Newbe & ? about CCSVI

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

Newbe & ? about CCSVI

Postby Sil » Thu Jul 22, 2010 3:11 pm

Hi Everyone,
I am happy to be here! I would like information on CCSVI. I live in Brooklyn NY and the sign up for trial in albany would be something that I have been praying for. If anyone can give me all the information I would truly appreciate it.

Thank you
Silvana :D
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Postby PCakes » Thu Jul 22, 2010 7:15 pm

Hi Sil.. i'll try to help a bit..

Check out .. http://www.facebook.com/pages/CCSVI-in- ... 297?ref=ts ..look for posts and participation by 'Cheerleader' .. and read the notes page.

On this site .. check out the 'stickys' .. you'll find them at the top of the 'topics' column.. also, 'Dr. Sclafani answers some questions', any posts by Cece and Cheerleader.. there are a few others.. you will get to know who you like to read..

Info on the Albany clinic .. http://www.communitycare.com/Practices/ ... /CCSVI.asp

good luck!
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Thank you so Much!

Postby Sil » Fri Jul 23, 2010 3:44 am

Hi PCakes,
Thank you so much. I will go on the links. Thanks again!
:D
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Re: Newbe & ? about CCSVI

Postby Pepe » Fri Jul 23, 2010 10:29 am

Sil wrote:I would like information on CCSVI.

You will find it here:

http://csvi-ms.net/en

Welcome!
Pepe.
María was Dx RRMS 1996. SPMS since 2003; Dx CCSVI by Dr. Simka on Dec.-2009; Balloon angioplasty on Jan.-2010 in Katowice (Poland); Betaseron (2000-2009); Tysabri since June 2009. BBD since 2003. IBT since Jan.-2010.
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Postby Cece » Fri Jul 23, 2010 10:55 am

Sil, we're happy you're here too. :)

There is a ton of info here but it can be overwhelming so if you have any specific questions please ask here. I have said it before, New York is a hotbed for CCSVI docs. I'm on three docs lists, they're all in Brooklyn (drsclafani) or Albany.

(California is the other "hotbed"!)
"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
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Postby Hockeydad » Fri Jul 23, 2010 11:46 am

I'm finally on some lists too. Albany and Arizona. Hoping for Dr MacDonald in Toronto to start.
RRMS since Feb , 2010. No drugs, just vitamins and exercise.
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Postby Sil » Fri Jul 23, 2010 1:54 pm

Thank you so much Pepe for the info!

Hi Cece,
Can you share the Dr. Info in Brooklyn? Names and Tele #. I live in Brooklyn NY and that would be great if I could have it done here.
Thanks a Bunch Cece!


Hi Hockeydad,

Happy for you! That great to be on the waiting list. I call Dr Mehta's office today in Albany I am hoping to hear back from someone on Monday.
All the Best!

Silvana
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Postby L » Fri Jul 23, 2010 2:01 pm

Sign up for Dr Sclafani's waiting list. His clinic, at an NYU teaching hospital I believe, is located just to the East of Prospect Park. He was shut down but, eager to start up again, he designed a clinical trial. Unfortunately it was not met with IRB approval. A modified design will be submitted within the next couple of weeks. Email Holly, at ccsviliberation.com . You'd be in safe hands and it's local!
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Postby Cece » Fri Jul 23, 2010 4:38 pm

You forgot the 'gmail': ccsviliberation@gmail.com

But his waiting list is still in wait, until he gets that irb approval. You would however be in the best of hands.
"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
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Postby L » Fri Jul 23, 2010 6:04 pm

Cece wrote:You forgot the 'gmail': ccsviliberation@gmail.com

But his waiting list is still in wait, until he gets that irb approval. You would however be in the best of hands.


Ah yes, thanks CeCe. I'd happily wait myself but I'm a bit worried about restenosis due to air travel. I suppose I should start another topic about this and see what everyone thinks.
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Postby Sil » Mon Jul 26, 2010 4:04 am

Thank you so Much Michael, I will send them an email today.

Have a great day! :D

Silvana
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Postby Sil » Tue Jul 27, 2010 1:53 pm

Hi Cece,
Would you be willing to email me off the group. I have so many question and I am hoping you can help me, My email is asbrotondo@aol.com

Thanks
Silvana


Cece wrote:You forgot the 'gmail': ccsviliberation@gmail.com

But his waiting list is still in wait, until he gets that irb approval. You would however be in the best of hands.
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