2nd Annual CCSVI Symposium in NYC July 15-17

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

Would you be interested in attending a patient day without cost?

yes
38
81%
no
5
11%
maybe
4
9%
 
Total votes : 47

Postby cheerleader » Fri Jul 15, 2011 10:53 am

Posting updates on Facebook as they come in:
From Denise Graff--Montel Williams is in attendance. Dr. Haacke presented very interesting and new research data, Dr. Sclafani has spoken about his treatment experiences, as has Dr. Ponec.
https://www.facebook.com/pages/CCSVI-in ... 0796282297


cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby Thekla » Fri Jul 15, 2011 11:10 am

so frustrating to not be there this week---I'll be in Brooklyn next week, hotels are just too expensive to stay longer... Hope everybody has a great time (and posts stuff soon!)
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Postby Kleiner » Fri Jul 15, 2011 8:37 pm

No updates from the TIMS crew? Must still be hanging out at the hotel bar!! But hey, alcohol is good for blood flow, no?? :)

Looking forward to hearing all about the day. Wish I could have been there...
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Postby bestadmom » Fri Jul 15, 2011 8:50 pm

Only one drink and an hour train ride home meant I bailed at 8:15.

The symposium was good. We heard from Dr. Haacke, Sclafani who announced he got an IRB and is going to do an informational study to publish, Dr. Ponec, an AAC nurse, Dara the ultrasound operator, two drs from Downstate who gave us phd's in stents and anticoagulation, Marc - wheelchair Kamikaze did a photo essay.

There wasn't much time for our patient round table. There were a handful of audience questions and the time ran out. We saw a preview of Jason DaSilva's movie, When I Walk; not a dry eye in the house. Montel snuck in from around 10-12 and sat in the back with Dr. Ponec.

The best part of the day, for me, was meeting everyone and getting to know many of you from tims and facebook. There was a good turnout - about 100 people in the morning ad about 60 after lunch. We are an amazing group!!!!
Last edited by bestadmom on Fri Jul 15, 2011 8:55 pm, edited 1 time in total.
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Postby Cece » Fri Jul 15, 2011 8:53 pm

It was a great time. Highlight was meeting so many friends from here.

Let's see....
The day started off with the amazing spread, thanks to a donation from Annette Funicello. I laughed when I saw the green tea well represented among the drink choices.

Sadly Dr. Zamboni has broken his leg, as reported earlier, and will be having surgery monday so was not able to be in attendance.

We heard from Dr. Haacke on MRI, Dr. Sclafani on what the procedure is like (a nuts-and-bolts catheters and sheaths talk), we heard from a nurse which was especially great.

What else? Talent was well represented, between Marc's pictures and talk, and the documentary aired at the end of the day.

Montel Williams stopped by, or so I'm told.

Dr. Sclafani did a very thorough talk on IVUS. I heard from a friend afterwards that now, putting that together with what's been on the thread here at TiMS, now she gets it.

We heard about the many different types of anticoagulation.
There was a patient roundtable discussion. ;)

We milled around talking in the room afterwards, then we took it to the bar. It was great putting names to faces to TIMS handles. I think of it as getting to know people I've already gotten to know.

Just got back here at eleven....
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Postby LauraV » Sat Jul 16, 2011 6:22 am

It was a great day in every way. The presentations were interesting and enjoyable. Dr. Sclafani's presentations on the CCSVI procedure and use of IVUS were excellent as were those by his ultrasound tech, Dara and Dr. Ponec's nurse. The presentations on stents and anticoagulants, while technically "dense" were very informative to anyone who has them or who might be getting them. Jason's film was poignant. It resonated with all of us.

And as Cece and bestadmom said, one of the highlights for me was meeting and spending time with TIMS and FB folks. We are all a great bunch of people. My only disappointment was not being able to stay around afterward. I wanted to but I was exhausted and knew I'd have a long drive home with Friday night traffic.

And finally, a big THANK YOU to all of you who put this event together. It was a memorable day. You did a great job!
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Postby drsclafani » Sat Jul 16, 2011 3:17 pm

LauraV wrote:It was a great day in every way. The presentations were interesting and enjoyable. Dr. Sclafani's presentations on the CCSVI procedure and use of IVUS were excellent as were those by his ultrasound tech, Dara and Dr. Ponec's nurse. The presentations on stents and anticoagulants, while technically "dense" were very informative to anyone who has them or who might be getting them. Jason's film was poignant. It resonated with all of us.

And as Cece and bestadmom said, one of the highlights for me was meeting and spending time with TIMS and FB folks. We are all a great bunch of people. My only disappointment was not being able to stay around afterward. I wanted to but I was exhausted and knew I'd have a long drive home with Friday night traffic.

And finally, a big THANK YOU to all of you who put this event together. It was a memorable day. You did a great job!


you are really welcome. Everyone at AAC was so iimpressed with the patients participation. I think you have to be in it to understand how impressive the patients and their involvement and activism are.

I was overwhelmed by Jason's movie. it is a bittersweek love story told around a young guy getting PPMS, hoping to overcoming it and then going into the depths as he realizes it aint gonna happen. Then resurrection when he meets and falls in love with Alice a most beautiful healthy control

as has been said already, not a dry eye in the room.

Then i went back to my room to work on my lectures worrying about how much of a financial hole i had created for my employer and how i was going to be viewed after this. Word had it that only 50 professionals had signed up.

in the morning turnout was better because of on site registrants who kept coming all day long until we had a full house and over a 100 professionals in the room.

whew!! that was a relief.

i was very proud of all the speakers today. i set up the meeting in the following segments
1 brain perfusion, cerebral hemodynamics and hydrodynamics.
2. ultrasound
3. dr diana

tomorrow, details of how the procedure is performed
then finally
how trial results and trial design

i am going out to relax

ciao for now
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Postby Cece » Sat Jul 16, 2011 4:07 pm

drsclafani wrote:in the morning turnout was better because of on site registrants who kept coming all day long until we had a full house and over a 100 professionals in the room.

whew!! that was a relief.

That worked out well!!
Very glad to hear this.
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Postby pklittle » Sat Jul 16, 2011 7:24 pm

I just want to ditto what everyone already stated. I am so thankful to Dr. Sclafani and AAC for putting this together. The facility was perfect for the event. Location location, location. It was wonderful to meet everyone and I learned so much. Not only from the technical stuff, but I gained from the emotional aspects as well...Kamakaze's poetic readings/beautiful photography that were metaphors of MS...the movie at the end of the day was astounding. That young lady that married him is one lucky gal. Wish I would have seen Montel, darn.

Dr. S, I was happy to hear you say a bell went off earlier this year, and you "get" it now, that things came together in the way you're doing the procedure. Everything you described so nicely to us about your way of doing it was perfect. After hearing your lecture on IVUS, I can't see how other doctors can do without it!
Bravo, well done!

Thanks again,
Pam
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Postby KikiT » Mon Jul 18, 2011 2:23 pm

Ditto from me too. Thank you to all involved in putting this together. Wish I could have stayed to chat after. It was so wonderful putting a face to the TIMS names and I am sorry I did not get to meet all of you.
To those I met......you are as genuine in person as you are on line.
Till we meet again....


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Postby HappyPoet » Mon Jul 18, 2011 3:04 pm

Hi Dr. Sclafani,

I'm chiming in with cheery congratulations for convening a complimentary caring, collaborative, and cooperative community and constructive college-level classroom composed of a cross-sectional collection comprised of a cohort of classy, courageous clients continually coping; a constituency of compassionate caregivers campaigning; and a combination of consummate, concerned colleagues cooperating--a cadre of cognoscenti--conducting a comprehensive consideration of chronic cerebrospinal congestion calling for consensus, coherence, and conformity of criteria; for checking criticisms and challenges; and for clearing confusion, conveying candor, conferring clarity, and creating congruity.

[NotJ, c=56]

Meeting everyone was terrific!!

:D

Edits are shown in red
Last edited by HappyPoet on Thu Jul 21, 2011 8:53 am, edited 1 time in total.
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Postby pklittle » Mon Jul 18, 2011 3:18 pm

Quite creative Happypoet!
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Postby Drury » Mon Jul 18, 2011 4:05 pm

Dr. Sclafani, Bestadmom, Cheer, Cece, EVERYONE, all I can say is WOW!!!!

Wish I could have been there........

Drury
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Postby Kathryn333 » Mon Jul 18, 2011 6:33 pm

I attended the patient day on Friday. What an experience it was. It was wonderful to meet so many patients in attendance and hear their stories. I read about successes, but this time I met some of them. I arrived just after 8:30. I saw Dr. Sclafani, but he was busy talking to someone. I met a couple from Connecticut, and we compared stories. Other patients came over and were anxious to share their stories. I met a fellow who wasn’t walking in April and was now circulating the room telling his story. The program was wonderful. Jason’s movie was beautiful and very emotional for me to watch. I was crying after the movie when a woman approached me. She was from the Annette Funicello Foundation. She said that Glen, Annette’s husband, likes to send a rep to functions. Annette was my role model when I was a teenager, and I told her so. The woman was amazed at how much I knew about Annette. It saddens me that Annette is so sick with this horrible disease, but it was reassuring that she is so loved and well cared for.

Cece and Michelle, I’m disappointed I didn’t get to meet you and the other TIMS members. I did look for you both via name tags. I didn’t know who you were until the panel discussion. By the end of the day, I was exhausted and just wanted to go back to the hotel. I didn’t even get to speak to Dr. Sclafani. Every time I saw him, he was otherwise engaged.

On the way out of the hotel, I met another woman from Ontario. She follows TIMS regularly, and like me, she prefers to lurk rather than post. She was scheduled for a procedure with Dr. Sclafani on Monday. She chose the right doctor.

Thank you, Dr. Sclafani, for organizing the symposium and including a patient day. I’m disappointed that I didn’t get to speak to you, but it had been a wonderful exciting very long day. I’m so glad I went. :)
Dorothy
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Postby Cece » Mon Jul 18, 2011 6:46 pm

Dorothy, I am disappointed too, I did not know that you were there, I would have loved to talk.

I agree about Jason's movie. It was very compelling and from the heart. I was struck by how young he was, with a young man's concerns (finding love, playing beach volleyball, making films) and how maturely he dealt with increasing disability. I thought there was going to be heartbreak (and was mad at the lovely young woman who I thought would be delivering it) and instead it went the other way altogether!

edited to add: here's a link to Jason DaSilva's website, if you weren't able to be at the symposium, go ahead and watch the trailer: www.wheniwalk.com/
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