CCSVI/Hilarescere WEBSITE up and running

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

CCSVI/Hilarescere WEBSITE up and running

Postby cheerleader » Tue Jul 14, 2009 7:39 pm

Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby Jamie » Tue Jul 14, 2009 7:47 pm

woo!
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Postby bestadmom » Tue Jul 14, 2009 7:52 pm

very cool
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Postby gibbledygook » Wed Jul 15, 2009 2:03 am

Brilliant find cheereo! This stone is beginning to roll! Yay!
3 years antibiotics, 06/09 bilateral jug stents at C1, 05/11 ballooning of both jug valves, 07/12 stenting of renal vein, azygos & jug valve ballooning,
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Postby CureOrBust » Wed Jul 15, 2009 3:01 am

I noticed "Michael Dake" is on their scientific committee. I had no idea he was associated directly with them.
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Postby CureOrBust » Wed Jul 15, 2009 3:20 am

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?
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Postby mrhodes40 » Wed Jul 15, 2009 5:48 am

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?
I'm not offering medical advice, I am just a patient too! Talk to your doctor about what is best for you...
http://www.thisisms.com/ftopic-7318-0.html This is my regimen thread
http://www.ccsvibook.com Read my book published by McFarland Health topics
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Postby Jamie » Wed Jul 15, 2009 7:29 am

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.
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Postby Sharon » Wed Jul 15, 2009 4:01 pm

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.
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Re: Hilarescere WEBSITE up and running

Postby NHE » Wed Jul 15, 2009 6:35 pm

cheerleader wrote: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
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Re: Hilarescere WEBSITE up and running

Postby Lyon » Wed Jul 15, 2009 6:39 pm

.
Last edited by Lyon on Sat Nov 26, 2011 11:27 am, edited 1 time in total.
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Postby Needled » Thu Jul 16, 2009 9:50 am

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. :oops:
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Postby IHateMS » Fri Jul 17, 2009 11:57 am

anyone try contacting Byung B. Lee
Washington DC (USA) ? Different name and east coast???
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Postby peekaboo » Fri Jul 17, 2009 2:14 pm

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 :?
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Postby mrhodes40 » Fri Jul 17, 2009 3:00 pm

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! :D
I'm not offering medical advice, I am just a patient too! Talk to your doctor about what is best for you...
http://www.thisisms.com/ftopic-7318-0.html This is my regimen thread
http://www.ccsvibook.com Read my book published by McFarland Health topics
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