 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 10,507 Likes: 7 | Im sorry to hear you are struggling with your recovery. Unfortunately this is completely normal. Many patients take months to adjust to their new tongue. With practice it will get easier. If your tongue needs to have further reconstruction surgery it will have to be after a full year has past. It can take that long to adjust and for the swelling to completely subside.
One pain medicine which I found very helpful was neurontin. This might help ease your pain as well, check with your doc.
Hang in there, In time it really will get better.
ChristineSCC 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  | 
