I am a newcomer to this list and the mother of a 4 yr old with a desmoid tumor. Apologies if I'm inquiring on a topic that is covered in the archives.

My son was diagnosed with a tumor at 12 months. This may not be considered a typical oral cancer, as the tumor sits behind his jaw and cheekbones. It has infiltrated muscles and his cheek. He had a resection surgery at 14 mos., where they split his jaw and removed 90% of the tumor. 5 weeks post-op, the tumor grew back to full size and he experienced lock jaw. He spent a year on chemo (methotrexate and vinblastine) and the tumor has not grown in 2 1/2 years, but has not shrunk.

We live in the Boston area and are treated at Mass General. I'm looking for help from anyone who has experienced trismus from tumors. I need to find a doc that can help get my son's mouth open. All our docs are in agreement that there is probably some obstruction other than tumor or scar tissue restricting his movement. They were unable to force his mouth open at all under general anesthesia last week. They claim that tumor or scar tissue should have responded to pressure and would have torn or stretched. His mouth didn't budge at all.

Does anyone have a jaw specialist that they can recommend who understands trismus caused by tumors?

Thanks,
Debby