Nancy, I am so sorry you are having such a difficult time with the after effects. Thos can be long lasting and very brutal. Ive had trismus and still battle with that. At my worst, I was able to only use about 4 tongue depressors to stretch my mouth open.

Stretch your mouth open as wide as possible and hold it about 10 seconds. Do this several times in a row and repeat several times per day. If you do not work hard on the stretching your mouth will only get worse.

Use pain meds to get your pain under control. It will also help when doing your stetching exercises. Ask your doc about more exercises you can do. Or try a speech thrapist or even a physical therapist. I used a wonderful physical therapist who helped me so much with my trismus.

Congrats on the clear PET scnas. Thats very very encouraging news. It takes a long time for most of us to bounce back from these awful treatments. Be patient, it can be done.

Best of luck with everything.

Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile