Donnchadh wrote:Update 8 July 2011: I had to cancel my second ultrasound appointment because I still haven't received the Medicare Explanation of Benefits statement for the first ultrasound test.
Are you feeling well? Any loss of improvements, that sort of thing?
My condition has stabilized; at the very least I am no longer getting worse as was the case before my late December 2010 procedure. My younger brother recently told me that he observed I was rapidly getting worse before that procedure but didn't want to say anything to me about it before. As someone who has been diagnosed as Primary Progressive since 1990 (and told I was un-treatable by the neurologists), at this point a rapid decline would normally be anticipated.
However, I have finally accepted the fact (emotionally and psychologically) that I need a walker to help with long distances. It helps with balance issues and to help counteract spastic leg movements.
I am following my iron removal protocol along with an exercise program. It consists mostly of using an exercise bike; started at only a quarter of a mile and I am now up to two miles a day. My leg muscles had really atrophied from lack of use. CCSVI has so many negative feedback loops: because its hard to walk, you minimize walking, that in turn causes leg muscles to weaken, making walking even harder.
My upper body strength is not bad for a 63 year old man; it's walking that is my main limitation.
I notice that the severity of my symptoms is definitely related to how hot the weather is; I am much better on cooler days.
I really need to lose weight but that is difficult because the CCSVI induced whole body inflammation seems to cause a craving for carbohydrates. Again, another vicious circle.
Mentally, my mind is much clearer post-procedure.
I am absolutely convinced that the CCSVI procedure was a life-saver for me; unfortunately the problems in the bilateral sigmoid sinus could not be addressed. I still have reflux arising from those regions, and the collateral veins are still carrying the venous blood around those sites.
On a positive note, the four treated IJV areas of stenosis have maintained their openings, and there have been no clotting problems. I still take 81mg of aspirin daily.
I feel that after three separate procedures, done by three different IR's, I have pushed the boundaries of current CCSVI practice and now must simply await any further advances in treatment.