It seems each of us has our own cross to bear with the side effects and pain. Mine is so intense some days I just want to cry it debilitates me totally. I also developed a torn rotator cuff and it send out unbelievable pain shocks. Some days it feel like a knife is in my shoulder. Other days it is better. I too have been to doc after doc and never got a straight answer from any of the. The nurologist told me I should be thankful to be alive and to have a wonderful day. I am exercising and it helps a litle but it is not the only answer because I am very much uncomfortable most of the time.

Jeff,

I had 2 neck dissections in late 03 and early 04 plus 36 radiation treatments. I also developed cellulitis in the neck area about a month after radiation.

My neck area seems to tighten up late in the afternoon accompanied by a general tightening in the mouth area where I had a near total glossectomy. I take a half teaspoon of a pain medication prescribed by my ENT which helps a LOT.

In the evening I massage each side of my neck with cocoa butter and use a therabite (also called a bitewing) to stretch my mouth. This is a device you put between your teeth. I do about 5 times for 2 minutes each. Really seems to help.

Jim
SCC Rt lateral tongue Dx 9/03, Surg 11/03 (T2/N0M0);recur SCC BOT and anterior tongue Dx 1/04; surg 2/04 (T4/N0M0) subtotal glossectomy, forearm free flap, floor of mouth reconstruction,pharyngoplasty, neck dissections;trach until 3/04;PEG still have; 36 rad (3/04-5/04)therapy 12/04-12/05; 2 esophagus endoscopies

Hi all, I still have physical therapy, I have found the pool really helps, it is about 84 - 86 degrees and my PT has me doing all types of neck exercises while in it and they seem easier to do in the water. Carol