This Is MS Multiple Sclerosis Community: Knowledge & Support

Recorded at the Albany Vascular Roundtable, November 10, 2010, Dr. Michael Dake and Dr. Manish Mehta talk exclusively with the Alliance about the future of CCSVI research and treatment.
www.ccsvi.org

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Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
dual stents placed 5/09
CCSVI in MS

I watched this last night and I was really impressed! They are not only smart and well-spoken, you can really sense that they *care* deeply about what they are doing. What an amazing combination. Thanks for providing this video!

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Yeah, not sure what the situation w/new lesions is, Bob. Maybe restenosis? Maybe not. I hope Dr. Dake clarifies in the future. When Rhonda went back for her one year he'd seen about 20 of the now 24 one year club, and no one had new lesions, but that's obviously changed since she was there. Jeff's still good (no progression or new lesions), but we don't take it for granted. His fatigue has even improved since his 3 month and one year (now 19 months out) , as Dr. Dake mentioned, the RRMS people had even more continued improvement in MFIS numbers at a year.

Thanks to Randi for the interview and Marc for the excellent editing. We're lucky to have Alliance members across the country, willing and able to attend these events on their own dime. And we're really fortunate to have such articulate and concerned doctors studying CCSVI. There's still so much more to clarify with these double blinded studies.
onward-
cheer

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Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
dual stents placed 5/09
CCSVI in MS

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I like what he says about fatigue in RR MSers being cut by 50% on the MFIS. That would make a huge difference for me and by extension my family. (Treatment coming up at the end of January.)

Lyon, she already said it needed clarifying, I think that is still the answer to your follow-up question. Rhonda had been told that there were no new lesions in the first twenty, so it's either that there was a new lesion in one of the final four out of twenty-four or there was something in those first twenty after all.

Does anyone know when the complete video of the roundtable conference held in Albany will be released? Is it through Vaware.org?

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I took these notes, they're a bit unclear, sorry about that:

possible measures
OCT
thickness of nerve muscle bundles
exercise performances
walking times
cerebral perfusion

funding, multidisciplinary engagement, not going to be a perfect trial (Not knowing right time frame, right objective measurements),
time is of the essence
accelerated cycle time
demonstrate proof of principle
short cycles because we don't know how long treated vein stays open (near term, helps us gain information, what parameters are changing, gives ms patients some confidence)
primary effectiveness: multifunctional composite (upper and lower extremity) MFSC with additional cognitive component
secondary effectiveness: what he'd said at the start of the video (other objectives)
then forge larger trials (multi center or societal based)
pilot study with three month follow –up, take data to larger study. what number of patients have renarrowing, other potential options incluidng stents for more durable
mehta says 3 months is too short, 6mos to year better
why certain patients respond and others don't
larger trials may have sponsors
gov't grants, societal grants, insurance (venous compression code).
ms patients network extremely well and we'll know if in a sham
financial backing
NIH as possible sponsor
mehta on surgical reconstruction of veins, not enough evidence yet, but in extrapolating from angioplasty data and experiences
histological data: why are thse veisn at certain places getting stenoses
ccsvi is moving fast, societies are devoting blocks of time at annual meetings, FSIR
opportunity to work with people from different disciplines

Since Dr. Dake made extensive use of stents, the chances of restenosis should be minimal. It would be nice if he'd been more specific regarding the new and/or enlarging lesions, but since he did speak in the plural, I have to believe he's talking about more than one patient.

Of course, not much can be gained from parsing a twenty second comment. I edited the video, and was kind of surprised when I first saw this clip, as we had heard that Dr. Dake's patients hadn't shown any signs of progression. It sucks that this now appears to be not the case…

As Joan said, still a lot to learn, and given the present amount of conflicting data, no real conclusions can be drawn until we start seeing results from blinded studies. As of now, we only have educated conjecture. My biggest take away after watching the video countless times while editing it was that both of these gentlemen had many more questions than answers…

I also found it very interesting that Dr. Mehta talks about doing venous bypass surgery as a possible technique to combat venous occlusions.

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Marc
www.wheelchairkamikaze.com

Great job on the editing, btw. This is an impressive video all around.
Without research to back up this assumption, I consider this a big assumption, Marc. We've seen plenty of reports of clogged up stents.

Yes, that is interesting!

I found this to be a really interesting and very encouraging interview. I liked that Dr. Dake spoke to the notion that some feel the process is moving too slow, but that he feels we actually have moved very fast in one short year. And only one year ago, Dr. Mehta admitted that he was a "nay-sayer". Both doctors see the need for blinded trials, and want to get moving on them as soon as possible.
And Marc, I think that "educated conjecture" is pretty exciting, and even having "more questions than answers" is pretty exciting. If researchers and doctors are looking down a new road, that is better than travelling down the same old, worn path for 150-ish years. Great job on editing and thanks for all you do to inform and share your knowledge and experience.
Great to listen to this-- thanks for posting, cheer!

I would assume that Dr. Dake would take any clotted or stenosed stents into account when assessing the MR images.

Based on the body of available knowledge, the chances of restenosis after a balloon procedure (up to 50%) are far greater than clotting or stenosis after stenting. At least I should hope so, given the added risks inherent with the implementation of stents.

Given the aggressive nature of Dr. Dake's interventions, and his careful follow-up protocol, it's a much greater reach to assume that those patients that Dr. Dake has identified as having enlarging or increasing lesions have restenosed than it is to think that their stents are patent but their MR imaging has revealed progression. One would expect that restenosed patients might show some MR progression, and that Dr. Dake would not include such data when summarizing outcomes.

Then again, I guess we won't know exactly what he meant unless someone can ask him directly…

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Marc
www.wheelchairkamikaze.com

yes, I agree that these are exciting times. The fact that such esteemed doctors are chasing down answers, and see a very bright future, is wonderfully encouraging…

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Marc
www.wheelchairkamikaze.com

Restenosis after ballooning might be 2%, if Dr. Sinan's reported numbers turn out to be accurate, using his methods.

Cheer had reported that the risk of clotting after angioplasty was 2% but that is in arteries. In veins, the risk appears to be higher because of the low flow.

We're comparing apples and oranges but using the same term 'restenosis.' Elastic recoil is the restenosis associated most with ballooning, it appears to do no long-term damage in and of itself but the procedure needs repeating. With stents, the restenosis is clotting and intimal hyperplasia, both at an increased rate from what happens with angio alone. These can lead to permanent lost of the vein.

We just need more real published numbers, as none of Zamboni's research was done on people with stents. Until then I am cautious about attributing stents with greater prevention of restenosis, because of the risk of clotting particularly with the substandard follow-up care and anticoagulation that some of our friends here have received from doctors other than Dr. Dake.

Or until he too publishes. From the video, it sounds like he will be digging into the research with gusto and I wish him (and us) every success in the endeavor.