Hi Again-
I posted yesterday & noticed it didn't show up on here????? Anyway...
Debbie-Regarding the surgery my mom had, I guess the cancer was surrounding and attached to her jugular/carotid but hadn't invaded inside those veins yet so the doc was able to "scrape" it off the carotid...he did remove the jugular though, I think, because you can..preventative move, I guess...your other veins take over the role of leading blood out of the brain. Did that make sense?? This doctor is an oral surgeon out of the University of Miami Hospital and is supposedly an expert on PVL...I too got sidetracked when trying to learn about PVL when mom got SSC neck...there just doesn't seem to be much info. on it out there. The regimen for inside her oral cavity to keep cancer at bay is a Nystatin rinse, and oral betacarotene and selenium (maybe ask your MD. about that). Not a cure but supposedly manages the condition from getting worse.
Dani-I have no idea how they differentiate PVL from "regular" leukoplakia...my mom's also had the condition for approx. 10 years prior to neck SSC. But maybe the regimen I mentioned above is appropriate for her too??!!! I intend on looking for more info. however, I may disappear from this site for awhile...I literally am going to have twins any day now..if I don't go into labor they are inducing on Sunday!!! My first babies...eek!