At the meeting, she presented results from a survey showing that, contrary to what many expected, patients with MS who have comorbid conditions are less likely to have the procedure.
A progressive disease course, greater disability, older age, and male sex were associated with greater frequency of venous angioplasty (all P < .05).
The researchers now plan to try to find out where patients with MS go to get the procedure, how much they spend on it, and whether they feel it was beneficial, said Dr. Marrie.
Well, that doesn't blow me away but at least CCSVI was on the ACTRIMS agenda and discussed in what seems like noninflammatory terms.
The fact that they saw an increase in disease activity argues that venoplasty for CCSVI is having an effect in the brain, even though it was a negative effect.
"I strongly believe we should have further research on CCSVI as a concept, maybe switching from the MS population to more normal populations — aging and healthy people who have this problem, and understand what it means," [Dr. Zivadinov] said. "It's not unique to MS, and for sure, the endovascular treatment is not an option that should be done on a clinical basis."
Dr. Zivadinov wants to research CCSVI in populations other than MS? It could help to get CCSVI established as a syndrome in its own right but right now it would be nice to get the association between CCSVI and MS better explored and understood.
The Canadian trial should "prove the point once and for all" in terms of the effect of treatment, said Dr. Rae-Grant. "One way or the other, the Canadian trial will be the ultimate answer in terms of therapeutics, not in terms of whether there are vascular abnormalities, but in terms of whether this therapeutic intervention is something we should be looking to."
How can the Canadian trial be the be-all-and-end-all answer when the doctor who will be performing the interventions has not previously done this procedure? We have uniquely odd stenoses in our jugular veins. Septums and thickened valves. The learning curve is real but in Dr. Traboulsee's study, it has not been taken into account. Launch an RCT in haste, repent in leisure...and when do we get the real answers?
Still addressing delegates during the joint CMSC/ACTRIMS meeting, Dr. Rae-Grant emphasized the importance of not dismissing the possibility that CCSVI really does work.
"What if we're missing something? What if there is a vascular piece to this? What if there's a subset in which this means something? What if we're throwing the baby out with the bathwater?" And what if, down the road, it becomes clear that "we missed it," he said.
Neurologists should not be dismissive of a therapy that a good proportion of their patients are interested in and may even want to try, he added. "We can't throw it out; we don't have the data yet to dismiss it."
Ok, that's decent. There's also that talk of subsets, which seems valid enough in a disease such as MS which has such wide variability. Talking of subsets makes sense if you believe that only a portion of people with MS have CCSVI. If nearly 100% of people with MS have CCSVI, then the subset is pretty much the whole set, although there might still only be a subset of those people who benefit dramatically when the CCSVI is treated. I myself might be in a subset but it's a good subset to be in and I want anyone else who might be in this subset (those with MS with CCSVI who benefit when treated) to know it and know what their treatment options are and to be able to have it. Research needed, cooperation from neurologists needed, funding needed, and the research needs to be done excellently. It's that last part - a lack of excellence - that is the problem with Dr. Traboulsee's upcoming trial proposal, and it really is so close to being what it needs to be.