I had a bilateral neck dissection about 2 weeks ago. I have had difficulty opening my mouth very wide and also have trouble talking, swallowing and eating since the surgery. About a week ago I started developing lymphedema in the front of my neck. It's difficult to explain but my jaw feels swollen and hurts if I try to open wide. My doctor said he doesn't know why my jaw would be hurting and they gave me something to reduce the inflammation if that is the problem. It doesn't seem to be helping. He also said that I shouldn't start lymphatic massage for another 2 weeks. Could my jaw problem be related to the lymphedema? Should I be waiting to start the massage? I've read that lymphedema should be caught early although I can't seem to find much info on neck lymphedema. Any suggestions? I am really feeling scared and alone and depressed.

Francine, I am so sorry you are having such a problem. I only had one side done, but began gentle massage as soon as I got out of the hospital. It is probably a good idea to let your doctor know that you are not improving on the medication you were given. I was also sent to physical therapy to learn exercises to regain arm and neck strength and movement. You might investigate that. With a little luck, someone who knows much more about this than I will see your post and respond. Hang in there -- the swelling really will go down.

Well, I decided to go to the Baylor-All Saints Lymphedema Clinic in Fort Worth, Tx since it's not too far from me. A friend of my sister's told me about it and highly recommended it. I've had four massage treatments and they are teaching me how to do it myself as well as how to wrap the neck and lower jaw. I am already seeing significant improvement in that I can look up and down now which I couldn't do at all when I started. The skin feels different as well and I can open my jaw a lot wider than before. My therapist is working with me on exercises to strengthen my shoulder and regain strength in my neck and I am already starting to see improvement. I came to stay at a friends house in Fort Worth and she happened to be going out of town so I had almost a week by myself which ended up being a really good thing. I started out worried, depressed and lonely but started reading a book about being in the moment and accepting where I am right now and for some reason it started to sink in or maybe I was just reading to move on to the next step in this cancer journey. Anyway, I'm feeling positive again and am even starting to get used to people staring at me. I am feeling blessed once agin to be alive and given another day.

Francine
I am glad to see you are feeling better, you have had a scarey time of it .
Just keep that new found positive attitude, it really will help .

Take Care
Marica