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 Thu May 23, 2013 2:02 am


All times are UTC - 8 hours [ DST ]




Post new topic Reply to topic  [ 24 posts ]  Go to page 1, 2  Next
Author Message
PostPosted: Wed Mar 17, 2010 4:25 pm 
Offline
Family Elder
User avatar

Joined: Wed Dec 02, 2009 4:00 pm
Posts: 173
Location: USA
I have been dying to share this info with all of you, but held back at my doctor's request.

On March 3rd I had venous angioplasty at GU. I had 95% stenosis in my right IJV, 75% in the left. They used balloons only.

I had a follow up ultrasound last Friday, and there is no reflux to be found.

I can tell you this now because a reporter from the Associated Press is writing an article about CCSVI & GU! It will be out on Monday. I was interviewed about my procedure. My docs gave her my impressive venogram pictures. She also interviewed my friend whose initial ultrasound was scheduled for today.

For better or worse they are NOT taking outside patients. There are 2000 patients in the MS clinic here. They already have a stack of positive US reports of GU patients who need to be scheduled. So far I am the only one who has been treated.

I started a blog to document my experience for myself, and my family and friends. I am happy to share it with you all now. It has all of the details of my journey. It is myliberationadventure.blogspot.com.

I am so grateful to everyone who has been so generous in sharing their experiences here. I have learned so much in the months leading up to my Liberation. I am happy that I now have something to offer!

Now I am off to officially add myself to the tracking thread!

_________________
Liberated at Georgetown U. 3/3/10. Subsequent procedures at U of Maryland with Dr. Ziv Haskal 7/30/10, 12/2/10, 5/11/11. http://myliberationadventure.blogspot.com


Top
 Profile  
 
 Post subject:
PostPosted: Wed Mar 17, 2010 4:40 pm 
Offline
Family Member
User avatar

Joined: Tue Dec 01, 2009 4:00 pm
Posts: 80
Location: USA
Congratulations on your liberation!!

And such great news about Georgetown...really another huge step forward!


Top
 Profile  
 
 Post subject:
PostPosted: Wed Mar 17, 2010 4:44 pm 
Offline
Family Elder
User avatar

Joined: Mon Sep 10, 2007 3:00 pm
Posts: 4676
Location: southern California
WOOT!
So glad you can finally go public, lucky one :)
Another major university coming on board- this is exceptionally terrific news. We'll all look for the AP piece.
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: Wed Mar 17, 2010 5:01 pm 
Offline
Family Elder
User avatar

Joined: Thu Oct 15, 2009 3:00 pm
Posts: 1273
Location: St. Louis, Missouri
:D Lucky !!!! You have the luck of the Irish !!! On St Patrick's Day ! I am so incredibly happy for you !

ozarkcanoer


Top
 Profile  
 
 Post subject:
PostPosted: Wed Mar 17, 2010 6:12 pm 
Offline
Family Elder
User avatar

Joined: Fri Feb 05, 2010 4:00 pm
Posts: 228
Well Lucky, I would say that you have an apt user name-- look forward to updates. Congrats!


Top
 Profile  
 
 Post subject:
PostPosted: Wed Mar 17, 2010 6:37 pm 
Offline
Newbie
User avatar

Joined: Sun Sep 30, 2007 3:00 pm
Posts: 3
Location: Farminton, NM
It is finally gaining momentum!!! Hope it will soon move all across the country!


Top
 Profile  
 
 Post subject:
PostPosted: Wed Mar 17, 2010 7:19 pm 
Offline
Newbie
User avatar

Joined: Tue Mar 16, 2010 4:00 pm
Posts: 1
Location: Atlanta
:D HAPPY ST. PATRICK'S DAY!! Not that I'm Irish, but what positive and wonderful news to see on my first visit (new member) to ThisIsms forum. I'm freaked with happiness and hope for progress in this area, and fast!

_________________
<br />MissJoy


Top
 Profile  
 
 Post subject:
PostPosted: Wed Mar 17, 2010 7:25 pm 
Offline
Family Elder

Joined: Mon Jan 04, 2010 4:00 pm
Posts: 8508
Wow, lucky125! Great news! It really seems like CCSVI treatment has been spreading lately. Wonder where it will crop up next! :)

_________________
"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: Wed Mar 17, 2010 7:32 pm 
Offline
Family Elder
User avatar

Joined: Mon Jan 04, 2010 4:00 pm
Posts: 170
Congratulations! This must have been torture to keep quiet about! :D

_________________
Together, our voices are louder!
http://ccsvivictory.club.officelive.com/default.aspx


Top
 Profile  
 
 Post subject: Congrats
PostPosted: Wed Mar 17, 2010 7:38 pm 
Offline
Family Elder
User avatar

Joined: Wed Jan 06, 2010 4:00 pm
Posts: 296
Such great news, For US ALL !!!! all over North America and the world.

G


Top
 Profile  
 
 Post subject:
PostPosted: Wed Mar 17, 2010 8:33 pm 
Offline
Family Elder
User avatar

Joined: Wed Oct 18, 2006 3:00 pm
Posts: 214
Great news! I'm looking forward to your updates and hope the little improvements keep piling on...

We meet with our IR next Tuesday to go over my wife's scans and next steps. I get the feeling there are a lot of IRs across the US seeing patients for CCSVI now, the tide will continue to build and the momentum will be unstoppable.

Congrats on being Liberated!

-John


Top
 Profile  
 
 Post subject:
PostPosted: Wed Mar 17, 2010 10:45 pm 
Offline
Newbie
User avatar

Joined: Wed Mar 10, 2010 4:00 pm
Posts: 2
Congratulations Lucky125!! Thanks for sharing with all of us.
Associated Press!!!! Me thinks the cat is out of the bag NOW! :D


Top
 Profile  
 
 Post subject: excelletent
PostPosted: Thu Mar 18, 2010 12:33 am 
Offline
Family Member
User avatar

Joined: Thu Dec 24, 2009 4:00 pm
Posts: 63
Location: germany
I am so thrilled that Georgetown is acctually working and somehow believing in CCSVI etc on it...incredible......good luck for the next steps and I am just hoping that the Docs here in Germany will eventually also be open , except for Dr Meynand Dr. Vogel as well as Reichenbach, to take a deep look into CCSVI...best from Muncih
COIN


Top
 Profile  
 
 Post subject:
PostPosted: Thu Mar 18, 2010 1:10 am 
Offline
Family Elder

Joined: Wed Jul 29, 2009 3:00 pm
Posts: 1099
Location: Slovakia, Europe
Congratulations Lucky125!
Erika

_________________
Aug. 7, 09 Doppler Ultras. in Poland, left Jugul. valve problem, RRMS since 1996, now SPMS,
- Nov.3,09: one stent in the left jug. vein in Katowice, Poland, LDN, never on DMDs
- Jan. 19, 11: control venography in Katowice - negative but I feel worse


Top
 Profile  
 
 Post subject:
PostPosted: Thu Mar 18, 2010 4:41 am 
Offline
Family Elder
User avatar

Joined: Mon Apr 18, 2005 3:00 pm
Posts: 440
This is fantastic! I am so, so excited for you and your family. :-) I hope your recovery is smooth -- everything from the big picture to the so-called little details (the feet! the feet!). :-)


Top
 Profile  
 
Display posts from previous:  Sort by  
Post new topic Reply to topic  [ 24 posts ]  Go to page 1, 2  Next

All times are UTC - 8 hours [ DST ]


Related topics
 Topics   Author   Replies   Views   Last post 
There are no new unread posts for this topic. Georgetown information

cheerleader

2

1025

Sat Mar 20, 2010 6:30 am

lucky125 View the latest post

There are no new unread posts for this topic. TV interview of Georgetown and me!

lucky125

8

1479

Wed Apr 14, 2010 9:41 pm

ndwannabe View the latest post

There are no new unread posts for this topic. Georgetown TV story

lucky125

4

1081

Tue Apr 20, 2010 3:21 pm

mmcc View the latest post

There are no new unread posts for this topic. Procedures at Georgetown

Rosegirl

1

909

Sat May 08, 2010 5:01 pm

lucky125 View the latest post

There are no new unread posts for this topic. Georgetown Duke Studies

mrsilkykat

5

1326

Fri Feb 19, 2010 10:25 am

cathyb 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: