Sunday, July 17, 2011

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

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

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

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

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

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

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

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

Click here for part two

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26 comments:

  1. Stunning photograph which I thought was an oil painting until I read your post. Wonderful analogy to MS.
    Judy

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  2. Marc,

    You are truly a kami (divine) kaze (wind).

    As you may know, the word comes from the storms (probably typhoons) that the heavens threw at invading Mongolian fleets ending the last external threat to Japan and as such represent any divine force that fends off defeat against all odds.

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  3. I'm sorry I did not get a chance to meet you at the Conference. I was very hopeful listening to each of the practioner/researchers give us an update. You are very inspiring!

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  4. Marc, love seeing your photo work!! This one is a gem and the words you've put to it are symbolically rich!
    best, Barry

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  5. Hi Marc,
    What an amazing photograph and your analogy was perfect. Is there a video of your talk?
    Take Care,
    Joanne

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  6. Thank you for the way you've described our "problems". Can't wait for the rest of your presentation. Eleanor

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  7. I was at the symposium.. Wow- there was BS being flung around that room...
    Two interesting tidbits regarding Marc & Sclafani, one Marc openly stated they're not even sure he has MS, and secondly, Sclafani didn't do anything for Marc due to a muscle pressing on his veins.
    So exactly what was the point of your presentation Marc? There was none!

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  8. Thanks for all of the wonderful comments, folks. They are very much appreciated.

    Anonymous-anyone who's regularly read this blog knows that my MS diagnosis is up in the air, and that my attempt at CCSVI treatment was fruitless. However, the assertion that this has any bearing whatsoever on the presentation I gave at the symposium leaves me befuddled.

    Though my MS diagnosis may be called into question, my experience as a patient suffering from a progressively disabling disease, no matter what its name, is identical to that of an MS patient (which I still may be) suffering the same disease course.

    As for my CCSVI "failure", this too has nothing at all to do with the point of my presentation, which is primarily that we are early in our understanding of CCSVI and how to treat it, and that the hypothesis provides hope to a patient population desperately in need of that commodity.

    Sorry if the mysterious nature of my diagnosis and my lack of benefit from the CCSVI treatment procedure somehow invalidates my presentation in your view, but the emotions I expressed regarding dealing with a chronic disabling illness certainly are not the products of my vivid imagination, and for over seven years I was told that I did have PPMS. I was very careful to make it clear that CCSVI treatment does not work for everybody, a point to which my own diagnosis bears no regard. In fact, some of the thinking about my diagnosis is now that it may be of primarily ischemic etiology, which would make the question of a possible vascular connection to neurologic disease quite pertinent in my case, whether what I have is called MS or not.

    Thanks for your input, though. I genuinely welcome all opinions.

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  9. Hey Anonymous:
    What was the point of you going to the conference? There was none!! What are you doing to inform victims of MS? Do you even have the disease? Read all of the informative blogs that The Wheelchair Kamikaze writes regarding CCSVI. As a matter of fact, read all of his blogs. Maybe you'll learn something!

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  10. Marc, I have read your blog and at one time found them interesting. Somewhere down the road your thoughts on the DISORDER known as ccsvi (which you erroneously made it sound as if it were the treatment its not) got muddled and floundered. That's when the respect went out the window.
    Also, since it is so unclear and you "employee" a large hosts of doctors trying to actually figure out if you have MS, maybe refrain from calling those of us with a defenitive diagnosis your MS brothers & sisters.
    As you stated Marc, your atypical anatomy didn't allow Dr. Sclafani to do any treatment on you, as you sheepishly looked to him at the symposium to see if now with Dr. Sclafanis new found confidence in his abilities (Sclafanis words) he would be willing to try again on you.
    What exactly is he trying? Your diagnosis of MS isn't defenitive and your atypical anatomy hasn't changed Marc. Oh, is Dr. Sclafani going to go in through the right side this time which he said he won't do? He only does the left side, and firmly stated "he will NEVER do the procedure in a hospital"


    My point of going to the symposium was to gather information and report all of the inconsisentices, and let me tell you the inconsistencies were there in full force.

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  11. To the very kind person who said "Hey Anonoymous" the day was slated as a MS Education Day, so being a MS pt I went! As I said in my previous comment to Marc, I went to gather information & report the inconsistencies.I am very active in the MS community, because I have MS.

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  12. Anonymous-sorry that you have lost respect for my blog posts, but I've always carefully noted the difference between the alleged disorder known as CCSVI and the procedures used to treat it. I don't think I could have been clearer in writing about the issue, and I respectfully disagree that my thoughts on the issue have become "muddled and floundered".

    Having been given an MS diagnosis over eight years ago, and having a "host" of physicians now question that diagnosis but offer no reliable alternative, I still self identify as an MS patient. If you'd prefer that I don't consider you a brother or sister, I'll certainly scratch you off of my Christmas card list.

    As for whatever "sheepish look" I might have assumed, I may have glanced at Dr. Sclafani to answer some specific medical questions that, my not being a physician, I'm unqualified to answer.

    Dr. Sclafani is willing to treat me again because, after undergoing Doppler Ultrasound at his facility, my veins still appear to show the abnormalities now classified "CCSVI". If this hadn't been the case, he wouldn't treat, and I wouldn't want to be treated.

    For the record, during my first procedure with Dr. Sclafani, he did enter the right side, and changed to left side entry many months after I underwent venoplasty with him. I was one of his earliest patients, and his ability to detect and treat stenosis and other abnormalities has increased many fold since I was on his slab.

    Furthermore, studies out of Buffalo (BNAC) indicate that MS may not be the only neurologic condition associated with CCSVI. Given my abnormal Doppler Ultrasound and the data from the Buffalo studies, along with the possibility that I do have an atypical form of PPMS, having another go at venoplasty is hardly a far-fetched idea. Dr. Sclafani would not agree to perform the procedure without some evidence of venous abnormalities present, and if I do undergo another venoplasty procedure, his technique and methodology will be far different than those used 15 months ago.

    I certainly wish you would have brought up these issues at the symposium, during the ample question-and-answer period that followed my presentation, as you could have added some issues of substantial interest to the proceedings. It would have been much easier to address these issues in person, than to try to clarify the situation in the comments section of this blog.

    Feel free to e-mail me at WheelchairKamikaze@gmail.com if I can be of any further assistance.

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  13. Ample question and answer section? WHAT!! Dr. Sclafani avoided questions and skirted around most issues. And trust me if I got up and said what I wanted to say I would have been escorted out!
    We will be attending future symposiums/conferences so we will indeed make it a point to ask MANY questions...

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  14. Anonymous...
    Please email Marc with your rants, as entertaining as they are, I would rather not hear your uneducated opinion. Marc has been a Godsend to provide information to us with MS and to help us educate ourselves so that we can make informed decisions about our own treatment. He has always been presented from the point of view of an MS patient and been up front about his diagnosis.
    Your comments are not welcome here when they come from a place that is uninformed. Take your frustration with your disease somewhere else.

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  15. Actually it was stated by Marc and I quote "Thanks for your input, though. I genuinely welcome all opinions."

    July 18, 2011 4:00 PM

    So please do not tell me what I can and can't say. These are not rants they are legitimate questions and observations we made while at the symposium.

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  16. Dear Anonymous,
    I'm sorry that you are so frustrated with this horrible disease that you seem to be taking it out on all the wrong people. It's a horrible situation. Mentally alert and yet physically a mess - watching miserable self absorbed people walking around without a care in the world! I hope that they find a cure - or at least, a control for MS in your lifetime. In the meantime, don't shoot the messenger. And remember, there is always someone a lot worse off then us. Keep thinking positive thoughts - I'll keep you in my prayers.

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  17. Marc, as a fellow patient in the 'CCSVI paradigm shift' I have had great success with the treatment done 1/25/2011 at the Rhode Island Vascular Institute as part of a clinical trial. I am interested in seeing this develop further so that ALL ms patients can experience the same AMAZING results.

    I have many friends who were also early pioneers and some of them did not have sustained results for various reasons. One in particular [a talented musician] was done very early in the discovery process and had significant problems because the left jugular was so damaged by the disease process that it was beyond repair.

    For his, yours and everyone's sake please know that I will work tirelessly with all my renewed strength to insure that this major shift in thinking does not go away.

    I so much appreciate you and your approach to this considering you have not had the physical benefits that I and so many others have had.

    My personal specialty is in the 'spiritual side' of encouragement. I write articles to inspire others to 'faith' each week and will continue to encourage people through a simple tool known as "The Physically Challenged Ministry" on FB as long as I have the ability. How can I help? Bill Sullivan

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  18. Marc--that photograph is simply incredible--surreal and gorgeous...and your essay allowed me to see it in a new "light." Jeff and I are very bummed that we missed your presentation and meeting you, but delighted to know that your great gifts are reaching a larger audience. xo, Joan

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  19. What was the point of Marc's presentation if he does not have typical CCSVI and he may or may not have MS?

    Art and poetry. Well-thought-out thoughts well-presented.

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  20. The photo is beautiful!

    I'm sorry to have missed your presentation at the CCSVI Patient Ed day.

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  21. 1) What a beautiful Photograph, Marc! 2) Anonymous (Anonymous yes, but you know who you are), sounds like you want a refund. Give me an address and tell me how much to send you. You can spend it on an anger management class. 3) To Anonymous again: Since you ask, "So exactly what was the point of your presentation Marc?", I can only wonder, were you awake during the presentation? I was not there but I read the transcript of part 1? It seems pretty clear that Marc made the point that CCSVI offers a lot of hope but is still in its early stages. He makes this point by use of an analogy, an image of a rusting decaying bridge. Whether he has the exact same illness as you is rather irrelevant, as the result is the same frustration and difficulties with going about his daily life, and the hope in CCSVI is the same for a patient with MS or a patient whos diagnosis is unclear. 4) Marc, Buddy we must Kick the Gong Around one of these days...

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  22. Don't we as MS sufferers all present differently? Not one of us has the same symptoms as the next.
    I know this for a fact as my sister also has MS & she is not anywhere near as disabled as I am. So if Marc does or doesn't have MS is not really as important as the fact that he has a DEBILITATING disease that presents AS MS & CCSVI did not help him just as all the CRAB drugs haven't heplped me. I find your blog inspirational whether you have MS or not! Blog on marc! KIM

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  23. Patricia Butler (Trish317)July 21, 2011 at 11:35 AM

    Amazing photograph....very poignant analogy.

    I'm always grateful for your knowledge and insight, Marc. Your contributions are appreciated by so many, and you touch more lives than you may realize. Sending you prayers and good thoughts for more answers for you....and for everyone.

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  24. If Meta Gadget offered a "most controversial medical blog" award I'm sure you'd get it. This isn't and shouldn't be a controversial topic. If there are people out there that might benefit from the CCSVI treatment then it deserves to be investigated to it's fullest. Too much research money and time is being spent on treating the symptoms of these insidious diseases and not enough on trying to cure them. Thank you Marc for your efforts to further the cause.

    Charlie

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  25. Beautiful analogy with this amazing photograph Marc!

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