Tuesday, June 29, 2010

Taken Out Of Context

McSweeney's San Francisco Panorama amid New Yo...

Image by Steve Rhodes via Flickr

Well, I find myself in a classic good news/bad news situation. The good news is that I was featured prominently in a Canadian newspaper article about CCSVI (click here). The bad news is that while I did say everything that is attributed to me in the article, the reporter chose to feature some of the more glib comments I made during our 40 minute conversation, the majority of which I spent talking seriously about the promise of CCSVI and the righteous desperation felt by MS patients worldwide.

I suppose the best way to handle this is to just go quote by quote, and explain the context in which each was said. So, here goes...

“If CCSVI turns out to be gospel truth and it actually helps people then it’s terrific for the patients that are getting the procedure and getting benefit from it. But it’s doing nothing to advance the science — which is really what needs to happen,” says Marc Stecker, who has MS and who writes about life with the disease on the blog Wheelchair Kamikaze.

Well, I think that one is pretty self-explanatory. I've repeatedly said on this blog that scientifically valid trials are desperately needed to either confirm or refute the CCSVI hypothesis. The same sentiment has been expressed by Dr. Zamboni, Dr. Zivadinov, Dr. Sclafani, and other prominent CCSVI researchers. I completely understand patients spending their own money and getting treated however they can; after all, I followed much the same route. But before CCSVI will be recognized as anything other than rogue science, traditional blinded studies must be carried out.

As I explained in a recent post on this blog (click here), I now believe that treatment trials should be given the utmost priority, as these will not only prove or disprove the correlation of CCSVI with MS, but will also demonstrate whether or not the liberation procedure is truly beneficial to MS patients. Treatment trials will also allow for the refinement of the liberation procedure, which right now is limited to either balloon venoplasty, which has been shown to be impermanent in many patients, or to the use of stents, which carry risks both known and unknown. If trials do prove that CCSVI plays a major role in the MS puzzle, as I'm confident they will, I believe the liberation procedures being performed in a year or two will differ significantly from those being done today.

“I call them the miracle videos,” Stecker, who lives in New York and who has had MS since 2003, says of some of the testimonials. “You see before and the person is struggling to get by on like two canes and a crane. And then the day after they show them sauntering around Poland or wherever they’ve gone to have the procedure done.”

Written out in black-and-white, the above quote makes it appear that I was demeaning the people who received benefit from the liberation procedure, when I was (pretty lamely) trying to be amusing. The reporter left out the fact that after making the above utterance, I said that I didn't think that any patients in the videos were faking, and was truly happy for those who found relief. I then spent several minutes discussing how such results could lead to a rethinking of the MS disease process, because given our current understanding of Multiple Sclerosis it is difficult to explain such dramatic improvements from a traditional medical point of view. MS patients with significant disabilities are thought to have significant nerve damage, and for those disabilities to dissipate in the course of a day or two would require nerve regeneration at an impossible rate. I also explained that the liberation procedure might lead to a sudden diminishment in CNS inflammation, but even that process would take longer than the day or two often portrayed in the before/after videos. In retrospect, I should have been more circumspect about how I presented my views, but my natural inclination is to talk about things in an informal, humorous way, as is evidenced by this next (and last) quote:

“A couple of us haven’t seen great results — it’s like the liberation losers’ league,” Stecker quips.“I know personally through the blog and from people that I’ve met just in MS circles who have had it done (that) it seems to be that it’s not a small percentage that are not finding any benefit.”

To be fair, the reporter does preface this quote by saying that my liberation procedure was unable to open the blockages found in my veins, but again, the quote she chose to use makes it appear that I'm much more negative about CCSVI than anybody who reads this blog regularly knows that I am. I can't even take credit for the" liberation losers league" quip, as that phrase was coined by a fellow MSer who is quite funny and whose venous blockages were also unable to be corrected.

Although the tone of the above quote rings flat, I do stand by its substance. In the enthusiastic embrace that the MS community has given CCSVI, it's often overlooked, or not even mentioned, that there are many patients who have undergone liberation that have not experienced any benefit from the procedure. These include not only patients who have problematic blockages, but also those whose procedure was "successful " but still didn't experience any significant improvement in their MS symptoms. It's been estimated that over 1000 liberation procedures have been performed worldwide. We really only know the results of a few dozen of them. MS is a complex disease, and I've repeatedly said that I believe that CCSVI will likely play a major role in the disease process of some patients, but just as likely play very little part in that of others. My greatest hope would be that CCSVI turns out to be the end of Multiple Sclerosis as we know it, but reason tells me that, unfortunately, this probably won't be the case.

It's often said that there is no such thing as bad publicity, and I'm constantly amazed that this blog has received the attention that it has, but I guess I have a lot to learn about dealing with the press. I hung up the phone after talking to the reporter thinking that I'd given her a positive, well reasoned, and balanced account of the issues surrounding CCSVI, never imagining that my few flippant attempts at light banter would show up in black-and-white on the printed page.

Lesson learned: be careful what you say to reporters...

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Monday, June 28, 2010

Another Bits and Pieces (Mostly CCSVI Related)

The New York Times building in New York, NY ac...

Image via Wikipedia

  • Finally, a major US news outlet runs a feature piece on CCSVI. Tuesday's New York Times carries a very balanced article on Dr. Zamboni's theory and the impact it's having on the MS universe, as the lead story of the paper's Health section (click here for article). While giving equal coverage to the pros and cons of the theory, the article profiles a patient who appears to have clearly benefited from having the stenosis in her veins addressed using the liberation procedure. The article does stress that further research needs to be done, and gives voice to both the opponents and proponents of CCSVI. The patient featured needed multiple venoplasties performed because of repeated restenosis, an all too common problem for those undergoing the liberation procedure. This article should open the floodgates of coverage in the US media, which has been almost eerily silent on CCSVI until now. I expect that telephones will be exploding in MS neurologists' offices around the country for the rest of the week...

  • The Buffalo Neuroimaging Analysis Center (BNAC) is starting the first official blinded treatment study of the liberation procedure this week (click here for info). These are the same good folks who did the CCSVI imaging study released last February, which found that about 60% of MS patients exhibit the hallmark signs of CCSVI, vs. about 25% of healthy subjects that also showed signs of narrowed veins (click here for info). This treatment trial consists of two phases. The first phase includes 10 patients who will undergo the liberation procedure using balloon angioplasty only, not stents, who will then be followed for 30 days to track the efficacy and safety of the treatment. If all goes according to plan, another 20 patients will then be treated, 10 of those with a "sham" treatment, to serve as a control group. The outcomes of the two groups of 10 patients will be carefully tracked and compared to ascertain the impact of the liberation procedure on patients with early-stage MS. Though this trial is relatively small, let's not forget that a journey of a thousand miles begins with single step...

  • Speaking of the BNAC, their program of fundraising CCSVI MStery parties is in full swing, with parties planned and being held around the country. These shindigs are a terrific way of donating to CCSVI research while having a great time doing so. This past Sunday night, a party was held at Seattle restaurant The Pink Door, which raised over $13,000 for the BNAC's CCSVI research. The Wheelchair Kamikaze himself (that would be me) made a virtual appearance at the party via Skype, introducing the BNAC's Director, Dr. Robert Zivadinov (who was also a virtual attendee), to the crowd. I was even accorded the highest honor a man can be bestowed, as Jackie Roberts, the owner of The Pink Door, named a drink after my Internet alter ego. The "Wheelchair Kamikaze" consists of vodka, triple sec, lime juice, and blue curacao. After drinking three or four of those, you're guaranteed to have as much trouble walking as I do... (click here for info on how to hold or attend a CCSVI MStery party-even a virtual one!)

  • Just a reminder to sign up for and watch the latest NMSS live webcast, "What's New in MS Research and Treatment", which will be held on Wednesday, June 30, from 1 PM to 2:30 PM ET (click here to sign up for webcast). Topics covered will include the new oral MS drug therapies, nervous system regeneration and repair, and (drumroll please) an international overview of CCSVI research. These webcasts are always filled with lots of good information, and, being live, who knows what kind of shenanigans might ensue. I sure hope one of the neurologists isn't caught lip syncing...

  • In keeping with the marijuana theme set by previous "Bits and Pieces" posts, Britain has okayed the use of the world's first cannabis-based medicine, called Sativex (click here for info). The drug comes in the form of a spray, and is taken via a spritz into the mouth of a patient. Sativex has been found to effectively reduce spasticity in MS patients, and has been available in Canada for several years. Don't expect to see it available in the US anytime soon, though, because of our asinine laws which so demonize marijuana that it is prohibited from even being researched for possible medicinal uses. And do you know why we have such idiotic laws? To protect our youth from the depravity of illicit drug use, you say? Wrong. Anti-Marijuana legislation was originally enacted to protect the profits of companies such as DuPont and the Hearst Corp., with a liberal dose of racism thrown in for good measure (click here for info). Thankfully, several states have taken things into their own hands and okayed medical marijuana, but the vast majority of chronically ill US citizens seeking relief with this natural remedy are considered criminals...

  • Here's a rare bit of good news for MS patients with progressive disease: a clinical study of a treatment protocol for these notoriously difficult to treat patients shows very encouraging results. In a study published in this month's Journal of Neurology, The International Multiple Sclerosis Research Center of New York reports that a retrospective analysis of progressive MS patients that had undergone a series of eight intrathecal (spinal) injections of methotrexate revealed that 89% of a SPMS patients receiving the treatment had stable or improved disability scores one year following treatment, as did 82% of primary progressive patients treated (click here for more info). The patients were considered for this treatment if they were unresponsive or intolerant of approved FDA therapies. Methotrexate is an immunosuppressive drug that is commonly used to treat rheumatoid arthritis and psoriasis. Full disclosure: the MS specialist conducting this study is Dr. Saud Sadiq, my personal neurologist. I was given intrathecal methotrexate treatments, but saw no benefit. Please keep in mind, though, that mine is an extremely unusual case of MS, so unusual that my diagnosis is open to question. When Dr. Sadiq sees me rolling down the hall of his clinic, he does a heroic job of suppressing the urge to run the other way screaming...

That's it for today, folks. I hope readers are finding these Bits and Pieces posts to be interesting and of value. I'm all about value...

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Sunday, June 27, 2010

Wheelchair Photo Safari to Unexplored Central Park

I'm lucky enough to live just a few blocks from Central Park, and like many Manhattanites, I use the park as a lifeboat of recreation, respite, and just plain sanity amidst the hustle bustle of both the teeming city streets and the inside of my own head. When I just can't do any more thinking about progressing physical disability, the medical industrial complex, CCSVI, Multiple Sclerosis, or just life in general, I fire up Legs (my wheelchair's name, you know) and head for the park, camera rigged securely to the chair's arm.

One of the major advantages (and, yes, there are definitely advantages) of being in a wheelchair is that the chair is quick (mine can do about 8.5 mph, almost 3 times the walking speed of mere mortals), it doesn't tire easily, and it never needs to pee. Therefore, I've been able to see much more of the park than your average run-of-the-mill walking person. Still, the park is so big that lots of it remains unexplored by yours truly, including, until very recently, two of its major features, the Harlem Meer and the Conservatory Gardens (click here and here for more info on each).

I don't think that most people who live outside of New York realize the sheer size of Central Park. From end to end, the park is about 2.5 miles long, and 3/4 of a mile wide. Most people only explore a fraction of all of that real estate, and when I was still confined to my feet I repeatedly visited the same 20% or so of the Park that was within easy reach of my nonmechanical limbs. Here's a map of the park, with the little red circle indicating where I usually enter Central Park, and the bigger blue circle outlining the area I had not yet visited.

Central-Park-Map.jpg picture by marcstck

As you can see, the unexplored (at least to me) part of the park is just about as far away from my entry point as you can get within Central Park's confines. I've been meaning to wheelchair it over there for the almost 2 years since I've had Legs, but I've somehow never quite managed to make it, always getting distracted by one Central Park sight or another. The majority of the pictures in the photo gallery featured in the left column of this page were taken with my wheelchair mounted camera in Central Park, which is so rich with interesting geography and people that it could keep a photographer happily busy for a lifetime.

Central Park Waterfall

There are parts of the park that are so heavily forested that it's almost impossible to believe that, while traversing the miles of trails within, you're smack dab in the middle of one of the largest cities in the world. The noise of the metropolis is totally silenced, and even the city's skyscrapers can't be seen through the incredible tapestry of old-growth trees. When you consider the value of the land that it occupies, Central Park is really a miracle, a gift bestowed on the city's dwellers by people with incredible insight, who about 160 years ago placed a magnificent jewel right in the center of Manhattan Island. (Click photo for larger image)

About a week and a half ago, on a nice sunny day, I headed out determined not to be distracted in my quest to finally visit the Harlem Meer (meer is a Dutch word for lake) and Conservatory Gardens. Sticking to the park's major thoroughfares, I made it to my destination in about 25 minutes, keeping the chair at maximum speed throughout. For whatever reason, I get a little devious thrill whizzing past struggling joggers, barely suppressing the urge to scream out, "eat my dust!" as I leave each one in my tracks. I guess it's just another way of wanting to raise a huge middle finger to Multiple Sclerosis, as convoluted as the thinking behind that urge may be.

My first stop was the Conservatory Gardens, which are laid out in three distinct styles, with gardens in the French, Italian, and English traditions. Each section has its own charms and some very photogenic statues and fountains. I'm not generally a "flower picture" guy, but even I succumbed to the siren call of the floral residents within.

I then made my way to the Harlem Meer, which is the second-largest body of water in the park, all of which are man-made. The Meer is just as pretty as I expected it to be, and I'll definitely be making many return visits. I even got to see some old-school breakdancing, a photo of which is below.

The trip from my apartment to the Gardens and Meer and back totaled about 9.5 miles, including all the meandering I did when I got a bit lost trying to find a wheelchair accessible route back home. Lots of the paths in the park include extremely bothersome steps, as I guess the planners didn't give much thought to future power wheelchair users when they laid out the park in the 1850s. At the end of the day, I still had 37% of my battery power left, which pleased me to no end, as keeping track of my battery usage has become something of an obsession. I think (I hope) other wheelchair users can relate...

Here is some of the photographic evidence of my visit to the North East reaches of Central Park. Please click on the thumbnails below to see larger images.

vert-flowers-2.jpg image by marcstck

meer-hdr-1-1.jpg image by marcstck

maidens-xwide-1.jpg image by marcstck

fountain-cu-1.jpg image by marcstck

garden-ally-fuse-1.jpg image by marcstck

purple-flower-1.jpg image by marcstck

fountain-med-style-1.jpg image by marcstck

break-dancer-bw-1.jpg image by marcstck

bird-bath-fly-3-1.jpg image by marcstck

bee-flower-1.jpg image by marcstck

meer-tree-1.jpg image by marcstck

court-fountain-hdr-1.jpg image by marcstck

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Monday, June 21, 2010

Some Revised Thoughts on the Current State of CCSVI

i0001_0000b-Frame1 Last week, I published a post on my thoughts regarding the current state of CCSVI research and treatment (click here). The post elicited much response, and many well thought out comments were left by readers who both agreed and disagreed with my points of view. As I've stated before, I welcome all readers to post their opinions, as a healthy exchange of ideas is the only way to draw informed conclusions, especially on subjects as new and controversial as CCSVI.

After reading and considering many of the responses arguing that research into whether or not venous blockages correlate with MS, and, if so, whether these abnormalities are cause or effect, were basically a waste of time and that treatment studies should take the forefront, I've changed my original point of view. While I still do think that academic research into the venous abnormalities we've come to call CCSVI is important, I now believe that treatment studies should be given the highest priority possible.

I've come to this conclusion for a variety of reasons. First, treatment studies themselves will show whether or not CCSVI abnormalities are indeed related to MS, and if they play a role in causing or exacerbating the disease. If, under rigorous trial conditions which include pre-and post-procedure neurologic evaluations, patients are found to respond favorably to the liberation procedure, then obviously CCSVI is not only related to MS, but plays an important role in the disease process. If patients fail to respond, then the opposite conclusions can be drawn.

Second, the noninvasive imaging techniques used to detect CCSVI have been shown to be less than reliable, and catheter venography has thus far proven to be the gold standard in finding blockages in the veins associated with the central nervous system. Based on the accounts of both the physicians who have performed the procedures, and patients themselves, Doppler sonography, MRV's, and CT venograms have all been shown to be prone to both false positives and false negatives when compared to the findings of catheter procedures, for a variety of reasons (technological limitations, operator deficiencies, etc.). Thus, any studies based strictly on noninvasive imaging will always have a cloud of doubt hovering over them. Better to cut to the chase, and perform catheter venography on test subjects. If that venography detects abnormalities, these abnormalities should be addressed by balloon angioplasty, which has been shown to be an extremely safe procedure when done by experienced physicians. Again, whether or not patients respond to angioplasty would answer questions of correlation and causation.

Third, if CCSVI does indeed prove to be a major piece of the MS puzzle, we need to refine the techniques and technology of the liberation procedure. Currently, many patients experience improvements soon after undergoing the procedure, only to see those improvements dissipate when their newly opened veins close up again. This phenomenon itself would suggest that CCSVI at least plays a role in the MS disease process, and also indicates that much learning needs to be done about the best practices, procedures, and equipment to be used when undertaking the liberation procedure. Virtually all of the medical equipment currently used in the treatment of CCSVI was developed primarily for use in arteries, which are vastly different in an anatomical sense to veins. Vein specific equipment, especially stents, needs to be developed if the liberation procedure does prove to be a major player in the treatment of Multiple Sclerosis.

Several other concerns have recently come to my attention. It seems to be becoming clearer that CCSVI is likely not just confined to the jugular and azygous veins, as has been thus far thought; the picture appears to be more complex. Dr. Zamboni has recently suggested that abnormalities in the lumbar veins could very well play a major role in progressive illness, and many venograms are finding abnormalities in the vertebral veins as well. The vertebrals are the vessels that return blood to the heart and lungs from the brain when patients are in an upright position. The jugulars take over this function when patients are lying flat. Thus, problems in the vertebrals could theoretically play just as important a role as jugular abnormalities. In my particular case, the catheter venogram done during my unsuccessful liberation procedure turned up blockages not only in my right internal jugular, but also abnormalities in my vertebral veins as well. Unfortunately, there is currently no accepted method for addressing stenosis in either the vertebral or lumbar vessels. Clearly, research into these concerns is necessary.

We must see collaboration between neurologists and vascular specialists if the myriad questions surrounding CCSVI are to be answered in any definitive fashion. I'm aware of several treatment studies that are currently awaiting approval, and of several doctors who are chomping on the bit waiting to get started conducting these trials. They'll have no problem finding patients willing to participate in these studies, but funding may be a dilemma. The MS patient population must get behind the studies, not only in body and spirit, but with their wallets too. When these studies are finally approved and announced, CCSVI advocates the world over, and those who love them, will need to step up to the plate and donate either directly to the institutions conducting the studies, or to nonprofit CCSVI advocacy groups that are currently readying to launch. Patient advocacy has pushed CCSVI out of the shadows and into the spotlight that currently shines on it, and that same advocacy will likely be necessary to take CCSVI from hypothesis to either positive or negative conclusion.

The CCSVI studies recently approved by the MS Societies of the United States and Canada will provide valuable data in assessing many of the questions that CCSVI theory has posed. I'm particularly intrigued by the study that will look at sets of twins in which one has has developed MS but the other has not. In fact, all of the approved studies will add greatly to the CCSVI knowledge base. But for a patient population desperate for answers, suffering with a disease in which time itself is an enemy, answering academic questions simply isn't enough. We must find out, as quickly and definitively as possible, whether or not the liberation procedure is as beneficial to some MS patients as anecdotal reports make it appear to be. Desperate times call for desperate measures, and for many MS patients, myself included, these are indeed desperate times...

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Thursday, June 17, 2010

The Return of Bits and Pieces

People seemed to like my previous two "Bits and Pieces" posts, so here's a go at another one. Presented for your perusal are a few items of interest that have muscled their way into my consciousness over the past week or so...

Emperor Penguin Manchot empereur

Image via Wikipedia

  • The illicit but medicinal drug experiment continues, as I've taken a hit of marijuana before bed every night for the past two weeks, and it's definitely helping me sleep better. It's incredible how much stronger the weed is now than when I was a teenager in the 70s. Back then, I could share a joint with a friend and then go to geometry class fully under control but thoroughly amused by all the silly shapes and equations. With the stuff I have now, one strong hit and I'm pretty much zombiefied. It definitely helps with spasticity, though, and with my joint pain as well (no pun intended). Oh, I've also made friends with a very funny 7 foot tall Emperor Penguin named Emerson, who talks like Peter Lorre and does hilarious things with his big penguin toes. For some reason, Karen keeps making believe that she can't see him. I think she's trying to drive me insane. Help.
  • CCSVI has finally gotten some relatively prominent US press, in the Philadelphia Inquirer, albeit in the local and regional section (click here for article). While it's been getting intense coverage in Canada, and has even been taken up by the Canadian Parliament (click here), the US media outlets have by and large completely ignored CCSVI. Even after last week's announcement of NMSS funding for research into CCSVI, not a peep out of US newspapers or television news outlets. As I've written before, I find this extremely suspicious, since the United States has no truly independent news sources anymore. Virtually every major American newspaper and television news outlet is owned and operated by huge conglomerates which are very happy to gobble up the advertising dollars of the pharmaceutical companies. During some TV programs, it seems that every third commercial is for a pharmaceutical drug. Viva Viagra...
  • The NMSS is sponsoring a live webcast, "What's New in MS Research and Treatment", on June 30 from 1:00 – 2:30 p.m. ET (click here to sign up). Topics covered will include oral and other new therapies on the horizon, nervous system repair and protection, and an international overview of CCSVI research. The CCSVI piece will be presented by Dr. Robert Fox of the Cleveland Clinic, who is leading one of the teams that is receiving an NMSS grant for CCSVI research. Other presenters include Dr. Peter Calabresi of Johns Hopkins, who has had the pleasure of examining me on two occasions (clearly, the highlights of his illustrious career), and Dr. Loren Rolak, of the University of Wisconsin. These live webcasts are always interesting and full of information, and I'm sure the CCSVI segment will provide plenty of fodder for discussion and debate. All interested parties should certainly watch.
  • It's long been noted that MS and other autoimmune diseases often seem to go into remission during a woman's pregnancy. Now, scientists from the University of Michigan and the National Institutes of Health have discovered a possible mechanism for the phenomenon (click here for article). The researchers have identified an enzyme that is reduced in the immune cells of pregnant women compared to non-pregnant women. It appears this enzyme down regulates the immune system, which is necessary during pregnancy to protect the fetus, which includes proteins from the father that are alien to the mother and could be targeted by the immune system as invaders. This dampening of the immune system could explain the pattern of MS disease remission that is commonly seen in pregnant MS patients. For all of the CCSVI advocates out there, please keep in mind that research such as this does not contradict CCSVI theory. CCSVI provides an elegant hypothesis as to the mechanism that causes the immune system to react to CNS tissues, and also explains how immune cells might get through a weakened blood brain barrier. Thus, any drug or natural process that suppresses or modulates the immune system would have efficacy in the CCSVI model of the disease. Just saying...
  • Now, for things that make you say hmmm. Or, in this case, hum. Here's a TV news piece on an acoustic medical device that is claimed to work on MS and other disorders. I'm not too sure about this one, but my friend Emerson the 7 foot Emperor Penguin swears by it...
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Sunday, June 13, 2010

Some Thoughts on the Current State of CCSVI

Central nervous system

Image via Wikipedia

Now this is not the end. It is not even the beginning of the end. But it is, perhaps, the end of the beginning.

-Sir Winston Churchill, November 1942

It's now been almost 13 months since I first posted information on CCSVI, in a piece titled "Is MS Actually a Vascular Disease?" (click here). At that time, CCSVI was hardly a blip on the MS radar screen, knowledge of it confined mostly to a few dozen patients fervently researching and discussing Dr. Zamboni's findings on the patient forums at ThisisMS.com. A small handful of MS patients had been treated by Dr. Michael Dake, at Stanford University, having stents placed in the narrowings (stenosis) found in the veins associated with their central nervous systems.

Well, what a difference a year has made. CCSVI has created a firestorm in the MS community, as desperate patients have embraced the theory as their best hope to beat back this horrifying beast we call Multiple Sclerosis. Canadian television has aired numerous news pieces detailing the theory and the "liberation procedure" used to treat it (click here), hundreds of patients have been treated for the condition at locations scattered around the world, and the Internet is full of seemingly miraculous before and after videos portraying patients whose MS symptoms have dramatically declined after undergoing endovascular procedures to address their vascular abnormalities (click here). Just this past Thursday, the US and Canadian MS societies announced $2.4 million in grants to fund seven trials designed to test the validity of the CCSVI theory (click here).

Still, there is widespread disgruntlement among the MS patient population, many of whom are dismayed at the almost complete lack of treatment options available locally in the US and Canada, feel that research is moving much too slowly, and in fact believe that a conspiratorial cabal of pharmaceutical companies, mainstream neurologists, and MS societies is intent on suppressing and killing the CCSVI theory in order to protect huge profits and rapaciously defended spheres of influence.

I understand the desperation and anger these patients feel, which speaks loudly not only of the promise of CCSVI, but also of the failure of mainstream neurology to come up with any options better than simply suppressing or modifying our immune systems, often with drugs that carry with them the possibility of terrifying side effects. We are told that our immune systems have somehow gone bonkers and decided to attack our own tissues, but we've never been told why, and with the tremendous profits being generated by drugs companies marketing drugs targeted at the immune system, that why has been left to dangle in the air, twisting in the breeze. CCSVI appears to answer that vital why, in a fairly elegant and easy to understand manner, and thus has been embraced by a patient population frantic for answers.

It's important, though, to take a step back and calmly assess the situation as it now stands. We must guard against hope eclipsing reason, which is difficult to do when, as MS patients are fond of saying, time equals brain. With the omnipresent escort of progressing disability haunting us, we all want solutions, and we want them as quickly as possible.

Still, it's important to discern the realities of where the state of CCSVI research now stands. Many patients insist that the theory has been proven, and that a simple and minimally invasive procedure can halt or reverse the ravages of their illness. It's quite possible that they are correct about the procedure, but the fact is, as has been stated by Dr. Zamboni (click here) and some of the other leading CCSVI researchers and physicians themselves (click here and here), that research is desperately needed to prove or disprove the association between MS and CCSVI, that the procedures used to treat the venous abnormalities that have come to be called CCSVI need to be refined and perfected, and that new medical devices (stents) must be developed specifically for use within the CNS venous system.

Thus far, the only positive peer-reviewed research that has been published regarding the association between CCSVI and MS comes from Dr. Zamboni, and from the research team at the Buffalo Neuroimaging Analysis Center (BNAC), whose initial trial results involving 500 patients were released in April. All other reports are strictly anecdotal, and as such have little credence in the eyes of science. It's vital for completely independent researchers to confirm the initial groundbreaking work done by Dr. Zamboni, to firmly establish that CCSVI is significantly more prevalent in MS patients than in the general population, and, once confirmed, that CCSVI is a cause rather than an effect of the disease. Despite many patients’ belief otherwise, neither of these two propositions has yet been established in any scientifically valid manner. Only once CCSVI is determined to be a causative factor of MS will the MS societies fund studies on treatment.

In the meantime, privately funded studies looking at treatment options have already been proposed, and some should be getting underway sometime this summer.

The studies recently funded by the US and Canadian MS societies are targeted at precisely the two primary goals of proving the CCSVI/MS connection and showing that CCSVI is a cause rather than an effect of the disease. Much has been made of the fact that $2.4 million is hardly an overwhelming amount of money to be spent on CCSVI research, especially when placed in the context of the tens of millions of dollars being spent researching other aspects of MS, but at least it's a start. Without the groundswell of patient activism and advocacy, there most assuredly would have been no funding given to CCSVI research whatsoever, and I urge patients to continue to agitate for more, and more timely, research to be done.

The genie of patient activism is out of the bottle, and wielded wisely, can exert great influence on the powers that be. We must be careful, though, to guard against hysteria and extremism, to keep the CCSVI movement from being branded the lunatic fringe of the MS patient community. Discretion is often the better part of valor, and the movement would do well to heed Teddy Roosevelt's advice to speak softly and carry a big stick. That big stick is money, as the MS societies rely heavily on donations from the population at large (contrary to popular belief, only 5% of their contributions come from the pharmaceutical companies). I would expect that a smart and well-organized campaign that impacted the societies’ bottom line would quickly get their attention. Efforts can be made, too, to get CCSVI sympathetic members placed on the boards of the societies, as was recently tried unsuccessfully in Canada (click here). There will soon be CCSVI specific nonprofit organizations moving to the forefront, and support for these organizations should rank high on the list of those patients seeking to further the cause of CCSVI.

Switching to the question of diagnosis and treatment, I'm getting more and more concerned about people flying all over the world to get treatment that is quite possibly temporary (angioplasty) or carries with it unknown but very possibly real and troublesome risks (stents). Again, I completely understand the desperation of those willing to spend tens of thousands of dollars, and travel thousands of miles, to get treatment. I myself was lucky enough to get treatment locally, although my liberation procedure was unsuccessful (click here). But as the pool of treated patients grows, some obvious trends are emerging.

Even when initially successful, patients treated with balloon angioplasty are too often experiencing restenosis within weeks or months of the initial procedure. This means that they must either spend more time and money traveling across continents to be treated once again, or swallow their losses. Patients treated with stents are also experiencing problems with restenosis and clotting, and the very use of the currently available stents (which were designed primarily for use in arteries located within the chest cavity, vessels that differ dramatically in their anatomy from the veins associated with the CNS venous system), presents a host of potentially dire unknowns.

Dr. Zamboni has repeatedly stated that he's very wary of stents being used in the jugular or azygos veins, and when the doctor who treated me first presented my difficult case to Dr. Zamboni, Zamboni recommended traditional open neck surgery (as in, slicing and dicing) rather than stenting. Many patients have been stented for CCSVI successfully, but once those stents go in, they're in there for life, and nobody knows what affect the stresses of bending, stretching, and torque that the stents will experience in the neck will have as time passes. Stents specifically designed for use in the veins associated with the CNS are a must if CCSVI does indeed prove to be fact rather than merely theory.

Patients considering the liberation procedure must also keep in mind that not all patients treated see benefit, and some have even reported getting worse after treatment. We've all seen the miracle videos on the Internet, but people on whom the treatment had no or negative impact generally don't make videos for YouTube or show up on the various patient forums. Therefore, what we see and read on the Internet is extremely skewed towards the positive. Between patients who have contacted me through this blog and others that I know personally, I'm aware of quite a few people who have received absolutely no benefit from the procedure. Of course, given the heterogeneous nature of MS (the disease is very different in different patients), this shouldn't come as a surprise, but patients need to be keenly aware that the liberation procedure in its current form is not always the panacea that its most fervent advocates often assert it to be.

Another important consideration for those patients who do decide to pursue CCSVI treatment is the experience of the doctor doing their procedure. Most Interventional Radiologists (the specialists who do endovascular procedures) have far more experience treating arteries than veins. In fact, the CNS venous anatomy has been so little studied that no definition of "normal" has been agreed upon, and this anatomy can and does vary widely from patient to patient.

Furthermore, CCSVI is not limited to only one type of abnormality; a multitude of abnormal findings have been discovered in the jugular and azygos veins of MS patients. These abnormalities include vein narrowing, abnormal and dysfunctional valves, anomalous membranes, and even septums that divide the blood vessel in two. Many doctors just starting to do liberation procedures will have little experience dealing with this variety of abnormality. The physician who did my procedure, Dr. Salvatore Sclafani, has publicly stated that, despite 30 years experience doing catheter procedures, it wasn't until he had done the procedure on about 20 patients that he started to feel comfortable with the "art" of liberation, and that he was learning copious amounts with each patient he treated.

Undoubtedly, as more and more patients undergo the procedure, the methods and equipment used will be altered and refined, and procedures done a year from now will likely be much more sophisticated than those that have been done to this point. Although the idea of waiting for treatment is abhorrent to many patients, it may actually be in their best interests to allow doctors to gain the experience necessary to perform the liberation procedure effectively, safely, and with long-lasting results. We are in an age of discovery, and the book on CCSVI and the best ways to treat it has only started to be written.

In short, what we don't know still vastly outweighs what we do know about CCSVI and its role in MS. I personally believe that CCSVI will prove to be a major piece of the MS puzzle. I don't believe that it will be THE answer for all MS sufferers. The promise of CCSVI is tremendous, and in conjunction with advances being made in stem cell therapies, a new age in the understanding and treatment of MS could very well be dawning. But as tedious and frustrating as it might be, we must let the course of science wind its way towards definitive answers. Those who feel they cannot wait and choose to be pioneers in the treatment of CCSVI, would do well to remember the experiences of the pioneers who settled the American West. Some made it to California, struck gold, and became rich beyond their wildest dreams. Others, like the Donner Party (click here), became hopelessly stranded en route, and suffered disastrous consequences.

Due to the nature and speed of my disease progression, I decided to follow the trail blazed by the first and bravest pioneers, and underwent the liberation procedure, although I made it clear that I would only agree to balloon angioplasty, and would not consider the use of stents (my doctor was in agreement). I may revisit that decision as my disease marches onward. Each patient must decide for themselves their tolerance for risk, but hopefully, as the saga of CCSVI continues to unfold, those risks will be considerably diminished. At the very least, the issue of CCSVI has pushed researchers to look beyond the autoimmune theory, and that alone is a very good thing.

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Thursday, June 10, 2010

More Bits and Pieces (Including a Chance to Win 100 Grand)

Well, it seems like the past few days have brought a blizzard of interesting MS related items my way, so here's another collection of tidbits, offered up for your interest, education, and enjoyment...

  • I've decided to stop my experiment with Ampyra (click here for info on Ampyra). Although the drug did seem to give me a slight increase in strength, it also left me feeling lousy; upset stomach, chills, kind of jittery, just generally blech. I'm quite disappointed, because, as I said, I did feel a slight but noticeable increase in strength, but after consulting with my neuro's office, I decided to call it quits after two weeks. It's been about three days since I last took Ampyra, and all of the negative side effects (which kind of felt like the flu) have resolved. The slight benefit I got from the drug just wasn't worth it. So, that's the news on the legal drug front.
  • On the illicit drug front, I finally decided to see what all the hubbub about medical marijuana is about, since I've had a lot of trouble sleeping through the night for the last few months because of spasticity and the pain in my joints caused by Avascular Necrosis (click here for info on Avascular Necrosis). Every night has been a restless saga of falling asleep in one position, and then after an hour or so waking up because of the discomfort and spasticity to painfully change positions, only to do the whole thing all over again in another hour or two. Doesn't make for a well rested Wheelchair Kamikaze. In fact, it makes for an unpleasantly cranky Wheelchair Kamikaze. I've never really enjoyed the marijuana high, even as a teenager, but since I keep reading that Mary Jane can do wonders for spasticity and chronic pain, and might even have neuroprotective properties, I procured some of the demon weed, and have taken one strong hit a few minutes before going to bed for each of the last three nights. Happy to report that I've slept better under the influence of reefer than I have in months. I'm now going to insist that Karen decorate our apartment in blacklight posters and lava lamps, and I'm going to start using the word "groovy" to an annoying degree. Medical marijuana is groovy...
  • The groovy NMSS has sponsored a series of groovy MS patient video profiles called "We Keep Moving" (click here for the groovy website), and sent a groovy video crew all over the USA producing groovy short video pieces highlighting the very compelling and groovy stories of 10 different groovy MS patients. The 10 groovy videos were shot over the course of 10 groovy weeks, so this was an intensive and very groovy creative endeavor. The team that produced the videos (groovy Producer Kate Milliken, groovy Photographer Amelia Davis and groovy Director Jason DaSilva) are all groovy MS patients themselves, so in addition to their considerable groovy professional talents, they brought the groovy compassion, groovy empathy, and groovy understanding shared by groovy fellow patients to the project. Definitely recommended groovy viewing.
  • Okay, enough with "groovy". All grooviness aside, the above videos are really, really good, and kudos go out to all involved. I strongly recommend that everybody click on the above link and check out the "We Keep Moving" project.
  • While we're on the subject of videos, Canadian television network CTV has produced another video news piece on CCSVI, this time profiling a patient who traveled to Poland to undergo the Liberation Procedure (click here for video). Again, highly recommended viewing. I plan on doing a longer essay expressing my thoughts on the current state of CCSVI, which I should be posting here on WK within the next few days. Be on the lookout...
  • The latest edition of MS In Focus, put out by the Multiple Sclerosis International Federation, is now available online (click here). I found this issue especially interesting, as it features complementary and alternative medical approaches to the treatment of MS, including acupuncture, LDN, cannabis, and others. All in all, a very good overview of treatments that could be of benefit to MS patients, most of which fall outside of the mainstream medical narrative.
  • Wheelchair Kamikaze readers in the Seattle, WA area who want to help the cause of CCSVI research (specifically, the University at Buffalo's Neurological Analysis Center, which is doing a variety of CCSVI related research-click here for BNAC info) and have themselves a grand old time while doing so can attend a fundraiser at The Pink Door, a restaurant owned by MS patient (and WK reader) Jackie di Roberto, who was nice enough to send me a physical invitation. I wish Seattle was closer to New York, because it looks like the fundraiser will be quite the shindig, complete with food, wine, and entertainment that will include trapeze artists, musicians, tarot card readers, and stilt walkers. (Click here for more info)
  • About.com's always informative MS channel features an article this week that covers how to go about finding a new MS neurologist if you are unhappy with your current one. A common theme among almost every MS Internet forum I've ever been part of is "I hate my fracking neurologist!", which is truly tragic, since as sufferers of a chronic and thus far incurable disease, we are locked in a long-term relationship with the doctor who manages the care and treatment of our illness. Many patients, it seems, feel trapped in a dysfunctional relationship with their neuro, but feel overwhelmed at the prospect of switching physicians. Written by Julie Stachowiak, who wrote the recently published book "The MS Manifesto", which received the coveted Wheelchair Kamikaze stamp of approval in my last post, this article gives sage and practical advice on breaking up with your current neuro and choosing a new one. (Click here for article)
  • Finally, here's the "How to Win $100,000" part. The Multiple Sclerosis Research Center of New York (click here for info on the center) is holding a fundraising raffle, in which 2000 tickets will be sold at $100 a piece. The proceeds of the raffle will be split between the Research Center and the lucky person whose ticket is drawn as the winner. So, everyone who buys a raffle ticket is not only helping the MSRCNY do cutting edge MS research (which includes looking for disease markers, developing novel treatments for MS, and doing pioneering work in neuroregenerative techniques), but is also giving themselves a 1:2000 shot at winning $100,000, which are far better odds than the chances of winning an equal amount in any typical state run lottery. Additionally, for those in the New York City area, the center holds an annual patient symposium, which this year will be held on October 10, and will cover topics including oral medications, CCSVI, myelin regenerative therapy, naturopathic MS treatments, and MS across the lifespan. The cost of attending the symposium is a whopping nothing; it's free. I'm a patient at the International Multiple Sclerosis Management Practice, which is the clinical arm of the Research Center, both of which are run by Dr. Saud Sadiq, a well-known researcher, terrific doctor, and all-around good guy. For more information on both the raffle and the symposium, please contact Pamela Bloom at 646-557-3858.

That's it for now...

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Friday, June 4, 2010

Bits and Pieces

Here are a couple of things that have caught my attention over the past week or so, and some new photos I added to the Wheelchair Kamikaze gallery. Sorry, no attempts at profundity this week, just a few things I hope you'll find interesting/helpful/entertaining...

  • About a week and a half ago, I started taking Ampyra, the recently approved drug that's supposed to help MS patients with mobility, but so far I have nothing major to report. I guess this is one of those good news/bad news situations, since one of the drug's major side effects is seizures. So, I really haven't seen any noticeable improvement in my strength or mobility, but I haven't had any seizures, either. Woo hoo... The Today Show did a feature piece on Ampyra, and focused on an MS patient whose ability to walk improved dramatically after taking the drug. Her doctor characterized the patient as a "dramatic responder", but, though I'm trying to do my best Humphrey Bogart, it's looking like there will be no drama for me... Incidentally, though the retail price of Ampyra is an eye bulging $1800 per month, my insurance company approved my taking the drug with a co-pay of only $40 per month. So, I'll refrain from bashing the insurance companies this week, though I still firmly believe that those who occupy the executive offices of such firms all have cats eyes and cloven hooves... (click here for the clip from The Today Show)

  • When I was first diagnosed with MS, back in the spring of 2003, I read a bunch of books on Multiple Sclerosis. Some of them were decent, others just loads of crap. Since then, I haven't really been interested in reading MS literature, but I recently learned that Julie Stachowiak, who writes the always erudite, entertaining, and well-informed MS channel on About.com (click here for channel), published a book entitled "The Multiple Sclerosis Manifesto: Actions To Take, Principles To Live By". I decided to pick up a copy, and I'm happy that I did. Dr. Stachowiak (she has a PhD in epidemiology), who is herself an MS patient, has written a book that not only details the latest and greatest in the science and treatment of MS, and how best to manage the sudden status of being a "patient", but is also full of practical suggestions and philosophies on how to live a meaningful and fulfilling life despite the fact that MS has forced its way into it. In fact, the book could surely benefit even those not suffering from chronic illness, as the wise advice it offers, written in a highly personable and very readable manner, should be of value to any human being attempting to make their way down the twisting and bumpy road of life. The Multiple Sclerosis Manifesto definitely gets the Wheelchair Kamikaze stamp of approval (click here to view book on Amazon)...

  • The ever inventive folks at Honda have come up with this neato device, which they've lyrically named the "U3-X Personal Mobility Concept". It looks like quite the incredible gizmo, and with a few modifications could definitely help those with mobility issues. I don't know that in its current form it would be of much use for the severely disabled, but its ability to balance and move laterally as well as forwards and backwards is really amazing. The video itself is goofy beyond belief, but it will be interesting to see if Honda actually develops this into a workable consumer product. Perhaps at some point in the future I'll have to rename this blog “U3-X Personal Mobility Concept Kamikaze". Big shout out to Wheelchair Kamikaze reader and fellow sports car enthusiast Charlie (Tuna) for bringing this to my attention...

  • I've added some new photos to the Wheelchair Kamikaze photo gallery, which is comprised entirely of photos I've taken with a camera mounted on my wheelchair. The below photos were all taken in Central Park. Click on the thumbnails to view a larger image.

juggler-balls-cu-1.jpg image by marcstck

homeless-final-1.jpg image by marcstck

chess1-1.jpg image by marcstck

drummer-1-1.jpg image by marcstck

fairy-full-1.jpg image by marcstck

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