CCSVI/Hilarescere WEBSITE up and running

[cheerleader]

http://www.fondazionehilarescere.org/eng/index.html

[Jamie]

woo!

[bestadmom]

very cool

[gibbledygook]

Brilliant find cheereo! This stone is beginning to roll! Yay!

[CureOrBust]

I noticed "Michael Dake" is on their scientific committee. I had no idea he was associated directly with them.

[CureOrBust]

I am guessing none of the following names are new, but I noticed that there were a few names associated with the USA which someone may be near to:

Marie Luce Beauchaton Piallat
Genève (CH)

Alessandra Ferlini
Ferrara (ITA)

Claude Franceschi
Paris (FRA)

Giulio Gabbiani
Genève (CH)

Michael Dake
Stanford, CA (USA)

Roberto Galeotti
Ferrara (ITA)

Mark Haacke
Detroit, MI (USA)

Byung B. Lee
Washington DC (USA)

Francesco Mascoli
Ferrara (ITA)

Fabrizio Salvi
Bologna (ITA)

Bianca Weinstock-Guttman
Buffalo, NY (USA)

Robert Zivadinov
Buffalo, NY (USA)

I also note the following in a doc on the web site:

In April 2009, the technique was described during a presentation held by Prof. Paolo Zamboni at the 31° Charing Cross International Symposium at the Imperial College in London - the annual world meeting of vascular and endovascular surgeons (this piece of research was also published in JNNP, the neurology journal of the British Medical Journal).

OK, so he has published what his treatment is? I think marie said it is available, but is expensive. How much and where?

Following Prof. Zamboni’s presentation in London, many centres from all over the world contacted the Ferrara group to apply these new diagnostic and endovascular techniques. Among them also the University of Stanford, California.

Now that's a list I'd like to see. Anyone feel like emailing them for it?

[mrhodes40]

Quote:
In April 2009, the technique was described during a presentation held by Prof. Paolo Zamboni at the 31° Charing Cross International Symposium at the Imperial College in London - the annual world meeting of vascular and endovascular surgeons (this piece of research was also published in JNNP, the neurology journal of the British Medical Journal).
OK, so he has published what his treatment is? I think marie said it is available, but is expensive. How much and where?

The presentation is available from the cx xymposium for a tall fee, but the hilarescere website was supposed to have it for viewing once it was up---I looked and did not see it? did I miss it on there?

[Jamie]

Interesting that he uses balloon angioplasty.

D. Dake said that was not the best solution for veins as they are inherently flexible. One can inflate them and they can return to their previous state relatively quickly not like an artery where the plaque is broken and it returns to a natural stiff state with inherent stability.

Hence the self expanding stents that can flex with the vein but pop back open in their natural state.

[Sharon]

Woo, Hoo!! this is great. A link that can now be sent to doctors, boards of directors, philanthropists, etc.

Thanks Cheer for being on the ball and getting this to us.

[NHE]

http://www.fondazionehilarescere.org/eng/index.html

Is it just me with my old fashioned web browser, Mozilla 1.7.13, or are other people noticing that the top of that web page is cut off?

NHE

[Lyon]

.

[Needled]

Mine was cut off at home, but my computer at work is fine. I don't know what sopftware/system I have on either computer.

[IHateMS]

anyone try contacting Byung B. Lee
Washington DC (USA) ? Different name and east coast???

[peekaboo]

I went to Helarescere website and i thought I would refresh my brain w/ rereading the Chronic cerebrospinal venous insufficiency in patients with multiple sclerosis paper. The structure of the paper is considerately different than the one that is linked on our sticky. Altough much of the info is the same.

One thing I noticed this time that towards the end of the paper there are Venography pictures showing the Internal jugs, the azygous vein and the Lumbar copied text below

Selective venography of the ascending lumbar vein (LV) from the iliac vein (IV): normal appearance with characteristic hexagonal shape of the intrarachidian plexus draining outward into the LV and upward to the azygous system

We all missed this one, someone who posts here had lumbar issues dx from their doctor. I guess we need to include this region as possible MS/CCSVI locations.

http://jnnp.bmj.com/cgi/content/full/80/4/392


Holly

EDIT - now links are the same papers look the same

[mrhodes40]

Actually those pictures including image I with reflux into the lumbar veins was in the link we used to have and were always there but the pictures and explanations were physically below the references on the old paper. I did link the newer version as the pictures inserted mid- text is nicer to read as you suggested Holly!