Page 7 of 13

Posted: Fri Jan 14, 2011 6:40 pm
by newlywed4ever
Hopeful2 - thanks so much for sharing about Brooklyn! I do appreciate knowing as much as possible prior to going (am just a bit of a control freak!). I'll stay away from Thai Sky and probably frequent Brooklyn Bread often :) And your suggestion of preparing meals beforehand for the first few days after I return home is something I hadn't thought about.

I wish you continued healing - keep us posted. I had improvements from angio #1 that I'd like to get back. And I can't wait to meet Dr Sclafani & Holly!

Posted: Fri Jan 14, 2011 10:38 pm
by drsclafani
newlywed4ever wrote:Hopeful2 - thanks so much for sharing about Brooklyn! I do appreciate knowing as much as possible prior to going (am just a bit of a control freak!). I'll stay away from Thai Sky and probably frequent Brooklyn Bread often :) And your suggestion of preparing meals beforehand for the first few days after I return home is something I hadn't thought about.

I wish you continued healing - keep us posted. I had improvements from angio #1 that I'd like to get back. And I can't wait to meet Dr Sclafani & Holly!
for those who can afford it, i receommend having dinner at the River Cafe at 5pm the night before the treatment. The most romantic place in the universe. brooklyn bridge to the right, statue of liberty to the left, ferries on the river and the skyline, oh the skyline!

how the heck do you get anyone from AACC to call you back?

Posted: Sat Jan 15, 2011 11:32 am
by drlaura
I originally wanted to see Dr Sclafani in Brookly but an thinking of changing it to Dr Domenico in Phila as it's closer to home. Does anyone know anything about him?

Posted: Sat Jan 15, 2011 12:11 pm
by Cece
http://www.americanaccesscare.com/ourdo ... enico.html

I don't know anything more about him but Dr. Sclafani has worked with the AAC doctors to share his knowledge of CCSVI.

Just noticed that there's a CCSVI page up at American Access Care now:
http://www.americanaccesscare.com/ccsvi.html

It has the registration form pdf at the bottom. There is also the statement that after you send in the form to ccsvi@aac-llc.com you will be contacted by a ccsvi clinical coordinator within 24 - 48 hours. Not sure if that is possible just yet!

So Holly, did my insurance clear todaaaay? :wink:

Posted: Sat Jan 15, 2011 12:39 pm
by pairOdime
I'll see (CeCe) your AAC links and raise you one CeCe...look at this American Access Care CCSVI page. It notes full site coming soon:

http://www.ccsvicare.com/ccsvi.html

Nicely done :)

Posted: Sat Jan 15, 2011 12:51 pm
by Cece
Nice find, pairOdime. :D
American Access Care physicians have performed over 200 procedures to date in centers in California, Atlanta and New York. Effective January 1, 2011, Dr. Sal Sclafani will be leading AAC’s CCSVI initiative. Dr. Sclafani, in close collaboration with national AAC colleagues, is committed to maintaining a high standard of care, incorporating the latest techniques and compiling a national database to benefit patients.

Re: Appointment Notice?

Posted: Sat Jan 15, 2011 6:13 pm
by strongshoulder
HollyBarr wrote: Don't believe there's currently any substantial wait (few months, tops) ...........:D
Ahhh. Sad but true. We've now waited over a year (my wife's choice to hold out until Dr. Sclafani returned) and I've watched her decline noticeably during this time. A few more months? We'd be hard pressed to call it insubstantial. However, I will continue to honor her decision.

Will the patients feel comfortable posting their outcomes on this forum? I haven't seen much but then I'm new here and still getting the feel for it. Can anyone tell me if there's a different site where patients are reporting their outcomes?

Posted: Sat Jan 15, 2011 6:48 pm
by Cece
Strongshoulder, has she been on Dr. Sclafani's wait list from the beginning? I am sad to hear that she has declined during this time. Is she a cash or Medicare patient or has any of the insurance companies listed on the previous page?

For outcomes, patients often start their own thread. If you read back through the other pages, there are plenty to find. JCB's and CUREious's have been updated recently, they're here on the first page.

And welcome to the forum. :)

Doppler results

Posted: Sat Jan 15, 2011 8:38 pm
by Oceanlu
How long does it take to hear about doppler results from AAC Brooklyn?

Thanks in advance for a reply.

Re: Appointment Notice?

Posted: Sat Jan 15, 2011 11:24 pm
by HappyPoet
strongshoulder wrote:
HollyBarr wrote: Don't believe there's currently any substantial wait (few months, tops) ...........:D
Ahhh. Sad but true. We've now waited over a year (my wife's choice to hold out until Dr. Sclafani returned) and I've watched her decline noticeably during this time. A few more months? We'd be hard pressed to call it insubstantial. However, I will continue to honor her decision.

Will the patients feel comfortable posting their outcomes on this forum? I haven't seen much but then I'm new here and still getting the feel for it. Can anyone tell me if there's a different site where patients are reporting their outcomes?
Welcome to TIMS. :)
Here is the link to a sticky thread (always stays in the top section on page one) in which patients post their progress in a standardized format: http://www.thisisms.com/ftopict-8346.html

Posted: Sat Jan 15, 2011 11:44 pm
by strongshoulder
Thank you. It will be nice to follow along and get to know the group. Sharing the burden too, in a way.

AAC

Posted: Sun Jan 16, 2011 2:15 pm
by zinamaria
Just a tip for those of you are either self pay, or, if you have insurance and are traveling great distances and cannot afford a boutique hotel like the one recommended, and if you cannot afford to eat out seven days and nights, (like me) there is a great website: www.airbnb.com where people offer rooms and apartments for rent, some with kitchens etc, much cheaper than hotels. I am sure one can find something near Dr Sclafani..I am currently searching myself for April, when I hope to be scheduled.

Just thought this might help some folks out there.

Zina

Posted: Mon Jan 17, 2011 1:37 pm
by aliyalex
does anybody know the mailing address for holly and dr sclafani? thanks.

nevermind. i have it.

Re: Doppler results

Posted: Mon Jan 17, 2011 9:13 pm
by drsclafani
Oceanlu wrote:How long does it take to hear about doppler results from AAC Brooklyn?

Thanks in advance for a reply.
we have had trouble getting that organised and it is taking too long. sorry to all

Posted: Tue Jan 18, 2011 7:53 am
by MaggieMae
Dr. Sclafani,

When do you think there will be CCSVI procedures performed through American Access Care or any IR or Vascular doctor in the Pittsburgh area? I think I saw the there is an AAC in the Pittsburgh area.