A Patient's Perspective on CCSVI, in Words and Pictures (Part Four)

On July 15, 2011 it was my honor to give a presentation at the Patient Information Day of the Second Annual CCSVI Update Symposium, held at the Crowne Plaza Hotel in Times Sq., New York City. The organizer of the symposium, Dr. Salvatore Sclafani, asked me to write an essay for oral presentation on "A Patient's Perspective on CCSVI", using some of the photographs I've taken from my wheelchair mounted camera to illustrate my talk. I've posted the resulting essay here in four parts, spaced a few days apart. Here's the finale, part four (click here for part one, part two, or part three):

This is one of my favorite photos that I've taken from my wheelchair. It was taken in Central Park, in an especially beautiful section called The Conservatory Gardens. The gardens are truly spectacular, and I'd urge anyone who has the chance to visit them to do so, especially in spring or autumn, when they are bursting with color.

For me, this photo embodies two key elements, freedom and patience. While the element of freedom may be easy to discern, the patience involved in taking the photo is probably harder to detect. When I first discovered this fountain, adorned with sculpted sparrows, I also saw real-life sparrows utilizing it as a birdbath, just as the artist intended. I found the juxtaposition of the inanimate and live birds striking, and hoped to capture a moment that would illustrate the coming together of nature and such a graceful example of the power of the human imagination. In order to capture the fleeting moment caught in this frame, I sat in one spot for about an hour and a half, taking literally hundreds of photos, systematically shooting pictures in rapid-fire mode every time a bird took off or landed. Luckily for me, one of those hundreds of photos turned out to be this one. Patience does have its rewards.

When it comes to the pace of CCSVI research and treatment, I completely understand how difficult it can be to be patient. Those of us suffering from chronic, progressively disabling disease know all too well that the clock is ticking. Any youthful notions of immortality or indestructibility were demolished the moment we were shown MRI images depicting holes in our brains and spinal cords. Stripped of such illusions, a certain desperation can set in, and the desire to do something, anything, to stave off a calamitous future takes hold. This desire can manifest in many forms, from outright panic to steely determination, but every self-empowered MS patient has their radar set to scan the horizon for any new development that might save them from a dreadful end.

CCSVI certainly holds the promise of potential salvation. This radical new approach to looking at MS, offering fundamentally new ideas about how to treat the disease, gives the afflicted a life ring to grab onto, a ring plainly inscribed with the word Hope. But we are yet in the early stages of our understanding of CCSVI and how best to treat it. The treatment procedure I underwent a little bit over a year ago is far different than the procedures being done today, and procedures being done a year from now will likely be more different still. Therefore, while no one could argue with any patient choosing to pursue treatment now, for some the decision to be patient and wait cannot be viewed as a terrible choice. Sometimes, the race does go to the swift, but there are times too that discretion is the better part of valor.

As for the other element prominent in this photo, freedom, well, that is what I wish for every MS patient, everywhere. Freedom from the fear that we wear as a second skin, freedom from the cognitive deficits that threaten to steal our very essence, freedom from the braces, canes, scooters, and wheelchairs that that we use to compensate for our damaged bodies, freedom from the grip of a medical establishment that all too often seems more designed to seek profits than cures. Let us all someday soon alight like birds from a fountain, our sweetest dreams come true, and our fondest desires realized.

A Patient's Perspective on CCSVI, in Words and Pictures (Part Three)

On July 15, 2011, it was my honor to give a presentation at the Patient Information Day of the Second Annual CCSVI Update Symposium, held at the Crowne Plaza Hotel in Times Sq., New York City. The organizer of the symposium, Dr. Salvatore Sclafani, asked me to write an essay for oral presentation on "A Patient's Perspective on CCSVI", using some of the photographs taken from my wheelchair mounted camera to illustrate my talk. I'll post the resulting essay here in four parts, spaced a few days apart. Here's part three (click here for part one or here for part two):

This is a photograph taken in Central Park, which is a photographer's paradise. The man making the giant bubbles is a fixture in the Park, spending countless hours on sunny days creating colossal bubbles, much to the delight of children and adults alike. Kids invariably flock to him at the sight of his fantastical creations, intent on grabbing hold of that which could never be caught.

Shooting photos of the action surrounding the bubble man, I'm always struck by the wonderful innocence of childhood, when all things seem possible, even the improbable act of catching a giant iridescent bubble. At their apex, floating free, the huge bubbles do indeed for several moments assume an appearance of shaky permanence, almost like airborne jellyfish, only to inevitably burst in a shower of soapy water a few short moments later. Undeterred, the children try ever harder to catch them, taking delight even in their repeated failures at the giddy but impossible task at hand.

When healthy, I think many of us were very were much like these children, taking for granted the foundation of our daily lives, which seemed as solid as concrete, but which all too soon proved to be as transient as a huge soap bubble. At the moment of diagnosis, the childish notion that the arc of our lives would forever be strong and true came to a jarring end. The future that we had long imagined for ourselves, a precious bubble of dreams, suddenly burst by a torrent of words spoken across the desk of a physician. At some point in the past, none of the patients reading these words, or their loved ones, ever imagined that they would be one day be confronted with the scourge of disease, desperate to find relief and salvation, seeking to educate themselves and inoculate their spirit with a much-needed injection of hope.

The trauma of diagnosis is often followed by creeping disillusionment, as the realization that that shiny miracle machine known as modern medicine, with its wondrous high-tech devices and endless stream of headline worthy breakthroughs, is itself just another soap bubble, the illusory nature of which is only revealed once you are forced inside the belly of the beast. As the writer Gertrude Stein said, when you get there, there is no there there. No surety, no answers, and certainly no cures, at least not for this thing called multiple sclerosis.

But, through sheer strength of will, we not only survive, but thrive in spite of the disease. MS can take many things, our careers, our relationships, our mobility, but it can never ever touch the spirit within, unless we give it permission. And that is a permission that should never be granted. We fight back, with determination, education, and a big iridescent bubble called hope.

CCSVI has for many provided that hope, and in turn, for some, that hope has been transformed into actual progress made against the disease. There are still many obstacles to the hurtled, many chasms to be crossed, but momentum is building. The true nature of CCSVI and its place in the MS puzzle probably lies somewhere between the panacea envisioned by those most optimistic and the fool’s errand it's been labeled by its staunchest naysayers. But research into CCSVI has already wrestled the stubborn attention of some experts away from the party line of autoimmunity, and the power of educated patients is changing the patient-doctor dynamic from dictatorship to partnership. Never stop reaching for bubbles, my friends, someday they will be held in our arms.

Click here for part four…

A Patient's Perspective on CCSVI, in Words and Pictures (Part Two)

On July 15, 2011 I was honored to give a presentation at the Patient Information Day of the Second Annual CCSVI Update Symposium, held at the Crowne Plaza Hotel in Times Sq., New York City. The organizer of the symposium, Dr. Salvatore Sclafani, asked me to write an essay for oral presentation on "A Patient's Perspective on CCSVI", using some of the photographs taken from my wheelchair mounted camera to illustrate my talk. I'll post the resulting essay here in four parts, spaced a few days apart. Here's part two (click here for part one):

I photographed this poor soul just a few blocks away from Roosevelt hospital, on Manhattan's West Side. Judging by the hospital bracelets on his wrist, he'd obviously been newly discharged. The bracelet warning of his being a fall risk resonates in any number of ways, coming to metaphorical fruition probably within hours of his leaving the hospital.

Patients dealing with multiple sclerosis, or any serious incurable illness, are far too well acquainted with the notion of risk. From the moment of our diagnosis we are bombarded by a befuddling array of new and frightening information and faced with making with grave choices, all of which entail varying degrees of risk. I vividly remember the day of my diagnosis, when, with my head spinning with fear and confusion, I was handed a pile of videotapes and told to go home, watch them, and choose my treatment option. I felt as if I'd been handed citizenship papers to a world in which I never wanted to be part of and for which I had no roadmap or experience to draw on.

My reaction to being confronted with this new path, riddled with pitfalls and landmines, was to intensely educate myself as best I could. I quickly learned that every choice confronting the MS patient is fraught with risk. Doing nothing is obviously risky. There is a reason they call MS a progressively disabling disease. It progresses. The existing mainstream treatment options all carry some degree of risk, ranging from relatively minor flulike symptoms all the way to ghastly and deadly brain infections, and many of these drugs are of questionable efficacy at best.

Now, CCSVI has entered the picture. What at first seemed like a relatively simple hypothesis, with a relatively simple solution, has turned out to be more complicated than most expected. Instead of arcane and impossible to understand ideas about autoimmunity, many of which sound like bullshit because they very likely are, CCSVI postulates that MS is the result of disrupted blood flow through the central nervous system, a relatively easy idea to wrap your brain around. Likewise, its treatment, the opening of blocked veins through a minimally invasive procedure also seems relatively simple when compared to traditional MS therapies, all of which ominously tinker with the workings of the infinitely complex human immune system.

Unfortunately, things are turning out to be not quite as simple as first hoped. As research into CCSVI has picked up, we've been confronted with a sea of sometimes contradictory findings. The CCSVI treatment procedure itself is a work in progress, with many treating physicians reporting a surprisingly steep learning curve required to master the procedure. The techniques being used are undergoing constant refinement, with no standard of practice fully agreed upon by all of the physicians currently involved in treating CCSVI.

Please don't misunderstand me, I fully believe that there is merit to CCSVI, and that its treatment has the potential to help a significant portion of the MS population, but once again, in considering whether to undergo CCSVI treatment, the MS patient is confronted with the weighing of risk. Not all patients are helped by treatment, and those that are helped often find the benefits they receive only temporary, requiring them to undergo multiple procedures to maintain their perceived gains. A small percentage of patients suffer potentially serious side effects, including blood clots and the formation of scar tissue in their veins. There's also the cost of the procedure to consider, which can be substantial if not covered by insurance, the expenditure of which brings no guarantee of success.

It's vital that every MS patient considering any new treatment to honestly tally their own unique risk/reward calculation, and the only way to properly do this is to self-educate with all blinders off. When it comes to making decisions as vital and controversial as to when and whether to undergo CCSVI treatment, I've often found more value in listening to and understanding the opinions of those you don't agree with than to those you do. A truly well-informed patient should be intimately familiar with both sides of every argument regarding their own care and treatment.

Click here for part three…

A Patient's Perspective on CCSVI, in Words and Pictures (Part One)

On July 15, 2011 I was honored to give a presentation at the Patient Information Day of the Second Annual CCSVI Update Symposium, held at the Crowne Plaza Hotel in Times Sq., New York City. The organizer of the symposium, Dr. Salvatore Sclafani, asked me to write an essay for oral presentation on "A Patient's Perspective on CCSVI", using some of the photographs taken from my wheelchair mounted camera to illustrate my talk. This was a challenging proposition, since none of my photos were taken with MS or CCSVI in mind, but the presentation turned out well, and I was not pelted with rotten vegetables or garbage, as I feared. I'll post the resulting essay here in four parts, spaced a few days apart. Here's part one:

This photo is of an abandoned structure on the Manhattan side of the Hudson River, known as the 69th St. Transfer Bridge. Built in 1911, during its heyday, when Manhattan's Riverfront was teeming with industrial activity, the structure was used to transfer railcars onto barges for trips to freight ships or across the Hudson to rail lines in New Jersey. It is now listed on the National Register of Historic Places.

I've long found this derelict structure to be captivating, and have often felt a sort of kinship towards it. Like me, the transfer bridge once stood tall and strong, hard-working, perfectly in sync with the beehive of action that surrounded it. Now wrought immobile by rust and decay, the transfer bridge is a stubborn old beast, still able to grab attention in spite of its diminished state.

Like many of my MS brothers and sisters, I too can no longer function as I once did. Instead of rust doing its insidious damage to the hard steel of the bridge, a mysterious disease process now does ongoing injury to the all too soft tissues of my central nervous system, creating neurologic deficits that in eight short years have left me spending much of my time sitting in a wheelchair. But, like this structure, I too refuse to go quietly into the night, and hope, through words and images, to at the very least give voice to the stresses, frustrations, and emotions that come part and parcel with having a progressively debilitating chronic illness. In my fellow patients, I've met countless individuals whose guts, courage, and spirit inspire me, and whose determination to live fulfilling lives in spite of the disease should serve as lessons to us all, sick and healthy alike.

Of course, this photo not only depicts the long abandoned transfer bridge, but also rays of sun light bursting through a threatening cloud bank, daggers of illumination cutting through a potential source of gloom. These rays of light are akin to Dr. Zamboni's CCSVI hypothesis, giving hope to a patient population searching so desperately for answers. Despite the incremental advances made in treating the disease over the last decade or so, MS has remained a maddeningly elusive target, its victims left to choose among an array of drugs which, in varying degrees, all carry with them the risk of serious downside, and none of which offers a cure.

The source of hope called CCSVI has burst through this haze of confusion and energized MS patients worldwide, like starved seedlings suddenly exposed to a sunny day. Although still early in the game, the very promise of CCSVI has beckoned patients to organize and educate themselves, and to ask questions that were in dire need of asking.

By shaking up the status quo, CCSVI has already won a tremendous victory, and the hope it has given to many is nothing short of a blessing. But in assessing the full impact of CCSVI, we must also be careful not to be blinded by these same bright rays of hope, as investigations into CCSVI, and the methods to treat it are still in their infancy, and the full impact of the hypothesis has yet to be determined. Certainly, we have seen the CCSVI treatment procedure help many patients, sometimes dramatically, but we have also seen it be less than effective for a substantial number of those who have undergone it. In fervently desiring CCSVI to provide answers for all, we must guard against hope eclipsing reason, and understand that there is still much to be learned.

Click here for part two

Video: CCSVI Doctors Roundtable Discussion

Image by Beveik Rimtas via Flickr

Sorry that things have been so slow around here for the last week or so, but I've been busy preparing to give a live presentation at the Patient Education Day at the Second Annual CCSVI Update Symposium, to be held this coming weekend at the Crowne Plaza Hotel in Times Square, Manhattan (click here for details). Dr. Salvatore Sclafani, who is hosting the symposium, asked me to put together a presentation including some of my photographs for an essay on "A Patient's Perspective On CCSVI".

Dr. Sclafani is an innovative CCSVI practitioner as well as an extremely accomplished amateur photographer himself, so I was honored by his asking me to participate. Have no fears (as if), those of you who can't attend the symposium will be able to catch the presentation right here on Wheelchair Kamikaze, as I'll post the photos and words I wrote to accompany them as a series of entries on the blog.

In the meantime, here's an incredibly informative video, recorded this past March at the annual Society for Interventional Radiology meeting in Chicago. A CCSVI Doctors Roundtable Discussion was presented, which included some of the biggest names in CCSVI engaging in a lively talk which covered a broad spectrum of the issues involved with the investigation and treatment of the condition. The Roundtable, sponsored by the CCSVI Alliance (click here), offers a comprehensive and evenhanded view of many of the hot topics surrounding CCSVI. Hearing the information coming straight from the doctors’ mouths is absolutely invaluable, and the presentation is packed with highly relevant info.

The video is quite long, about one hour and twenty minutes, and was recently edited by yours truly in my capacity as a member of the Alliance's Patient Advisory Board. It is must-see viewing for anybody interested in CCSVI, even if watching the complete presentation requires multiple sittings. (Note: Those readers who receive this blog by e-mail will need to visit www.wheelchairkamikaze.com to view the video)

Finally! Canadian Government Decides to Fund CCSVI Treatment Trials…

Image via Wikipedia

In a surprise move, the Canadian federal government has reversed its previous decision, and decided to fund CCSVI treatment trials on MS patients (click here). Just last year, government officials decided against funding such trials, citing a lack of evidence that a clear link existed between CCSVI and MS. Now, a working group of scientific advisors, after reviewing already published research in addition to the preliminary data from the seven ongoing studies funded by the MS societies of Canada and the USA, has concluded that there is enough evidence of a relationship between the vascular abnormalities collectively known as CCSVI and Multiple Sclerosis to warrant federally funded treatment trials (click here).

This is extremely welcome news to MS patients worldwide. Although treatment trials won't answer many of the scientific and medical questions surrounding the CCSVI hypothesis, such trials will determine whether catheter venoplasty, when used to open blocked veins and improve impeded bloodflow through the central nervous system of MS patients, results in an improvement of symptoms and/or a slowed progression of the disease. While academic questions such as cause and effect ultimately must and will be answered, the most pressing issue for MS patients themselves is whether or not getting treatment for CCSVI will improve their symptoms and lessen the long-term impact their potentially crippling disease.

What's of primary importance now that a mandate has been given to commence treatment trials is the design of those trials and exactly which treatment protocols will be used on the patients enrolled in them. Over the last 18 months we've learned that treating CCSVI is far less simple than was originally thought, and the physicians most experienced in the treatment of CCSVI are in unanimous agreement that the learning curve involved with perfecting the technique is steep, and the methodologies used are still a work in progress. The fact is that many of the treating physicians use quite disparate treatment protocols, and there is no clear consensus on best practices and a standardization of treatment methodology.

As CCSVI treatment has thus far been unavailable in Canada, there is an absence of Canadian physicians experienced in the treatment procedure. I trust that the scientists involved in the Canadian trials are fully aware of such issues, and that the physicians who will be performing the treatment procedures will undergo training at the hands of the experienced physicians outside of Canada who have been blazing the trail in performing what is still an experimental procedure. It's vital that these trial procedures be done using the latest and most effective techniques, as sub-optimal procedures will lead to sub-optimal results, which would be disastrous for the advancement of the science, and could easily lead to false conclusions about the effectiveness of treatment.

I would expect that the Canadian trials will not only demonstrate whether CCSVI treatment is effective, but, if it is, which symptoms are most impacted by improving venous blood flow, and which patient populations stand to most benefit from CCSVI treatment. MS is an extremely heterogeneous disease, with no two patients experiencing the malady quite the same way. A recent study (click here) by a CCSVI treatment practice in Poland found that patients most likely to benefit from CCSVI treatment are younger females (under the age of 30) with Relapsing Remitting Multiple Sclerosis, who have had the disease for relatively short amount of time and have not yet experienced severe mobility issues. Keeping in mind that the study was based on a relatively small sample size (47 patients), and the long-term effects of successful CCSVI treatment are still unknown, such data does make some sense in the context of what is known about MS pathophysiology, especially once the disease moves from its relapsing remitting form into its progressive stages.

Recent evidence has provided tantalizing clues that suggest that the progressive stages of the disease may be driven by an abnormal immune response contained entirely within the central nervous system, in a sense approximating a rogue immune system that operates separate and apart from the systemic immune system at work in the rest of the body (I'll blog about this in the near future). The implications of these findings, if correct, are profound, and would suggest that once the disease enters its progressive stages, treatments that are effective in RRMS, even CCSVI, may be rendered useless, as they do nothing to address an aberrant immune response that is contained entirely behind the blood brain barrier, operating independently and completely unto itself.

Be that as it may, the MS community on the whole should loudly applaud the Canadian government for taking the bold if belated step of federally funding vitally important CCSVI treatment trials. At the very least, such trials will pry scientific attention away from its current togmatic insistence that MS is strictly an autoimmune disease confined only to the central nervous system, and see it as a systemic problem with physical implications reaching beyond the brain and spinal cord. For far too long the autoimmune model of the disease has ruled the day, generating billions of dollars of profit as it turned the treatment of Multiple Sclerosis a hugely lucrative business, while at the same time generating tangible but limited benefits to patients suffering from the disease. Let these Canadian trials be a huge step towards a new understanding of the MS, one that will lead to its final eradication and an end to the suffering of millions of patients worldwide.

CCSVI and MS: Cause, Effect, or Neither?

Image by Getty Images via @daylife

It's now been over 18 months since the news of Dr. Zamboni's vascular theory of MS, the CCSVI hypothesis, first made its way into the consciousness of the greater Multiple Sclerosis patient population. Touched off by news reports on Canadian television channel CTV, an inferno of hope raced through MS patients worldwide, and a firestorm of controversy regarding almost every aspect of the hypothesis was ignited, a conflagration that seems to only burn more intensely with each passing week. The relatively simple CCSVI hypothesis (which postulates that blockages in the veins draining the central nervous system lead to or contribute to the MS disease process) has managed to pit physician against physician, physician against patient, and patient against patient. While the various factions duke it out, an estimated 15,000-20,000 MS sufferers have undergone CCSVI venoplasty, with a wide variety of resulting outcomes, ranging from dramatic benefit to no benefit whatsoever to, in rare cases, a worsening of disease symptoms.

Several key questions have emerged regarding CCSVI during the last year and a half, primary among them whether or not CCSVI and MS have any link whatsoever, and if so, whether the venous anomalies collectively known as CCSVI are the cause or an effect of the disease. We've seen a steadily increasing flow of CCSVI research results, providing enough conflicting data to fuel all sides of the argument. As with all things Multiple Sclerosis, CCSVI presents a complex picture, and despite evangelical believers/nonbelievers on all sides of the squabble, at present the ultimate outcome of the CCSVI conundrum is as clear as mud. Here then is a brief look at some of the issues currently being batted about, with some small attempt on my part to make some sense of it all.

My personal belief is that CCSVI and MS do indeed have a relationship, at least in some MS patients. However, I acknowledge that my opinion is based primarily on anecdotal evidence, and anecdotal evidence alone is not enough to state anything with scientific certainty. Despite the insistence of many in the CCSVI advocacy community, the link between CCSVI and MS has not yet been established with evidence that measures up to the scientific standard. On its face, the basic premise of CCSVI, that restricted blood flow through the central nervous system, caused by vascular abnormalities that are very likely congenital, slowly cause damage to the CNS over the course of decades, eventually becoming significant enough to result in a clinical diagnosis of Multiple Sclerosis, seems simple and makes perfect sense. Yet upon closer inspection, the picture is not quite so clear-cut.

There have been several very convincing studies demonstrating that venous abnormalities now known as CCSVI occur more often in MS patients, and even in patients with other neurologic diseases, than in healthy control subjects. Conversely, there have also been quite a few studies disputing this. Almost all of these studies, pro and con, have relied on noninvasive imaging techniques (Doppler ultrasound or MRV) to ascertain the presence of these abnormalities. Unfortunately, neither of these noninvasive imaging techniques has proven to be entirely accurate, though Doppler ultrasound, in the hands of a skilled and well trained technician, does appear to be the more reliable of the two techniques. Still, we have research groups reporting widely divergent findings, and some of that divergence could possibly be attributed to the relative inaccuracy of the diagnostic methods being utilized.

Complicating matters further is the fact that human venous anatomy, with a few exceptions, has been very little studied. So little, in fact, that no clear-cut definition of "normal" exists when it comes to the anatomy of the veins that drain the central nervous system. It had previously been assumed that since the veins in question had so many built-in redundancies, any blockages encountered would be easily compensated for. While the Interventional Radiologists performing the CCSVI treatment procedure are reporting that the overwhelming majority of MS patients are indeed displaying a large number of venous abnormalities, we cannot state with any certainty that a significant portion of the healthy population does not also present with such abnormalities.

What are desperately needed are trials using catheter venography to ascertain the prevalence of CNS venous abnormalities in healthy control subjects. However, there are some ethical questions involved in performing this minimally invasive procedure simply for research purposes. Although the risk is low, catheter venography, like any invasive procedure, does carry with it the potential for dangerous complications, and the prospect of exposing healthy subjects to these risks has inhibited such studies from taking place. Until it can be established beyond dispute that vascular abnormalities in the jugulars, azygos, and other veins that drain the CNS are more prevalent in MS patients than in the general population, the question of the CCSVI/MS relationship will not be put to bed.

Let's assume, though, based on the anecdotal reports, that there is a connection between CCSVI and MS. The big question then becomes whether CCSVI is the cause of the disease, or an effect of the Multiple Sclerosis disease process. Again, there is enough conflicting data to support both sides of the argument.

Those who support CCSVI as the cause of MS site several compelling reasons for their belief. One of these is that many of the abnormalities being seen in the veins of MS patients, such as anomalous membranes and fused valves, appear to be congenital in nature, that is, patients have had them since birth (click here). If these defects are congenital, and occur in greater preponderance in MS patients than the healthy population, it would seem reasonable to assume that they play a causative role in MS disease etiology. Another argument in favor of CCSVI as the cause of MS is the growing body of evidence that suggests that nervous system tissues in MS patients are damaged before the immune system comes into play (click here for one such study), findings that would seem to contradict the prevailing theory of MS, the "autoimmune theory". The autoimmune theory states that, for reasons unknown, the immune systems of MS patients go rogue and start attacking the patients' own central nervous system tissues. If some studies done within the last decade are correct, and CNS damage occurs before immune system involvement, this would apparently discredit many of the basic assumptions of the autoimmune theory, and CCSVI provides an explanation as to how this damage occurs.

While I've long held the autoimmune theory in contempt, and I'm convinced that the aberrant immune response seen in MS patients is a symptom of some larger underlying and as yet undiscovered cause, I'm not sure that cause is CCSVI. While the CCSVI hypothesis does in some ways elegantly account for some of the mysteries surrounding MS (the venocentric nature of MS lesions, the reduced volume of blood flow through MS brains, etc.), it does not account for several of the more confounding aspects of the disease. It's difficult for CCSVI to explain the geographical distribution of the MS population, which sees a far greater prevalence of MS the further away one gets from the equator (click here). Related to this geographic distribution, CCSVI also can't explain some of the migratory observations made in regard to disease prevalence (click here). When a person below the age of 15 migrates from an area of higher disease prevalence to one of lower prevalence, they take on the characteristics of their new home. When the migrant is over the age of 15, though, they retain the propensity for the disease of the area they migrated from. In other words, a person under the age of 15 migrating from Maine (high prevalence) to Florida (low prevalence) has the same low chance of getting the disease as a Florida native. However, older migrants retain the higher chance of getting the disease seen in Maine. Furthermore, children of these older migrants, born after the move south, take on the same lower chance of developing MS as children born to the native population.

Similarly, CCSVI cannot account for the existence of "MS clusters", which are small concentrations of population in which MS appears to be epidemic (click here). The most famous of these clusters is in the Faroe Islands, an island group situated between the Norwegian Sea and the North Atlantic Ocean. Prior to World War II, MS was virtually unknown among the native islanders. During World War II, the British, who have a high incidence of MS, occupied the island, and subsequent to this occupation, MS has become epidemic among the native population. Another such cluster was recently identified in a small town in Ohio, where over two dozen MS cases were discovered within a six block radius.

The geographic and migratory components of MS epidemeology, as well as the existence of MS clusters, are heavily suggestive of an environmental (infectious or toxic) element to the MS disease process, and indeed, recent studies have linked several viruses, most of them in the herpes family, to MS. Just within the last week or two, a study out of Taiwan, which looked at hundreds of thousands of subjects, found that people suffering an outbreak of shingles, a painful skin condition caused by the varicella zoster virus (which also causes chickenpox), are three times as likely to develop MS within the year as those who didn't suffer from shingles (click here). Likewise, the Epstein-Barr virus has also been cited as a possible infectious trigger of the disease, with some scientists stating that if a patient isn't infected with EBV, they won't get MS (click here).

Another potential problem with CCSVI as the cause of MS is the inflammatory patterns seen in patients afflicted with the disease. According to CCSVI theory, disrupted blood flow through the CNS creates damage and inflammation to the cells contained within, through a variety of possible mechanisms. This would lead one to expect that the longer the condition persisted, a patient's levels of inflammation would slowly increase over time, in a steady upward slope. However, in reality, RRMS patients see their greatest amount of inflammation early in the disease, during its relapsing remitting stage. Once the disease moves into the progressive stage, and RRMS turns into SPMS (normally within 10-15 years when left untreated) inflammation levels decrease dramatically. Patients with PPMS, who start out with progressive disease, very often show very little signs of CNS inflammation. As a matter of fact, this lack of inflammation, seen as enhancing lesions on MRI images, is a hallmark of progressive disease. This is why anti-inflammatory therapies such as steroids generally have little effect on patients with progressive illness.

Of course, none of this directly contradicts the idea that CCSVI may play some causative role in the disease of some MS patients, but it strongly argues against the idea that CCSVI is the primary cause of the disease.

Some compelling evidence that CCSVI may be an effect of MS has been presented by several researchers, most notably Dr. Robert Zivadinov and the researchers at the Buffalo Neuroimaging Analysis Center. Although Dr. Zivadinov's findings have been savaged by some of the most fervent "CCSVI as cause" proponents, the totality of the research done under his direction does point to the possibility that at least some of the venous abnormalities now called CCSVI are a result of the MS disease process. Although Dr. Zivadinov's opinions only recently made headlines (click here), he in fact implied them in research presented in October, 2010 at the annual ECTRIMS (European Committee on Treatment and Research in Multiple Sclerosis) conference. One paper presented at that time 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). These findings were backed up by papers presented by researchers from Beirut (click here) and Italy (click here). 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). 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).

Additionally, it would seem to me that the high rate of restenosis in patients who have undergone CCSVI treatment venoplasty could also hint that CCSVI is more an effect rather than the cause of MS. Despite the wide range of treatment methodologies being employed, patients are still experiencing a re-narrowing of their previously unblocked veins far too frequently. This has been seen even in patients who have had stents placed in their veins, only to see their veins stenosing in areas not stented. If CCSVI were an effect of the MS disease process, one would expect to see repeated restenosis of the veins as that disease process continued to impact a patient's vasculature.

So then, what conclusion can be drawn? Is CCSVI the cause of MS, an effect of the disease, or does it have no relation to Multiple Sclerosis at all? My honest belief is that the answer could be all three, depending on the individual patient.

Multiple Sclerosis is a remarkably heterogeneous disease, meaning that it impacts different patients in vastly different ways. Across the wide spectrum of MS patients, the primary symptom of the disease may be fatigue, cognitive dysfunction, muscle weakness, spasticity, eye trouble, nerve pain, or any combination thereof. Some patients can have the disease for decades and show very little physical disability, while others find themselves in a wheelchair (or worse) in less than 10 years (sometimes much less). Some patients have a great many lesions and very little disability, others have few lesions but devastating disability. Confounding the issue even more, MS comes in several different flavors, from Relapsing Remitting to Primary Progressive, and evidence suggests that the disease process at work in progressive disease may be quite different than that underlying Relapsing Remitting MS.

Given such a wide array of disease presentations, and thus the likelihood that a variety of mechanisms may be at play, it could very well turn out that CCSVI plays no role at all in the disease of some patients, a more causative role in the disease of others, and could be an effect of MS in yet another patient population. Very likely the line between cause and effect may be quite blurred, with CCSVI playing an exacerbating role in a disease that almost certainly has, in addition to a vascular component, very strong genetic and infectious components as well. The mix may be dramatically different from patient to patient, and indeed, CCSVI may be THE major factor in the disease of some patients, but play absolutely no role in the disease of others.

This may be reflected in the breakdown of outcomes reported by some of the Interventional Radiologists doing the CCSVI treatment procedure. The most widely quoted is Dr. Gary Siskin, of Albany New York, whose group has done over 700 procedures. Dr. Siskin has found that one third of his patients experience dramatic improvements, another one third experience mild improvements, and a final one third experience no improvement whatsoever. Further complicating this equation is the definition of just what constitutes a dramatic improvement. For somebody who's most disabling symptom is fatigue, a lifting of that fatigue would undoubtedly be called dramatic. For somebody more disabled, like I am, a lifting of fatigue, while certainly welcome, would hardly be defined as a dramatic improvement.

As I stated earlier, clear as mud…

Related articles

• The Rorschach test of CCSVI research (macleans.ca)
• Higher CCSVI rates with MS, but findings still unclear (ctv.ca)

Bits and Pieces: Sex Sells Edition

Image by Nick Sherman via Flickr

Note: For the many readers who receive my posts via e-mail, please be aware that embedded videos in these posts do not show up in the e-mailed version. To view the embedded videos, please visit the blog page itself by clicking on the title of the post. Thanks.

Well, I wonder if my Internet hit count will go up because the word sex appears in the title of this post. Such is the power of titillation, long known by advertisers. Funny, the word titillating is itself kind of titillating. Come to think of it, so are the words "Bits and Pieces". Anyway, on with some titillating tidbits (yet another word with titillating tendencies)…

Don't worry, I'm not about to descend into the tawdry. Not that I'm above tawdry, mind you. Back in my healthy, single days, I always believed that a little occasional debauchery did a soul some good, as long as all parties involved took part in the monkeyshines of their own free will, and no harm, emotional or physical, was done to any living thing. Eat, drink, and be merry, and all that. Life is full of uncertainties, sometimes you've gotta eat dessert first.

Unfortunately, the effects of MS and many other chronic diseases can dramatically impact the ability to partake of such shenanigans, and a few recent news items got me thinking about how sexuality is quite often a silent casualty to such illnesses, much to the detriment of those suffering from them. Sexuality is an important part of the human experience, and of all the losses meted out by disabling diseases, the effect on the sexual self may be one of the most keenly felt, yet least often talked about.

So, I submit to you the following news items, which I think shine some light on the issue …

· A new documentary film, "Scarlett Road", details the efforts of Rachel Wotton, an Australian sex worker who specializes in catering to the needs of a very specialized clientele, people with severe physical disability (click here). Among her clients is John, a severely disabled multiple sclerosis patient who relies on a chin controlled wheelchair. According to the film's website (click here), the benefits John has received have not only been emotional, but physical as well. In addition to increased self-esteem, he's regained some physical functionality that he thought was lost forever (and not just in his nether regions).

Human beings are incredibly social creatures, and the power of touch and a warm embrace are very real indeed. Loneliness is difficult enough to deal with for those lucky enough to be healthy, but for those poor souls locked in dramatically unresponsive bodies, the feeling of enforced solitude must be crushing. Though their bodies may be broken, their minds and spirits certainly are not, and for those so profoundly stricken the need for physical affection, for the exhilarating warmth of the intimate touch of another human being, for the feeling of somebody gently lying beside them, sharing a sensual embrace, must certainly be incredibly precious, its fulfillment tremendously and perhaps infinitely enriching.

Despite the supposed sophistication and enlightenment of modern societies, the severely disabled are still stigmatized and marginalized, and although lip service to their humanity is often paid, in reality far too many suffer the anguish of being a personality trapped in a useless prison of flesh and bone, their psychological and emotional needs barely even acknowledged. Some may question the morality of sex workers being paid to satisfy the needs of the severely disabled; I would question the morality of a society that forbids it, that denies the fulfillment of these most basic human wants and desires to those who need them most.

Thank you, Rachel Wotton, if for nothing else than simply caring. I wonder if there are similar services available to disabled females suffering from the same lack of physical attention?

"Scarlett Road " will be premiering at the Sydney Film Festival on June 11. Hopefully, it will soon be available for viewing outside of Australia.

Scarlet Road Video from Paradigm Pictures on Vimeo.

· A 66-year-old wheelchair dependent man with multiple sclerosis, Mr. Jim Keskeny, was kicked off a nudist cruise through the Caribbean after he injured himself while trying to use the toilet in his "accessible" cabin (click here). The man was traveling alone, and considered himself a "nudist at heart", although he hadn't previously participated in the nudist lifestyle, and decided at some point during the cruise that he didn't want to take his clothes off after all. Following his injury, the cruise line decided that he was in too debilitated a state to be traveling alone, although Mr. Keskeny was a seasoned traveler, and unceremoniously dropped him off in Mexico, leaving him to make his way back home to the states. The passenger claimed that he was perfectly able to take care of himself, and that the cruise line had simply used his accident as an excuse to get him off of the ship.

I'm embarrassed to admit that at first glance this story made me snicker. After all, the whole scenario seemed a bit absurd, a very disabled man signing up for a nudist cruise, sure to be populated with some extremely able-bodied naked people, a situation that seemed rife with all kinds of potentially (pun alert!) prickly situations and scenarios. One could easily question the man's motivations, and ridicule the almost predictable state of affairs he found himself in, but I quickly realized I was casting judgment on the man when perhaps all he was trying to do was be "normal", and satisfy some lifelong curiosities.

Putting aside all questions of infringements on the rights of the disabled and the legality of cruise line's actions, who among the afflicted doesn't yearn for some normalcy, to just once act on our wants and desires without having to account for the physical and emotional burdens wrought by bodily disability? Though taking a nudist cruise might not be everybody's cup of tea, it obviously was Mr. Keskeny's, and by God he went for it, torpedoes be damned. Certainly, his motivations for wanting to take the trip were no more or less prurient than those of his able-bodied fellow passengers, so why should the fact of his disability make any difference whatsoever? If he wanted to explore his sexuality in this manner, or simply just wanted to feel the freedom he perceived in the nudist lifestyle, more power to him. Rather than be subverted by his disability and assume the role of social outcast, Mr. Keskeny asserted his humanity and followed his heart's desire, certainly displaying some bravery in the process. Good for him.

· On another sexually related tangent, the drug sildenafil, better known as Viagra, has been shown in animal studies to reverse the course of multiple sclerosis symptoms (click here).

Upon seeing this headline, I reasoned that since Viagra works as a vasodilator, opening veins, this could play into the CCSVI scenario. Upon further investigation, though, it appears that the mechanism of action in regards to MS is the reduction of infiltration by inflammatory cells into the central nervous system. The mouse model of MS, called EAE, was used in the studies, and mice with EAE don't have blocked veins.

The fact of the matter is that EAE is a terrible model for human multiple sclerosis, and is induced by injecting the unfortunately targeted rodents with myelin proteins, provoking an allergic reaction within the animal that results in central nervous system damage. This bears little if any resemblance to the disease mechanism of the human illness, which is why so many loudly trumpeted "breakthroughs" in MS treatment on mice fail to translate into similar success stories when tried on humans. The simple fact of the matter is that mice don't get MS.

However, if Viagra does eventually prove to be beneficial in the treatment of multiple sclerosis, how ironic that a drug renowned for increasing stiffness in a certain body part might relieve a disease one of whose hallmarks is severe muscle stiffness. All I can say is that if the famous little blue pill is effective in treating multiple sclerosis, a lot of newly spry men are going to need to get their trousers altered, needing a little more room just below the waist…

Related articles

• Disabled man says he was kicked off cruise (msnbc.msn.com)

Remembering Bobby Kennedy

Image via Wikipedia

I am a man with very few heroes.

It disturbs me to see the word hero tossed around almost indiscriminately these days, as it belittles the few individuals truly deserving of the honor. Though I respect many people, some deeply, there are only a few whose words and deeds have led me to attempt, usually with pathetic results, to emulate the examples set by them. One such person is Robert F Kennedy, who was felled by an assassin's bullets late in the night of June 4, 1968, 43 years ago today.

Bobby Kennedy was by no means a perfect man, as has been well-documented by numerous tell-all books and our insatiably gossip hungry media. He was a complex individual, intelligent, introspective, and headstrong, possessed of ego and at times known to be ruthless. But he was also an idealist, a man whose thoughts, and the actions driven by them, evolved through a life that saw devastating personal tragedy. After the assassination of his brother, President John F. Kennedy, RFK went through a long dark night of the soul, only to emerge more resolute than ever to devote himself to public service and fight for his deeply held moral convictions, against societal injustice and for the weak and disenfranchised.

Robert Kennedy started his political career working in the office of Sen. Joseph McCarthy, who at the time was in the midst of his vile early 1950s anti-Communist witchhunt, which resulted in the destruction of the reputations and livelihoods of dozens of innocent victims. From those ignominious beginnings sprang a career that saw Robert Kennedy champion civil rights, advocate for the poor and marginalized, fight organized crime, and help pull the world back from the very brink of nuclear Armageddon during the Cuban Missile Crisis.

After his belated entry into the 1968 presidential race, his campaign to win the Democratic nomination gained increasing momentum, culminating with his victory in the California primary on June 4, 1968. Minutes after delivering his victory speech at the Ambassador Hotel in Los Angeles, he was shot while attempting to exit the building with his entourage. Though an assassin, Sirhan Sirhan, was named and convicted, controversy still rages over the tragic sequence of events that transpired that night. Robert Kennedy lingered for two days, and died on June 6, 1968.

Had Kennedy won the nomination, and eventually the presidency, the historical timeline would certainly have been significantly altered, probably beyond all recognition. There would have been no President Nixon, no Watergate scandal, a quicker end to the Vietnam War, and no massacre at Kent State. Without these traumas inflicted on the psyche of the United States, one can only imagine that the arc of history could very well have been much more benign than that which did ultimately become reality. The promise represented by Robert Kennedy cannot be overstated, nor can the tragedy of his loss.

Perhaps the best way to illustrate the merits of Sen. Kennedy is to let the man speak for himself. On April 4, 1968, just two months before his own assassination, Dr. Martin Luther King Jr. was assassinated in Memphis, Tennessee. On the evening of the King assassination, Bobby Kennedy was scheduled to address an inner-city audience in the heart of Indianapolis, Indiana. Knowing that his audience would be largely black, and almost certainly unaware of Dr. King's assassination, Kennedy had little time to formulate his thoughts, much less write a polished speech. Without the help of aides or speechwriters, he jotted a few notes to himself on the ride to the site of the rally, and then delivered, almost completely extemporaneously, an eloquent and profoundly emotional speech. No teleprompters, no calculations of political consequences, just intelligent and respectful words delivered from the soul. He didn't speak down to his audience, but addressed them as peers, sharing with them the anguish of having suffered the murder of a loved one. As a result, Indianapolis was one of the few American cities spared vicious riots in the wake of Dr. King's assassination.

Here is the speech Robert Kennedy delivered that night…

Rest in peace, Bobby Kennedy.

On Friends, Old and New

Image via Wikipedia

"People come and go, and forget to close the door, and leave their stains and cigarette butts trampled on the floor, and when they do… Remember me, remember me"

-Brian Eno

There are several phrases that when heard or uttered can forever change the course of a life. "You're hired", "I'm in love with you", and "I do" are a few of the more common, all imbued with the power to positively alter one's destiny. On the flipside, there's a multitude of words that, when strung together, can have a negative, even dreadful impact. Those of us dealing with serious illness have all heard variations on the same devastating words streaming from a doctor's mouth, something along the lines of, "I'm afraid you have (insert name of illness here)". From the moment those syllables are comprehended, we are suddenly singled out, set apart from the world we inhabited just moments before, the land of the well.

No matter how loved or popular the recipient of such a diagnosis may be, they've now been forced into a new and alien social strata, that of the chronically ill, an exclusive club to which nobody wants to be a member. Though friends and family offer heartfelt and genuine gestures of comfort and sympathy, there is simply no way for them to truly understand the disorientation, fear, and alienation wrought by the verdict recently rendered. The newly minted patient, even if surrounded by a crowd, is left to navigate a frightening new reality in large part alone.

Make no mistake, the support of friends and family is vital to the mental and physical well-being of a newly diagnosed patient, but that moment of diagnosis does serve as a line of demarcation between an old reality that was very likely taken for granted and a new one fraught with uncertainty. This crisis point in a person's life can test old relationships, and unexpectedly offer opportunities to build new ones.

Over the course of a lifetime, there is a natural ebb and flow of individuals entering and exiting a person's world, an ever shifting population of friends and acquaintances that inevitably changes with the passage of time. A precious few of these people take up permanent residence in the timeline of life, and transcend friend to become family. True family is defined more by love than by blood, and I consider myself blessed to count among the innumerable persons I've encountered perhaps half a dozen who I know will be constants for the whole of my life. We may not be in perpetual contact, in fact we may not talk for months at a time, and perhaps not meet in person over stretches lasting years, but I am secure in the knowledge that when push comes to shove, no matter the situation, we'll always be able to pick up just where we left off, our bonds too strong to be broken by the strains of time, distance, or circumstance.

These rare relationships, some of which have spanned decades, are cherished and acknowledged as precious, for I realize they link me not only to people that I hold dear, but also represent a tangible connection to my own past, confirmation that what came before was not merely a dream, but a series of very real experiences that I was lucky enough to share with some special individuals. Though I've only been diagnosed for eight years, at times it's hard to remember a life without illness, a time when I was blissfully ignorant of most things medical. These friends turned family, who are of course deeply sympathetic to and aware of my difficulties, look straight past the fact of my illness to the essence of who I am. To them I will always be the same old Marc, and for that I am forever grateful.

Other friendships from my healthy life have been diminished by my illness, really at no fault of the people involved. Many friendships thrive primarily on a continuing series of shared social experiences, and as my disabilities have mounted and my ability to socialize has become curtailed, the spigot that fueled many of these relationships has been turned off. Phone calls and e-mails are still occasionally exchanged, and halfhearted motions are made at making plans to get together, but they almost never actually come to fruition. That's okay, really, as without an ongoing narrative, some relationships are bound to simply stall, and eventually wither. It's all part of the rhythm of life, the natural order of things.

In this age of the Internet and social networking, it's now quite common to reestablish connections with folks who once populated your world, but were long ago got lost to the ever shifting tides of time. I've found that most of these renewed friendships at first burn brightly with shared memories and updates on current circumstances, but once that initial flame is exhausted, they again recede into a state of benign neglect. A few, though, have turned out to be very happy and lasting reunions, with people for whom I never really lost affection, but only lost touch. It is a real joy to rediscover a misplaced but valued friend, like unearthing a buried treasure.

In all honesty, though, my illness has made me somewhat reticent to pursue some of these Facebook friendships, as I sometimes think I'd rather be remembered as the youthful and healthy me locked in my old friend's memories, and recounting the details of life since my diagnosis hardly makes for a lighthearted exchange of pleasantries. Perhaps this accounts for my almost phobic relationship with Facebook, which I suppose it's time I should just get over. I'm completely open about my illness with the world at large, after all, but somehow the prospect of detailing my saga to certain individuals remains daunting. Though I feel I've handled the emotional upheaval attached to illness quite well, I suppose the pain of my reality lies not too deeply beneath my Wheelchair Kamikaze persona.

Despite the love and support of family and trusted old friends, it's been incredibly important for me to develop relationships with fellow patients, others who simply "get it". As kind and sympathetic as the well people close to us might be, they just haven't lived the situation, and thus don't have the capacity to fully gauge the true measure of being chronically and progressively ill. It's like trying to get a blind man to understand the difference between blue and orange, the complexities are beyond words.

I can't imagine how difficult it must've been for patients dealing with chronic illnesses before the advent of the Internet, how isolated and alone so many must have felt. Soon after my diagnosis I discovered some of the Internet MS forums, and in them found a haven where was able to interact with others dealing with many of the same questions, fears, and emotions that were roiling inside of me. I derived incredible comfort and relief in these virtual worlds, populated by so many who had gone through situations similar to those that now confronted me.

I initially ventured onto these forums seeking only information, never imagining that I might find real friendship in the coldness of the words of strangers on my computer screen. But soon the anonymous screen names of those participating took on the characteristics of the living, breathing human beings behind them, and the catharsis of being able to commune with fellow patients was incredibly therapeutic. Before long it felt like some of my best friends were people I'd never actually met or even talked to. When I did eventually have the opportunity to meet some forum members in person it often felt as if we'd known each other for years, unencumbered by the awkwardness of unfamiliarity that usually accompanies first encounters.

Of course, not every MS patient is going to become a close friend, but I found that the shared emotions of dealing with a serious diagnosis can often strip away much of the artifice and posturing that goes on in every day social interactions, and patient to patient we can often cut right to the chase and dispense with most of the meaningless trivialities that get in the way of establishing the bonds of true friendship. I've developed heartfelt relationships with people I might not otherwise have interacted with, folks in locations and with backgrounds that I might never have crossed paths with or given a chance to without the unfortunate commonality of a shared disease.

When eventually we take our leave of this earth, as we all must, the friends we've made and the people we've touched are perhaps the truest measure of the lives we've led. Despite the hardships imposed by disease, and the impersonal nature of the medical world we've been forced to inhabit, we must never lose sight of our essential humanity, and relish and take joy in our close friends, old and new. Even in this high-tech world of instant messaging, Facebook, and tweets, a pat on the back, some gentle words of kindness, and an earnest gesture of support still convey that most important of human sentiments, genuine affection for those we are lucky enough to call friends.

Some Comments on Comments, and Also on CCSVI

Earlier today I received the following comment from a reader, in response to my last post which dealt with the Merck Serono "kickback" lawsuit (click here):

"I find it ironic that you can talk about big pharmaceutical companies acting badly when you yourself are acting badly. Twice I have posted about my ccsvi experience, and because it was not positive you have not posted it. It has not been the answer for me and it will not be the answer for others. This site in part talked me into going for this procedure. This cost me well over $20,000 and did nothing. You are pushing this procedure and not telling the full story of its failures. I know that this will not be published as you are biased and selling this procedure just as a pharmaceutical company was selling rebif. I really thought you were different."

To be honest, at first I was somewhat taken aback by this comment, as I feel that I've always tried to present CCSVI in a rational and evenhanded manner, and have neither dissuaded or persuaded patients to undergo CCSVI treatment. If anything, I've urged caution, often to the chagrin of the fiercest CCSVI advocates, as I feel the science of CCSVI and its treatment are both very much works in progress. I also felt very sorry for the commenter, whose disappointment and rancor is obvious (please, dear readers, don't leave comments disparaging the person who wrote the above comment. Although I completely disagree with the gist of the statement, everyone is perfectly entitled to their opinion).

I then realized that the above statement affords me the opportunity to address just how comments on this blog are handled, and to state clearly and succinctly my feelings on the current state of CCSVI research and treatment.

The blogging platform I use (Google's Blogger) provides a variety of ways with which to deal with comments made on any individual post. The blogger (me) has the choice of moderating all comments (in other words, no comments can be posted without my seeing them first), moderating only comments made on older posts (such as posts more than seven days old), or not moderating comments at all (all comments are posted without my approval on all posts, regardless of when they were initially published).

When I started Wheelchair Kamikaze, I chose to not moderate any comments, as I believe strongly in free speech and welcome any and all opinions that my scribbles might elicit, both positive and negative. The only way we can truly learn and expand our minds is to listen to opposing viewpoints, and indeed many of the comments left on previous posts that did not agree with what I had written have given me much food for thought. As the popularity of this blog has grown, the amount of comments left after each post has grown with it, to the point where I am sometimes unable to address each and every comment left by my readers. I truly feel bad about this, but I do read every comment, and deeply appreciate all who take the time to contribute.

Unfortunately, about six months ago, several spammers started leaving irrelevant comments on dozens upon dozens of blog entries, hawking everything from wheelchairs to CCSVI treatment centers. As I am of the opinion that spammers are among the scum of the earth (not quite as bad as some health insurance or pharmaceutical company executives, but close), and don't want to subject my readers to such garbage, I felt compelled to start moderating all comments left on posts more than one week old. Readers are free to comment on new posts, completely unmoderated, for the first week they are published. After that, I get an e-mail notification of each pending comment, and have the option of publishing or deleting it. As a rule, I publish all comments, as long as they aren't vulgar or abusive, unless they come from spammers. The spam is quickly deleted, an action which delights me to no end.

The only drawback to this system is that occasionally the notification of a pending comment gets caught in my e-mail spam filter, and winds up in my "junk e-mail" folder. Since the junk e-mail folder usually contains nothing but (surprise!) junk, I usually don't bother checking it. Therefore, if any of you try to comment on an older post, and your comment doesn't show up after a day or so, please e-mail me at WheelchairKamikaze@gmail.com and I'll do my best to locate your wayward post. Of course, you can also try submitting the comment again, but if your first attempt got caught in my spam eater, there's a good chance your second attempt will also.

Now, on to CCSVI, a topic which only seems to be getting more controversial by the day. In recent weeks, we've seen a variety of studies released, some supporting the CCSVI hypothesis, and others refuting it. Amongst those supporting it, there have been some that argue for CCSVI as the cause of MS, and others concluding that the vascular abnormalities collectively known as CCSVI are more the result of MS, or perhaps exists as a comorbidity with the disease. Internet forums and Facebook pages devoted to CCSVI have been riven by arguments both for and against, often pitting patient against patient. Unfortunately, hyperbole often rules the day, with each side regularly making claims that simply can't be substantiated by the available science.

Meanwhile, as the scientists and patient advocates duke it out, thousands of desperate MSers are getting CCSVI treatment here in the United States and at various locations around the world. The technique used to treat CCSVI, venoplasty, is a minimally invasive procedure that involves snaking a catheter through a patient's veins to the point of blockage or narrowing, and then ballooning it open (in some increasingly rare cases a stent is used for this purpose). Although the procedure sounds simple enough, there is in fact a steep learning curve involved for the doctors performing it, and there has yet to be standards of practice agreed upon by all specialists. Some interventional radiologists use larger balloons than others, some check more veins, some use stents more frequently than others, and the "aggressiveness" of treatment varies from physician to physician.

Despite the overwhelmingly positive patient reports that flood the Internet, the results of the CCSVI treatment procedure are actually quite mixed. Many patients do indeed find lasting benefit after going through venoplasty, but as is evinced by the reader comment that prompted this post, a sizable number of patients receive no relief at all after CCSVI treatment. Many others find temporary relief, only to face the crushing disappointment of a return of their symptoms when their veins revert back to their blocked or narrowed state (a situation dubbed "restenosis"). Some treated patients have developed blood clots or scarring in their treated veins, situations which are extremely difficult to resolve, and which can effectively shut down the affected vein for good. When reading patient reports on the Internet, or viewing them on YouTube, it's very important to keep in mind that most patients who are treatment "failures" don't make videos or write testimonials. It's simply human nature to shout our triumphs from the hilltops, but to keep quiet about disappointments.

The only thing that anybody can state for sure about CCSVI at this time is very little regarding the topic can be stated for sure. While it does look like there is a correlation between abnormalities in the veins that drain the central nervous system and multiple sclerosis, the question of cause or effect is far from decided. Furthermore, the prevalence of such abnormalities in the healthy population has yet to be properly quantified. Some studies suggest that as many as 25% of the population have venous abnormalities which would qualify for CCSVI, but show absolutely no ill effect. As shocking as it may seem, the human venous system associated with the central nervous system has been so little studied that no reliable definition of "normal" actually exists. Until now, the arteries, responsible for heart attacks and stroke, have received all the attention, leaving venous anatomy largely unexplored.

Further complicating the picture is the relative high cost of the procedure. Patients traveling abroad are typically paying about $10,000 for the procedure alone, without travel expenses figured in. Patients in the US, getting treated domestically, have in large part been finding their treatment covered by private health insurance. Unfortunately, that situation seems to be changing, as one of the major private insurers has started to reject CCSVI treatment claims, and there are reports that Medicare is now also refusing to pay for the procedure. Given the high rate of restenosis, and the wide disparity in treatment outcomes, patients need to seriously consider whether waiting for both the CCSVI science and treatment procedure to mature may be in their best interest, especially if they will be paying out-of-pocket.

My personal opinion is that MS is a very complicated beast, and in fact may not be one disease at all, but a collection of related maladies that share common symptoms and diagnostic criteria. The causative factors of MS very likely differ significantly from patient to patient, and almost certainly include genetic predisposition, infectious factors, toxins, and, in some cases, vascular abnormalities. Just as none of the existing MS drugs works on every MS patient, so too the impact of CCSVI will almost certainly vary from patient to patient. For some patients, CCSVI may be THE predominant factor in their disease. In others, the condition may play no role whatsoever, even if their veins do display abnormalities (remember the high likelihood that some healthy people display similar abnormalities).

As it now stands, each patient must educate themselves as fully as possible, and honestly assess the risk/benefit equation for their own particular situation, trying their best to understand the existing realities despite the fog created by conflicting media reports and Internet hyperbole. One of the best ways to do this is to listen to the researchers exploring CCSVI, and the doctors performing the CCSVI treatment procedure. Thanks to the magic of the Internet, patients can do just that. Recently, the scientists at the Buffalo Neuroimaging Analysis Center held a town hall meeting during which they detailed the findings of their ongoing CCSVI studies. Videos of the presentations given are now available on the BNAC website (click here). The Hubbard Foundation, another organization actively researching CCSVI and organizing CCSVI treatment trials, also recently put on a patient education forum, the videos of which can be accessed (here). Both sets of videos should be required viewing for anyone interested in CCSVI.

I'll leave you with a video interview, conducted by the CCSVI Alliance, with one of the most experienced CCSVI treatment practitioners, Dr. Gary Siskin. Dr. Siskin's insights and advice are invaluable, and his sober approach to CCSVI is necessary and refreshing. As Dr. Siskin says at the end of his interview, "Anybody who says they know everything about CCSVI is probably not telling you the truth, because the level of knowledge just hasn't gotten there yet…"