Brian, this is part of your response to DonnaJean... "I had lymphedema for about 6 months afterwards, but that finally resolved with constant massage, and even while you have it, it is primarily an esthetic issue, (unless it refuses to go down, and then there is a danger of sepsis in the surrounding tissues)."
I would like to know, what kind of massages did you get and also if they were recomended by you surgeon. I do have lymphedema in my face at the side were the neck disection was performed. I had radiation/chemo followed by surgery (the surgery was performed 3 months ago). I asked the surgeon about my swollen face, and he jokingly said "you have lymphedema, is better tha having chicken pox". Obviously he thinks is something funny, but it is not funny for me, because not only is disfiguring but it is also painful, many times my jaw feels extremely stiff and I feel some sharp pain.
Please advice.

I am not Brian, and no, it isn't funny. The pastic surgeon showed me what she called lateral massage and it worked like a charm. I did it whenever I had a hand free. It goes like this: take two fingers, place them on the swollen skin, and gently move side to side in that spot, then move up and down, up and down in the same spot. Move to another spot and repeat. No need to exert much pressure. This should be done gently. I had rather spectacular results with this method, and my appearance returned to the normal range quite rapidly, just a couple of weeks. However, by the end of the day, I still feel a swelling and tightness in my neck and underneath my jaw, which is gone by morning. I haven't asked, but even it this never goes away, it isn't a big deal. Hope this helps.
Joanna

Joanna, Just wondering - is lymphedema something that is inevitable after a surgery like this? I know there will be swelling, but does everyone have the swelling that lasts for months like that? And how often was that special massage done per day? I'm aware that my husbands neck will be somewhat mishapen after this - but the doc said it wouldn't be that severe and not even noticable unless you really stare. I am going to print out the steps to the lateral massge you mentioned - hopefully my husbands doctor will mention this too, but in any event - I'm sure this massage can only help in speeding recovery. Thanks.

Joanna,

Like Cancer4, I also have lymphedema on my face and under my chin. It has been there since my surgery (Aug 2002). The surgery removed 70+ lymph nodes, I guess it destroyed most of the lymphatic duct in my left chin.

I noticed that my swell would come and go, for example, chewing would cause the swell to increase after each meal, then it may decrease in a few hours but never completely gone. Sometimes, the swell is not so noticeble, sometimes it really stands out.

My question to you is: after you did that massage, does the lymphedema ever come back, or once it is gone, it is gone.

Thanks

Sorry, I should have been more specific. The lateral massage got rid of the huge, unsightly swelling. I feel a tightness at the end of the day, and I am convinced that my once oval face is now round because of lingering lymph issues. I have also learned that if I sleep on the unafffected side, that helps. I have found that overall, although I feel 100%, I still am surprised by little improvements every now and again. I suspect this may go on for a long time, and the decrease in lymph stiffness may be one of the gradual improvements. I hope so!
Joanna

Joanna, thanks so much for your reply. I really appreciate it. I've been trying the massages you suggested but I'm not sure I'm doing them right. The swelling is near my jaw, from the ear down to my chin. Am I supposed to massage up and down, across the swollen area? Thanks, again for your help.

cancer4,

Joanna has given you some great advise about massage. I never knew about it until the physical therapist explained to me. But the reason I was at the therapist is the reason I am posting this.
You mentioned pain in your jaw? Can you open your mouth like you used to? I had pain and couldn't open my mouth. I have trismus - a form of lockjaw...there is information on this site about it. It is caused by radiation.
There are physical therapist that specialize in TMJ, they are ususally familiar with trismas, the treatment is similar.

Take care,
Dinah

Dinah, I do not have trismus according to my radiologist. I asked him about this and he did a test where if you can insert 3 fingers into your mouth you are fine. I was not able to do this, but I was almost there. He said that I definetly did not have trismus. Thanks a lot for your reply.
Take care

Cancer4,

I had lymphedema since my surgery (Aug.2002), it was in my left face above and below the jaw bone. 6 weeks after the surgery, I had my first infection in my chin which forced me to halt radiation and be hopitalized to drain the pus. One month later, another infection occurred and 6cc pus was drainged by syringe. Another month later, it was infected again. It was be very painful when there was infection, and the tissue in the area became so tight that the jaw would be locked. so, maybe you need to rule out any infection.

Since I had mandbulotomy and the location of infection was so close to the titanium plate that holds my jaw bone, the doctor was very concerned that I may get osteomylitis. So, I was sent to have hyperbaric oxygen treatment.

At this moment, the swell in the face has reduced a lot but it is still noticeble and it would come and go, I always got puffy face after meal because of the chewing (I guess).

I will start the massage suggested by Joanna and see what will happen.