Hi all!! I am home and feeling very sleepy from all the drugs! It was a very strange and ultimately disappointing day. First, the doc and nurses were wonderful--kind, funny, professional. I've never had a more pleasant stay in a hospital! But Dr. X went in and discovered both my lower jugular veins are now completely open. The scan in Dec. showed them almost 90% blocked. There was a large collateral vein system that compensated which was definite evidence of obstruction. Both Dr. X, the Stanford doc and one other radiologist said no doubt it was there. But what happened to the blockages??? He showed me video of contrast dye flowing through the veins today--if anything the previously blocked parts were now the widest part of the vein. There was mild stenosis in the upper left jugular but so high Dr. X said it could only be fixed by stent (the Stanford films showed this too). And of course the plan today was the lower jugs. Dr. X was completely shocked, had no explanation, but also got excited because he saw this as "new" evidence --another possible piece of the bigger CCSVI puzzle. Do stenoses come and go? If they do, they might not always show up on a scan. Are they more an inflammatory reaction since they might not be permanent? Or am I complete freak of nature and just an anomaly? Dr. X has talked with the MS clinic and they are considering starting a trial of some sort. My case throws a wrench in the scheme of what we think we know about CCSVI.
So it was quite disappointing for me especially. I feel like my insurance plan was taken away. I was looking forward to charting any changes. Now my MS is very mild... No progression so I should be happy with that. But I fear the future sometimes and this was my safety blanket.
Sorry I don't have anything optimistic or certain to report.
Dr. X wants to follow this...maybe ultrasound me every 2 months to see if it comes back or comes and goes. He also thinks this might be a useful clinical trial. Do see him in 2 months. Meanwhile he will confer with the neurologists.
PS: The procedure was not scary at all. I have no pain left where the incision was. During the procedure--just a little headache.