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.