This Is MS Multiple Sclerosis Community: Knowledge & Support

I was surprised to be invited to appear as a guest on the "Connect with Mark Kenney" show Thursday night. Upon returning home from a pain management Dr. appointment, I received a note from one of the show's producers on my blog, and two hours later I was sitting in a small studio staring into a camera being interviewed live on television! Yikes! I think the interview went well, although I always hate the way I look on video, kind of like a bloated crazy person. I've got to lay off the sweets… And I need to have a word with a woman who cuts my hair…

Anyway, here's a link to the show, if you move the slider forward to 45:19 you'll get to the start of the CCSVI segment.

http://tinyurl.com/marcccsvi

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Marc
www.wheelchairkamikaze.com

They say the camera puts on 10lbs of crazy.

Thanks for sharing the interview.

tilt

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...and I for one, welcome our new Neurologist overlords!

My before and after CCSVI treatment video http://www.youtube.com/watch?v=RhosV4_DvWw
Visit my Lego Amusement Rides website http://www.brickshelf.com/cgi-bin/gallery.cgi?m=Bolliger

Hey Mark, good interview. Just FYI, your link is not going directly to the show, I had to hunt around to get it to play.

Yes, it works fine if you cut and paste all of the link into your browser. For some reason, the last part of the link is not included in the "[url]". I haven't looked, but if you have it right it should be:

"[url=the_long_http_etc_which_is_not_very_readable_anyway]some human readable stuff if you want[/url]"

The thing, if you use a short url, can look like: "click this for a laugh"

or, more simply:

"[url]http_stuff[/url]"

which can get long and unreadable, and line breaks sometimes corrupt it when it's too long.

...The video is good; you tried to stay clear of the hysteria. Good stuff.

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"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'_MS' is over - if you want it
Patients sans/without patience

okay, I fixed the URL, replacing it with a "TinyURL". Here's the link: http://tinyurl.com/marcccsvi

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Marc
www.wheelchairkamikaze.com

Great job Marc. I think you make an excellent spokesman for PWMS.

BTW you don't look either overfed or crazy.

Dave

Hey Marc,

You did good! The camera definitely distorted you. But what you said is what matters.

Michelle

Very nice interview ! What did your hair-dresser is really naughty. Fortunately your still so cute !!

If I remember it was 44:30 where the ccsvi article showed up.

Fantastic interview, especially with no prep time on your part.
Since you are effortlessly good-looking, your hairdresser can do you no harm.

Great answer on stents, since the FDA alert made it sound as if stents are more common than they are, but as you said, doctors have been moving away from using stents. While the patient can "Just Say No" to stents, I think it's smart for a patient to ask their IR beforehand in what percentage of patients the IR uses stents, and if the IR's response is 3% or less, then it is reasonable to trust the IR that he would only choose stents for your case if you are in the 3% who needs stents.

What a tough question to answer: you've had the procedure, and you're still in a wheelchair? The answer could've made CCSVI venoplasty look like the snake oil mentioned later, and it did not, which is good. I don't know that it got across to the interviewer that all patients have different degrees of disability and different disease subtypes and different presentations of CCSVI. But that seemed like what you were conveying with the discussion on PP MS being less responsive than RR MS to traditional MS treatments, and to your CCSVI being a complex case. And you are thinking of having a second procedure? You have access to one of the best over in Brooklyn...

I agree with your assessment of the FDA alert, and the hope that it will spur research, and that the research is needed.

The interviewer said this at the end, "When it's hope versus science, hope is going to win." Hope vs science? We can have both. CCSVI arose out of Dr. Zamboni's scientific research, and our hopes lie in the research that is underway.

I thought it was a great interview! You came across as very informed, calm, collected, and like someone that knows what they are saying. Frankly, I thought you looked like a college professor, and one that might get their student's attention to boot

Thank you for all you do!

Thanks for all the positive feedback. Still, when I look at the video, all I can see is a big Charlie Brown head with a bad haircut.

The whole thing was really a very interesting experience. I've watched so many similar interviews on CNN, and worked for 20 years in the TV/video industry, primarily as a producer/editor, but never imagined that I would be on the other side of the camera. I think it was a good thing that I had very little notice before hand, so I couldn't overthink things.

I first spoke to the producer of the show at about 5:30 PM, and I had a chiropractor appointment at 7 PM. They wanted me in the studio by 8 PM, so my wife and I kind of did a mad dash across New York City, with her pushing me in my manual chair because we were taking taxis all over the place.

I expected that they would at least tell me what questions they were planning on asking, but the only preparation I got was a brief thirty second chat with the host of the show during a commercial break, using a hidden earpiece and the microphone attached to the camera. When I inquired what he would be asking, he just kind of muttered something about general questions regarding my CCSVI experience.

I wish they'd given me more time to explain some of the intricacies of CCSVI and MS, but the show is meant for a general audience, so they paint in very broad strokes.

I have been considering giving Sal another shot in my veins, but in the meantime I've been doing work with an Atlas Orthogonal chiropractor, and have been taking part in a study about AO and MS. So far, the AO treatments haven't seemed to make a difference, and my disease is definitely still progressing. I feel like I need to give it a little more time, though.

As I said in the interview, my situation is pretty complex, and I have some recent MRI images that seem to show the possibility of a soft tissue mass or strange set of blood vessels impacting my spine right at the point of my lesion, so that opens up the possibility of a whole different line of investigation. Then again, the NIH recently chimed in to tell me they decided I had "Solitary Sclerosis", based on a paper put out by the Mayo Clinic. Which kind of sucks, because of the seven people looked at by the researchers, one is dead, two are completely bedridden (EDSS nine), and the other four are rapidly progressing.

So things are as confusing as ever. At least it's never boring…

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Marc
www.wheelchairkamikaze.com

Did they perform an Upright MRI? There was a recent study which implicated that the Upright MRI was used to help target AO work. see the thread http://www.thisisms.com/forum/chronic-cerebrospinal-venous-insufficiency-ccsvi-f40/topic18068.html

Nice job Marc. I have been interviewed a couple of times and I find it very difficult to put my thoughts together in front of a camera. You did a great job.

Bruce.

I thought you did great and should consider doing it in the raw next time while singing Oh Canada.