Hi Jane!
I wanted to let you know that you are not alone. My dad also has SSC stage 3, and we are 9 months post treatment (no surgery) and his pain has also been debilitating and radiating up to his temple. I feel like we are pulling teeth to try to get answers, but nothing has been done or adjusted for us. If you have a new update, I would love to now more! we have an oncology follow up next week, and I might scream at them at this point because this has gone on for way too long. Best wishes for you guys!