Thursday, December 30, 2010

A Video Interview with My CCSVI Doctor

MRI image of a patient with CCSVI. Diagnosis: ...

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Sorry for the delay since my last post, but I've been a bit under the weather. Nothing serious, but as my fellow MSers know, just a touch of fever can really set MS symptoms afire. It's that whole heat sensitivity thing…

I'll be working on a new post in the next several days, but rather than leave everyone hanging, I thought I'd post this interview with the Interventional Radiologist who did my attempted CCSVI treatment, Dr. Salvatore Sclafani.

A quick recap for those who've discovered Wheelchair Kamikaze since my try at liberation: I underwent a catheter venogram procedure last March, which revealed that I do have a blockage in my right internal jugular vein, but, as with everything else about my disease, it's pretty strange. Unlike most other patients found to have the venous blockages associated with CCSVI, whose abnormalities occur inside of their veins, in the form of stenosis, valve malformation, or anomalous membranes, my blockage is caused by a muscle bundle outside of the vein pressing in on it, forcing it significantly closed. This blockage can't be addressed in the usual ways, with balloon venoplasty or with a stent, so further options are being explored.

I currently have tentative plans to undergo a second procedure with Dr. Sclafani sometime early in the New Year, to recheck my entire CNS venous system, as well as take another look at the blockage in my right internal jugular. Dr. Sclafani has learned much since I underwent my procedure nine months ago, as knowledge of CCSVI and how to treat it is evolving exponentially, almost by the day. This is why I've recommended in previous posts that those with milder symptom profiles and less aggressive disease should probably hold tight and wait 6 to 12 months before pursuing CCSVI treatment, since the procedures being done now are much more sophisticated than those done just a few months ago, and those done several months from now will be all the more refined. We'll also be discovering much more about the prevalence and impact of CCSVI in the coming months, as several trials start reporting initial results.

Unfortunately, my disease continues to progress rapidly, and I believe left unimpeded it will have me bedridden within the next 12 months, so I simply don't have the time to wait. Any port in a storm, as they say…

And so, without further ado, here's Dr. Sclafani, with a comprehensive assessment of the current state of CCSVI research and treatment, including an explanation of what CCSVI is, the methods used to treat it, the uncertainties surrounding the hypothesis, reasons for optimism, and the need for healthy skepticism and realistic expectations. BTW, I did not shoot this video…

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  1. The most rational presentation that I have heard up to this point. "Skepticism doesn't mean negativity" is what I'm taking out of this.

  2. Marc, thank you for your measured approach to CCSVI. Dr. Scafani is to be commended for his caution and I am glad that he is your physician. I wish you all the best in 2011 and look forward to your next post.

  3. Marc,
    That was really fascinating. Dr Sclafani seems to be both knowledgeable and realistic about CCSVI treatment. I suspect that you were the abnormal case that he was referring to. I,m confident that you are in good hands.
    I’m sorry to hear about the speed of your progression. I truly hope that you are wrong or that something can be done for you. Stay positive my friend. We need you.


  4. A very reasonable presentation by your doc, of CCSVI testing and treatment.
    Thanks Marc.

  5. Just think,more than a year ago there was no discussion of CCSVI, only meds for MS. My hope is that 2011 will bring accelerated knowledge, including the success of CCSVI, in the treatment of MS. Thanks for your continued updates on all treatments. May the force be with you, and may you continue to be our guide.

  6. Marc, Thank you for covering CCSVI so well in 2010, I'll call this CCSVI 101. Please have a Happy New Year.

  7. Thank you for posting this! I just love listening to Dr. Sclafani. He's so clear and rational and knowledgeable. His comparison with early vaccines is a perfect parallel to where we are now with CCSVI. I'm looking forward to meeting Dr. Sal next month at the ISET conference in Miami since I'll be there helping with the CCSVI Alliance information booth.

    His wise analysis of CCSVI, his positive outlook and his own enthusiasm for continued study and research fills me with hope. We need more doctors like Dr. Sclafani who will push this research forward. Best wishes to you Marc for the new year and for a successful 2nd procedure. Here's hoping 2011 will only give us more knowledge and more opportunities for the doctors to share what they've learned.

  8. It is always good to hear from Dr Sclafani; we all feel that he really cares about us and also respect his scientific mind. I can't think of anyone in the US whose update on the CCSVI situation I'd rather hear.

  9. This is an outstanding article and video interview. Thank you, Marc. Once again, you do us a great service.

  10. Wow, very interesting. I love Doctors that are interested in new theories and willing to explore them. I am going back to my Doctor in Germany when I discover that my Angioplasty is Restenosing. So far, I am doing much better than prior my angio in August, however, my balance is off a little and this is making me question things. My mind is still clear and this is the best part. As long as I can think clearly and do not constantly have to nap, I can live with things. I can't wait for research to progress. I love "liberation".

  11. I really hope that Dr. Sclafani can find a solution to treat your unusual blockage. It is great to hear that he is looking at options, and is going to recheck your venous system soon. I agree that "knowledge of CCSVI and how to treat it is evolving exponentially". Hope that you will reap a good treatment reward, and a health change for the better! Best to you in health and happiness in 2011!

  12. dearest Marc and Karen
    you mean so much to us
    all the very best to you both in the New Year
    from Canada with love
    Ruth-Ann and Dan
    hope Salvatore finds the special way for your "liberation".

  13. THANK YOU (& Dr. S) for continuing to establish way-points for this crazy journey!

  14. Wishing you a healthy New Year. Will pray for your procedure to be successful.

  15. Marc, I wish you and Karen a very Happy and Healthy New Year. I had the CCSVI procedure in December 2010, it was unique, like your case. but the LJV, RJV and Azygos are now flowing, TG.

    I'll pray for you and your next procedure. May all your dreams come true.

    PS: I love your blog, the pictures you take, and the videos. Thank you!

  16. Thank you for your posts on web!
    I wonder if you have tried any diet along the MS battle. I read Dr. Evers in Germany was quite successful in eliminating MS with a raw food diet 60 years ago. Strangely enough, the two books that he has published are almost impossible to find.
    Additionally, some doctors in US are advocating juice – vegans diet/cleansing. Is it stopping progression?
    I would appreciate your comments.

  17. Hi Marc,

    Thanks for sharing! I hope you can find some help. That progression rate is scary!! Stay positive as that is a big part of the battle.

    Take Care,

  18. Hi Marc,

    I've been following your blog for about a year. First of all, thank you very much for writing it.

    I'm especially interested in your posts on CCSVI (this may be how I found your blog in the first place, don't remember now). Like many MS patients (oh yes, BTW, I have MS, too) I am very hopeful.

    I wonder if have seen the recent paper by Zivadinov (Jan 15 2011). I found a link to it on Colin Rose's blog, through Google alerts. I've read Rose's earlier post on CCSVI, probably a year ago, also, and thought his arguments weren't convincing. But here he cites several papers that seem to contradict the CCSVI theory. Do you have an opinion on this?


  19. P.S. here is the link to the post that, in turn, links to the papers in question. I either forgot or subconsciously didn't want anyone to read Rose's blog :)