I'm going to NYU-Zamboni presentation

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

I'm going to NYU-Zamboni presentation

Postby Sharon » Thu Jan 28, 2010 5:16 pm

I will be traveling to New York City to attend the Zamboni presentation on February 9th. Even though the meeting is for clinicians and doctors, I was able to get an invitation -- in talking with the coordinator I told her that I had been treated for CCSVI at Stanford and she said I would be invited. I will also have the opportunity to meet up with a couple of MS neurologists who are following and taking part in the CCSVI research.

My plan is to audio/video record the meeting --- this has been approved by the coordinator --- I am waiting for approval from Dr. Zamboni. Just in case my plan for the audio/video is nixed, I will make sure to have paper and pencil to take notes. I want to thank "High Hopes", a newbie here on TIMS, for helping me get the tech gear together. I will report back to TIMS ASAP. "High Hopes" will be downloading the audio/video to U-Tube.

Needless to say, I feel fortunate that I am able to attend the meeting. It will be interesting to hear what Dr. Zamboni has to say -- he will have just come from the Haacke workshop (February 7th), and now with the report from Dr. Lee at Georgetown University -- I can't wait. :)

User avatar
Family Elder
Posts: 1282
Joined: Sun Nov 07, 2004 4:00 pm
Location: Colorado


Postby Ruthless67 » Thu Jan 28, 2010 5:38 pm


You Lucky Girl, :lol: Lucky Girl!! :lol:

Of course, you've made your own luck, but I couldn't help my self.

Lucky Girl, :lol: Lucky Girl!! :lol:

See what I mean, it just keeps rolling off my fingertips. lol.

Can't wait for your video, you go girl!!!!!!!!!!!

User avatar
Family Elder
Posts: 422
Joined: Tue Oct 27, 2009 4:00 pm
Location: Montana, USA

NY Meeting

Postby Bobbi » Thu Jan 28, 2010 5:48 pm

This is wonderful news. I'm so excited for you and the MS world. Looking forward to any updates.
Well done!
User avatar
Family Member
Posts: 87
Joined: Mon Dec 28, 2009 4:00 pm
Location: Southern Ontario, Canada

Postby ozarkcanoer » Thu Jan 28, 2010 5:50 pm

Sharon, I am glad we will have your keen eyes and ears at this meeting !! I for one am looking forward to whatever you report. Feb 8th is the day I have my first appointment with my neuroradiologist, so I will be having a small adventure too !!!!

Live Long and Prosper !!!

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

Postby jilthepil » Thu Jan 28, 2010 5:59 pm

That is wonderful! I am jealous. I will be looking for your update.
User avatar
Family Member
Posts: 29
Joined: Sun Jan 17, 2010 4:00 pm

Postby cheerleader » Thu Jan 28, 2010 6:53 pm

Nice work, Sharon. I'm sure you'll have a great time and enjoy hearing all the news firsthand...(and you'll know more about Dr. Zamboni's research than many of the docs!)
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 bestadmom » Thu Jan 28, 2010 7:15 pm

Congrats Sharon. This is terriffic for you and for us all. My IR is attending and will be in Hamilton too. I work in NYC so maybe I can "beg" an invite. If so, I'll let you know. I'd love to meet you.
User avatar
Family Elder
Posts: 722
Joined: Mon May 18, 2009 3:00 pm
Location: CT

Postby Sharon » Thu Jan 28, 2010 9:39 pm

Thanks everyone for your comments:

Joan - you blazed the path in Bologna, I just hope I stay on it! :wink:

OC - Congratulations on your NR appointment! I am so happy for you - it will not be a small adventure - it is huge :D :D I will be looking forward to reading your update

Bestadmom - check your PM's

My trip to NYC has been in process for a few weeks. Dr. Zamboni has been emailed and he is aware that I am attending. This will be a relatively small group - around 50 in attendance.

This is my first trip to NYC in years, so I am planning one day of tourist attractions - highlights will be the Museum of Modern Art and St. Paul's Chapel which is across the street from Ground Zero. The chapel has an interactive display of the volunteers who were on the scene after 9/11.

Lora (Ruthless) - I do feel very lucky - I have an amazing group of friends who support each other right here on TIMS

User avatar
Family Elder
Posts: 1282
Joined: Sun Nov 07, 2004 4:00 pm
Location: Colorado

Postby costumenastional » Fri Jan 29, 2010 12:51 am

Nice work Sharon!!!
Everything from the "inside" is more than useful. It's so cool that people already liberated keep trying to inform the rest of us.
Thank you so much!!!
User avatar
Family Elder
Posts: 743
Joined: Sat Jan 31, 2009 4:00 pm
Location: Greece

Postby magoo » Fri Jan 29, 2010 3:20 pm

That is wonderful! I look forward to your comments after the meeting. Enjoy NYC!
Treated by Dake 10/19/09, McGuckin 4/25/11 and 3/9/12- blockages in both IJVs, azy, L-iliac, L-renal veins. CCSVI changed my life and disease.
User avatar
Family Elder
Posts: 574
Joined: Thu Sep 10, 2009 3:00 pm
Location: Charlotte, NC

Postby Ana » Fri Jan 29, 2010 3:58 pm


I hope you'll have a wonderful time in NY and that you'll have a lot to tell us later.

Good luck

User avatar
Family Member
Posts: 93
Joined: Mon Sep 07, 2009 3:00 pm
Location: Germany

Postby JoyIsMyStrength » Fri Jan 29, 2010 8:28 pm

Sharon I'm pretty sure my neuro Dr. Stanley Krolczyk from Univ of S. FL will be there. He is setting up protocols but I don't know the status or what he's up to, will see him when he gets back. Boy will I be ready to talk to him then!

Congrats on the invite and thanks for sharing your trip with us. I'm excited for you! :D
User avatar
Family Elder
Posts: 164
Joined: Fri Jan 01, 2010 4:00 pm
Location: US

Postby Cece » Fri Jan 29, 2010 9:27 pm

Can't wait to hear what you bring back. Hope you have a great time!!!
"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 ms2009 » Sun Jan 31, 2010 10:27 pm

Thanks Sharon,
Looking forward to get your news.
User avatar
Family Member
Posts: 44
Joined: Sat Jan 16, 2010 4:00 pm

Postby catfreak » Mon Feb 01, 2010 9:53 pm


This is awesome news! We all will be waiting to hear from you! Have a fun and safe trip. :D :D

Holly - Shine On You Crazy Diamond - Pink Floyd

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.
User avatar
Family Elder
Posts: 792
Joined: Sun Jun 01, 2008 3:00 pm
Location: Mississippi


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