Monday, January 31, 2011

CCSVI (and Me) on the Radio, and an NMSS CCSVI Research Update

Logo of NPR News.Image via Wikipedia

Last October, a reporter from radio's version of Public Television, National Public Radio (commonly referred to as NPR), conducted a telephone interview with me about CCSVI. I came to her attention because of the many posts on CCSVI that have appeared on this blog, in addition to the fact that I'd undergone CCSVI treatment in March, 2010. A full list of my CCSVI posts appears in the left column of this website, under the heading "CCSVI Related Posts".

Originally, the NPR piece was supposed to air on November 1, but the air date was pushed back pending further research being done by the reporter, Gretchen Cuda Kroen. I was told the completed piece would run sometime early in 2011, but was never given a firm air date.

Low and behold, this morning my phone began to ring quite early, with friends and family reporting that they had heard me on the radio. As I have steadfastly sworn off the morning hours since MS forced my "retirement" from the working world, and I tend to rise at the crack of noon, I was happy to learn that the report was available on NPR's website (click here). I was quite honored to find that the other two interviewees in the piece are both highly distinguished physicians conducting very important research on CCSVI, Dr. Robert Fox of the Cleveland Clinic, and Dr. Robert Zivadinov of the Buffalo Neuroimaging Analysis Center. All I did was have a catheter snaked through my jugulars...

Just a few comments on the report…

While it's fantastic that CCSVI is finally getting some media attention here in the United States, I think the report overstated some of the hazards involved with undergoing CCSVI venoplasty. It talks about "several patients" dying from blood clots resulting from the use of stents in their jugular veins. In truth, we know of one patient who died of an aneurysm most likely brought on by the anticoagulant drugs she was put on post procedure, and another who did die from a clot that developed in an implanted stent. The use of stents in treating CCSVI has come to be a cause of concern to many of the doctors currently doing the CCSVI venoplasty procedure, and many, if not most, are now primarily using balloon venoplasty in treating patients. Thus far, no patient deaths have been attributed to balloon venoplasty, although cases of thrombosis (clotting) and restenosis (surgically opened veins collapsing once again) are acknowledged problems.

The piece quotes me as saying that I wished I had waited for more research to be done before undergoing the procedure. While this is true, it is not due to safety concerns, but rather to the fact that mine is a complicated case, and the techniques being used to treat CCSVI are in a constant state of evolution. Procedures being done now are much different than those done only six months ago, and those done six months from now will without doubt be all the more sophisticated. This is why I've recommended in previous posts that patients with milder and less aggressive disease might want to consider holding off on getting the procedure done, because their chances of longer lasting success will certainly increase with time. I do agree with the piece's warnings about medical tourism, because many patients have indeed spent large sums of money, and traveled many thousands of miles, only to find that if they did get benefit from the procedure, it was unfortunately temporary. It's also important to remember that a substantial number of patients do not get any benefit at all from the procedure, and expectations must be kept realistic.

One factual error included in the piece is that Dr. Zivadinov believes that the venoplasty procedure is unsafe, which is clearly not the case. His research group at BNAC is currently conducting a treatment trial which recently increased the number of patients included, a strong indication that he does not consider CCSVI treatment as prohibitively dangerous. I contacted a representative from BNAC, and they assured me that Dr. Zivadinov in no way intended to infer that CCSVI venoplasty is a hazardous undertaking.

It would've also been nice to have heard from a patient who, unlike me, had experienced real benefit from CCSVI treatment, as many have. Since the piece is only 5 1/2 min. long, I'm sure the reporter was limited in what she could pack into it, and we all know that a full discussion of CCSVI and its related issues could only properly be covered in a much longer exploration. Hopefully, this report will be the tip of the iceberg, and will spur the rest of the US media to finally start doing its job, and get quality information out to the public at large. The mainstream media's complete silence on this issue has been egregious, but I wouldn't hold my breath in anticipation of an onslaught of reporting.

In other CCSVI related news, the National Multiple Sclerosis Society released its first six month report on the CCSVI trials it funded this past summer (click here). Though the report does not contain any trial results, it does provide much information on the nuts and bolts of the projects funded. Although it's unfortunate (in my opinion) that none of the NMSS funded projects is a treatment trial, it is encouraging to read that many of the researchers involved have undergone training in the specific methods used by Dr. Zamboni to detect CCSVI, and have acquired the specialized equipment required to do so. I look forward to the Society's next research update six months from now, which hopefully will include some of the initial data being gleaned by these studies.

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  1. Heard you today on NPR - wow! You are a great spokesperson for us. Thanks for fulfilling this important role so well.

  2. Thanks for the clarifications and corrections. I for one am encouraged by Dr. Zivadinov's work at BNAC.

  3. I had linked your interview to my FB page (I know, you don't do FB) and I will link this blog too so all the clarifications are included. Still a great interview and wonderful to hear your voice ;)

  4. As soon as my daughter forwarded the NPR piece to me and I read it, I assumed you would weigh in shortly. Thank you for your clarification. Finally, CCSVI is getting coverage, such as it was.

    Having a similar level of disability as you, I am having a follow-up appointment this week in Brooklyn. Also thanks to you for the referral a year ago. I hope that you will be updating on any new plans for your treatment. You give so much, Marc, I hope you get to receive some benefit soon.

    Thank you for being so important to many, and especially to me.

  5. I have only read a few of your posts so far, but am SO glad that I found your blog! I have recently started my own blog after being diagnosed in September 2010 ( I have been researching CCSVI a lot lately, ever since it was brought to my attention by sister who has a doctor friend who is hoping to begin providing the procedure to patients. Thanks for sharing your experience and knowledge!

  6. Thanks for clarifying the NPR reporting which was,in my opinion, biased since as you point out there were no positive results mentioned or patient successes interviewed. Dr. Fox was the only positive person shown in the story (not through the fault of you or Dr. Z) so at least some good information got out there. To say there have been 'several deaths' is not only inaccurate it's alarmist journalism. I expected more from NPR which I listen to all the time.

    For one IR's view on stents and restenosis, I refer you to a summary of Dr. Joseph Hewitt's presentation at a CCSVI meeting in Seattle last week.

    I too was glad to see the protocols for testing were reported by the MS society and await some data. Their announcement was really a non-announcement.

  7. Marc, I heard the report and thought that it was a decent first step in terms of national exposure for CCSVI and the treatment thereof. I also think it would have been better to balance the report with a success story, but I think that will happen over time. I work for an NPR station, so I am proud that we are first out of the block.
    But mention of CCSVI was first done nationally on the APT distributed program Second Opinion--by me. Here is the link from the program which aired in October of last year, taped in May:

  8. Great panel discussion, Vladimir. It seems like we have a similar disease course. Avonex (flu-like symptoms every weekend for 4 years), currently Tysabri, 2 siblings with MS (not parent), and I'm now dependent on a cane and sometimes a walker to get me through the snow. And if you're Serbian, I am too!

    Risk-taking is a decision that should be made by patients. Time is not on my side (I'm 52) and the thought of being dependent on others is at the forefront of my mind and makes me crazy.

    Good luck if you try the procedure. I was tested and my veins were found to be a-ok. I would have had the procedure if anything turned up. I am now headed to the Mayo Clinic to get their take on anything else I can do to improve my quality of life. Clinical trials? Sign me up. Anything is better than watching myself deteriorate.

  9. The show was taped in May. I had the treatment in Albany in July. I've experienced a few benefits: better heat tolerance, less fatigue, better bladder control, etc..
    Question is will this help mitigate progression.

  10. It seems like the less fatigue, improved heat tolerance,and improved balance have been consistently reported for CCSVI treatment. I haven't read much on improved mobility. Are you on Tysabri now, Vladimir? Have you volunteered for clinical trials?

  11. Thanks for the follow-up info on CCSVI. I have been discussing it with my MD who is open to thinking about it but not doing it. He will be happy to hear I am in the "wait a bit" category. (Though living in Georgia the improved tolerance to heat is certainly enticing...)

  12. I was surprised at the slant of the NPR story. I signed up for the Albany trial but backed out after hearing stories of follow-ups, re-do's, etc. I'd rather do it closer to home (Boulder, CO), so I'll wait for it to come to me. At the moment, I'm pursuing the Chinese medicine approach, which makes intuitive sense to me. I'm currently relying on Amandatine for help with energy, knowing that it will have an "Awakenings"-like tapering off at some point soon :-)

  13. I recently started following your blog and was a bit disappointed by NPR's slant on the topic of CCSVI. I've had RRMS for about 4 years, and am currently seeking the procedure. Yes, it's new. No, it hasn't been evaluated in an ideal number of subjects. But MS doesn't wait for science. It attacks at will, and I'm not about to sit here on my crippled duff and wait ten years for the research to jump through all of the FDA's hoops.
    I went many years without a "relapse," but I'm having a nasty one right now. I was supposed to graduate with my master's this spring, and then begin a PhD program next fall. At this rate, I'll be lucky to graduate by next fall. The way I see it, even if the procedure doesn't work, it's worth a try. Opponents love to cite the 2 deaths associated with CCSVI, but they conveniently ignore the countless deaths associated with many other experimental MS treatments.
    Thank you for continuing to speak out about CCSVI!

  14. Here is an interesting concept concerning MS.