Anyway, he was surprised by the fact the he could count all of my lesions on less than one hand, and that my symptoms are entirely related to walking and gait. I don't suffer from exhaustion, heat sensitivity, brain fog, and all those other "pesky" symptoms. He also was surprised by the absolute pressure numbers in my veins (not the pressure gradient or the numbers before and after stenting). He said that they were about 3 - 4x what he has seen in the other MS patients. He said that it wasn't high enough to be concerned about heart problems, but that it was definitely unique.
My left jugular was completely occluded and he put two stents in. My right was only partially obstructed, maybe 50 - 60%. I think he struggled over whether to do anything on the right side or not. He ended up putting one on the right side just for good measure. He found nothing in the azygos.
Thanks for the report, Sport. You are a brave sport on MANY levels, and I'm sorry your MS has progressed so fast. I am taken by a few things you mention:
1. Your number of lesions had nothing to do with your level of disability-
this is something we are seeing time and time again. Jeff and Mel- with 20 lesions each- have minimal disability. And here you are-
2. Your absolute pressure was 3 to 4 times higher than other MS patients.
(Can I get an Amen in the room?) If your blood was refluxing that fast, it would make sense that there would be more hypoxia and iron deposition (what Dr. Haacke has seen in PPMS patients on SWI MRI) and the immune system just can't clean up that fast. I'm interested to hear that Dr. Dake was certain it wasn't an issue for your heart. Good thing he's a cardio-thoracic doc, huh?
I hope, hope, hope, that this stenting mitigates that severe pressure issue. Please keep us posted, and hang in there, Sport. Good thoughts and healing prayers are with you-
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
dual stents placed 5/09
CCSVI in MS