2011 CCSVI Conference, May 14th in San Diego (Hubbards)

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

2011 CCSVI Conference, May 14th in San Diego (Hubbards)

Postby Cece » Wed May 04, 2011 8:31 am

www.youtube.com/watch?v=BiFrkfGQv1g&feature=uploademail

(A youtube video discussing who will be presenting!)
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Postby WeWillBeatMS » Wed May 11, 2011 9:37 am

I just wanted to bump this thread up as a reminder that the conference is coming up in San Diego, this coming Saturday May 14, 2011.

Here is a link to The Hubbard Foundation:

http://www.hubbardfoundation.org

And here is one directly to the list of speakers this Saturday 9am-4pm:

http://www.hubbardfoundation.org/2011_c ... go_ca.html

This is from the Hubbard Foundation, a non-profit organization founded in 2007. The founder of the organization is David Hubbard, MD. He is a board certified neurologist. That's right a NEUROLOGIST!

He has one of the four official IRB approved trials that are going on right now in the USA which you can see by clicking on the link below.

http://clinicaltrials.gov/ct2/results?term=ccsvi


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Postby Cece » Wed May 11, 2011 9:48 am

Partial List of Speakers Include:

Giedrius Buracas PhD, UCSD
Jack Burks MD, MS Association of America
Michael Dake MD, Stanford University
Kirsty Duncan PhD, Parliament, Canada
Justin Gooding MD, Palomar Pomerado Hospital
E. Mark Haacke PhD, Wayne State University
David Hubbard MD, Applied fMRI Institute
Donald Ponec MD, Palomar Pomerado Hospital
Richard Saxon MD, Palomar Pomerado Hospital

CLICK HERE to REGISTER

Level 1 CME credit 6 hours

Topics:
Pathophysiology of CCSVI (Chronic CerebroSpinal Venous Insufficiency) and MS (Multiple Sclerosis)
Testing for CCSVI
Catheter venoplasty indications, methods and complications
Post-procedure clinical management
fMRI BOLD venous in CCSVI

I love the work he's doing with the fMRI. He presented on this at ISNVD:
http://ccsvism.xoom.it/ISNVD/Abstract-Hubbard.pdf

Pathophysiology, testing, technical catheter stuff, post-procedure, and fMRI BOLD. Great topics, great speakers. The only one I am unfamiliar with is Buracas. Dr. Burks talked at ISET.
www.iset.org/files/content/events/am091 ... 081605.pdf
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Postby cheerleader » Wed May 11, 2011 2:27 pm

It's a great line-up. I'm so bummed to be missing out--we're back east where Jeff's giving the commencement address at our alma mater.

Marie Rhodes will be in the exhibition center, along with Sharon Richardson of CCSVI Alliance-- and gluten-free breakfast and lunch...should be a good day.

Dr. Buracas is a researcher at the fMRI department at UC San Diego---

looking forward to hearing reports from this conference!
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Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby WeWillBeatMS » Fri May 13, 2011 9:49 am

One last reminder before the CCSVI Conference in San Diego tomorrow.

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Postby CureIous » Sat May 14, 2011 10:07 am

Dr Ponec is giving some of the Hubbard stats right now fom 6 month msis29 scale. 66% showed improvement or marked imp. In cog function out of 152 patients. 64% respectively for fatigue. About 65 ppl here.
1 adverse event post-op which was minor. Not sure if this is all stuff we already know anyways. More
RRMS Dx'd 2007, first episode 2004. Bilateral stent placement, 3 on left, 1 stent on right, at Stanford August 2009. Watch my operation video: http://www.youtube.com/watch?v=cwc6QlLVtko, Virtually symptom free since, no relap
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Postby Cece » Sat May 14, 2011 11:27 am

Looking forward to more!
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Postby CureIous » Sat May 14, 2011 3:13 pm

Cece wrote:Looking forward to more!


no worries, devon is recording and will have the vids up maybe in a week. Lotsa good stuff. Dang good food too. Privileged to eat lunch with a traveling
Trio from Vegas, all here to learn. One is a vasc surgeon, one an IR and the other an ultrasound tech, they had a lot of questions. It's very encouraging to see fresh and eager faces jumping into the fray. Kirsty Duncan is an absolute doll. I will say that it appears some Drs are not utilizing IVUS at all. Lots of stent talk of course. Dr Dake referred to venoplasty as the "tarnished gold standard" (here here), one reason being the variance with position respiration, and muscle contraction. Lots and lots of talk on the Zamboni study and nothing on buffalo. Don't get me wrong, lotsa good stuff, but we seriously need to move on from that one pilot study. Dr Burks was great too
, He explained some of the neurologists reticence ( got to look up " artery insufficiency Allan Hurvitz etal 1977) unless it's on here somewhere
RRMS Dx'd 2007, first episode 2004. Bilateral stent placement, 3 on left, 1 stent on right, at Stanford August 2009. Watch my operation video: http://www.youtube.com/watch?v=cwc6QlLVtko, Virtually symptom free since, no relap
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Postby Cece » Sat May 14, 2011 3:19 pm

vertebral artery insufficiency - that was mentioned at ISET too

Dr Dake referred to venoplasty as the "tarnished gold standard" (here here), one reason being the variance with position respiration, and muscle contraction.

Dr. Cumming was just posting ivus images illustrating this:
www.thisisms.com/ftopicp-164981.html#164981

wish I was there :)
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Postby CureIous » Sat May 14, 2011 11:46 pm

Cece wrote:vertebral artery insufficiency - that was mentioned at ISET too

Dr Dake referred to venoplasty as the "tarnished gold standard" (here here), one reason being the variance with position respiration, and muscle contraction.

Dr. Cumming was just posting ivus images illustrating this:
www.thisisms.com/ftopicp-164981.html#164981

wish I was there :)


Went to bed at 11 pm last night, up at 6, out the door with suit and tie at 6:30, drove 102 miles, got there 8ish, did the conference, went to my brother's house nearby, then we went to a casino, then back to his house (500 bucks richer which paid for the books/weekend/gas!), then another 100 miles home. It's really REALLY nice having fixed veins. Like to give my own birdseye view while it's all still fresh.

I can't wait for you guys to get the Hubbard videos, Devon and this other guy were doing the taping on a very nice looking camera so the shots should come out better than a handheld. I'll try to get you zeroed in on some of the good stuff when it gets posted.

First of all, I really and truly hope that each and every one of you comes to some realization, that all this talk about money this and conflict of interest that sounds good on internet message board posts, but does not even skim the surface of what is really going on.

What is really going on, from my assessment and my looking people in the eye and talking to them personally, from Sandy Mcdonald to Kirsty Duncan, to Eric Feigenbutz from AZ doppler, to every one of the Hubbards, is thus:

1. You cannot fake passion. There was enough of it going around in that room to make Fabio himself blush. (bad analogy? :)

2. For those who have not had the pleasure of meeting all those Dr's, representatives, authors, family members etc. , well, I can tell you this with the utmost assurance, these people are FIGHTING for you all, the untreated, those with little hope of any other avenue of redress r.e. their disease. They are on fire and it's a raging inferno. THAT cannot be faked.
While some (Dr. Burks for instance) are demanding a certain level of scientific proof (fair enough), the direction is still forward, and it's a call to charge into the fray, not spectate from the sidelines hoping someone will take care of things eventually, for instance, at the end in the hallway over snacks and drinks I finally got to talk to Arlene and her daughter Alexandra, at which point ingressed Eric from AZ doppler, who then got to talking with Alexandra for the first time, and they were instantly huddling over how to get funding, and how to get Siemens on board with the "we're using your machines but there's these other guys over here" angle, and just like that they developed a brilliant plan to get something moving in that direction. That Alexandra is one smart cookie. The Hubbards need funding, it costs a substantial sum of money to keep a 3T machine going all month long. They would LOVE to have a study and scan/treat patients for free and/or have insurance pay for it all. Sadly, that is not the case, and they've put a lot on the line to get things where they are right now. It's the scanning that's the tough part insurance wise, the Haacke protocol is 3.5k and they offer a stripped down version for 2.5k. I know we'd all love to just do a quickie ultrasound and go straight to the op room, but that's the program for now. Doppler UT machines aren't cheap. MRV's for as much as they are maligned on the internet, seemed to be not quite as much so in this group, overall from what I heard from the various speakers, it's just a tool, nothing more, nothing less.

I talked to the Hubbards and anyone else that would listen about my Dr's assistant, who I had the pleasure of meeting on Friday (finally!). Doc had told me about her, as her daughter has MS and he's been funneling my info/results/video and all the papers and info I give him to her, and his colleagues. What an incredible lady, she's well into her 80's, helps the Dr. out with billing and such, and has (get this), twin 60 year old daughters, both with MS for about the past 15 years. Problem is, they don't have insurance, but I'm thinking if I can raise enough money somehow or somehow get them at least scanned, UT or whatever, what Dr. wouldn't jump at the chance to check this out? From what the Mom was telling me, they seem to have all the classic CCSVI/MS stuff going on. So that's how I got the pricing on the scans, AZ doppler does it for 540.00. Sigh. So much need out there. What to do?

As far as the presentations go, got 5 pages of notes and hated to write those because things moved so fast I had to pick what I wanted to miss out on as I wrote. I’ll come back tomorrow and refer to my notes but it’s just some highlights, many of the presentations plain old skipped over the boilerplate stuff, which 2 years ago would have everyone on seat’s edge, whoda thunk it?

I will mention that Dr. Burks presentation was buffeted a wee bit by Sandy Mcdonald, and that’s one part of the video you do not want to miss, as Dr. Burks couldn’t pass up talking about the Costa Rica event which has been covered quite thoroughly before, except the problem was, he was using internet generated references and news article reporting to illustrate his point, Sandy however raised his hand and asked how he knew that was true, whether he knew the family, or the treating Dr’s in Canada etc etc., because he (Sandy) did, and had spoken personally with the affected parties, and proceeded to , shall we say, “set the record straight”. Mind you, at the time, I had no idea whatsoever who this firey , passionate man was that had popped his hand up for the Q&A portion of Dr. Burks presentation, so afterwards I walked over and thanked him for setting the record straight, and he insisted it was about reporting the facts from a standpoint of having investigated thoroughly, instead of repeating things others said on the internet. He really did take Dr. Burks to task. When I asked his name, then it was like, ‘NO WAY’! lol. You mean THE Sandy Mcdonald? Sorry, I don’t know all these people by sight, but sure as heck know the names. We need to replicate people like him big time.


Funny aside: I had planned on getting 10 copies of Marie's book, as it would be easier than ordering online and all that. I took five at the beginning, but Marie could only carry so many on the plane and I was hesitant to snap up copies that other's there would want to walk out with, so at the end of the night it seemed everyone that wanted one had one so I got the last 4 copies from her and was bouncing around talking to all these brilliant minds, but then one guy (a patient) walked up to Marie to get a copy so I sold him one of mine (haha), so now I had 3, then in the course of talking to Dr. Mcdonald and Dr. Bill Code (another brilliant man), turns out they wanted copies too, so I sold them 2 out of my 3 lol. It was comical, I didn't have change for Sandy, so Bill worked it out so he owed Sandy and gave me the rest. Dr. Code asked some great questions during the sessions too. Needless to say, I sold almost as many copies as Marie did haha. I showed her my lone book at the end and told her I sold the other 3 for 50 bucks a pop and made a profit. (jk of course).

Yeah the vertebral artery insufficiency was just mentioned as part of explaining why some neuros may be a bit leery of "oh now it's the veins huh?" Doesn't excuse some of the dismissive hand waves coming from that sector, as Dr. Burks stated, the crowd there today was easy to deal with compared with what he faces talking to his Neuro peers. I don't envy his position at all.

There was plenty of "we need more studies" talk, a lot of stuff it just felt like the same rehash since 2009. While those on the board here may think we've got all the cutting edge stuff going on 24/7, the fact is the rest of the world doesn't, and we aren't much further than we were in 2009, sure with brilliant minds like Dr. S at the helm and Dr. Cummings and Dr. Dake and the rest of them, it's going in the right direction, but this leviathan called the Medical Establishment does NOT pivot on a dime, and all the bluster and protests and initial findings and imaging studies in the world cannot surmount the fact that we are still, 2 years later, so lacking in critical double blinded placebo controlled, meaty and weighty treatment studies that will put some serious scientific teeth into this thing and get it the airplay it deserves besides the Globe and Mail propaganda which passes for rigorous reporting.

Luckily, at least for now, the patient in need still has options, they may not be palatable nor optimal, but there's something somewhere that can be done. It really comes down to "what are your resources?". I'm an expert on not having any of those, trust me, been there, done that and only with the help of others did I even have a chance of getting to Palo Alto in 8/09. I don't have a bully pulpit, or following, or vast resources, or much time, but want to keep learning and do what I can to pay it backwards. Hopefully others have the same thought that have been "liberated" from their MS prisons, come alongside others, be their cane or walker or mouthpiece , wheelchair or friend, do what you can, however you can do it, that level of Multiplication will overcome any attempts by others to Divide and conquer. Don't ever assume billion dollar companies have your best interests at heart, or charities for that matter, make them prove it. Don't trust any of them as far as you can throw them, they don't give refunds when 500k worth of drugs later, you are immobile and stuck in a bed....
RRMS Dx'd 2007, first episode 2004. Bilateral stent placement, 3 on left, 1 stent on right, at Stanford August 2009. Watch my operation video: http://www.youtube.com/watch?v=cwc6QlLVtko, Virtually symptom free since, no relap
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Postby CureIous » Sun May 15, 2011 2:11 pm

Man I talk alot late night all caffeinated and stuff lol. Really going to miss that group, such energy.

Anyways, here's just some stuff from my notes, not exhaustive by any means, so when the vids come out there will be plenty left to chew on, but some of the great slides and such, they didn't stay up long enough to copy and my peabrain does writing, or listening/digesting but can't do both at once. I do envy the female right/left-brain-at-same-time capabilities in these situations..

Anyways, here's just a collection of odds and ends collected in order of the presenter's appearance, with the understanding that there was no way to ascertain if the info was new and revelatory, or old hat, or what, so if it's just repeating oft-talked about topics, so be it.

First was an intro by the Hubbards, they've treated 300 patients so far and would present some of the data later.

Then Kirsty Duncan, mentioned her cousin with MS, and how to untangle science and politics, plus a relevant quote about willful blindness. (didn't write the author but it was good). She went on to discuss about how Canada implemented a political process, to decide a scientific process, but curiously, didn't include experts in that process "for fear of biasing the sample". Then she talked about how there are no experts, and no experienced people to analyze interim and final results from 7 different societies.

Next up was Jack Burks, neuro for the MS Association, lots of boilerplate stuff we already know about patients going abroad and the dangers associated yadda yadda. Then about how the Costa Rican facility had never done a stent, then went on to talk about the neuro perspective and had a list about what is needed at this juncture, which we can all do by heart so no need to belabor the point. CCSVI is inconclusive at this point and doesn't support the commercialization of CCSVI procedures, but guesses about 15-30k treated at this point. Touched on the SIR position statement, and how 100 different cures have been proffered to date, which led to the mention of the vertebral artery investigations from the 70's previously mentioned http://tinyurl.com/6fz7j5w, which is why some neuros are recoiling at mention of venous insufficiency.
Then the obligatory picking apart of the Zamboni study. I was trying to get his point but it went over my head about the 27% vs 100% but I think it was that pre treatment, the relapse rate was 27% among the 65 patients, but post treatment, if you restenosed, the relapse rate was 100% and how that didn't make sense. IOW, if restenosis automatically equals relapse, then the relapse rate was higher than the initial 27%. I think I know what he meant, but hate playing these number games it makes my head hurt.

Dr Burk is not antagonistic towards this at all, we need him on our side, but he's in between a rock and a hard place and demands scientific rigor, OTOH though, he had a list of some things his Neuro colleagues say to patients: "CCSVI is naive and not supported by facts", and that much of the current data doesn't support the role of CCSVI in MS, however, we need to start asking some of the right questions (he countered).
"Interventionalists are misguided about MS and have a conflict of interest by charging huge fees" (chuckle). Plus some other salient quotes. Neuros are antagonistic towards this, is no breaking news flash.

Onto Dr. Donald Ponec, was too busy listening to do much notes on his presentation. His was “efficacy of venoplasty in MS”. I wrote down “abnormal MRV was qualifying exam for venography” and 8.3% restenosis rate. Dunno. More stuff on extension of initial fMRI trial and continued data collection along with a single center investigator initiated efficacy trial. Bad note taking on this one sorry.

Next was Dr. Dake, but since the Hubbards already have his presentation online in video form, no reason to elaborate further. The one slide he presented showing the one normal valve operating in real time vs. the one that was a flap that looked like a flag blowing in the wind was intriguing. I’ll note his assertion which we are aware of about azy imaging varying with position, respiration and muscle contraction, which can lead to treating a stenosis which really isn’t there. Cece already linked to a post about that on here.

Then Dr. Haacke with his usual ensemble of genius stuff. He of course wants to study 1,000 normals.

After Dr. Haacke was Dr Justin Gooding, since I had mentioned about IVUS to the 3 I was sitting with for lunch, he asked Dr. Gooding about it, and Dr. Gooding stated he only had anectdotal evidence about using IVUS, I think we pretty well got that covered just on this website eh?
Some notes from him, MIT 300 cases treated so far, CCSVI is being treated in 40 different countries, MRV does a better job evaluating veins prior to venography, and during angioplasty, they use the patients indicator of pain threshold to try to determine the upper limits of dilatation, he does use stents, but the problem is they don’t know when a stent is occluded (that kinda goes for any vein I would say), until it becomes symptomatic, also that larger veins have less clinically significant restenosis and respond better to ballooning, that valves in the Azy are variable, and some are impossible to see on veno , also about azygos duplication, and that extrinsic compression doesn’t respond well to PTA, and a note about jugular vein valvuloplasty.

Next up was Dr. Saxon, technique controversies, another fascinating presentation, about no standard lesion types, which makes it hard to come up with one modality for treatment, and also that the types of problems seen with ccsvi treatment, are nothing new at all to the IR world, that they regularly deal with restenosis, thrombosis etc etc, and that restenosis is seen anywhere from 1 month to 2 years with ALL arterial and venous interventions, a note about the restenosis cascade, also that more pressure causes more restenosis, and how using cutting balloons is nothing new and all the modalities have failure rates, cutting balloons have the same restenosis rates as regular PTA, also a mention about the complexities involved treating different patients, one patient had an occluded stent on the right side, but on the left was absolutely pristine and no problems, perplexing.

Last up was Dr. Hubbard and the panel discussion, I’m sure those will be out on video soon anyways, my notes are sparse as the end of the day the brain was overloaded lol. Did find his presentation fascinating, he was talking about Zonulin, tight junctions in the gut, and Gliadin and a ton of other brainiac stuff well above my pay grade. Also echoing Dr. Dake in that angioplasty affects global symptoms, regardless of lesion load. Huzzah.

There were quite a few mentions throughout the conference about the internet, patients educating themselves and sometimes the Dr’s. Facebook even got a mention. There was so much boilerplate stuff on what studies are needed and everything else we’ve all known and said since 2009 that it doesn’t bear repeating, this is where I feel we are still treading water as a whole, despite isolated pockets of scientific gains, the money still needs to be there to get the engine going. Hopefully getting some of the device manufacturers on board (think MRI tubes for instance) will be one angle to play. There’s plenty of corporate money out there to make this happen, how to get your hands on it and put it to the best use for the greatest number of people is the hard part….

Can’t wait to watch the videos and go over everything again, hope this helps a little bit in the meantime.

Mark
RRMS Dx'd 2007, first episode 2004. Bilateral stent placement, 3 on left, 1 stent on right, at Stanford August 2009. Watch my operation video: http://www.youtube.com/watch?v=cwc6QlLVtko, Virtually symptom free since, no relap
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Postby Cece » Sun May 15, 2011 2:41 pm

8.3% restenosis rate.

that's really low!
they use the patients indicator of pain threshold to try to determine the upper limits of dilatation,

Worrisome...this sounds like over-dilatation.
Next up was Dr. Saxon, technique controversies, another fascinating presentation, about no standard lesion types, which makes it hard to come up with one modality for treatment,

That's part of what makes CCSVI so interesting, it is highly variable, although it all adds up to outflow obstructions and MS.
cutting balloons have the same restenosis rates as regular PTA,
wouldn't they have higher thrombosis rates?
Did find his presentation fascinating, he was talking about Zonulin, tight junctions in the gut, and Gliadin and a ton of other brainiac stuff well above my pay grade.

tight junctions in the gut? Gliadin, Zonulin...I have not heard of any of this.
Hopefully getting some of the device manufacturers on board (think MRI tubes for instance) will be one angle to play.
Volcano IVUS, are you listening? :)

THANK YOU, Mark, for all the notes. THANKS too to Dr. Hubbard and all the researchers and politician who participated in the conference.
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Postby CureIous » Sun May 15, 2011 3:29 pm

Cece wrote:
8.3% restenosis rate.

that's really low!
they use the patients indicator of pain threshold to try to determine the upper limits of dilatation,

Worrisome...this sounds like over-dilatation.
Next up was Dr. Saxon, technique controversies, another fascinating presentation, about no standard lesion types, which makes it hard to come up with one modality for treatment,

That's part of what makes CCSVI so interesting, it is highly variable, although it all adds up to outflow obstructions and MS.
cutting balloons have the same restenosis rates as regular PTA,
wouldn't they have higher thrombosis rates?
Did find his presentation fascinating, he was talking about Zonulin, tight junctions in the gut, and Gliadin and a ton of other brainiac stuff well above my pay grade.

tight junctions in the gut? Gliadin, Zonulin...I have not heard of any of this.
Hopefully getting some of the device manufacturers on board (think MRI tubes for instance) will be one angle to play.
Volcano IVUS, are you listening? :)

THANK YOU, Mark, for all the notes. THANKS too to Dr. Hubbard and all the researchers and politician who participated in the conference.


Lol, no question about it, there will be plenty of ground to cover when you watch the vids. Haven't the foggiest on the 8.3% so watch for it in the vids. Dr. Gooding and Dr. Saxon's presentations are the ones I want to watch first.

Breaking: Some of the Hubbard vids are up! Enjoy!

http://www.youtube.com/results?search_query=hubbard+foundation&aq=fI'd do the Saxon one first myself..

For the Zonulin discussion, go to 3:20 in Dr. Hubbards video here: http://www.youtube.com/watch?v=Ie4IXrscM7M
RRMS Dx'd 2007, first episode 2004. Bilateral stent placement, 3 on left, 1 stent on right, at Stanford August 2009. Watch my operation video: http://www.youtube.com/watch?v=cwc6QlLVtko, Virtually symptom free since, no relap
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