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Newbe & ? about CCSVI
Posted: Thu Jul 22, 2010 2:11 pm
by Sil
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
Posted: Thu Jul 22, 2010 6:15 pm
by PCakes
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!
Thank you so Much!
Posted: Fri Jul 23, 2010 2:44 am
by Sil
Hi PCakes,
Thank you so much. I will go on the links. Thanks again!
Re: Newbe & ? about CCSVI
Posted: Fri Jul 23, 2010 9:29 am
by Pepe
Sil wrote:I would like information on CCSVI.
You will find it here:
http://csvi-ms.net/en
Welcome!
Pepe.
Posted: Fri Jul 23, 2010 9:55 am
by Cece
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"!)
Posted: Fri Jul 23, 2010 10:46 am
by Hockeydad
I'm finally on some lists too. Albany and Arizona. Hoping for Dr MacDonald in Toronto to start.
Posted: Fri Jul 23, 2010 12:54 pm
by Sil
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
Posted: Fri Jul 23, 2010 1:01 pm
by L
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!
Posted: Fri Jul 23, 2010 3:38 pm
by Cece
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.
Posted: Fri Jul 23, 2010 5:04 pm
by L
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.
Posted: Mon Jul 26, 2010 3:04 am
by Sil
Thank you so Much Michael, I will send them an email today.
Have a great day!
Silvana
Posted: Tue Jul 27, 2010 12:53 pm
by Sil
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.