This Is MS Multiple Sclerosis Community: Knowledge & Support

Welcome to the world's leading forum on Multiple Sclerosis research, support, and knowledge. For over 10 years, This is MS has provided an unbiased community dedicated to Multiple Sclerosis patients, caregivers, and affected loved ones.
It is currently Wed May 22, 2013 5:19 pm


All times are UTC - 8 hours [ DST ]




Post new topic Reply to topic  [ 15 posts ] 
Author Message
PostPosted: Sun Jul 25, 2010 11:02 am 
Offline
Family Elder

Joined: Mon Jan 04, 2010 4:00 pm
Posts: 8507
Quote:
Ziv J Haskal Assuming that you are symptomatic and wishing to explore CCSVI treatment, you've had enough done ( with that MRV ) to move ahead and discuss venographic interventions ( treatment ) with a qualified interventional radiologist.

Quote:
Ziv J Haskal Ms Rowe-- these are 'early days' with respect to many aspects of ccsvi, of course-- science, research, defining outcome and predicting who will most benefit, durability, etc. There is not uniformity to what and how extensively to treat duri...ng venography-- there are mutiple causes of vein compression-- some which will not improve with just a balloon. A real meticulousness has to be part of therapy, lest one over or undertreat. An example: In one week, 4 patients I recently treated had four wholly different causes of narrowings in the treated veins.

Interested IRs will resumably gain experience over time as we teach them.


Quote:
Ziv J Haskal The Endovascular Today article is a good and measured article, though not peer-reviewed. Use it as a useful starting tool, but recognize that you are still likely, in these early days, to need to directly approach an experienced interventional radiologist about potential treatment-- and one who is committed to become g...ood at it.

There are multiple and different causes and levels of compression or stenosis in the affected veins: treatment, diagnosis, efficacy and durability are all affected by technique and care.

To maximize potential treatment benefit, it should be done carefully and methodically. This is important for individual patients, (and the progress, for all others that follow).

These are early days, yes, but the benefits, when we see them, are amazing-- so much so that it has become a consuming clinical and transformative treatment area for me (and my practice).

Continue to encourage the science, as you use your advocate voices, and seek therapy.

Ziv J Haskal MD FSIR FAHA FACR
Professor of Radiology, Vice Chair
Chief, Vascular and Interventional Radiology
University of Maryland
Baltimore, MD

Quote:
Ziv J Haskal Ms Puglisi, sorry about your phone tag. write us as [email edited out] if need be. I've added two ccsvi nurses, so we should be able get back to you much more readily, as for all patients. (We've also added many more times for actual treatment, so wait times should be short.)

_________________
"However, the truth in science ultimately emerges, although sometimes it takes a very long time," Arthur Silverstein, Autoimmunity: A History of the Early Struggle for Recognition


Top
 Profile  
 
 Post subject:
PostPosted: Sun Jul 25, 2010 11:03 am 
Offline
Family Elder

Joined: Mon Jan 04, 2010 4:00 pm
Posts: 8507
If you click on his name for his facebook profile, you get this:
Quote:
Dr. Haskal received his undergraduate and medical degrees through the six-year program at Boston University, Boston, Mass., in 1986. He completed his fellowship and residency at the University of California, San Francisco. He joined the radiology department at the Hospital of the University of Pennsylvania in Philadelphia as an assistant professor in 1992. In 1999, he moved to Columbia University, New York City, as a full professor and Director of the Division of Vascular and Interventional Radiology at the New York-Presbyterian Hospital. Since the fall of 2008, he has been at University of Maryland Medical Center.

Since 1994, Haskal has chaired or served on many Society of Interventional Radiology (SIR), American Heart Association, Radiological Society of North America, American College of Cardiology, and American College of Radiology committees. In 2007, he chaired the SIR Annual Scientific Meeting in Seattle, Wash. He is co-founder and co-director of the Global Embolization Symposium and Technologies (GEST) scientific meeting, a meeting that draws 900-1000 annual attendees from over 60 countries.

Dr. Haskal held a long-standing role as Deputy Editor-in-Chief of CardioVascular and Interventional Radiology (CVIR) and editorial board and reviewer positions for more than 10 other peer-reviewed journals. During his editorial tenure, the impact factor of CVIR doubled.

He is now the Incoming Editor In Chief of the Journal of Vascular and Interventional Radiology, the flagship journal of the SIR. He is a member of the Board of Trustees of the SIR Research Foundation and SIR Executive Council.

Dr. Haskal is world-renown. He has published more that 250 scientific articles, abstracts, and books, in journals ranging from Radiology and Circulation, to the New England Journal of Medicine (NEM). His February research study in NEJM garnered more than 200 million media impressions.

Dr. Haskal also co-chaired and co-authored the influential American Heart Association/ American College of Cardiology’s 2005 comprehensive Guidelines for the Treatment of Peripheral Arterial Disease (already cited by more than 450 subsequent peer-reviewed papers). Haskal has given more than 500 invited lectures worldwide, and been awarded numerous honorary fellowships, national and international awards. He has led, designed or participated in more than 30 clinical and animal research studies. His research and publications have spanned portal hypertension, venous disease, liver transplantation, peripheral vascular disease, uterine fibroid embolization, interventional oncology, human gene therapy, hemodialysis-related matters, numerous societal guidelines documents, etc.

Prior to moving to Maryland, he has been continuously named to local and national lists of “Top Doctors” and “Best Doctors” (since 1993).

_________________
"However, the truth in science ultimately emerges, although sometimes it takes a very long time," Arthur Silverstein, Autoimmunity: A History of the Early Struggle for Recognition


Top
 Profile  
 
 Post subject:
PostPosted: Sun Jul 25, 2010 12:07 pm 
Offline
Family Elder
User avatar

Joined: Mon Sep 10, 2007 3:00 pm
Posts: 4676
Location: southern California
Dr. Haskal has been graciously helping out on the Facebook page. We have over 15,000 members from around the world, and it gets a bit daunting...plus, I'm not a doctor.

He is consulting with the other IRs, and there is quite a fine group of doctors in the US now studying CCSVI in pwMS. And they are all finding it in 90-100% of the patients they test and treat. They are also finding a multiplicity of reasons for these narrowings and reflux, and each situation needs to be assessed for the individual. CCSVI treatment is not one sized fits all...which is why patients need to stay local and work with a vascular professional.

Exciting times, but as Dr. Haskal states, we're still in the beginning stages-
cheer

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


Top
 Profile  
 
 Post subject:
PostPosted: Sun Jul 25, 2010 6:40 pm 
Offline
Family Elder
User avatar

Joined: Wed Mar 17, 2010 4:00 pm
Posts: 103
Location: USA
Ms. Puglisi --that's me! thank you do much for posting this, I completely missed his response of facebook.

:)

Ann

_________________
always look on the bright side of life

Veins opened 10/15/10. RIJV still on the small side. Feeling much better.


Top
 Profile  
 
 Post subject:
PostPosted: Sun Jul 25, 2010 7:05 pm 
Offline
Family Elder
User avatar

Joined: Fri Jun 11, 2010 3:00 pm
Posts: 132
Location: North Carolina, USA
Dr. Haskal = the "Dr. Sclafani" for Facebook?? :D

_________________
CCSVI:  Making Sense of MS


Top
 Profile  
 
 Post subject:
PostPosted: Sun Jul 25, 2010 7:12 pm 
Offline
Family Elder

Joined: Tue May 19, 2009 3:00 pm
Posts: 669
Ugh, I'm just so frustrated with these continuing to be early days. They were early days a year ago, and thanks to the oh so cautious and methodical IRBs nothing of significance has happened since, in the U.S. at least. Believe me I'm all for going local but what we're getting right now is CCSVI knowledge that's a mile wide and an inch deep.


Top
 Profile  
 
 Post subject:
PostPosted: Sun Jul 25, 2010 9:04 pm 
Offline
Family Elder

Joined: Mon Jan 04, 2010 4:00 pm
Posts: 8507
shush, MS_HOPE, there is only one drsclafani!!! :)

But Dr. Haskal seems like the real deal too.

_________________
"However, the truth in science ultimately emerges, although sometimes it takes a very long time," Arthur Silverstein, Autoimmunity: A History of the Early Struggle for Recognition


Top
 Profile  
 
 Post subject: professional forums
PostPosted: Mon Jul 26, 2010 3:39 am 
Offline
Family Elder
User avatar

Joined: Thu Nov 26, 2009 4:00 pm
Posts: 356
Location: Melbourne, Australia
I wonder in the interventional radiologists have their own professional forum, where they can network and exchange ideas (in "real time" rather than waiting for publications/conferences etc). This would catalyse the scientific process.

I know the Australian sonographers have their own forum, and us Aussie CCSVI-ers have been encouraging them to sign up and swap ideas within this forum. Hopefully this will facilitate the upskilling of diagnostic centres.

hwebb


Top
 Profile  
 
 Post subject:
PostPosted: Mon Jul 26, 2010 6:32 am 
Offline
Family Elder
User avatar

Joined: Sun May 23, 2010 3:00 pm
Posts: 141
Location: 10,000 Lakes
Yes, whats needed is a place that IRs that are interested in CCSVI can go for not only technical information but MORE IMPORTANTLY A PLACE WHERE THEY CAN SPEAK WITH OTHER MEDICAL PROS FOR HELP GETTING STARTED.

I had a doctor get a hold of me recently after I sent out letters.They don't want to read articles and research all day. They get to a point where they need to be in touch with someone currently doing it. That would be great. I was lucky, a doctor that is performing now agreed to speak with him.


Top
 Profile  
 
 Post subject:
PostPosted: Mon Jul 26, 2010 8:27 am 
Offline
Family Elder
User avatar

Joined: Fri Jun 11, 2010 3:00 pm
Posts: 132
Location: North Carolina, USA
I agree, HardCopy. A forum for doctors/researchers working on MS is being planned, according to Hollie Schmidt of the Accelerated Cure Project for MS (her husband Art Mellor has MS). This of course would include IRs and anyone else. Once it's up and running, we can inform CCSVI interventionists so that CCSVI becomes one of the forum's hot topics!

Here's what Hollie said:

"One of the projects we're embarking on in collaboration with the informatics team at Massachusetts General is the creation of an online community for MS researchers where they can share information and have discussions. My hope is that it can serve as a platform for scientific exchanges on topics of interest like this. I wish it were up already so we could conduct some interviews on CCSVI, but it won't be until next year!"

Hollie wrote an article on CCSVI that appeared on page 4 of their organization's Spring Newsletter: http://www.acceleratedcure.org/download ... ol0901.pdf . It has much the same measured tone as Dr. Sclafani's article in Endovascular Today, but is written for the layperson.

Collaboration and cooperation, not competition. I can hope.

_________________
CCSVI:  Making Sense of MS


Top
 Profile  
 
 Post subject: Re: professional forums
PostPosted: Mon Jul 26, 2010 10:27 am 
Offline
Family Elder
User avatar

Joined: Mon Sep 10, 2007 3:00 pm
Posts: 4676
Location: southern California
hwebb wrote:
I wonder in the interventional radiologists have their own professional forum, where they can network and exchange ideas (in "real time" rather than waiting for publications/conferences etc). This would catalyse the scientific process.

I know the Australian sonographers have their own forum, and us Aussie CCSVI-ers have been encouraging them to sign up and swap ideas within this forum. Hopefully this will facilitate the upskilling of diagnostic centres.

hwebb


Yes, they do. The Endovascular Forum is the online professional forum for IRs and vascular professionals, and CCSVI Alliance is now a member of this community. They are already exchanging info in real time, and reporting on CCSVI interventions around the world.
cheer
www.ccsvi.org

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


Top
 Profile  
 
 Post subject:
PostPosted: Mon Jul 26, 2010 12:43 pm 
Offline
Family Elder
User avatar

Joined: Fri Jun 11, 2010 3:00 pm
Posts: 132
Location: North Carolina, USA
That's great to know, cheer. Would my local vascular surgeon, who's onto CCSVI, be able to join that group and, if so, how? Thanks!

_________________
CCSVI:  Making Sense of MS


Top
 Profile  
 
 Post subject:
PostPosted: Mon Jul 26, 2010 12:47 pm 
Offline
Family Elder

Joined: Tue May 19, 2009 3:00 pm
Posts: 669
MS_HOPE wrote:
That's great to know, cheer. Would my local vascular surgeon, who's onto CCSVI, be able to join that group and, if so, how? Thanks!

http://www.endovascular.org/


Top
 Profile  
 
 Post subject:
PostPosted: Mon Jul 26, 2010 1:19 pm 
Offline
Family Elder
User avatar

Joined: Sun May 17, 2009 3:00 pm
Posts: 168
Rokkit wrote:
MS_HOPE wrote:
That's great to know, cheer. Would my local vascular surgeon, who's onto CCSVI, be able to join that group and, if so, how? Thanks!

http://www.endovascular.org/



under hot topics

http://www.endovascular.org/evfforums/m ... 5ABCC05758


Top
 Profile  
 
 Post subject:
PostPosted: Mon Jul 26, 2010 4:14 pm 
Offline
Family Elder
User avatar

Joined: Fri Jun 11, 2010 3:00 pm
Posts: 132
Location: North Carolina, USA
Thank you, Rokkit and IHateMS! I really appreciate how helpful so many people on this site are! :)

_________________
CCSVI:  Making Sense of MS


Top
 Profile  
 
Display posts from previous:  Sort by  
Post new topic Reply to topic  [ 15 posts ] 

All times are UTC - 8 hours [ DST ]


Related topics
 Topics   Author   Replies   Views   Last post 
There are no new unread posts for this topic. some great posts over on Dr. Arata's facebook page today

[ Go to pageGo to page: 1, 2 ]

Cece

21

848

Wed Feb 13, 2013 11:53 am

NZer1 View the latest post

There are no new unread posts for this topic. Dr. Haskal offering CME on CCSVI

Cece

0

269

Wed Dec 19, 2012 6:53 pm

Cece View the latest post

There are no new unread posts for this topic. CCSVI Group. Maryland - Haskal, Treatment, Univ of Maryland

japentz

0

956

Sun Oct 17, 2010 10:24 pm

japentz View the latest post

There are no new unread posts for this topic. Facebook CCSVi

CCSVIhusband

13

1561

Tue Dec 14, 2010 7:56 am

coach View the latest post

There are no new unread posts for this topic. CCSVI on Wikipedia, Facebook, Youtube, ...?

[ Go to pageGo to page: 1, 2, 3 ]

ibex

38

6067

Sun Nov 15, 2009 1:43 am

whyRwehere View the latest post

 


Who is online

Users browsing this forum: No registered users


You cannot post new topics in this forum
You cannot reply to topics in this forum
You cannot edit your posts in this forum
You cannot delete your posts in this forum

Search for:
Jump to: