Tuesday, September 27, 2011

9 Month Check-in - CCSVI

I had a venoplasty for CCSVI on December 15th of last year and though there were some minor improvements in the first 48 hours, by the time a month had gone by, I had decided that I was one of those 30 or 35 % of patients who get little or no benefit from the procedure.                                                                                 And yet, and yet....a month or so ago it suddenly occurred to me that, unlike every six-month period of my life since 2006, this time I was not looking back and realizing that I was worse physically than I had been a half-year earlier.        

Wednesday, September 7, 2011

Revolution? Patients in Charge…

Revolution? Patients in Charge
I was talking with a friend with autoimmune liver disease the other day, agreeing that we have to be our own diagnosticians and researchers and keep up with the information in our field, We both keep connected to others with our own disease and think it is mandatory to just be in charge in general.                                                                                                                                 
The subject of the resistance of some doctors when it comes to this concept came up and I mentioned that "of course, now the patients are in revolt and that's all about to end."  To my surprise, she really wasn't aware of what has been happening in the MS world in this regard.                                                                                                                                                                
When the CCSVI information came to light, (that's Chronic Cerebrospinal Venous Insufficiency)  all kinds of patients looking for access to screening and treatment started posting and trading information about which docs were doing what and where. The Canadians have lead the way on this and I admire and just plain love the energy they have spread all over the globe as a side effect from the battles they must wage for access to treatment.