Hey and welcome,
My husband, Dan, had a sore on his tongue which after months was biopsied and turned out to be cancer, stage 3. He had partial glossectomy, modified neck dissections both sides, trach and graft. The nodes that were taken were negative for cancer, so no radiation indicated at the time. Meanwhile, Dan gets some suspicious looking "spots" around his graft on his tongue and were biopsied. They turned up to be PVL disease also, very rare, no cure and definitely precancer each time. We were trying to get some help for this when he developed a swollen gland about 3 months post tongue surgery. The oral surgeon said infection and put him on antibiotics. We happened to have an appt with another specialist regarding the PVL and brought the CT scan along and asked him to look at it. It took him 2 seconds to feel Dan's neck and look at the scan and he said 100% positive and get it out now!! That was only 2 days after seeing the oral surgeon. Dan had a radical neck dissection Christmas eve and they said they couldn't get it all because of being in the carotid and jugular and only option was chemo/rad. They said no other surgery was an option. He just finished 8 weeks chemo/rad and it was a pretty long, hard road. Now we have to wait a month before CT and MRI testing. He now has another PVL patch on his tongue that they have been watching because they obviously couldn't cut his tongue during chemo/rad. We were hoping that the treatment would kill the patch, but not sure it did at this point. It's very interesting to me that you ended up with someone who would do more surgery because it sounds like they have the same problem going on. We were told sometimes they can rework or rebuild the carotid but Dan wasn't a candidate due to where the cancer exactly was, I think. We believe now that the orginal cancer sore on his tongue which is the primary site might have been proliverative verrucous leukoplakia (PVL) also, but will probably never know. There isn't very much info about PVL and our oral surgeon hadn't ever heard of it...he had to look it up. If Dan's tests come out negative for cancer, we will have to pick back up and try and work on the PVL disease again...too many things at once, but it is nice to hear about the surgery being successful. Unfortunately, after Dan already having chemo/rad, not sure anyone would try surgery now.

Take care...if I find anything more out about PVL, I will surely let you know. Good news about your mom...that is our hope, too!

Take care, prayers are with you!
Debbie