concerned you are the gold standard when it comes to all things MS. I am upset to read comments on your blog attacking your balanced and informative posts. I am even more upset to see you wasting your time defending your statements. Considering the magnitude of your readership and good that you do, your time and resources are too important to be squandered on such a futile effort. Perhaps it’s time to employ a filter on your blog that requires your approval of comments prior to publishing. I know you don’t want to do this but it is what it is.


  34. I went in 3 times. Ballooning, stents and clots. I am now out of my wheelchair able to care for myself. Taking that chance was worth it to me. I couldn't stand asking my family to tend to my every need. Everyday you remain untreated you are risking (as you recently experienced) more serious illnesses. I understand it's scarey....but, like you, I had gotten so far along in my disease I could not at least try to get better. Maybe I was lucky...all I know is instead of getting worse everyday, I'm getting better.

  35. Marc,

    Another excellent post. I want to raise a few questions about some of your points:

    "Much of the evidence presented at ECTRIMS was mixed . . . casting some doubt as to whether or not CCSVI is a cause, rather than an effect, of Multiple Sclerosis."

    Who cares whether it is cause or effect? If the set of symptoms that are fairly consistently reported to be fixed by venoplasty are real, why is the relationship between CCSVI and MS relevant?

    You say some CCSVI advocates were disappointed that some evidence suggest that CCSVI may not be a cause of MS. As just such an advocate, I say who cares whether there is a link? You put this very well:

    "If it turns out that the procedure is a cure, well, then MSers have hit the jackpot. If liberation "only" results in a dramatic drop-off in the misery caused by the disease, it's still a huge win, and will forever change the way MS is researched and treated. More importantly, hundreds of thousands of MS patients around the world will have a new and relatively straightforward conduit to relief."

    I would suggest that those who are **benefiting** from treatment (I know not everyone benefits) are fairly universally listing a set of improvements that include:

    1. Less fatigue
    2. Fewer headaches
    3. Improvements in balance
    4. Less cog-fog
    5. Improvements in vision
    6. Less heat sensitivity
    7. Elimination or reduction of tingling and other "electrical" sensations and associated neurological pain
    8. Restored feeling in extremities
    9. Choking less frequently

    The CCSVI Tracking project, while not scientifically valid, is providing pretty solid information on how people are reacting to treatment:

    Maybe all these improvements are not related to MS as much as to impaired blood flow. Maybe there are two diseases: CCSVI and MS.

  36. With the space limit on comments, I have divided my comments into three posts--see what happens when you write a long post. :>)

    I would also like to suggest that n counts. You cite studies without reference to how many people were examined. I think that is a very important consideration in evaluating scientific and medical literature. A study involving 10 people does not have the same weight as one involving 1,000.

    Simka's paper is based on 587 people.

    He found:

    **venous lesions did not correlate with duration of MS.**

    You quote the Beruit study which only involved a total of 42 patients and which to me seems to me to be saying that MS gets worse over time as evidence that because there **IS** a link between the duration of MS and venous problems, that CCSVI must be caused by MS.

    The only number reported in the abstract with considerable statistical significance (p<0.0001) was that 92% of the patients with RRMS over more than 10 years show signs of what they term, extracranial venous stenosis (EVS). Of course, we are talking about 12 out of 13 people in the study so it is hard to give it a lot of credibility, in spite of the statistical significance just as we need a lot more evidence than Dr. Zamboni's 65 patients provides about the benefits of venoplasty. Good for the goose is good for the gander.

    The cited Italian study found few people with CIS met the ultrasound criteria and none showed problems upon examination by selective venography, yet the Buffalo report (much bigger n by around a factor of 10) found that 38.1% of people with CIS met the criteria for CCSVI using TCD.

    Either Simka and Zivadinov are right, and their n suggests to me a greater likelihood of that being true, or Beruit and Italy are right with their smaller n. The answer is not somewhere in the middle.

  37. Finally, my last post, promise! Also, I hope that my comments are received as they are intended, simply to raise questions, not to suggest or say that you are wrong in your view. The only thing I know with certainty is that there is whole lot about MS and CCSVI that I don't know.

    "We are also seeing **the very troubling trend of restenosis** (veins closing back up) several weeks or months after balloon venoplasty, and also an increasing amount of accounts of problems with stents implanted in patients' jugular veins, primarily in the form of stent thrombosis (clotting), and stented veins stenosing in areas above or below the location of stent implantation."

    " . . . very troubling trend of restenosis . . . " Really? Are you losing sleep over this? I'm not.

    From day one, Dr. Zamboni reported a restenosis rate of 47% and advised against using stents. Not sure how that translates into a "very troubling trend."

    And we are seeing progress in the form of Dr. Sinan's approach which has reduced the restenosis rate from Zamboni's original 47% to 2%. Dr. Zamboni said at the AAN session that he has reduced the rate to 29%, though provided no further explanation of this.

    Seems like that is moving in the right direction, fast.

    I think the IR's and vascular surgeons will figure this out and for those who benefit, it will still be cheaper by a factor of 3 to have venoplasty done every year than to pay for DMDs if that's what it takes.


  39. Hi,
    Reading your site and studying the Bible has given me hope like I haven't had in years. I'm a 51 year old man in a nursing home with progressive ms. I've had it 20 years and have use of only one arm. I retired in december of 2004 as a senior field engineer at AT&T. I get around on an electric scooter. In spite of this demon driven disease I still manage to help the workers and residents here with their TVs, computers, and other electronics.
    Now let me tell you a bit about the Bible because there's evidence all over your blog that God almighty is calling your name....
    The book of Proverbs chapter 18 verse 21 says "Death and life are in the power of the tongue" meaning don't curse yourself by talking about how bad the disease is. Chapter 23 verse 7 says "As a man thinks in his heart, so is he". You seem to understand this one really well...

    Here's some free links free computer Bible
    free Bible in mp3 format

    I'm working to reach a level of understanding to be healed through faith alone. Here's some free mp3 lessons for that.

    Here's a woman healed of R/R ms

    ...and a bunch of free mp3 life help through the Bible

    Therre's more free stuft on the site to look through too....

    I have an appointment 1/15/11 with my neurologist, Harold Moses Jr., at Vanderbilt Hospital. They are a teaching hospital who do beta testing and trials in a number of pharmaceuticals and procedures. Any hints you may be able to offer in dealing with these stodgy university doctors wll be appreciated, used, and passed on...

    No matter what, I'm going to be rid of the devil and this awful life stealng disease. Hope you are too !

  40. I have a question about why everyone thinks if you have the procedure you could die? I have had to have it done twice now. Not once was I worried about dying. In fact if death was common I wouldn't of done it with two young children. I had it done first in June (my azygous and right jugular were ballooned) and then on November 1st (Monday). I knew when my vein/s had closed back up. I got tired and couldn't stop sleeping and felt horrible all over again. It turns out my azygous and only my azygous had closed back up. I looked at the venogram and it was narrowed right by my heart. Which can't be good for anyone. With having heart disease be very common in my family I am worried about the relationship. I know this is a work in progress and that's why I think studies are so important and I am proud to be a part of them.

    My neuro told me also that people are dying from this procedure and from what I have seen and heard there is still only one death and that was due to another medical condtion and blood thinners. From what I understand some people are dying from not having this procedure like in Barb Farrell's case. She was close to death and is now home after having a feeding tube and unable to sit up or talk. Her life has turned around for the better.

    I do like your fair and well balanced view, but some of the comments make it sound like it's going to put you at a huge risk for having this done when there is some, but people are not dying from having this done or it would be stopped. Am I correct? I do understand that stents are causing some problems and clots are forming, but are those people should be taking plavix and getting their blood work done. I know The Hubbard Foundation is collecting data from all over the US. I just simply would like you to address the statement about people dying because of this procedure. I don't like the scare tactics that are being used in some cases and it's making people very scared of the thought of angioplasty.

    I hope you are feeling better and I hope that they can figure out your case. You really do have a fair and open mind about CCSVI so thank you!

  41. I'd like to thank all who have commented on this post, including those that have left negative comments. I value intelligent dissent, as nothing can be learned by speaking into an echo chamber. It's my policy to never delete any post as long as it's not abusive to me or any of the other commenters on this site. However, it would be nice if some of the folks that don't agree with what I've written which state facts to back up their claims of my inaccuracies. Again, that we and intelligent give-and-take can be accomplished, simply writing that I'm "confused" doesn't really accomplish much of anything.

    I'd like to address each and every comment individually, however because of the sheer volume of them, it's not really practical. Please know that I do value every comment on every post in this blog. I'll now take a stab at answering all questions and criticisms that have been posed in the various comments above.

    Anonymous-"Get your veins cleared and get out of your wheelchair - you are confused." I'm not sure if you read the entire post, because if you did you would realize that I have undergone liberation, but my blockage was unable to be cleared. It would be of great value if you could tell me exactly what I'm confused about. Leaving a comment such as this provides very little information for anybody to benefit by, but I hope it made you feel better to get it off your chest…

    Ann-the Buffalo studies healthy controls were comprised of about one third family members, and two thirds nonfamily control subjects. The family members showed only slightly higher propensity for having CCSVI than the nonfamily individuals. You can read the actual numbers here:

    According to the Buffalo numbers, at least, it does appear the approximately 25% of the healthy population does have the venous anomalies we've come to call CCSVI. Medically, it makes much more sense for people to be experiencing improvements in the long term, rather than immediately. It would take the damage CNS many months to start true recovery. I'm honestly not sure what to make of the reports of immediate improvements in regards to foot drop etc. Thanks for your kind words.

  42. Judy-just had to thank you for your lovely haiku. Who would've thought that anything I ever wrote would be summarized in a haiku? Life surely is filled with surprises…

    Sue-your point about MS folks being high risk of DVT is well taken. Thanks.

    Sue W-I personally am not sold on the idea that iron deposition plays a major part in the CCSVI story. We see iron deposition in many neurologic diseases. The fact of the matter is that when nerve cells and oligodendrocyte die, they release iron. Every living cell in the body contains iron, and when those cells meet their demise, that iron is left behind. It very well could be that the iron being seen in MS brains is the result of nerve damage and death, and not because of it. To my mind, the disruption of blood flow alone caused by venous blockages could be responsible, over the course of decades, for the damage found in PwMS.

    Carol-I'm very happy that you found relief, and agree that the stent manufacturers do need to design stents specifically to address these issues. Thanks for your contribution.

    Edward-seems that we are in agreement on the issue of cause and effect. Intellectually, of course, I'd love to get that question sorted out. On a practical level, though, it's much more important to pinpoint with accuracy the relative effectiveness of the procedure on a variety of MS symptoms. The CCSVI Tracking Project has potential, but any survey that relies on self-reported data is notoriously unreliable.

    The problem with the Simka study is that, according to most reports, he's not doing much follow-up on the patients he treats. Therefore, it's hard to be confident in the liability of the numbers he states. Smaller numbers in the Beirut and Italian studies to lead to a greater statistical variance, but their methodology seems sound. The Beirut paper was voted the best paper presented at this year's ECTRIMS, after all. Zivadinov and Simka are not in agreement. Dr. Z's research is pointing away from their being a causal relationship between CCSVI and MS. His conclusions fall more in line with those of the Beirut and Italian papers. I was very concerned about misstating his conclusions, and through my contacts at the BNAC had Dr. Z vet the paragraphs I wrote regarding his research. He signed off on my summarization.

    No worries about how your comments are being received, I appreciate your intelligent questions and push back on some of my conclusions. Restenosis is a troubling trend for number of reasons. First of all, people are spending lots of money getting this procedure done, only to find that the results were only temporary, and they'll need to undergo the procedure again to recover whatever benefit they first experience. Not many people can afford multiple attempts at liberation. Furthermore, the procedure entails a not insignificant dose of radiation, not something you'd want to subject yourself to multiple times a year.

    Mr. OkaJima-not sure if your comment is serious or not, but if you would pitched with any command during the past baseball season, the Red Sox would certainly have been contending for a playoff spot late into September. If you are not joking, then I suggest you reread my post. I'm not fighting CCSVI, I'm advocating for it. Unfortunately, it does not work for everybody, but by and large it is safe. Glad you can move your whole foot, hopefully that will restore the late break on your changeup. I'd work on getting a little more snap on my slider, if I were you…

  43. Marc, great information, as usual. Is there any indication that for people whose disease activity is non existent (no inflammatory in the recent past) but still incur progression due to nerve degeneration, get any benefit from the Liberation Treatment. Clearly the mechanism for nerve repair is not the same for reducing/ eliminating attacks or the immediate effects thereof.

  44. william57:
    Another posibility might be that at the moment MS is some container diagnosis for all kind of different diseases. CSSVI can be just one of those diseases.

    You hit the jackpot here. MS is nothing, but a collection of symptoms. No one, nowhere, never, said that it has to be one disease. After all, we still don't really know causes.

    As CCSVI vs conventional neuroscience. I live in Poland and meds are so ridiculously expensive I could never afford them anyway.

  45. My heart goes out those with MS.
    We are beginning to find out more about these auto immune diseases - the whole field of immunology is less than 50 years old. Let's focus on the basic research needed first. It is like sharpening the knife - feels like you are wasting time when not cutting, but in the long run much more helpful.
    Consider the biggest setback to research in the last fifty years: Ronald Reagan cut the NIH budget in 1980 and stopped a whole lot of research and labs were shut down never to reopen. It took twenty years to recover.
    We find it easy to give oil companies and "businesses" all these tax breaks, give the wealthy a tax cut, all the while we have the researchers cut down to the bone with less than 10% of the grants funded. Bright kids with Ph.Ds in biology get $30,000 a year as post docs after 10 years of college. Wall street gets 50% of the Harvard graduates - why are these bright people not working on MS?
    Let's focus on doubling the basic research on immunology and molecular biology - and lets hope we get a breakthrough soon. The more we invest in research - the more likely we are to getting a cure soon. Remember, this is a lot like a lottery: just one breakthrough can be the CURE for MS. Lets have a Tea Party to raise the NIH budget.

    God Bless you all.

  46. good luck with your ccsvi it was not the answer for me. I went against my doctor's advice and have it done. I should have listened, we are dreamers and sheep!

  47. gidday, what are your thoughts on CCSVI treatment paired with stem cell treatment?

    1. Well, it seems that both therapies a very hit and miss. I've had many more readers tell me that CCSVI hasn't worked for them than have seen significant lasting benefit. Those who seem to fair best have early RRMS, and the symptoms most often improved are things like fatigue, heat sensitivity, and balance. As for stem cells, again I hear very mixed things. The patients that do seem to get benefit often see it fade rather quickly. Makes sense, because the stem cells don't do much if anything to mediate the disease, thus the benefits would be temporary. I would imagine repeated treatments would be required to maintain benefit. I understand that combining the two might have a synergistic effect, and the idea is that the stem cells might help to keep veins from re-stenosing. Really hard to comment on this, because the cost is high, and the benefit is as yet unknown. Lots of question marks, not many answers…