Cat (MegansMum) posted:
So if a number of people W/MS are tested for CCSVI via Doppler or MRV and deemed NOT to have CCSVI and they subsequently go to another center and test positive, via any method including venogram and they are then treated, this data never gets recorded?
The data is recorded by the second centre but it is seldom published. The debate usually centres on the method used by the first centre. This is why Prof Zamboni wrote to AoN explaining the defects in interpreting the results of the German study published in AoN.
Also remember that Dr S reported that the saw a vein valve problem with an IVUS which was not observed with a catheter venogram, so you need both of full diagnosis. Diagnosing and treating CCSVI syndrome is 'in development', which is difficult to comprehend after reading some posts on this site and on facebook.
If a drug study has it's results published and later a whole lot of folks have grave side effects or big improvement then this gets amended and published right? Why not the same for diagnosis and procedural studies?
My expertise is pharmaceuticals. Doctors use drugs for non approved diseases called 'off label' prescribing. I equate the use of arterial balloons in veins as an 'off label' procedure. Ask an interventionalist or surgeon for an expert answer.
Mark Walker - Oxfordshire, England. Retired Pharmacist. 12 years of study around MS.
Mark's CCSVI Comment: