This Is MS Multiple Sclerosis Community: Knowledge & Support

The original thread started by CCSVI Atlanta was closed because it violated TIMS policy (it promoted a paid service). I think it's important that we all have as much info as possible about our different options so I'm starting a new thread that lives within the rules.

Below, I've edited up some of the pertinent info originally posted by CCSVI Atlanta and some they gave me in a PM in answer to one of my questions:


In the beginning of the year some of our staff were invited to the CCSVI conference in Hamilton, ON that Dr. Zamboni and others attended. We met with Dr. Zamboni and expressed our interest in setting up an ultrasound diagnostic facility for CCSVI.

CCSVI Atlanta has begun Doppler ultrasound testing for CCSVI as per Dr. Zamboni's protocols...

Our Sonographer and MD did recently attend the first week-long training at BNAC where they trained on the equipment and Dr. Zamboni's protocols for evaluating CCSVI, and as part of their training evaluated MS patients.

...part of initial training and continuing training included and still includes scanning normals.

They are now finishing up an additional two week long in-house training here in Atlanta, and are ready to go.


I don't live in the Atlanta area, but I'm 9 months out from stent placement so I may go out there to get scanned just to see what's what at this point. If anyone else goes please post your experiences on this thread. Since CCSVI Atlanta came to TIMS and was willing to answer a few questions I had, maybe they will hang around and answer questions on this thread about CCSVI as they begin to see patients and learn more, just as Dr. Sclafani has done on his thread.

If you want to contact them directly, the number they originally posted is 404-941-2000.

I talked with someone today who is going on Tuesday. I think she'll post her experience when she gets back.

_________________
Rhonda~
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.

There are a lot of posts on CCSVI Atlanta's facebook page that are of concern. For example, it may be that the guy in charge is a chiropractor. I have no idea if the criticisms are valid, but we should have all the information in order to make good decisions:

http://www.facebook.com/pages/CCSVI-ATLANTA/106900506018744

bumping....

Rokkit,

First, thank you for clarifying the do's and dont's.

We would be happy to periodically check in and respond to questions.

Regarding the question of "Who is in charge?":

CCSVI Atlanta is organized as a non-profit corporation that has also filed for 501(c)(3) status. There is an initial board of directors, and the hope is that volunteers will come forward to lend a hand with its organization and management.

There will particularly be a need for an advisory board that will oversee a very important fund that will soon be started.

This fund will offer financial support for testing and also hopefully for transportation and even treatment for CCSVI for individuals who are in need and where insurance or other resources are not available.

If anyone would like to help, they can contact us at 404-941-2000.