I saw your other post up above too ... I am so sorry she's experiencing this! Setbacks are common, but it's always a good idea to get it checked out, especially if it seems extreme to you. It's possible something got infected (even something completely unrelated to the surgery, like a tooth), and the body just can't fight it off real well right now ... so getting it checked and possibly medicated if appropriate is a reasonable thing to do. Do you have a local doctor or dentist who could at least take a quick look and see that there's not something different going on? Infected gums or something? (I don't know or think that's what's going on, but it certainly can happen, and a local doctor would be a shorter drive and something to ease your mind while trying to get that appointment with the further surgeon. And if it does turn out to be something like that, meds could be started.) Also, yes it's entirely reasonable to still be having pain issues, as things come and go during the healing process. I didn't have a flap surgery, so all I know is that it's a bigger deal than what I had ... and I was still hurting by the point you're describing. Though I had wider mouth movement, probably due to a simpler surgery.

I hope others who've had experiences closer to your daughter's can chime in quickly for you, but maybe this will at least give you something to start with. Many ((hugs)) for you both, and welcome to the forums. This is a good place to be to find help and answers and ideas.


Surgery 5/31/13
Tongue lesion, right side
SCC, HPV+, poorly differentiated
T1N0 based on biopsy and scan
Selective neck dissection 8/27/13, clear nodes
12/2/13 follow-up with concerns
12/3/13 biopsy, surgery, cancer returned
1/8/14 Port installed
PEG installed
Chemo and rads
2/14/14 halfway through carboplatin/taxotere and rads
March '14, Tx done, port out w/ complications, PEG out in June
2017: probable trigeminal neuralgia
Fall 2017: HBOT
Jan 18: oral surgery