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 Mon May 20, 2013 10:58 am

View unanswered posts | View active topics


Board index » Treatments » Chronic Cerebrospinal Venous Insufficiency (CCSVI)

All times are UTC - 8 hours [ DST ]



Post new topic Reply to topic  Page 1 of 1
  [ 12 posts ] 
  Print view Previous topic | Next topic 
Author Message
cheerleader
PostPosted: Mon Mar 28, 2011 7:42 am 
Offline
Family Elder
User avatar

Joined: Mon Sep 10, 2007 3:00 pm
Posts: 4676
Location: southern California
News from SIR in Chicago in Science Daily--

Quote:
Vein-Opening Treatment Safe for Multiple Sclerosis Patients, Say Researchers
ScienceDaily (Mar. 28, 2011) — Understanding that angioplasty -- a medical treatment used by interventional radiologists to widen the veins in the neck and chest to improve blood flow -- is safe may encourage additional studies for its use as a treatment option for individuals with multiple sclerosis, say researchers at the Society of Interventional Radiology's 36th Annual Scientific Meeting in Chicago, Ill.

"Angioplasty -- the nonsurgical procedure of threading a thin tube into a vein or artery to open blocked or narrowed blood vessels -- is a safe treatment. Our study will provide researchers the confidence to study it as an MS treatment option for the future," said Kenneth Mandato, M.D., an interventional radiologist at Albany Medical Center in Albany, N.Y. In a retrospective study, 231 MS patients (age range, 25 to 70 years old; 147 women, 84 men) underwent this endovascular treatment of the internal jugular and azygos veins with or without placement of a stent (a tiny mesh tube). "Our results show that such treatment is safe when performed in the hospital or on an outpatient basis -- with 97 percent treated without incident," Mandato noted.


link

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


Top
 Profile  
 
CCSVIhusband
 Post subject:
PostPosted: Mon Mar 28, 2011 7:44 am 
Offline
Family Elder
User avatar

Joined: Sun Jun 27, 2010 3:00 pm
Posts: 474
Location: Pittsburgh, PA USA
Cheer, is CCSVI Alliance trying to get news to the big media? I know we've seen some stuff in Philly paper, in the NYTimes, but what about CNN, FoxNews ...

We often hear about "promising treatments" for other conditions ... why haven't we heard a "promising treatment" for CCSVI ...

Just curious if the Alliance has a PR arm ...
Top
 Profile  
 
cheerleader
 Post subject:
PostPosted: Mon Mar 28, 2011 7:50 am 
Offline
Family Elder
User avatar

Joined: Mon Sep 10, 2007 3:00 pm
Posts: 4676
Location: southern California
CCSVIhusband wrote:
Cheer, is CCSVI Alliance trying to get news to the big media? I know we've seen some stuff in Philly paper, in the NYTimes, but what about CNN, FoxNews ...

We often hear about "promising treatments" for other conditions ... why haven't we heard a "promising treatment" for CCSVI ...

Just curious if the Alliance has a PR arm ...


We are grass roots, mostly volunteer operation with one consultant. We do not have a PR person, but we do send out press releases. As far as national coverage--Jeff and I were interviewed by CBS Evening News a year and a half ago, along with Dr. Zamboni in Italy, but it never aired. We get better national coverage in Canada...

We're holding a round table discussion in Chicago tomorrow night, and have invited local press. We do what we can in local areas--we've been in the local print/TV news in Seattle, Boston, Tampa and now Chicago in 2011. We need help...
cheer

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


Top
 Profile  
 
Cece
 Post subject:
PostPosted: Mon Mar 28, 2011 8:18 am 
Offline
Family Elder

Joined: Mon Jan 04, 2010 4:00 pm
Posts: 8506
Thank you to Dr. Mandato for this safety study! 97% of patients were treated without incident.

I believe this is a short term study, looking only at incidents during or immediately after the procedure, so we also need a three-month or six-month or one-year safety study.
Top
 Profile  
 
WeWillBeatMS
 Post subject:
PostPosted: Mon Mar 28, 2011 10:12 am 
Offline
Family Elder
User avatar

Joined: Wed Feb 03, 2010 4:00 pm
Posts: 169
What help do you need Cheer? My wife and I are in SE Florida and available. I have been approved by my insurance for the ultrasound and liberation procedure with Dr. Sclafani in Brooklyn. Just waiting to get an actual appointment set for it. Pretty excited about it to say the least.

Regarding the CBS Evening News interview, have you guys tried reaching back out to them and inviting them for a follow-up interview since it's been a year and a half? How huge that would be if they aired your story. I'm thinking the CBS big dogs/lawyers may be more likely to go along with releasing the story if they have the follow-up interview.

WeWillBeatMS

_________________
<div>WeWillBeatMS<br /><br /><br />Zamboni for President!</div>
Top
 Profile  
 
codefellow
 Post subject:
PostPosted: Mon Mar 28, 2011 10:39 am 
Offline
Family Elder
User avatar

Joined: Tue Nov 18, 2008 4:00 pm
Posts: 120
CCSVIhusband wrote:
Cheer, is CCSVI Alliance trying to get news to the big media? I know we've seen some stuff in Philly paper, in the NYTimes, but what about CNN, FoxNews ...

We often hear about "promising treatments" for other conditions ... why haven't we heard a "promising treatment" for CCSVI ...

Just curious if the Alliance has a PR arm ...


I think we can forget CNN for a very long time to come.

Dr. Gupta is a neurologist.
Top
 Profile  
 
1eye
 Post subject:
PostPosted: Mon Mar 28, 2011 10:47 am 
Offline
Family Elder
User avatar

Joined: Wed Mar 17, 2010 4:00 pm
Posts: 2562
Location: Kanata, Ontario, Canada
There was a guy who married a woman who used to do Who Wants To Be A Millionaire. He had "MS" for 30 years, was a former war correspondent, and wrote a book, which I read. Not the book's fault at all, I can't remember his or her names. I think his name is Richard something. Anybody?

_________________
"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'MS' is over - if you want it
Patients sans/without patience
Top
 Profile  
 
Lyon
 Post subject:
PostPosted: Mon Mar 28, 2011 10:52 am 
Offline
Family Elder

Joined: Wed May 03, 2006 3:00 pm
Posts: 6063
..


Last edited by Lyon on Fri Jun 24, 2011 6:32 pm, edited 1 time in total.

Top
 Profile  
 
cheerleader
 Post subject:
PostPosted: Mon Mar 28, 2011 10:53 am 
Offline
Family Elder
User avatar

Joined: Mon Sep 10, 2007 3:00 pm
Posts: 4676
Location: southern California
1eye wrote:
There was a guy who married a woman who used to do Who Wants To Be A Millionaire. He had "MS" for 30 years, was a former war correspondent, and wrote a book, which I read. Not the book's fault at all, I can't remember his or her names. I think his name is Richard something. Anybody?


He's Richard Cohen, married to Meredith Viera, and he and Jeff have met in NYC and correspond regularly. He's a great guy...the national media is not interested in this story. They want more research, more evidence. Local is working much better.
cheer

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


Top
 Profile  
 
ikulo
 Post subject:
PostPosted: Mon Mar 28, 2011 4:53 pm 
Offline
Family Elder
User avatar

Joined: Tue Aug 04, 2009 3:00 pm
Posts: 445
Location: colorado
After reading this facebook post http://www.facebook.com/permalink.php?s ... 2193352145, I think we should expand our definition of safety to include incidents of scarring.

Quote:
I am much worse as all 3 veins are now 100% blocked with scarring after 5 procedures. They have been this way since the second procedure. Doctors were unable to do anything with the last 3 procedures. And I am not the only one who has had a negative outcome.


These types of reports are increasing, yet the research hasn't necessarily reflected on the implications of having veins beyond repair.
Top
 Profile  
 
blossom
 Post subject: ccsvi
PostPosted: Mon Mar 28, 2011 8:10 pm 
Offline
Family Elder
User avatar

Joined: Thu Dec 03, 2009 4:00 pm
Posts: 1235
Location: south western pa.
yes, the procedure is safe enough. but, there is a lot of figureing things out on ways to prevent something potentially wonderful from turning into a disaster as it has for some. i haven't heard of any real good back up plan if that happens.

that's why i hope soon that all walks of medicine gets in on this. from possitble stem cell, chiropractics, you name it. the ir's are doing a great job but it's looking more and more like there has to be a plan of action in place that is more effective at preventing these type of disasters and treating the disaster than what there is at this point.

once ccsvi is accepted more hopefully we'll see this.

ccsvi alliance is trying to get it out there and so are others so maybe this will happen. soon not later. there are a lot of great successes at this point but what happens to those in trouble after the procedure? even bad veins i would think would be better than a scarred clotted vein with no way at this point of fixing.

but as safe as the procedure is, there is a much needed long term approach needed badly.
Top
 Profile  
 
Brainteaser
 Post subject:
PostPosted: Mon Mar 28, 2011 9:41 pm 
Offline
Family Elder
User avatar

Joined: Fri Jan 14, 2005 4:00 pm
Posts: 421
Location: Melbourne, Australia
Certainly the procedure is safe enough in that you are unlikely to die on the operating table or shortly thereafter. But the problem is something more insidious. The real issue is whether one's health might deteriorate further along. I respect the efforts of doctors who are making a genuine effort to monitor and maximise the benefits from the treatment. Patients should feel safe in their hands - but maybe there are not enough doctors of this ilk.
Top
 Profile  
 
Display posts from previous:  Sort by  
Post new topic Reply to topic  Page 1 of 1
  [ 12 posts ] 

Board index » Treatments » Chronic Cerebrospinal Venous Insufficiency (CCSVI)

All times are UTC - 8 hours [ DST ]

Related topics
 Topics   Author   Replies   Views   Last post 
There are no new unread posts for this topic. New Brunswick will fund MS/CCSVI vein-opening treatment

squiffy2

1

1240

Thu Nov 25, 2010 11:02 pm

garyak View the latest post

There are no new unread posts for this topic. Science Daily on CCSVI - word is spreading!

HappyPoet

10

1667

Wed Oct 28, 2009 4:27 pm

Sharon View the latest post

There are no new unread posts for this topic. MS vein-opening trial announced for B.C. and Quebec

[ Go to pageGo to page: 1, 2 ]

oreo

28

953

Wed Oct 10, 2012 12:30 am

Azaeleaprawn View the latest post

There are no new unread posts for this topic. Vein-opening for multiple sclerosis investigations continue

erinc14

1

291

Mon Mar 25, 2013 10:50 am

Shayk View the latest post

There are no new unread posts for this topic. Science Update: Vein printing

daniel

1

981

Mon Mar 22, 2010 1:31 pm

thisisalex 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: