Yesterday, a symposium about the vascular theory of MS (aka CCSVI) was held in Brooklyn. This is a pretty exciting development because it marks one of the first times the medical community–specifically interventional radiologists(IRs)–have come together to discuss CCSVI and its treatment.
In a nutshell, here’s what was concluded: we are at the very early stages of our understanding of CCSVI–what it means, how to diagnose it and how to treat it.
Diagnostic radiologists, who read the MRI or Ultrasound images have remarked that diagnosing CCSVI is not a straightforward affair. There are incredible subtleties that need to be understood and mastered for a diagnostician to conclude CCSVI is present.
The IRs who have been treating CCSVI agree about the following: treating CCSVI is not like anything they have been doing up to now. It requires new skills, techniques and expertise. The learning curve is steep.
Where they disagree (but again, they are all “learning as they go”) is whether to balloon or stent, if they balloon, what size to use, and regardless of whether they balloon or stent, exactly where to do the repair. Those are a lot of variables, and for patients being treated today, how will their IR’s choices affect their outcome?
So where does this leave the MS community? Every individual needs to make the choices that are right for them including whether to get imaged and treated. Since the medical community who are currently working on CCSVI are still creating more questions than answers for themselves, we know that the right answers are going to take time and rigourous research. An individual touched by MS might want to consider the pros and cons about acting now, or waiting a little while for more answers.
Here are a couple of terrific links:
The CCSVI Alliance is dedicated to educating patients with research-based information, providing tools for patients to advocate for themselves, and supporting medical professionals’ exploration of Chronic Cerebrospinal Venous Insufficiency (CCSVI). http://ccsvi.org/
And here are a list of questions to ask if you are considering getting tested or treated for CCSVI: http://mssociety.ca/bc/education_consumer_questions.htm
These are exciting times, and each day as we learn more, we are closer to figuring out where CCSVI fits into the picture and how best to deal with it.