The Medical Industrial Complex: Sick People Required

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Living life with a chronic illness such as Multiple Sclerosis gives one an inside view of the medical establishment, a view that healthy people rarely glimpse. In the blissful ignorance of good health, modern medicine appears to be bright and shiny, a miracle machine complete with magical elixirs, futuristic technology, and a sophisticated understanding of the maladies that strike human beings. Headlines and television news anchors shout about the latest medical breakthroughs, and a stream of television commercials assure us that there are pharmaceutical remedies for everything from cancer to osteoporosis to erectile dysfunction. Once sick and thrust into the belly of the beast, though, this illusion starts to fall away, and a different reality emerges.

Although there have been some incredible advances made in our efforts to heal sick humans over the last 50 years, there are still vast swathes of patient populations whose illnesses remain poorly understood, insufficiently and ineffectively treated, and ultimately incurable. Problematically, many of these patient populations generate billions and billions of dollars for the modern medical hierarchy, a situation that sets up a paradox within our profit driven medical establishment. Cure these patients, and vast sums of money and an elaborate infrastructure would simply evaporate; keep them perpetually reliant on hyper expensive medicines and medical procedures, and reap the fruits of an unending money machine.

Before I am accused of being a conspiracy nut, let me state outright that I do not believe that there is a cabal of evil, mustache twisting, demonic connivers assembled around a huge flaming conference table, snacking on deep-fried baby’s arms while plotting to keep cures and remedies hidden and out of reach from the desperately ill. If this were the case, the solution would be fairly straightforward; simply "out" the conspirators, and the walls would come tumbling down. Rather, the problem has become incorporated into the system itself, insidious and inherent, the logical outcome of the evolution of a medical industrial establishment that has come to view sick people as consumers and horrendous illnesses as opportunities for tremendous financial gain. This system does not require people with malicious intent to keep it functioning; it only needs decent people doing their appointed jobs to the best of their abilities to keep the gears turning.

As previously stated, the past 40 or 50 years have seen some incredible medical advances, most of them in the fields of surgery and in the treatment of traumatic injuries and infectious illnesses. Organ transplants, less invasive surgical techniques, and an ever increasing understanding of human physiology have combined to put a shine on many facets of modern medicine. A patient's chances of surviving a heart attack, or avoiding having one in the first place, are much better now than in 1950. Knee injuries that in decades past would have necessitated complex and sometimes crippling surgery can now be done using arthroscopic techniques requiring only tiny incisions, with recovery times measured in a few short weeks rather than many grueling months.

The treatment of some of our most dreadful illnesses, though, have not seen such advances. Ask the average person about the chances of surviving cancer today vs. 1950, and I would expect that most would tell you that your odds of beating the disease are much better now than they were 60 years ago, a belief driven largely by the almost relentless marketing done on behalf of the medical profession. The New York Times, though, reports that "the death rate for cancer, adjusted for the size and age of the population, dropped only 5 percent from 1950 to 2005." (Click here for article). Headlines blaring about the latest advance in cancer drugs rarely mention that the studies cited often declare a cancer drug "effective" even if it increases the lifespan of the patients taking it by only a handful of weeks. The fight against some forms of cancer has indeed benefited from modern medical advances, but for many cancers, little real headway has been made.

Since the vaccine for polio was found in the mid-1950s, very few if any diseases have actually been eradicated. Instead, the trend is towards turning diseases such as diabetes, AIDS, some cancers, and multiple sclerosis into treatable chronic illnesses, their patients heavily reliant on fantastically expensive medications and interventions. The reason for this lies largely in the fact that over 70% of our medical research is carried out by pharmaceutical companies, whose primary mandate is to generate financial profit.

The job of a publicly traded pharmaceutical company CEO is to constantly drive up the price of his company's stock, not to facilitate the creation of drugs that would be of the most benefit to the patients taking them. This isn't a question of morality, but of economics. The drug companies, and those who manage them, are merely doing what every other business endeavors to do in our free-market capitalist system, to constantly increase profit. I'm all for free-market capitalism; in recorded history there has been no better economic driver and creator of wealth. Unfortunately, when applied to healthcare, in many cases good economics has led to very bad medicine. The corroding influence of big money, in addition to an environment of lax regulation, has led to some shocking abuses of the system, such as the marketing of drugs that are known to be dangerous (click here for info), and the suppression of studies whose results are unfavorable to the drug being tested (click here for info).

Over the past three decades, pharmaceutical companies have discovered that the best way to increase profit is to market "blockbuster" drugs that patients must stay on for the rest of their lives. In the case of multiple sclerosis, this has led almost all research to concentrate on compounds that alter or suppress the human immune system, based on the "autoimmune model" of the disease, which states that MS is the result of an immune system gone awry. In reality, it's becoming more and more clear that the aberrant immune response seen in MS patients is more a symptom than a cause of the disease. Some unknown agent is driving the immune system to attack the central nervous system, the latest and hottest theory being that the vascular abnormalities collectively known as CCSVI (click here for info) might be the cause.

Since the mission of pharmaceutical companies is to generate the most bang for their research bucks, they direct their research dollars to projects that have the best possibility of leading to substantial profit. This, in turn, influences the behavior of even the most well-meaning medical researchers, who, just like everybody else, need to feed their families and pay their bills, and who naturally seek to advance their careers. Thus, they are drawn to investigations that will most likely win hotly contested research dollars. That funding, the vast majority of which comes from the big pharmaceutical companies, goes almost exclusively into researching novel compounds that can be patented and remain the sole property of the company that discovers them for many profitable years.

This same dynamic inherently underfunds research seeking to eradicate diseases that have each, in effect, become multibillion dollar a year industries. This is not because of evil or malicious intent, but instead is the result of the economic engine that drives what can be called the "medical industrial complex", the misguided marriage between profit-seeking corporations and the healthcare industry, which requires a perpetual supply of sick people to keep the money flowing. This need for patients is so intense that it can sometimes lead previously untreated and relatively benign conditions to be deemed diseases that require pharmaceutical intervention, as in the case of osteopenia (click here for details).

This same drive also leaves many potentially effective but unprofitable remedies untested and relatively ignored. Drugs such as Low Dose Naltrexone (LDN) and the effects of diet and natural remedies have barely been studied for their impact on MS, simply because there is no profit to be made from them. Recently, a cheap blood pressure medication, Lisinopril, has been shown to have some promise as an MS drug. This discovery wasn't made by any run-of-the-mill research scientist, but by Dr. Jim Steinman, one of the inventors of Tysabri, a very expensive and controversial MS medication that is very effective but also carries with it the possibilities of very serious side effects. Dr. Steinman would like to see a full scale human study of the effects of Lisinopril, but says that "Lisinopril is as inexpensive as any prescription drug at this time, so pharmaceutical companies won't see any profits from financing a study" (click here for article). Thus, the drug remains unstudied in its effectiveness against MS, for now and probably forever.

It's hard to see a solution to this disheartening status quo, other than a significant increase in the government funding of medical research. Unfortunately, the trends are heading in the opposite direction, with more and more funding coming from the private sector, as public dollars become scarcer and scarcer in this age of soaring deficits and cries for smaller government.

As a patient suffering from MS, the situation is incredibly frustrating, as it's clear to me that much of the research now being done on the disease is not conducted with patient benefit as its primary underlying goal, but rather with the profit potential and market share that each patient represents as the target. The recent CCSVI controversy has brought this situation into focus for thousands of MS patients, because if relatively simple vascular surgery can indeed treat MS effectively, the multibillion dollar a year treasure chest that is MS will be wrested from the grasp of the pharmaceutical companies, whose financial influence within the medical and political sectors cannot be overstated. The medical industrial complex is a self-perpetuating entity that will not easily be shut down, the sheer force of its financial weight creating an almost irresistible momentum.

I'll let my final words on the subject be these: As a just and honorable society, please, view me first as a patient, not as a consumer. Human suffering should never be treated as a commodity, regardless of the considerable economic incentives to do so.

Whenever I Feel Afraid...

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MS is some scary shit. There's no getting around it; you can insulate yourself in medical research, armor yourself with objectivity, and shield yourself with detachment, but at its core, MS is still some scary shit. The disease itself is terrifying, the impact it has on people's lives is horrifying, and the treatments used to combat it are frightening. As much as I try to keep a lid on it, every so often the lid cracks open just a little bit, and fear comes blasting in, like pressurized water through a breach in a dam.

MS patients must live with the disconcerting knowledge that some unidentified enemy is chewing away at their nerve cells, literally eating holes in their brains. We talk about "lesions", and "myelin", and "white matter", and "gray matter", but when you strip away all of the clinical medical jargon, you're left with "holes in your brain". Our brains are who we are, the storehouse of all of our knowledge, and the repository of our personalities. They are what make us human, so in a very real way, MS threatens our very humanity. Out of sheer self-preservation, we do our best to avert our eyes from these realities, but they are our constant companions, always just a momentary lapse in vigilance away from sneaking in and slapping us hard.

The destructive potential that the disease has on the foundational elements of its victims' lives is without doubt appalling. Careers can be extinguished, relationships smashed, dreams and expectations laid to waste. At the time of diagnosis, most MS patients lead seemingly normal lives, driven to seek medical help by either the gradual or sudden onset of symptoms, which often manifest as nothing more than what initially appears to be a mere hiccup in the flow of daily routine. Soon enough though, that slight limp, that blurred vision, or that annoying numbness comes to be understood as an ominous harbinger of the possible physical cyclone to come, the implications of which, when stared at straight in the eye, can be overwhelming.

The medical procedures and treatments that come bundled with an MS diagnosis are also fraught with trepidation. I distinctly remember the jolt of fear I felt when my mind slowly deciphered the phrase "lumbar puncture" to mean "spinal tap". Although I'm not particularly claustrophobic, I know many MS patients for whom the idea of being stuck in the confines of an MRI machine for 90 minutes is panic inducing. The drugs offered to us have side effect profiles that sometimes seem worse than the disease itself. Who among us relishes the idea of having the intricate workings of their immune system, that poorly understood and delicately balanced product of millions of years of evolution, fundamentally altered by chemical compounds whose mechanisms are not fully comprehended even by those who invented them.

How then, does one not collapse quaking under the fear factor of Multiple Sclerosis? Of course, each of us is reacts differently, and we all cope in our own unique way. Some go into deep denial, preferring to simply make-believe that everything is okay. Others, like me, choose to go toe to toe with the thing, and immerse themselves in the research and realities of the disease, sometimes obsessively so.

We all eventually learn to take it day by day, often with a large dose of gallows humor thrown in. Most of the fellow MS patients that I've met are a pretty funny lot, whistling past the graveyard determined to have a good laugh at the expense of the disease, raising a sharp edged middle finger to the illness and the universe that provided it. Some find solace in religion, others turn away from it. Mostly we soldier on, unwilling members of a secret society whose personal rituals and behaviors remain unknowable to outsiders, no matter how well-meaning they might be. We adapt, sometimes on a daily basis, to the changing circumstances within, subtle changes that aren't so subtle to those going through them but often seem maddeningly invisible to those on the outside looking in.

Thankfully, I've found that in almost all things MS, the anticipation is far worse than the reality turns out to be. That spinal tap, the prospect of which made me lightheaded with fear, was really no big deal. I know there are others who disagree, who have had a hard time with their lumbar punctures, but for whatever reason, the procedure hardly fazes me. Not that I'd recommend one as a recreational activity, but I'd rather have a spinal tap than dental work.

The prospect of abandoning my career filled me with dread, but when the moment finally came, the overwhelming feeling was that of relief, and the sudden freedom from the daily grind allowed me to rediscover myself, and tap into talents and parts of my personality that had long lain dormant and neglected.

If I'd been told 10 years ago that within a decade I'd be forced to rely on a wheelchair, I quite honestly might have said that I'd prefer suicide. I put off actually getting the contraption far beyond the point that I needed one, and when the day came that it was delivered and sitting in my living room, I sat alone looking at it for quite some time, mulling my new normal with a mixture of defeat and resentment. But the infernal chair turned out to be liberating, my ticket back into the world, a transformational vessel that changed my perceptions of myself and my predicament, and allowed me to pursue creative passions that I thought the disease had stolen for good. And, much to my surprise, driving the thing turned out to be (dare I say it) fun, whizzing past startled pedestrians on the streets of New York the perfect outlet for the naughty five-year-old that was cooped up inside me, bound by the constraints of adulthood for far too long.

When I was a kid, I was an anxious and neurotic little boy, and my mom would often sing me a song from "The King and I" that went like this: "Whenever I feel afraid, I hold my head erect, and whistle a happy tune, so no one will suspect, I'm afraid". Mom had her own troubles and reasons to be afraid, but she too soldiered on. Sometimes, the only way to be brave is to act brave. MS is some scary shit, and fear might as well be listed as one of its symptoms. But fear can be conquered, and every day, in the MS patients I know online and in real life, I see a quiet courage that is constantly put to the test but rarely wavers. In the end, we live each day as best we can, MS and the fear that comes with it be damned.

Comments on April 14 CCSVI Live Web Forum

On Wednesday, April 14, a forum on the topic of CCSVI (Cerebrospinal Venous Insufficiency) was webcast live from the American Academy of Neurology conference in Toronto. To view a replay of the webcast, click here. The program ran approximately 110 minutes, and surely could have gone much longer if time allowed. Although much information was covered, the topic of CCSVI has generated so much interest, and has such great potential to hugely impact the entire MS community, that I was left wanting more. For patients relatively unfamiliar with the topic of CCSVI, the forum served as a very good introduction, but for those of us who have been following the story in detail, some of the more pressing questions were left unaddressed. The event was sponsored by the National Multiple Sclerosis Society, who have posted good summary of the event on their website (click here for summary).

The forum panel included Dr. Paolo Zamboni, the father of the CCSVI theory; Dr. Robert Zivadanov, who is heading up the CCSVI studies at the University at Buffalo; Dr. Andrew Common, an interventional radiologist from the University of Toronto; and Dr. Aaron Miller, who heads up the Mount Sinai Hospital MS Center in New York.

The doctors each took their turns giving their own presentations, and then fielded questions from both the live audience and folks watching on the Internet. Rather than give a blow-by-blow account of the forum, I'll summarize the general gist of what was said, and then chime in with my own opinions.

Although, for the most part, the forum was not contentious, it was clear that CCSVI remains a controversial topic, and that much of the neurologic community remains dubious, at best. Dr. Zamboni and Dr. Zivadanov both presented compelling evidence in favor of the CCSVI, but both stressed the necessity of further scientifically sound trials, and urged patients not to undergo the "Liberation Procedure" outside of official study protocols. In other words, they did their best to discourage patients from becoming CCSVI tourists, traveling to distant lands in search of treatment.

Both doctors stressed that the research must be carried out with patient safety at the forefront, and discouraged the use of stents until more is learned about their efficacy and safety when used in the jugular and azygos veins. Dr. Zamboni even went so far as to say that in many cases he'd recommend traditional "open neck" surgery before resorting to stents.

The forum also made it abundantly clear that the noninvasive imaging techniques currently being used to detect CCSVI in MS patients leave much to be desired. Although Doppler sonography yields more accurate results than MRV imaging, the accuracy of the test is very much dependent on the expertise of the individual sonographer. The gold standard of CCSVI detection is the traditional catheter venogram, which involves threading a catheter through the patient’s vascular system and into the jugular and azygous veins. This method also has the advantage that an intervention can be done (such as balloon angioplasty) during the procedure.

Dr. Miller, a noted neurologist, seemed skeptical of the theory but at least open-minded, calling the early results "surprising and intriguing ". He did stress the efficacy of the currently available MS treatments, and that new, more effective treatments are on the horizon. Of course, all of these treatments are either immunomodulating or immunosuppressive, and do nothing to address the still undiscovered cause (or causes) of Multiple Sclerosis. I've previously voiced my opinion that these therapies treat a symptom of the illness rather than the disease itself, so I won't expound on that here. Dr. Miller agreed that CCSVI certainly deserves further study, but didn't seem to be bursting with enthusiasm.

Dr. Common, the interventional radiologist, talked about the relative safety of the balloon angioplasty procedure, though he had never done a "Liberation Procedure" himself. Like the other doctors, he urged that patients not rush to have the treatment done by just any physician willing to do it, as successfully opening up venous blockages takes considerable skill and experience.

He also talked about the fact that the venous system is very adaptable, and that the actual anatomy of the CNS venous system can differ greatly from patient to patient. When blockages occur, such as are seen in CCSVI, a system of "collateral veins" develops in the body's attempt to compensate for the blockage. These collaterals are commonly seen in the venogram's of CCSVI patients, and according to the CCSVI theory are inadequate in their ability to handle the blood flow needs of the patient. However, this opinion has been disputed. In actuality the CNS venous system has been little studied, and there's no general consensus on what "normal" looks like.

Dr. Zamboni and Dr. Zivadanov both speak in heavily accented English (especially so for Zamboni), making some of what they said difficult to understand. It would be great if a written transcript of the event were posted by the NMSS.

Dr. Zamboni expressed his feelings that although he agreed that patients only undergo intervention in clinical trial settings, patients experiencing very aggressive disease should be allowed to undergo the Liberation Procedure on a compassionate basis. I certainly second that emotion.

I found the forum to be extremely interesting, though very little new information on CCSVI was disclosed. Dr. Zivadanov did present a more detailed breakdown of the 500 patient imaging study results that were first released in February (click here for a report on those results), but the information that was provided was difficult to understand in the relatively short amount of time allocated to present it. I'm looking forward to reading more on this, although Dr. Zivadanov did say that the results were likely skewed by the imperfect imaging techniques used.

Having undergone an unsuccessful Liberation Procedure myself (in that blockages were found but were unable to be opened), I do agree that patients should be very wary of spending large sums of money to travel to distant lands for "liberation". I understand the desperation that many patients feel that leads them to go on such pursuits, but the current procedures used clearly need refinement, and new devices (such as stents specifically designed for use in veins) need to be developed. The study of CCSVI is still in its infancy, and even if CCSVI proves to be THE primary cause of multiple sclerosis, there is still a tremendous amount to be learned about the exact impact of CNS venous insufficiency, and how to best remedy it.

An unfortunate example of the reasons to not seek long-distance liberation is the very next patient who underwent the procedure in the same facility that I did, who traveled to New York from Europe for treatment. Although the procedure was initially successful, a few days after the patient arrived back home in Europe, her veins restenosed, and that patient is currently seeking treatment closer to home, having spent many thousands of dollars and endured the rigors of international travel for very little benefit.

Dr. Zamboni found that 50% of the patients he performed interventions on experienced restenosis within a year, and required further intervention. Because of the uncertain outcome of these procedures, I believe it's very important that patients be treated locally, as even after successful treatment, patients require close follow-up, especially in the weeks directly after undergoing liberation.

Restenosis rates are lower when stents are used (although not entirely eliminated), but the stents currently available were all designed for use in coronary arteries, whose anatomy differs tremendously from that of veins. The risks involved with their use include stent migration (which would inevitably lead to the stents being flushed directly into the heart), and stent fracture and failure due to the stresses imposed on them over years of undergoing the bending, twisting, and torque they would experience when implanted in jugular veins.

After doing much research, during which I found opinions ranging from "the stents are virtually indestructible" to "the stents are guaranteed to fail within 10 years", my personal choice was to forgo the use of stents for now, even though stenting would have likely opened up my blocked jugular, and wait for more refined devices to be developed. As I wrestling with this decision, the point became moot, as the doctor who performed my procedure has temporarily ceased doing liberations, in preparation for a pilot study to be started sometime early this summer.

I share the frustrations of the hundreds of thousands of MS patients chomping at the bit wanting an immediate fix, but often discretion is the better part of valor. The CCSVI theory is straightforward enough that its validity should be able to be proven one way or the other rather quickly, and if it does indeed prove valid, procedures will be developed to safely and effectively combat it. It appears that upcoming trials will all use balloon angioplasty, and not stents, to investigate the efficacy of opening up the blocked veins of MS patients, due to safety concerns.

As do many reading this, I hear the MS clock ticking louder and more menacingly with each passing day, as my disease and disability progress. It's almost impossible to take a truly objective view of the unfolding CCSVI saga when your life is riding on its outcome, but it's vital to not let desperation rule the day, and thus open yourself up to those who would take advantage of the desperate by providing unproven and possibly dangerous services at very high prices. Expect to see more and more of these types crawling out of the woodwork, as the medical techniques used are relatively common, but the expertise needed to pull off a successful intervention is not.

Naturally, I wish that my Liberation Procedure had been successful, and the fact that it wasn't feels like a kick in the groin, but I hope at the very least my experiences might serve as a cautionary tale for fellow patients who feel compelled to take desperate measures. To paraphrase Winston Churchill, when it comes to the study and understanding of CCSVI, and its place in the treatment of MS, we are not at the end, or even at the beginning of the end, but we are perhaps at the end of the beginning.

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• Be cautious about MS, blocked veins link, doctor says (ctv.ca)

In Praise of Cool Canes (and Where to Find Them, at a Discount)

I have a confession to make. I kind of have a fetish for canes. I can't help it, I have some weird genetic trait that forces me to start collecting things that pique my interest. This compulsion to collect has led me to possess way too many antique wristwatches, vintage New York travel books, old cameras, memorabilia from the 1964 world's fair, antique New York City postcards, aged tie clips, and a whole bunch of other stuff. Before I got sick, I had more pairs of shoes than my wife, and she's no slouch in the shoe department.

As my disability has progressed, I've been faced with having to accept the need for an ever evolving series assistive devices, most of which I resisted for as long as possible. With dogged determination, I insisted on struggling until I was way beyond the point where the use of an assistive device was a choice. I waited until they became absolute necessities.

In retrospect, I realize how asinine this stubbornness was, although I also realize it's only natural to harbor the mistaken notion that you’re "giving in" to the disease by using a brace, cane, or wheelchair. I suppose it's a form of denial. Despite a gait that made Quasimodo look like Fred Astaire, as long as I didn't need any "assistance", I must not be doing that badly. The result of this foolishness was that I often wound up frustrated and angry, and made things more difficult on myself, which in turn only made me feel worse about my condition. Once I grudgingly accepted the need for some assistance, life started to become easier. The best example of this is that I just about became a shut in before I agreed to get a power wheelchair, the device that once again opened up the world to me and led me to discover my inner "Wheelchair Kamikaze", and to start this blog.

One of the tools I steadfastly resisted using for way too long was a cane. At some point in my MS journey, I'd been given a standard medical supply store cane, a hideous and bulky contraption of gray metal tubing and ugly rubber appendages. I tried it once in my apartment, took a gander of myself in the mirror, and then relegated it to its permanent home in the back of the hall closet. No way was I going to be seen in public using an apparatus as hideous as that. I'd stick to limiting my mobility to a range of about 50 feet rather than suffer the indignity of using such a beastly piece of equipment.

Soon enough, though, it became clear that I absolutely needed a cane, when I couldn't even make it around my apartment unassisted. I figured if I had to have a cane, I might as well have one that I liked, so I started searching the Internet for acceptable candidates that I wouldn't be embarrassed to be seen with. I soon found there are quite a few Internet cane stores, offering a wide variety of styles. Who knew?

After agonizing over the choice, I placed an order with one of these Internet cane emporiums. It was a nice enough dark wood stick, and I did find that I wasn't mortified to be seen using it, but the "collector" spark in me had been lit. I started searching high and low across the Internet for the most interesting canes I could find.

During a search of eBay, I came across the products of a man named Jerry, who imports beautiful canes made of exotic woods from Costa Rica. The canes come in a wide variety of styles, and many have handles that are hand carved into the shapes of all kinds of beasts and other figurines. Not only were the canes striking, but they were cheaper than the much plainer items sold in other places on the Internet.

I ordered my first cane from Jerry (who is eBay name is costaricatreasurehouse) with low expectations, figuring that for the price the cane must be of shoddy construction, or have some other fatal flaws. When it arrived, I was happy to find that it was of extremely high quality, and was actually quite artful. I've since ordered several more canes from Jerry, my favorite being one with a handle in the shape of a cobra, complete with fangs and forked tongue. It's a real attention grabber, and people comment on it constantly. Little boys especially seem fascinated by it.

I recently wrote Jerry a note telling him of my Wheelchair Kamikaze blog, and he agreed to offer a 10% discount to anybody who buys one of his canes from eBay (click here to go to his eBay store) and mentions "Wheelchair Kamikaze" in their correspondence with him. The offer is good on all of the canes he sells, except for ones that are already discounted. I'm really hoping this arrangement works out, because it seems to be a classic "win-win", in that it will generate more business for Jerry, and mobility challenged readers of this site will get a discount on some of the nicest canes I've come across.

Here's just a small sample of some of the canes Costa Rica Treasure House offers...

Important New Canadian TV Segment on CCSVI

Image by Kevo89 via Flickr

CTV, the Canadian television network, has produced a very significant follow-up segment (click here) to their original piece on CCSVI (click here), which aired back in November. The original piece was largely responsible for the frenzy over CCSVI that has gripped the MS population, and this new piece is a worthy successor.

This well produced 22 minute segment focuses on the battle between MS patients demanding action be taken regarding CCSVI, and the mainstream medical establishment’s resistance to taking such action. Featured in the piece are profiles of patients who have undergone the Liberation Procedure to varying degrees of benefit, and interviews with some of the vascular physicians who have started to recognize the possible importance of treating MS patients who have abnormal venous anatomy.

Dr. Mark Freedman, one of Canada's foremost MS neurologists, is on hand to offer the arguments against taking aggressive action to investigate CCSVI, and although the points he makes are theoretically sound, in the face of the mounting (albeit so far mostly anecdotal) evidence, seem hopelessly behind the curve. Although I don't think he comes off very well here, I would like to point out that Dr. Freedman has previously done some groundbreaking MS research, including using stem cells to treat MS, so his strident resistance to the idea of CCSVI is somewhat puzzling, and certainly distressing. If doctors of his caliber were to get behind research into CCSVI, the road to authoritative answers would be that much shorter.

Clearly, the vast implications that CCSVI has on the hundreds of thousands of patients suffering the quite literally crippling effects of MS demand that the scientific community take immediate notice and endeavor with much haste to either prove or disprove the theory. Given that the CCSVI hypothesis itself is fairly straightforward (although with further study I expect it will probably prove to have its complications), with proper funding it shouldn't be very difficult to launch definitive studies quickly and with scientific integrity.

This new segment also introduces us to Austrian physician Dr. Franz Schelling, who first picked up on the link between vascular abnormalities and MS in 1980, and has spent the better part of the last 30 years trying in vain to get the medical world to listen. He learned of Dr. Zamboni's initial work on CCSVI through the Internet, and initially contacted him with information gleaned from Google.

The CCSVI story, however it turns out, demonstrates both the power of the Internet, and the massive importance of well-informed patients steadfastly advocating for themselves and their fellow MSers.

Power to the people, right on...

I'd like to remind everybody watching this piece that despite the enthusiasm for CCSVI on the part of its producers that it clearly reflects, an enthusiasm shared by a growing number of patients (myself included), CCSVI still resides in the realm of theory rather than fact, so we must try to temper our fervent hopes with at least a modicum of healthy skepticism.

That said, I sure wish my Liberation Procedure had been successful in opening my blocked jugular. Oh well, if at first you don't succeed...

CCSVI Live Web Forum April 14

A few days ago, I received this notice from the National Multiple Sclerosis Society:

On April 14, 12 p.m. ET the National Multiple Sclerosis Society and the American Academy of Neurology (AAN) will hold a live 90-minute Web forum for journalists and the general public on the topic of chronic cerebrospinal venous insufficiency (CCSVI) and what it could mean to people living with multiple sclerosis. The event will cover what is currently known about CCSVI and what yet needs to be determined in order to establish what its relationship to the MS disease process might be and whether surgical intervention can improve the disease course. The live Web forum will feature the following panel:

• Dr. Paolo Zamboni, Director, Vascular Diseases Center, University of Ferrara, Italy
• Dr. Robert Zivadinov, Associate Professor of Neurology at the University at Buffalo, State University of New York
• Dr. Andrew Common, Radiologist in Chief at St. Michaels Hospital, University of Toronto, Ontario, CA
• Dr. Aaron Miller, Professor of Neurology and Director of the MS Center at Mount Sinai, New York, member of the AAN Board of Directors, Chief Medical Officer of the National MS Society

Register now online (12 p.m. ET April 14) and ensure your system will support the live Web forum player. Questions for the panelists can be submitted online in advance of the live Web forum through Facebook or Twitter, or in real time through the live Web forum player. The recorded webcast will be available online after the event for those who are unable to attend.

For those outside of the United States, please click here to determine the correct time that the event will be taking place in your part of the world. In the "location" box, choose a city on the United States’ East Coast, such as New York or Boston.

Just a few editorial comments, if I may (hey, it's my party and I'll opine if I want to).

I expect this will be a very informative session, and 90 minutes should be enough time to cover most of the issues and questions regarding CCSVI. I urge everyone interested in the topic of CCSVI (and that should be everyone with MS, or who loves someone with MS) to tune in to this webcast, and to participate, if possible, by submitting some intelligent, probing questions to be addressed by the assembled panel.

On nearly all of the MS forums, it's fashionable to bash the NMSS as being too conservative and too beholden to the big pharmaceutical companies to effect any real change in the MS paradigm. The perception is that, for its own self-preservation, the NMSS is averse to funding or promoting any research that threatens traditional MS dogma.

Some of this criticism is deserved, but some is a bit hyperbolic. As with many MS patients, my warning bells go off when I see that the makers of the standard MS pharmaceutical therapies (Big Pharma) are major funders of the National Multiple Sclerosis Society. It certainly does seem that such funding sets the Society up for some major conflict of interest issues when it comes to looking at alternative MS therapies. Yet the NMSS does fund a myriad of research endeavors (click here), many of which are quite forward thinking and have nothing to do with the current crop of MS medicines.

Like many other patients, I was disturbed by the NMSS's initial response to CCSVI, which was barely discernible, and then initially unduly negative. Also like many others, I do feel that the Society should be taking a much more aggressive stance when it comes to funding and initiating research into this potentially paradigm shifting way of looking at the disease.

I must say, though, that by sponsoring this event, which will take place in conjunction with the annual American Academy of Neurology conference (a yearly meeting of the best minds in the neurology, filled with presentations of a wide range of research findings, and considered the most important yearly conference to the neurologic community) the NMSS is doing the MS community a great service. The inclusion of Dr. Zamboni and Dr. Zavadinov, two of the most fervent proponents of CCSVI, indicate that this shouldn't be a smoke and mirrors presentation designed to denigrate the CCSVI theory. I have high hopes that this forum will provide much pertinent information for all of the MS patients currently scrambling to cut through the haze of near hysteria and misinformation that has clouded many of the Internet MS forums regarding CCSVI.

I spoke with one of the higher-ups at the Society's national headquarters last week, and in the course of our conversation she told me quite emotionally that she and everyone she works with would gladly give up their jobs to find the cure for MS. Cynic that I am, I acknowledge that's just what a person in that position should say, but my gut feeling was that the person on the other end of the line was speaking from the heart, and genuinely felt the tremendous burden of the destructive force that MS has on so many good people.

Let's hope that this forum is an indication that the NMSS will increasingly bring to bear its considerable firepower on the investigation of CCSVI, and thus bring us that much closer to the answers we all seek.

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Madder Music, Stronger Wine

"I cried for madder music and for stronger wine"- Ernest Christopher Dowson

A few months ago, I received an e-mail from a very old and dear friend of mine, a guy I first knew from the days I spent as the lead singer of a punk rock band in Boston, back in the mid-1980s. He was a guitar player in the band, and along with the e-mail came a series of photos of me taken by a mutual friend, sometime in 1986 or 1987, best that I can figure. I have a kind of hazy recollection that these pictures were shot during some all night party, but I'm really not sure. Regardless, seeing them set off a mixed up jumble of emotions and feelings as I stared at images of a young me who had no way of knowing what the coming years would bring.

Portraits of the Kamikaze as a young man . Click above for larger image .

My first reaction to seeing the photos was, "Gadzooks, was I skinny!" Of course, I do remember that I was a skinny guy, but time did a pretty good job of making me forget just how skinny I was. Good thing I didn't stand up and turn sideways in those pictures, or I would've been invisible. I think I was the first "stealth" human...

After I got over the skinny shock, I started contemplating the huge gap between what I'd expected of the coming years, and how things actually went. The preview clip that ran in my head back then bore little resemblance to the actual movie that eventually played out. I honestly believed I'd be a rock star, or, failing that, a famous novelist or maybe even an actor. Of course, in order to be a famous novelist or actor one must at least make an attempt to write or act, petty details which I conveniently chose to ignore, but that didn't phase me. I was certain that destiny had great things in store for me, and that I needn't bother myself with making much of an effort to do anything, that it would all simply fall into place. I think the expression "had his head up his ass" pretty much sums it up.

I certainly never in my wildest nightmares imagined that I'd be dealing with a chronic degenerative nervous system disorder at age 46, the disease relentlessly whacking away at me, taking no prisoners and showing no mercy. Now, looking at pictures of me two decades past, from the unexpected vantage point of a wheelchair, I felt overwhelmed with the desire to somehow reach back through time to deliver some measure of wisdom to that skinny kid, to make him understand just how precious and fleeting everything he was taking for granted really was.

Back then I was nobody's angel, and got into more than my share of shenanigans, but never at anybody else's expense, if I could help it. I'm sure I wronged some people along the way, but even at my wildest I tried to be a good guy. In fact, looking back, I don't regret anything that I ever actually did, but I do regret so many of the things I didn't do. I was so caught up in my hipster brew of existential angst and bohemian brooding that I never realized just how much fun I could be having. For a few years there, it was as if life was a never-ending series of parties. I worked as little as possible (just enough to cover rent and food), spent more time in bars and clubs playing pool and playing gigs than I did in my own bedroom, and inhabited a subculture that operated for the most part completely under the radar of mainstream society.

Instead of reveling in those days of counterculture freedom, I went out of my way looking for reasons to be miserable. Now, 23 years later, I can hardly even remember the sources of all of that misery and pain, and in reality most were mere trifles, bumps along the road that I managed to magnify into perceived catastrophes. I was a slave to my emotions, completely oblivious to the fact that our emotions are born of us, not we of them, and that we have within us the power to harness our emotions and thus create our own realities.

Most of all, I'd like to scream at my young self to live life "con mucho gusto", to not let fear and insecurity hold you back from experiencing all the pleasures, surprises, and ecstasies that this brief stay on Earth has to offer. The power and majesty of youth lies in the infinite possibilities of the road about to be embarked upon, a path defined by our own decisions and, very often, by sheer luck, both good and bad. How we choose to characterize what happens to us is what separates success from failure, triumph from disaster. It is the length and breadth of those experiences that make up the vivid tapestry of a life, and all too often our fear of the negative can impede our experiencing the positive; the walls we erect to keep out the hurt can also serve to hold back the wonderful.

All but the most blessed of lives are filled to the brim with things that just plain suck. Heartbreak sucks, financial problems suck, betrayal sucks, unfulfilled dreams suck, the compromises we make just to get through each day sucks. People dying sucks, losing sucks, and getting MS sucks. I don't even have the words to describe how just hard getting MS sucks. But we must not get stuck in the suck, lest we lose the ability to appreciate of all the good that still surrounds us, from the love of those held dear to the simple pleasures of a favorite lyric or the occasional tranquility of solitude.

All of us, sick or well, must leave ourselves open to madder music and stronger wine, to cry out for it, to exult in the knowledge that despite all of the hurt we've experienced and all of the burdens we've been made to bear, we have it within ourselves to summon forth joy, to make the conscious choices that allow us to transcend the bonds of illness and sheer misfortune, to triumph in spirit if not in body. There are days when the climb is too steep, when the path is temporarily impassible, and it's okay to sometimes wallow, to allow the occasional fit of self-pity. But what I didn't see as a young man was that the key to contentment lies not in the external but in the internal, and that circumstances be damned, happiness comes to those who choose to be happy, who can find joy not because of their station in life but in spite of it.

Oblivious to the fact that 20 years hence I'd be struck with an illness that insists on limitations, I conjured up limitations of my own. Such is the folly of youth, but all too often I see in my grown-up friends and family that same predilection for self defeat. I suppose each must learn their lessons in their own time, but if my illness can serve any purpose, I'd like it to impart this lesson on those who've come to know me:

Madder Music, Stronger Wine. Bring it on...

MS Study Blatantly Driven by Financial Concerns, Not Patient Welfare

Image by DavidDMuir via Flickr

This is the kind of thing that really gets me pig biting mad. The beneficent overseers of Biogen, makers of Tysabri, announced the commencement of a study (click here for details) that will test the effectiveness of its blockbuster drug vs. two rival medicines.

The study, which will involve 1800 people in 27 countries (wonder how much that will cost?) will pit Tysabri against Rebif and Copaxone, two drugs that have already been shown to be less effective than Tysabri in reducing relapse rates and the appearance of enhancing lesions on MRI studies.

According to the press release, "A significant number of MS patients continue to experience clinical relapses and disease progression despite treatment with disease-modifying therapies such as Copaxone and Rebif. The SURPASS study, a large, well-controlled comparative trial of MS treatments, will evaluate switching to TYSABRI versus staying on or switching between Copaxone and Rebif and determine whether early use of TYSABRI in the treatment algorithm ultimately leads to better outcomes".

In plain English, the study will prove that Tysabri is more effective than Copaxone and Rebif, which is something that we already know (previous studies have shown Tysabri to be about twice as effective as the other two drugs), in the expectation that these results will lead neurologists to prescribe copious amounts of Tysabri to their patients earlier in their disease course. Of course, I'm sure the study results will skirt around the fact that neither Rebif nor Copaxone have potentially deadly side effects, while Tysabri has been linked to the deadly brain infection PML, the danger of which appears to increase with the length of time that Tysabri therapy is continued.

Rebif and Copaxone are immunomodulators, which leave the patient’s immune system intact, and try to redirect it from attacking the patient's own nervous system. There side effect profiles are relatively benign; Rebif leaves some of its users experiencing flulike symptoms, and Copaxone can sometimes induce a short but frightening allergic reaction after it is injected. Tysabri, on the other hand, is a targeted immunosuppressant, profoundly affecting the workings of the human immune system. Granted, the incidence of PML is small, but comparing Tysabri to Rebif and Copaxone is like comparing a howitzer to a handgun.

Please don't get me wrong, Tysabri has been an extremely effective drug that has benefited many, many patients, some of whom will testify that Tysabri dramatically changed their lives for the better. I am not "anti-Tysabri", and in fact, in the fall of 2006 I was on Tysabri, but received no benefit from the drug. My point here is that conducting this massively expensive study will do nothing to advance our understanding of Multiple Sclerosis, nor bring a cure anywhere closer to fruition. This is merely a marketing ploy, an attempt by Biogen to take a bite out of the market shares of Rebif and Copaxone. Might these research funds not be better spent in, say, actually trying to find the cause of Multiple Sclerosis, or to at least develop more effective drugs with less potentially deadly side effects? Apparently not, as it will be more cost-effective for Biogen to simply prove that which has already been proven for PR purposes, rather than do some actual, groundbreaking scientific research.

The obsession with suppressing the immune system of MS patients must stop. I've said this before, I'll say it again, and I'll keep saying it until the jolly men in the crisp white coats throw a net over my head and drag me away to a rubber room, but an aberrant immune system is a symptom of the disease, not the cause of Multiple Sclerosis. Treating MS by suppressing the immune system is almost like treating a broken leg with painkillers. Yes, the symptoms subside, but the underlying cause of those symptoms is left entirely unaddressed. The current assortment of MS pharmaceuticals have definitely improved the lives of countless MS patients, and I am certainly not anti-MS drug. Lord knows, I've been on most of them. Unlike painkillers treating a broken leg, the MS drugs do significantly alter a patient's prognosis for the better, but they do nothing to combat the as yet undiscovered cause of Multiple Sclerosis. I find it incredibly frustrating that billions of dollars are being spent developing drugs to treat MS without actually attacking the disease at its core.

It's high time for neurologists and MS researchers to end of their love affair with the autoimmune theory. There is mounting evidence that the immune response that is now thought to be the cause of MS is actually a secondary phenomenon, and that there is an unknown mechanism killing nerve cells well before the immune system gets involved. A recent study (click here for the abstract) by an Australian MS pathologist and his colleagues examined autopsy brain tissue of 15 deceased MS patients, and found that nerve cell death precedes the involvement of the immune system, which appears to be activated by the damage that some unknown entity is doing to brain and spinal cord tissue (click here for an analysis of this study, provided by The Accelerated Cure Project).

We don't know what nasty process is killing off the oligodendrocytes of MS patients, but studies like the one above show that it most likely is not the patient's own immune system. The cause could be CCSVI (click here for more info), it could be infectious, it could be genetic, or it could be a combination of factors coming together to form a deadly storm of brain cell toxicity. We'll never know, though, as long as research monies are spent to benefit pharmaceutical companies rather than the patients who are beholden to their products.

I think a few of my brain cells just exploded while I was writing this post. Maybe the real cause of MS is the asinine research that is purportedly being done to help patients, but is really designed to line the coffers of the companies conducting that research with cold, hard cash.

Ugh.

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• FDA warns of brain risks with frequent Tysabri use (seattletimes.nwsource.com)

To the Real Heroes...

Image via Wikipedia

I've been surprised, flattered, and humbled by the tremendous response that my recent writings about my "Adventures in CCSVI Land" have elicited. I'm incredibly grateful to everybody who took the time to leave their extraordinarily gracious comments on my posts, or to send me personal e-mails filled with hope and encouragement. The fact that I might serve as an inspiration to anybody seems to me to be the greatest gift in the universe a person could be given, and to all who have taken the time to express such sentiments, I offer my deepest gratitude.

Some kind folks have even used the word "hero" in their correspondences with me. As much as I'd love to have a big "S" emblazoned on my chest, I feel compelled to say that the word hero should be reserved for those who display incredible valor, and who choose to put themselves at risk for the sake of others.

The reality of my situation is that I'm just a guy desperately trying to save his own ass. I've found myself caught up in a raging river, heading swiftly towards a giant waterfall. I'm grasping for whatever handhold I might find, in a frantic effort at self preservation. A hero would be the person who jumped into the river to try to save me, despite the very real danger that they themselves might too be swept over the falls. I had no choice in the matter; real heroes must make the conscious decision to suspend their own survival instincts for the sake of someone else's well being.

Although I'm not a hero, I do live with one. My wife Karen displays, each and every day, the quiet bravery and steadfastness that truly define the word. I was diagnosed just one year after we were married, and in the seven years since, Karen has quite literally been by my side through innumerable treatment sessions and doctors conferences, and suffered with me the long series of raised hopes and shattering disappointments that have defined the course of my disease. Without her, I very well may have checked out a long time ago. I'm stuck with myself and my situation, forced to experience the slow withering away of the "me" I once knew. Karen is here by choice; neither I nor any of my friends or family would have blamed her one bit if at any time along the way she had simply opted out. "In sickness and in health" sounds great in concept, but in practice it's one hell of a promise to keep.

Getting hit with a chronic debilitating disease not only affects the person with the actual diagnosis, but all of those around them as well. Family and friends all feel the concussive force of the disease, which radiates blast waves much like an atom bomb. The patient may be at Ground Zero, but those in close proximity can suffer terribly also, and the closer they are, the more grievous the injuries inflicted. It's not only the patient's life that has been forever changed, but also the lives of all who love and care about them.

The patient, at least, receives all of the attention of the medical community, and most of the sympathy of the world at large. The husband, wife, child, or friend who is suddenly redefined as a "caregiver" is too often overlooked, the tremendous burden they must now bear taken for granted, sometimes even by the patient themselves.

A quick trip through the many Internet MS bulletin boards and forums is all it takes to discover that not all spouses and life partners make the choice to stick around once the disease has bared its fangs. I've read countless heartbreaking tales of MS patients being left by those they loved and trusted, and yet others of spouses and lovers sticking around for a while seemingly to only make the situation worse, offering no support at all but adding guilt and resentment to the cyclone of emotion caused by the disease itself, like ghouls intent on tormenting the tormented.

The MS landscape is littered with the smoking wreckage of lives derailed and dreams shattered, of hearts crushed and realities trampled. I'm blessed to have the support not only of the incredible woman who is my wife, but also of a circle of friends and family who don't deny the reality of my situation, but refuse to let it overwhelm the foundations of their relationships with me. I only wish that every other patient was similarly blessed, as I've known far too many who have been forced to trod this agonizing road alone.

Happily, I've had the pleasure to meet other patients who have their own heroes. People whose spouses, lovers, and families are strong and brave enough to treat them, for the most part, as if the disease had never struck, but also wise enough to know when a helping hand or calming gesture is not only necessary but mandatory. Such qualities are impossible to learn, and it is a special breed indeed that possesses them along with the innate sense of how best to bring them to bear. They might not always know quite what actions to take, or what words are needed, but out of sheer love and devotion can turn potentially embarrassing moments into intensely comical ones, and can make the dehumanizing aspects of a dreadful disease a stage on which to demonstrate the best of what it means to be a human being.

So, I bow my head in praise and thankfulness to Karen and my dear family and friends, and also to Kim, Hilda, Marko, Jordie, Kirsty, Jon, Steven, and Allan, MS partners who I've had the privilege of meeting in the past few months; and to the countless others who I've not met and have never heard of, whose strength, love, and dedication have lightened the load and made the unbearable bearable, whose choice to stay in the game has made the game still worth playing.

These are the true heroes, for the most part unsung, but all worthy of blazing headlines and a most special Medal of Honor.

One Week After Attempted CCSVI Liberation; Oh, What I'd Give to Be Boring...

Image by krazydad / jbum via Flickr

It seems I've spent my entire life being kind of unconventional, a little bit off-center, a person not wildly eccentric but filled with eccentricities. For the most part, my individuality has served me well, and over time I learned how to capitalize on my somewhat funky qualities to stand apart from the crowd, to separate myself from the writhing masses, and eventually to turn my quirks to my advantage.

Now, medically speaking at least, I find I'd like nothing more than to be a screaming bore, a real snooze, the dullest MS patient on the planet. Unfortunately, my tendency to be atypical has carried over to my disease presentation as well, and while it's garnered my case a lot of attention, that attention has not translated into medical solutions or relief from my illness.

From the get-go, my MS was labeled "atypical". As the years have gone by, more and more eyebrows have been raised by those considering my case, until finally this year the National Institutes of Health decided that I most likely don't have MS. Although my primary neurologist (a happily off-center guy himself) isn't as quick to dismiss MS as a likely culprit, he readily admits that I don't fit the profile of your typical PPMS patient. Unfortunately, the oddities of my case have not worked out to my advantage, as none of the traditional MS treatments have been able to lay a finger on my disease, and the myriad of unconventional remedies I've tried have been utterly useless.

So, I approached the radical CCSVI theory (click here to learn more about CCSVI) in a hopeful but skeptical manner. Even though I don't have classic MS, meaning the CCSVI theory very likely might not apply to me, a CT venogram done early last summer showed an area of stenosis very high up in my internal left jugular vein. Upon seeing this, the NIH opined that my disease may be primarily vascular in nature, but wouldn't commit to that judgment, at least not enough to warrant continued exploration of that possibility.

With no other options left to me, I investigated CCSVI and the idea of a vascular genesis to my illness with great interest, and after many months, with the help of a wily group of determined activist MS patients, found my way to Dr. Salvatore Sclafani, the Interventional Radiologist who performed the Liberation Procedure (a venogram and balloon angioplasty) on me last week. Knowing the peculiarities of my case, Dr. Sclafani and I really weren't expecting to find much in the way of vascular abnormalities during the procedure, but once again, I managed to defy expectations.

Upon injecting dye (via a catheter threaded through my vascular system) into my right internal jugular vein, Dr. Sclafani exclaimed, "Wow!", declared that my vein was significantly blocked, and that I did indeed have the condition now called CCSVI (Chronic Cerebrospinal Venous Insufficiency). Terrific, I thought, at long last a breakthrough!

Dr. Sclafani tried to open the blockage using balloon angioplasty. After four attempts, he had only limited success, the vein was only partially opened and most likely would close back down very soon. He also found some stenosis (narrowing) in my azygos vein, but because of its odd location was unable to fix that, either. Another venogram procedure, using different instruments, would likely be able to fix the azygos problem, but my primary problem appears to be my right jugular vein, which, when compared to the left, looks like something a very drunken Jackson Pollock might have painted on an extremely bad day.

So, the doctor and I are now left with the knowledge that I have some serious Central Nervous System blood flow issues, but are extremely limited in our options for rectifying them. The two most likely options would be traditional "cut the neck open" surgery to remove the malformed valve that is blocking my jugular, or to insert a stent into the vein to press that valve open.

Dr. Sclafani consulted about my case with the doctors and researchers in Italy who have been dealing with CCSVI for several years now, and they commented that they had never seen a valve like mine, that high up in the jugular. Once again, my individuality shines through. Hip hip freaking hooray...

The folks over in Italy suggested that whenever they'd encountered a similar jugular malformation, they'd recommend traditional surgery, or possibly a stent, although they generally try to avoid stents, which are exactly the same conclusions to which Dr. Sclafani had come. Dr. Sclafani talked about my case with some vascular surgeons, who didn't think "open neck" surgery would be a good choice, because of the distinct possibility of severe thrombosis (clotting issues).

This all finally leaves us with the stent option, which I am very uncomfortable with. Although several dozen CCSVI patients have been treated with stents, their use in jugular veins is somewhat controversial, for two primary reasons: stent migration, and eventual stent failure.

It's important to remember that the stents being used were all designed and approved for use in arteries, which are anatomically different from veins in extremely significant ways. A stent that gets loose in an artery generally gets pushed only deeper into the narrowing vessel, and doesn't inflict too much damage. A stent that becomes dislodged in a jugular vein, on the other hand, would inevitably find its way into the heart, with disastrous consequences.

My greater concern, though, is eventual stent failure. The stents now in use were almost all designed and approved to be placed in arteries located in the chest cavity, and these arteries are relatively rigid and not subject to much flexing. The stents now in use are constructed to withstand the tremendous pressures generated by the rhythmic pumping of the heart, not the torque, bending, and twisting they would be subject to when inserted into a vein in the incredibly flexible neck. Laboratory tests have shown that stents do indeed fail over time when subject to the kinds of stresses one might expect them to undergo when placed in very pliant jugular veins. The results of some studies suggest that stents placed under such stresses could likely fracture within 10 years. Needless to say, such a failure could be catastrophic.

Dr. Sclafani, ever the inventive guy, is trying to come up with some alternative solutions, and I'm confident that the good doctor will get it all figured out. In the meantime, though, the choice is between going for the stent, and the inherent dangers that entails, or waiting for the development of a unique procedure that would come with no guarantees, either. And all the while, the relentless drumbeat of my disease progression pounds inexorably onward.

Of course, I'll muster the forces and the gear up for the battles to come, but just this once, it sure would be nice to be scintillating dull...

Details on My CCSVI "Liberation Procedure"

Image by Okko Pyykkö via Flickr

Okay, folks, here's the skinny on my experience undergoing the CCSVI "Liberation Procedure", and the results obtained from it. For those unaware of what CCSVI or the Liberation Procedure are, please click here.

On Wednesday morning, March 10, my wife and I arrived at Kings County Hospital promptly at 7:45 AM, quite the improbable feat considering my intense loathing of the early morning hours. The hospital is about a one hour drive from my apartment in Manhattan, so we had a car pick us up at 6:45 AM (egad!). I somehow managed to get some sleep the night before, which was important because I had a long day in front of me.

Since my power wheelchair weighs about 300 pounds, making it impossible to transport in vehicles not specifically designed to handle such contraptions, we had to use my manual chair to get my gimpy ass in motion, which I despise (I feel like it renders me completely helpless). Because of the impending procedure, I had to stop taking the powerful anti-inflammatories that help keep my Avascular Necrosis in check, and the pain in my joints was intense. Riding in the uncomfortable manual wheelchair only made it worse.

Although I was considerably anxious, the trip to the hospital was made gratefully tolerable by our Egyptian cab driver, who was extremely intelligent and engaging. Our conversation allowed me to exercise my esoteric knowledge of ancient Egyptian gods, goddesses, and religious beliefs, which I rarely get to do in the course of a normal day (or week, or month, or decade), and telling tales of Isis, Osiris, and Horus went a long way towards taking my mind off of the potentially momentous events of the day to come.

Upon our arrival at the hospital, we took our place in the pre-op waiting room, and waited. And waited. And waited. I did my best to keep anxiety from taking root, trying some breathing exercises and meditation, attempting to stay in the moment and all that crap I like to spout off about, but still the butterflies kept churning away. We were finally called at 10:30 AM, and Karen and I were led to the changing area, where my godsend of a wife helped me out of my civvies and into the usual flattering hospital garb, complete with shower cap hat and rubber soled socks. We then again resumed waiting, until they finally carted me off to the surgery staging area around noon.

In the staging area, I conferred with some of the doctors and staff who would be assisting in the procedure, and Dr. Sclafani and I once again discussed that our expectations of finding anything significant were rather low, since my disease presentation is so atypical as to call my diagnosis into question , and my initial CT scans showed only one small area of stenosis high up in my left jugular, in an area that would be hard to address. I told Dr. Sclafani that I would prefer that he err on the side of caution, and he assured me that this was his intention from the get-go. I'll take this opportunity to sing the praises of Dr. Sclafani, who is an accessible, compassionate man that strove to make me a full partner in the process, and who respected and answered all of my questions and concerns in a professional but truly friendly manner. In short, Dr. Sclafani a very good man. I'm very lucky to have found myself in the care of some exceptional doctors who are also terrific human beings, including my primary neurologist, Dr. Saud Sadiq.

At about 12:30 PM, I was taken into the operating room, and gingerly made my way onto the operating table, with the help of a nurse and two orderlies. An IV was inserted into a vein in my left hand, and I believe the IV was attached only to a bag of saline, as I don't think I was sedated at all during the procedure. I may be wrong, but if there was any sedation, it was quite mild, as I was awake and alert throughout the entire process.

After sterilizing the location that the catheter would be inserted (my upper right thigh, adjacent to the groin area), I was given lidocaine injections in the area to numb it up in preparation for the catheter insertion. The lidocaine injections stung a tiny bit, but weren't really bothersome. Soon after, the procedure began, and the catheter was inserted into a vein in my upper thigh. The actual insertion was painless; all I felt was pressure and some tugging in the area.

The table I was lying on was integrated into an articulated x-ray machine, which changed position almost constantly as the catheter made its way through my vascular system and into my right jugular vein. Dye was injected into the vein via the catheter, so that blood flow could be tracked via x-ray. When the dye was squirted through the catheter, I could hear it as it filled the vein. Kind of strange, but nothing to freak out about. As soon as the dye filled vein was imaged, Dr. Sclafani literally said, "Wow!", and announced that I definitely had CCSVI. The blood in the right jugular was hardly flowing at all, and was blocked by a malformed, very large valve that was stuck almost shut. This seriously impeded blood flow, and forced blood to reflux back into my brain.

Dr. Sclafani tried to open the valve with a balloon device attached to the catheter, and each time he inflated the balloon it kind of felt like my ears were popping, very similar to the feeling you get in an airplane on final descent. He tried to open the valve three or four times, but with only limited success, and does not expect the valve to remain open for very long.

Next, the catheter was fed into my left jugular, and again dye was injected. This time, the x-ray images showed my blood flow to be perfectly normal, and the blood vessel showed no sign of stenosis.

These are some of the actual images taken during my venogram. The first two images show the abnormal right vein and the normal left vein. Notice all the fuzzy grayness on the left most image (right IJ). those are all the collateral veins trying to drain the right side through the vertebral vein. Unfortunately, even the vertebral vein is malformed and doesn't drain properly. The second image from the left is the normal left side and you can see uniform size and no collaterals. The third image is a close up of the abnormal valve, ( it's the gray area between the two areas of black ). Finally the image on the right is a view of the inflated angioplasty balloon.

The final step in the procedure was to explore my azygos vein, which is located in the chest and drains blood from the spinal cord. The catheter was manipulated into the azygos, and when the dye was injected, a small area of stenosis (narrowing) which was restricting blood flow was detected at the very bottom of the vein.

The azygos vein is a very twisty vessel, with lots of nooks and crannies. Unfortunately, the area of stenosis that was detected in my azygous was located in a very hard to reach part of the vein, and despite numerous attempts with different types of instruments, Dr. Sclafani could not access the site of the stenosis.

At this point, the procedure had already lasted over 4 1/2 hours, and the lidocaine that was used to numb the area of catheter insertion started wearing off. Suddenly, things started to become quite painful. I stupidly tried to gut it out for a while, trying to be the "Zen Warrior" that I like to imagine myself, but after a few minutes I realized I was being a "Zen Idiot" and alerted the doctors to the situation. After a few more lidocaine shots, the pain abated, and the procedure continued.

Trying his best to get at the area of stenosis in my azygos, Dr. Sclafani continued to try different instruments and tools in an attempt to reach the stenosis and balloon it open. This part of the procedure was not very pleasant, as I could feel the catheter snaking around inside my chest, creating an uncomfortable sensation of pressure that made me feel like I was having difficulty breathing. After exhausting his entire bag of tricks, Dr. Sclafani finally had to give up and leave the azygos stenosis unaddressed.

At this point, almost 5 1/2 hours after it started, the procedure was over. The catheter was removed, and pressure was applied to the area in which it had been inserted for about 15 minutes. When it was determined that the insertion point was no longer bleeding, I didn't even need a Band-Aid, and I can't even see where the catheter went in.

I was then wheeled into a room to recover, but since I hadn't been sedated, there really wasn't all that much to recover from. Karen appeared by my side, which gave my spirits an immediate boost.

Dr. Sclafani soon came in to explain his findings, which were that the right jugular was seriously occluded, and that although he tried with limited success to balloon it open, he didn't feel that it would stay open for very long. The options for addressing the abnormal valve that is causing the blockage are either the insertion of a stent, or a more traditional surgical procedure in which my neck would be cut open and the offending valve cut out. Neither of these options is particularly appealing, as Dr. Sclafani and I agree that until stents are designed specifically to be placed in the jugular vein, the risks involved in stenting the jugular are largely unknown and could be considerable. He suggested that the traditional surgical procedure might be the best option.

As for the obstruction in my azygos vein, Dr. Sclafani thinks that there is an instrument that he didn't have on hand during my procedure which he could use to reach the area of stenosis and balloon it open. This obstruction should remain open after ballooning, so we might decide to do another catheter procedure sometime in the near future.

After it was obvious that I had come out of the procedure in good shape, I didn't even need to spend the night in the hospital. Karen and I stayed in a local hotel, so that we didn't have to make the trip back to Manhattan, since we needed to visit Dr. Sclafani again the next morning.

Dr. Sclafani is going to consult with other doctors who are working on CCSVI, and determine the best approach regarding the two areas of abnormality he found in my CNS vascular system but had to leave largely unaddressed. We are still on the cutting edge of medicine when dealing with CCSVI, a theory that is still in its infancy, and there is much that needs to be learned.

In short, the procedure was a "successful failure", in that we successfully determined that I do have significant abnormalities in the vascular system associated with my central nervous system (a very important discovery), but those abnormalities unfortunately could not be remedied during the procedure.

As usual, I just can't seem to do anything "easy". While I now know that I do have significant blockages in my jugular and azygos veins, the scientific community still isn't sure that such blockages could be responsible for neurodegenerative damage such as is seen in my case. It stands to reason, though, that having such significant blockages in blood flow can't be doing me any good, and now that I know that I have these abnormal blockages, I would definitely like to get them fixed.

Dr. Sclafani is going to consult with my neurologist, and, I hope, with the neuroimmunology team that has been tracking my case at the National Institutes of Health, so the coming days and weeks should be filled with some important decisions and revelations.

Stay tuned, I'll keep updating Wheelchair Kamikaze with all of the latest news...

Post on My CCSVI Procedure Coming Soon, I Promise

I know that everybody is waiting for me to post a detailed account of my CCSVI Liberation Procedure, and I've got a full draft ready to go. I'm letting the doctor who performed the procedure look it over, to make sure that everything I stated is factually correct, because I think it's important to get it right.

The post not only goes over the results of the procedure, but gives a blow-by-blow account of what it was like to undergo "liberation". So please stay tuned...

And thanks to everybody who has left such thoughtful comments and sent such lovely words of encouragement. I appreciate your expressions of concern more than words can convey...

Back Home, Safe and Sound

First of all I'd like to thank everybody who left comments and sent e-mails wishing me their best, offering their support and encouragement. I don't have the words to express how much I appreciate the comfort sent my way, and I am continually astounded that my silly little blog has touched the lives of so many.

I'm back home, safe and sound, after undergoing the CCSVI angioplasty procedure, which lasted longer than I expected, almost 5 1/2 hours, and discovered several abnormalities within my CNS vascular system. I'll detail these abnormalities in a later post, when my own understanding of what was found is more clear.

For now, I'll just say that the abnormalities that were discovered were not able to be fully treated at this time. Dr. Sclafani, who performed the procedure, is going to consult with a variety of experts to determine the best course of action to take moving forward.

As for the procedure itself, it really wasn't painful or even all that that unpleasant, just long and tiring. Not that I'd recommend it for a recreational activity, but the degree of anxiety I felt before the procedure was out of proportion to the actuality of the event.

Again, I'd just like to thank everybody for their wonderful show of support. I will post a detailed explanation of the findings after I consult further with my doctors, and can give an entirely accurate account. I expect I'll be able to do this within the next few days. There is surely enough misinformation on the Internet regarding CCSVI and the procedures used to address it without my adding to the confusion.

Again, thanks everybody...

Well, I'm Going for It - Having CCSVI Procedure This Wednesday

Image by nats via Flickr

This Wednesday, March 10, I'm scheduled to undergo a diagnostic venogram, looking for stenosis (narrowing) and/or other abnormalities in my azygos and jugular veins. If any such anomalies are found, they will be addressed via a balloon procedure. The venogram itself involves feeding a catheter from a vein in my upper thigh, through my vascular system, to the veins associated with the central nervous system. In the parlance of CCSVI, this is known as the "Liberation Procedure". (For info on CCSVI, click here)

The procedure will be performed at Kings County Hospital in Brooklyn, New York, by Dr. Salvatore J. A. Sclafani, the Chief of Radiology of the facility. He's also Professor and Chairman of Radiology at the SUNY Downstate Medical School. Dr. Sclafani has a long history of innovation in the field of interventional radiology, and is excited to be at the vanguard of CCSVI research and treatment. He attended the recent CCSVI conference in Hamilton, Ontario, along with all of the acknowledged experts in the field, including Dr. Paolo Zamboni, who developed the CCSVI hypothesis. Dr. Sclafani continues to regularly consult with Dr. Zamboni.

I'm hopeful that the procedure will prove to be of benefit, but I'm also trying to keep in mind the realities of my situation. It's important to understand that my illness is highly atypical. There's much question about my diagnosis, and it's quite likely that what is causing my neurodegeneration is not MS.

The neuro immunology team at the National Institutes of Health has examined me extensively, and has concluded that my disease does not fit any of the diagnostic criteria that are required to label my condition Multiple Sclerosis. They aren't sure what I do have, but one of the possibilities they've talked about is that my disease may be primarily vascular in nature, since a CT venogram done this summer did reveal stenosis very high up in my left internal jugular, unfortunately in a spot that will be difficult to fix. However, Dr. Zamboni has recently expressed the opinion that stenosis high in the jugulars is often secondary to stenosis found lower in the vein, and that addressing the lower stenosis often opens up the upper problem as well.

My primary neurologist here in New York is less convinced that I don't have MS, but agrees that whatever disease afflicts me is highly atypical. I have only one significant lesion, at the very base of my brainstem, which has not changed in size or appearance in the nine years that I've been getting regular MRI imaging. My spinal fluid is clear of O-bands or other evidence of inflammation, and my clinical presentation is at odds with the results of my diagnostic testing. I do have evidence of "autoimmune activity", such as Hashimoto’s Thyroiditis, and some unexplained episodes in my medical history.

As a result of this lack of clarity regarding my diagnosis, Dr. Sclafani and I are unsure as to what Wednesday's venogram will reveal, or that addressing any problems that do show up will have any beneficial impact at all on my condition. If I don't have MS, then the CCSVI theory doesn't even apply to me. However, my disease progression continues unabated, and since I already know that I have stenosis in my CNS venous anatomy, it makes sense to further investigate the possibility that vascular problems may be playing a part in my illness.

Thanks to the diligence and hard work of a very small group of grassroots activist MS patients, who relentlessly sought out physicians who would pick up the CCSVI gauntlet, Dr. Sclafani agreed to look at the available evidence, and upon doing so became convinced that the CCSVI theory has merit and warrants serious investigation. After much study and consideration, he's recently begun performing catheter venogram procedures on MS patients, and has found a high correlation between MS and CNS venous abnormalities. He's addressed these abnormalities using balloon angioplasty, to gently force open the azygos and/or jugular veins of his patients.

I first met with Dr. Sclafani about six weeks ago, and he devoted over three hours to consulting with my wife and me. After first being examined by the hospital’s neurologist, I sat down with Dr. Sclafani to go over the results of the CT venogram that had been done this past summer. The good doctor carefully examined dozens of the images contained in the scan, explaining what he saw in each one to Karen and me.

Since my diagnosis, I've met with some of the most renowned doctors in the land, but have encountered few as empathetic and considerate as Dr. Sclafani. Rather than being talked to, I felt I was being talked with, and Dr. Sclafani responded to all of my concerns and unhesitatingly voiced a few of his own. He was scheduled to go to the Hamilton CCSVI symposium about a week after my appointment with him, and we decided to put off making any treatment decisions until after he attended the symposium and had a chance to consult with the assembled doctors.

Our consultation lasted far longer than had been anticipated, and the doctor’s staff thoughtfully had a car service waiting to take my wife and I home when it ended. Dr. Sclafani personally saw my wife and me out of the facility, then helped me into the car. Other than my primary neurologist, Dr. Saud Sadiq, who is also quite exceptional, I don't know many other doctors who would exhibit such down to earth humanity.

After the Hamilton symposium, Dr. Sclafani contacted me and told me he thought we should move forward with the venogram. His assistant Holly attentively handled all the arrangements, and this past Thursday I went back to Kings County for pre-op testing. Thus far, every step of this process has been handled in a professional, timely, and even (gasp!) cheerful manner. Hopefully, the actual procedure will go just as smoothly...

If I were recently diagnosed, or my symptom profile was more mild, I think I'd wait to see what the coming wave of CCSVI research reveals before undergoing this procedure. The speed with which my disease is progressing, though, makes it not too hard to envision the Wheelchair Kamikaze becoming the Mattress Kamikaze in the foreseeable future, and I'm determined to do everything I possibly can to cut that eventuality off at the knees. Upon my diagnosis, just about seven years ago, I vowed that if this son of a bitch was going to take me down, it was going to take me down fighting, all guns blazing, both fists bloodied, and with bite marks firmly implanted in its skull. This is war, and surrender is not an option.

For those interested in contacting Dr. Sclafani, please e-mail his assistant Holly Barr (ccsviliberation@gmail.com).