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

Debby, I can't offer any recommendations as we haven't had to deal with this, but I DO want you to know that we hope that someone can offer you some assistance so this sweet little guy can go on to being a little boy again. We wish you the BEST in finding positive and worthy treatment. May your search be very fruitful! JaneP

Thanks. He's a little trooper. He isn't bothered by the fact that he just had 3 teeth pulled and hasn't complained of pain once. I am just anxious to find a doctor who can review his case and offer us a treatment option, besides the removal of his lower jaw. I don't feel like anyone we've seen is equipped to tell us what is actually wrong and why his mouth won't open. He has used the Therabite to no avail and PT hasn't helped at all.

Hi Debby,

Don't give up. I know someone will answer your questions soon. Hang in there. I am sure there must be a better place there in Boston to help you. Hugs to you and the little one!

take care.
Diane

Hi Deb,

Me again. What about Childrens Hospital of Boston?

They seem to have a program there, I looked up on computer. http://www.childrenshospital.org/az/Site703/mainpageS703P0.html
Just thought I would try and help.

take care
Diane

Diane,
Thank you so much for your help! I will definitely consider Children's Hosp. I'm amazed that they have Desmoid tumor on their site considering how rare it is. Right now, I'm just trying to figure out what kind of doc can help us. We've been to the oncologists and they stopped the tumor from growing, which is 90% of the battle. Now we just need to figure out how to open his mouth.

I'm thinking that the maxillofacial surgeons may have the most expertise, since there must be an obstruction that is preventing the jaw joint from opening, even when forced. I was hoping someone from this site would know of a doc who has experience in this field, or with cancer patients with lock jaw.

Thank you for your help! I did see a pedi-maxillofacial doc on that site who I will contact. Good luck to you as you battle with your cancer. I hope and pray that it does not come back.

Thanks again,
Debby

Debby, from now on, when I have my 30 mo. old granddaughter, I will think about you and your "little trooper". Children are miraculous! Please let us know what is happening if you have time because your family will be included in alot of prayers. I am wishing and sending lots of strenght to you. Amy