This Is MS Multiple Sclerosis Community: Knowledge & Support

Great job cheer! Thanks!

At the beginning - was that the updated data? 70% correlation of CCSVI for each of SPMS and PPMS.

I must say what an absolute pleasure it was to watch Zamboni and Zivadinov. Naturally they stole the show.
Some snippits:

Opened by Miller who defended drug therapies and described CCSVI as preliminary. Also he sees a substantial disagreement between Zamboni's results and Zivadinov. (Any simple statistical test sees a strong correlation of course.)

Zamboni gave results table for MS patients with CCSVI

Zamboni 100%
Zivadinov 55% -62%
Mamoon 84%
Simka 90%

Mentioned a subsequent joint study between ZAM and ZIV which had a much better outcome re restenosis. Also a treatment trial which would be vigorously randomized. And some results re genetics coming out nest week. Said his research proved a strong association with the mechanism of MS. Described venocentric lesion and extravastation of the blood. Fibrin - CAF? encircling the veins. flow dynamivcs are deeply modified. Extravastation of blood cells excites complement overload. (He was taken up on this point later in the show.)

All in all a good summary with some interesting new bits.

Zivadinov brought out loads of detailed slides with numbers on and gave a dense resume of them all. He did seem to be using 62% as his CCSVI number now not 55%. I wonder if anyone could follow them. He also went on at length about ethics which basically meant we should make haste slowly. Patients needs are as important as research aims but really we should wait. He seemed both sincere and genuinely concerned. He is waiting for phase 2 funds. Interesting that he said we need symptomatology studies i.e a study of patient reports of what changed after the process. This was echoed by Zamboni later. There is a set of symptoms that seems closely related to CCSIVI. Fatigue being an obvious one.

Next up was the Interventional Radiologist. 20 years axperiernce. A colleague of Dr Dake. A nice man who seemed competent and believable. Gave a good set of slides about the basics of veins. Basically was there to say that venography is not risk free, angioplasty is not risk free and stents are even worse. He did not over-egg his points but advised not to have anything done unless part of a trial. He has had no experience of CCSVI.

Questions followed but I only noted a few answers. The first guy attempted to tell Zamboni off by telling him his remarks about extravastation and iron deposition were wrong. This was never found. Zamboni quoted the recent study which showed exactly what he said and expalined in some detail how it was different to the situation the questioner described. There was a lengthy response from the questioner which I could not hear. Zamboni started to reply again but was stopped. Was this guy a plant? There was a question about problems in testing Zivs 500. Zivadinov basically said the test (doppler) was difficult to do which explains the different prevalences found by him and Zamboni. We now have a new technology which is showing substantially different results. Miller chimed in saying that these things are very technical (and not for the likes of us.) and we should be aware that iron deposition could be a consequence not a cause.

Noone should stop meds. Noone should have the procedure done outside of a proper trial. Ziv and Zam concur. But Zamboni says if have aggressive MS and all treatments have failed could do so on compassionate grounds. But only angioplasty. Both Zam and Ziv seem genuinely concerned for both patient rights and patient safety.

Question about people already having the procedure done. - Ziv they should not do it. Support more safety studies - the question is out of the research arena.

Was there any drug which was likely to make the operation uneccessary?
Common, the radiologist said no and he would not call it an operation only a procedure.

Question about Placebo effects. How likely? Miller takes this one. There is always a high placebo response in any condition where symptoms are subjective. Much lower in more objective... Also need Sham procedure.

How many unauthorised procedures. Miller - we have no idea.
Ziv – they should get irb approval and go legit. Patients treated outside of proper trials wont benefit the research in the long run.
Zam – we are making a registry.
Miller – Registry very important. But no substitute for doing it properly.
How many studies before it becomes main stream?
Miller- hard to say – cant prejudge results
Dr Dake 35 interventions- stent, death – should not be using stents.
Zam – Maybe stents may be used however needs to be tested. Need to have no doubt. Need to use safest technique. There are guidelines for treating venous malformations. Angioplasty first, then an operation if possible, then stents. Must balance safety and effectiveness.

Miller then again brought up 'Why are there so much discrepancy between Zamboni and Zivadinov" (perhaps he was not listening when Ziv said this was because they had difficulty doing the tests.) Then I think he said it was 45% in non MS group. Did anybody else hear this. Unfortunately Miller mutters so I am not sure.

I would like to have been there. The body language of both Zamboni and Zivadinov was excellent they are clearly extremely confident in what they are saying. Miller I hardly saw but he did not seem comfortable. Did anyone in the room see what he looked like?

Is there any way to view this 'post facto'??
Z

They said the video will be available for the people who could not participate.

I think that they hinted it would he available on the national ms societywebsite

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Mutley goes to Poland 1st symptom was Optic Neuritis in 1998, DX RRMS Jan 2001, DX SPMS 2007. Last EDSS by doctor 7.5

http://www.nationalmssociety.org/resear ... index.aspx

1/2 way down. As of the writing of this message, it was still as "Coming Soon!"

I watched the discussion, and was interested in Dr. Common's report that Dr. Dake of Stanford University has done about 35 of the CCSVI procedures but had complications develop in two of them--and was "asked or told" to stop doing the procedure....

This is probably old news for everyone here but I thought it was worth mentioning....

I learned a few things from this webcast:

- Angioplasty of the azygous vein is very effective, according to Dr. Zamboni it rarely or never has restenosis
- Dr. Zamboni's answer to restenosis of the jugular is to say that the angioplasty can be safely repeated. It immediately made me wonder who could afford to pay for the repeated treatments? Also he said that stenosis in the lower jugular could be repaired with open surgery if angioplasty failed.

Overall I thought it was excellent. ZAM and ZIV rock and the other guys were alright too.

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Choose Liberation.

boy that was a lot of data. 81% sounds good

You can watch the whole meeting here. : http://hosted.mediasite.com/mediasite/V ... ebb41a8ba6

squiffs
MSRC Webmaster

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The Multiple Sclerosis Resource Centre

Squiffy's House of Fun - Laughter for Multiple Sclerosis

I though Dr. Common, the Interventional Radiologist kept trying to make a point that the blood could get back to the heart through other veins if the jugular vein is blocked.

I think it could and it does, but 1) not as efficiently 2) some of the blood stagnates in the brain if it has to find the other ways / go through the narrower vessels.

We'd be dead, not MSed if it didn't.

In the Q&A session at the end, the first question (which didn’t actually end up being a question at all) was from a man who disagreed with Zamboni’s theory about how Iron deposits could occur in the brain in response to CCSVI. Does anyone know who he was, and what his field may have been? Neurologist maybe?

Although Zamboni seemed to effortlessly disarm his statement, I wish I understood everything that was said between them. The audio was a bit poor. Hmm, must dig out the transcript....

All in all, I thought it was very positive.

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Mutley goes to Poland 1st symptom was Optic Neuritis in 1998, DX RRMS Jan 2001, DX SPMS 2007. Last EDSS by doctor 7.5

Absolutely. As Jeff said, while we were watching Dr. Common, "good thing the blood finds other ways back to the heart, or I'd be dead!"

The problem is not that the blood isn't getting back--it's that it is taking too long, and using alternate pathways that are stressed and leaking. These are called "collaterals" and Jeff had a neck full of them. The longer transit time due to this circuitous route means deoxygenated blood remains in the brain longer, oxygen takes longer to get in from the arteries, and venous hypertension stresses the BBB. Venous insufficiency is just that....insufficient.
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

That was Dr. Lisak from Wayne State, head of the neurology dept. which wrote the CCSVI piece in the Annals of Neurology.

His point is that Dr. Zamboni's theory of pathology in MS is incorrect....and it is NOT like that seen in venous insufficiency in the legs. MS is autoimmune. period. Dr. Zamboni asked, why then the fibrin cuffs (a hallmark of venous hypertension) and the ring like iron depositions in the lesions surrounding the veins. Zamboni also said that the autoimmune theory makes no sense when studying fresh lesions upon autopsy....there is no immune activity in brand new lesions (Barnett paper?)
Anyhoo...it was a fine example of cognitive dissonance.
cheer

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