I hope you ask the simple questions that patients need to understand before paying for the therapy;
A simple series of questions on 'CCSVI syndrome' asks:
Who, When, What, How. The final 'why' is left until the first four are answered.
1 - WHO has CCSVI syndrome? - pwMS (all/many/most?) and which other diseases ?
2 - WHEN is CCSVI syndrome seen? at birth? at diagnosis? 5/10 years after MS diagnosis?
3 - WHAT is seen in CCSVI syndrome? stenosis of vein valves? webs/septums? restricted veins? veins involved?
4 - HOW is CCSVI syndrome seen? Screening test by? full diagnosis requires (tools+methods)?
When the above are fully answered then:
5 - WHY does CCSVI syndrome develop ? Not important for patients but sadly the focus for reseachers at ISNVD 2012 !
I cannot join you in person but could make a phone call to ask the quuestions in person, if that helps.
Congrats, a great panel who need to be challenged to answer questions on the 'patient's needs'. I am a realist and will accept the answer 'no one knows'. Such answers must be shared with patients, who must have realistic information to make their choice. It was a rational choice for me, so I have had the procedure twice.
This is the first series of questions on 'CCSVI syndrome'. Next series will be 'Treating CCSVI syndrome in pwMS'. THe same 'Who, When, What, How and Why' are repeated, probably in a different order.
Sponsored by CCSVI Alliance--
The multidisciplinary panel includes:
Michael Dake, MD -- Thelma and Henry Doelger Professor (III), Department of Cardiothoracic Surgery, Stanford University Medical Center, Stanford, CA
Bulent Arslan, MD -- Director of Interventional Radiology, Rush University Medical Center, Chicago, IL
Jack Burks, MD -- Chief Medical Officer, Multiple Sclerosis Association of America (MSAA), Cherry Hill, NJ
Lindsay Machan, MD -- Radiologist, Vancouver Hospital & Health Sciences Centre, Vancouver British Colombia, Canada
Salvatore J.A. Sclafani, MD -- Interventional and Vascular Radiologist, American Access Care, Brooklyn, NY (corrected)
Daniel Simon, MD -- Interventional Radiologist, Vascular Access Centers (VAC), West Orange, NJ
Gary Siskin, MD -- Chair, Department of Radiology, Albany Medical Center / Community of Care Physicians, Albany, NY