1st Georgetown U. Liberation!

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

1st Georgetown U. Liberation!

Postby lucky125 » Wed Mar 17, 2010 4:25 pm

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
User avatar
Family Elder
Posts: 173
Joined: Wed Dec 02, 2009 4:00 pm
Location: USA


Postby berriesarenice » Wed Mar 17, 2010 4:40 pm

Congratulations on your liberation!!

And such great news about Georgetown...really another huge step forward!
User avatar
Family Member
Posts: 80
Joined: Tue Dec 01, 2009 4:00 pm
Location: USA

Postby cheerleader » Wed Mar 17, 2010 4:44 pm

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.
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
User avatar
Family Elder
Posts: 5358
Joined: Mon Sep 10, 2007 3:00 pm
Location: southern California

Postby ozarkcanoer » Wed Mar 17, 2010 5:01 pm

:D Lucky !!!! You have the luck of the Irish !!! On St Patrick's Day ! I am so incredibly happy for you !

User avatar
Family Elder
Posts: 1273
Joined: Thu Oct 15, 2009 3:00 pm
Location: St. Louis, Missouri

Postby prairiegirl » Wed Mar 17, 2010 6:12 pm

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

Postby lavmac56 » Wed Mar 17, 2010 6:37 pm

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

Postby MissJoy » Wed Mar 17, 2010 7:19 pm

: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
User avatar
Posts: 1
Joined: Tue Mar 16, 2010 4:00 pm
Location: Atlanta

Postby Cece » Wed Mar 17, 2010 7:25 pm

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
Family Elder
Posts: 9300
Joined: Mon Jan 04, 2010 4:00 pm

Postby Vonna » Wed Mar 17, 2010 7:32 pm

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


Postby Gordon » Wed Mar 17, 2010 7:38 pm

Such great news, For US ALL !!!! all over North America and the world.

User avatar
Family Elder
Posts: 296
Joined: Wed Jan 06, 2010 4:00 pm

Postby Johnnymac » Wed Mar 17, 2010 8:33 pm

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!

User avatar
Family Elder
Posts: 213
Joined: Wed Oct 18, 2006 3:00 pm

Postby Kaycee » Wed Mar 17, 2010 10:45 pm

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


Postby coin » Thu Mar 18, 2010 12:33 am

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
User avatar
Family Member
Posts: 63
Joined: Thu Dec 24, 2009 4:00 pm
Location: germany

Postby ErikaSlovakia » Thu Mar 18, 2010 1:10 am

Congratulations Lucky125!
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
Family Elder
Posts: 1125
Joined: Wed Jul 29, 2009 3:00 pm
Location: Slovakia, Europe

Postby bluesky63 » Thu Mar 18, 2010 4:41 am

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!). :-)
User avatar
Family Elder
Posts: 441
Joined: Mon Apr 18, 2005 3:00 pm


Return to Chronic Cerebrospinal Venous Insufficiency (CCSVI)


  • Related topics
    Last post

Who is online

Users browsing this forum: No registered users

Contact us | Terms of Service