Ooh, looks like I am the first one to post in the CCSVI section!
Dr Diana, I was wondering what your thoughts on the IJV valves are?
My diagnosis seems to stem from the fact I have malformed valves – they are not the same as a lot of MS patients in that they do open but they are mis-shapen and it seems to be slowing the flow down somehow, creating stenosis but not a great deal of relfux.
Would be interested to hear your thoughts on valves and whether they should be treated or are they needed?
Hi Chicken Boo, IJV valves! My thoughts honestly, vary with the tide of information. You probably know I just spoke at the National CCSVI Society meeting in Canada, so I got to rub elbows with the best, and we are learning as we go. My IJV valve was faulty on my right side and I had a large IJV (“garden hose”) on that side. And yuck, I can FEEL the reflux (on both sides to some degree), so I was fine with the IR ballooning that valve to toast (an 18mm balloon). But I wasn’t on mast cell treatment at that time, and now both IJV’s ache a bit (9 months later). So I wonder about an endothelial backlash with an immune reaction now. There is so much we don’t know yet, but my gut is telling me to open the valve and take all precautions to avoid an immune response (including mast cell treatment and rigorous trigger avoidance) before and after treatment. Next week, I may have a different answer! ha