This Is MS Multiple Sclerosis Knowledge & Support Community

For those of us who can't be at the conference that kicks off today, here is the twitter feed:

https://twitter.com/CCSVI_Society

thanks, Cece. Heading there today--I not much of a tweeter, but glad the NCS is doing this.
cheer

Dr. Tucker, a rocket scientist, says CCSVI is 2nd year physics. "It's not rocket science."

In the photo, you can see a nice flow chart. Venous Obstruction -> Venous Reflux -> Venous Hypertension -> Blood Brain Barrier dysruption -> T/B cell leakage -> Myelin Attack. Those latter three events (from BBB dysruption to myelin attack) are established in the current literature. The first three (from venous obstruction to venous hypertension) are fluid dynamics.

I am going to pass on some comments I sent to CeCe which are mostly about Sherbrooke. I didn't mention therein that in our wee hotel just up the road, there was a biker festival of some kind (complete with loud club meetings in the room next door, staying up till all hours, and the Loudest Exhaust Pipes on Earth), so it made for an interesting holiday...

The rest:
*****************************************************************************************************************
I think it will be the last of this type of event that I will attend, for a long time if not forever. Not that it wasn't a very good conference, although it was sometimes an exercise in preaching to the converted. It was very useful to keep you up to date on the doings of a few CCSVI-VIPs.

It's just that travel seems to take too much out of me. Plus whole days of sitting in not-necessarily-very-comfortable chairs is challenging even for a person as sedentary as me.

The first day was the patient and caregivers day. I can't even remember off the top of my head who all spoke, but we saw Kirsty Duncan and Senator Jane Cordy. They said the usual things, plus added they are willing to accept (deserved) credit for pushing the pan-Canadian trials forward. They (I forget who said what) expressed that the trials are not really pan-Canadian, being only in Man., Sask., BC and Quebec. Missing are the Eastern (maritime) provinces, Ontario, and Alberta. Kirsty said that the registries appear dead, and that Stephen Harper's government have really only given it lip-service.

The US one has been killed by the FDA, though Dr. Hubbard has applied and been rejected many times for his trial. An interesting slide was Ms. Duncan's about things Canadians can do to get involved (petitions, contacting
politicians, etc).

Anyway Senator Jane and Kirsty got a standing ovation, which was followed by many more people getting these throughout the 2 days. Doctor Schelling, Doctor Zamboni (no, he wasn't there in person), Doctor Sclafani, Christopher Aklenbrack, Joan Beal, oh, zat whole crowd, ja.

There was a technical presentation that was about MRI etc, that was not by Dr. Haacke, but by a member of his team. Some of his news that said he has reached the publication point because of finally having an adequate number of normal subjects to be able to do numerically, statistically valid comparisons with normals. He refuted the McMaster study by showing how their results were valid but their analysis was incomplete, and didn't group subjects into stenotic and non-stenotic, either diseased or healthy.

Eyes glazed over. Time was a problem, with the more technical guys being cut short (given the hook). Dr. Tucker was unable to finish, and had to complete his talk off-line later. Dr. Sclafani even had to leave a lot out, skipping over many slides.

There was perhaps too much of a mixture, of the professional scientists and doctors conveying direct, on-topic information, with: side issues such as "healthy" diet advice, theories about various pathogens from Lyme's to biofilms, and how badly Big Pharma, the government, neurologists, politicians, and insurance companies are all treating "CCSVI". Two speakers (Drs. Sclafani and Simka) complained about the use of the term CCSVI, because it has been given too many, too mistaken connotations.

There was a good presentation by Dr. Bernhard on diet and inflammation, somewhat continued and supported by Dr. Bill Code, the next day. Something simpler than a 2-course buffet lunch would have left more time for speakers.

There were mistakes made about announcing the gluten in some of the food.

And of course cheerleader was her invaluable and gracious self, on stage and in person. I didn't know she was an opera singer. That Jeff guy is multiply lucky, as patient, musician, composer, husband... Isn't he also a dad?

Dr. Sclafani talked in depth about a few cases, including tiltawhirl's. He brought IVUS and venograph pictures, and was very handy with a laser pointer.

I hope that description gives a flavour of the thing. Film at 11. DVD by Christmas.

*****************************************************************************************************************
Left a lot out.

Thanks for the trip report 1eye.

Your extracurricular experience makes me think of camping with Dad in the 70's. After listening to the loud music and shenanigans of bikers thru the night, Dad arose early in the morning and blasted Tjiajauna Brass and military band music (8-Track) in retribution. Revenge is sometimes best served up with De Souza I learned.

It was a pity you weren't staying at the Delta I eye - we had a very quiet room.

You missed out reporting on Clive Beggs's talk. He is an engineer from England, also with personal reasons for getting into this type of work. He reported on Dr Paulo Zamboni's neck collar study which he had been helping him with. He had graphs of how the blood flow in a normal control dropped very quickly when they were turned head down but how someone with CCSVI had an initial quick drop followed by a much slower drop.

This is not a very good explanation, by me, but once this study comes out it will be clear to all.

I really like Clive Beggs' work. I wonder what journal will be publishing his study. I'd like it to get the attention it deserves. The neck collar plethysmography seems to have a lot of potential. If it can distinguish a person with MS from a person without it (because the person with MS also has CCSVI), then it will help get the association between MS and CCSVI established.

Maybe I need to make plans to attend next year.

edited to add: here are some pictures from the conference
http://paper.li/CCSVI_Society/1306484186#!all

Thanks 1 eye. You didn’t need a biker party next door. Glad it didn’t affect your providing a conference summary. I would like to add to your summary, that I had also expressed some discomfort with the term “CCSVI” - that the “insufficiency” descriptor was an insufficient description of the consequences of the venous obstruction and reflux phenomena. I had mentioned “Cerebral Venous Hypertension” as a possible alternate. This suggestion is made in consideration of the number of papers recently that have identified hypertension in association with cerebral venous reflux. Also, there is a significant precedent for serious consequences to ignoring localized venous hypertension in the Hepatic Portable Vein (from GI tract and spleen to liver). HPV occlusion and hypertension is well documented, and with its placement between spleen and liver, displays differences but also displays some similarities to cerebral venous hypertension - like reduced blood flow, vein distension, collateral vein growth and others. HPV occlusion is surgically addressed with angioplasty and stents. Consequences of no surgical intervention can be terminally serious. This is one vein in which occlusion and hypertension is understood and treated very seriously by the general medical profession.

I meant Hepatic Portal Vein.

1eye wrote: There was a technical presentation that was about MRI etc, that was not by Dr. Haacke, but by a member of his team. Some of his news that said he has reached the publication point because of finally having an adequate number of normal subjects to be able to do numerically, statistically valid comparisons with normals. He refuted the McMaster study by showing how their results were valid but their analysis was incomplete, and didn't group subjects into stenotic and non-stenotic, either diseased or healthy.

This presentation was just uploaded in English and French to our websites: http://www.mrimaging.com, http://www.mrinnovations.com, and http://www.ms-mri.com. The slides also discuss the flaws in analysis in the recent McMaster study. And yes, we did have similar findings with the flow rate data using MRI, but there are several levels of analysis which Dr. Rodger did not do which can show clear differences between the MS and healthy control group (more details in the slides). The takeaway is that in over 650 MS cases we have reviewed, we have seen consistent results using MRI for flow analysis and anatomical analysis of the venous anatomy.

Yay! Back home in CA- after the conference and visting with my Mom in CT.

TTucker---loved your interpretation/explanation of hypertension at the conference. You gave a great presentation. Agree with you completely about this characterization, as opposed to venous insufficiency. Dr. Dake told Jeff he was treating his venous hypertension, just as he would in vena cava syndrome--which is why Jeff has stents, and has maintained restored flow. For him, this approach was successful.

Eye--I'm so sorry you had housing issues and fatigue from traveling, and I know what you mean about sitting in a darkened room for hours on end....it was so lovely outside, it felt a bit wasteful of all those rare Canadian UV rays. Thanks for your comments. Jeff and I are married 30 years this coming summer--we met in music school and got married as students. We have an 18 year old son, and consider ourselves really fortunate--for many reasons. I suppose my focus on "lifestyle", nutrition and exercise comes from a desire to help people maintain venoplasty gains, or make that vascular connection. It was, after all, Dr. John Cooke's research on how lifestyle changes the endothelium, that got me going in my MS research--and keeps me involved all these years later. And it suits my cheerleading ways

Cece--I think you'd enjoy the conference. This was my first NCS event, and I learned a lot. It was a ton of info, but very compelling; And meeting our online friends in person was really gratifying-- I'd love to meet you someday! A couple of the docs mentioned you and your TIMS posts to me...and wondered who this bright, articulate woman was. You could "unmask" yourself!

Brocktoon--I appreciated Sean's explanation of the differences between your group's analysis, and the McMaster study. I loved that he said he hopes your work is the hammer which will remove the nail in the coffin McMaster claims to have built to end CCSVI. Incomplete research is not proving anything, except the fact that understanding cerebral venous return is more complex then we had first thought.
here's to learning more,
cheer/Joan

brocktoon wrote:This presentation was just uploaded in English and French to our websites: http://www.mrimaging.com, http://www.mrinnovations.com, and http://www.ms-mri.com. The slides also discuss the flaws in analysis in the recent McMaster study. And yes, we did have similar findings with the flow rate data using MRI, but there are several levels of analysis which Dr. Rodger did not do which can show clear differences between the MS and healthy control group (more details in the slides). The takeaway is that in over 650 MS cases we have reviewed, we have seen consistent results using MRI for flow analysis and anatomical analysis of the venous anatomy.

I had some trouble finding it, but it was there: follow this link http://www.ms-mri.com/index.php?site=interviews and click on "Talks" and it's the first one listed

Our Evidence of Flow Abnormalities
There are five levels of analysis:
1. Evaluate ST vs. NST patients
2. Compare individual IJV flows at C2 & C6
3. Evaluate total IJV flow at both C2 & C6
4. Evaluate normalized IJV flow at both C2 & C6
5. Establish a quantitative threshold that separates HCs from stenotic MS patients

In the material presented so far, we have presented the flow information for every patient in a 2D quantitative plot.
If one were to evaluate only point number two by merging all the patient information into a simple histogram it is unlikely that we would find any difference between MS and HC.

It's a good explanation of the difference between how Rodger's team analyzed their data and how you analyzed yours. I am really curious how Rodgers will respond and how your work will be received upon publication.

I wonder also if establishing a quantitative threshold (#5 above) has clinical value, and might be useful if a treated patient has partially restenosed, to help clarify the decision of whether to undergo repeat angioplasty.

cheerleader wrote:Cece--I think you'd enjoy the conference. This was my first NCS event, and I learned a lot. It was a ton of info, but very compelling; And meeting our online friends in person was really gratifying-- I'd love to meet you someday! A couple of the docs mentioned you and your TIMS posts to me...and wondered who this bright, articulate woman was. You could "unmask" yourself!

When I went to the Patient Day of the Brooklyn symposium back in 2011, the room turned out to be filled with friends. We just had to figure out who was who.

I'm in awe of the docs though.

Didn't mean to imply I covered everything: I didn't. We actually had to leave early, so I didn't tell you anything about the end of day 2. I am typing this in a Holiday Inn in Windsor Ontario, where I had a wedding to attend. Only misstep on this trip so far,, was the train ride from Toronto turned out to be an overloaded mini-bus-ride, because freight trains clogged up the railway between Ottawa and Toronto. The whole train was late, so we missed our connection.

On our sojourn to Sherbrooke, we had got lost in the backwoods of Quebec, and gone a long way in circles before we got there. We had rented a Prius V to see what it was like, but all our fuel-efficient travel went out the exhaust, while we meandered.

Guess all the traveling I have done in the last few weeks has been pent up from staying in one place for a couple of years. Turned on a Detroit vs Oakland baseball game in the hotel, and said oh, hey Detroit baseball, but I didn't realize, it's October! This is the pennant series! I guess they'll be playing in Detroit when we're on the train home.

So anyway glad for all the links to papers, talks, and pictures. Thanks.

Didn't mean to give Dr. Beggs short shrift. I am a big fan. I was worried about the continued opposition being shown to this science, declaring the subject to be dead and all, but I guess this conference contained some good shots fired back, at the Multi-Billion Dollar Behemoth. I think veins are definitely under-studied, and that we "MS"ers are not the only ones who will benefit from this effort. I figure with the caliber of talent on this, progress will continue for a good while yet.

Insufficiency, hypertension? Drainage clogged? Bad brain drain veins? Call Roto-Rooter?
A plugged pipe by any other name... I have venous insufficiency starting up in my feet now, and I don't much care what it's called, if I can get it fixed. Really, folks, why bother worrying about it if you aren't losing valuable drug business by it?