Program for Hilarescere/CCSVI conference in Bologna

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

Program for Hilarescere/CCSVI conference in Bologna

Postby cheerleader » Tue Jul 28, 2009 11:44 am

http://www.fondazionehilarescere.org/pd ... RE-PRG.pdf

Some new universities involved include
Harvard, Stony Brook, University of Texas, and Georgetown.
!
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby javaneen » Tue Jul 28, 2009 1:07 pm

Thats excellent news!!! It's so nice to see other major centers seriously looking into this.
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Postby bestadmom » Tue Jul 28, 2009 1:18 pm

This is so exciting, especially the Harvard and Stony Brook connection. It brings hope that there will be treatment on the east coast.
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Postby mormiles » Tue Jul 28, 2009 1:40 pm

"This is so exciting, especially the" University of Texas "connection. It brings hope that there will be treatment" in the southwest.

Sorry to quote/echo you at an unfortunate moment bestadmom. I hope to obliterate this comment soon.........
Joyce (aka cypriane)~caregiver and advocate in Dallas for Steve (SPMS)----"Enter through the narrowgate..."
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Postby mrhodes40 » Tue Jul 28, 2009 2:29 pm

you guys are like twins with your responses :lol: but I had exactly the same response to the news.

I am so excited for everyone with MS that this is going foward with such strong support and interest from everywhere! Man newly diagnosed people, be they my peeps or anyone else's peeps will never have to go through what we have done...........
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 fernando » Tue Jul 28, 2009 2:57 pm

I think that one of the greatest strengths of the CCSVI theory is that it could be easily disproved or proved. You don't need years and years of following patients (see dirucotide failure) . You just gather a significant number of people and test for blood flow disturbances. Of course you need skilled technicians and this only proves - or not- that there is an association with MS. But proving association only, is a big step nevertheless.
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Postby kaykayaa » Tue Jul 28, 2009 3:00 pm

My doc's at Georgetown--I'm all over him about this when I go in August!!
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Postby prof8 » Tue Jul 28, 2009 3:13 pm

Elliott Frohman from Univ. Texas Southwestern Medical School in Dallas is a giant in the neuro world of MS. It's great he will be there
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Postby Needled » Tue Jul 28, 2009 3:34 pm

I said to someone today (hi again JavaN :lol:) that I've felt like I've been on a roller coaster ride since January w/CCSVI. With these new names coming out today, this is one of the high days, for sure! As always, thanks for the info, Cheer.
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Postby bestadmom » Tue Jul 28, 2009 4:35 pm

I hope the Stony Brook doc, who is the head of their ms center, buys into the concept. She takes my insurance!! Stony Brook and Jacobs Neurological are both part of the State University of NY so hopefully she will learn from Dr. Guttmann and advance the CCSVI theory.
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Postby cheerleader » Tue Jul 28, 2009 5:04 pm

I'm pretty stoked to see all the docs coming on board. Jeff said today he wants to send me over there for the conference...we'll see if I can snag an invite from Dr. Z. I'd love to take notes for the community :) and just be a fly on the wall.
I've been checking the Hilarescere website pretty regularly, and these new links keep showing up. Wow....
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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 Rokkit » Tue Jul 28, 2009 5:24 pm

cheerleader wrote:we'll see if I can snag an invite from Dr. Z. I'd love to take notes for the community :) and just be a fly on the wall.


OMG I hope Dr. Z goes for that, that would be fabulous!

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Postby mrhodes40 » Tue Jul 28, 2009 5:59 pm

You don't need years and years of following patients (see dirucotide failure) . You just gather a significant number of people and test for blood flow disturbances. Of course you need skilled technicians and this only proves - or not- that there is an association with MS. But proving association only, is a big step nevertheless.


Yes I so agree with you on this. Not only that but a few groups such as those treated by Dr Dake with some in depth MRI work would do it very quickly too.

1. check lesions obviously
2. but also check perfusion and mean transit time, both of which are reduced in MS and both of which are attributed currently to MS inflammation. Proving this is primary pathology, not secondary to AI, will go a long way.
3. showing treated persons have improved blood flow--while this can't show that it causes MS it would surely support the notion that treatment is worth doing for the singular sake of circulation and this can be done in days on any individual, a few months for numbers of them.
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 guitarguy » Tue Jul 28, 2009 7:06 pm

prof8 wrote:Elliott Frohman from Univ. Texas Southwestern Medical School in Dallas is a giant in the neuro world of MS. It's great he will be there


he used to be my neuro until he decided to just do research. I am in Dallas, Austin is too far way to drive unfprtatly. Surprised they are doing this at UT South western instead.
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Postby catfreak » Tue Jul 28, 2009 7:19 pm

There is a Dr Gary R Cutter, Alabama listed as part of the Scientific Board. He works at UAB in Birmingham in the Center for Pediatric Onset Demyelinating Disease. My Neuro is a partner with this center only his is a satellite office for children and teens in North Alabama.

I asked him if he had heard about the research and he said he had and it looked promising, this was in May. I had no idea he had such a close connection to one of the Doctors involved.

This make it even more exciting for me.

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9/3/09 Stanford - Dr Dake - Stent in R-J to unblock Arachnoid Cyst in Sigmoid Sinus. Stent in narrowed L-J. Balloon in narrowing where R & L Jugulars meet.
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