Hello, my name is Trixie.

In August of 2004 (just before I hit the big "50" ) I was diagnosed with a Spindle Cell Sarcoma of the left maxilla. Underwent maxillectomy and had 35 treatments with IMRT radiation therapy at the Karmanos Cancer Center at the DMC (Detroit Medical Center). I returned to work as an RN in November. I have been suffering from Trismus (closing of the jaw) since November and most recently (2/11) underwent another jaw surgery for removal of scar tissue and biopsy for increased uptake on a recent PET scan. The biopsies came back non-malignant (YEAH!), however the Trismus continues. It is very painful, it's difficult to eat and speak. The plan at this point is to do Steroid injections in the jaw at two week intervals to help prevent the scar tissue from returning so intensley. Has anyone heard of this?

Also the PET scan shows an area at T9 of my spine that has an increased uptake. Both the Oncologist and the surgeon agree that I need to wait until I am healed in my mouth before I start investigating the spine. I have no symptoms related to my spine. No history of back injury or arthritus.

I would be interested in hearing from anyone who suffers from Trismus. I am using the Therabite but can only open about one finger. I have been through physical therapy without much improvement and I am returning to work in one week. Also as I mentioned earlier, has anyone heard of the steroid injections that they are planning to start this Friday?

Looking forward to hearing from you soon.

Trixie

Why don't they have spell check on this? Or, did I just miss it?

Hi Trixie, I still use my therabite device (2 1/2 years out), can open 3 fingers wide now. After surgery and radiation, I couldn't even open 1 finger wide. I went to a physical therapist that provided me a Dynasplint. I rented it for approx 8 months and it helped a lot. I can give you the phone #, the company is located here in Maryland, if you want. My insurance covered some of the cost. God Bless and email me if you would like more information on it. Carol

Trixie my husband had a problem opening his jaw for about a year and a half post treatment. He also had therapy which really didnt help. He got a therabite and that seemed to do the trick. He could only open about half a finger (had peg). Worked with therabite for about 3 months and he can open his mouth about 3 fingers now. He still uses the therabite once a day just for insurance I guess.
Take care,
Cheryl