Hi,

We went to the clinic today and both learned how to do lymphatic massage. Wow it helped immediately. The docs were great at explaining how the system works and what we needed to do. The swelling went down considerably when we were there and we will continue.

So for those that might be swollen you can try massage to get the damaged lymph glands to start pumping again. My hubby feels better about it. He likes to be able to try to be in some sort of control.

EllenB

It really does help. And for 10 minutes three times a day it's worth the effort! glad he's feeling better!

So glad I'm here. I just discovered another reason J's RO is an idiot. First, I had to ask him if lymphedema was going to be a side-effect. He said, "Oh yeah! I forgot to tell you about that!" Then, I asked if there would be anything that would help--compression, massage, etc. He said, "No. He'll have a bit of a turkey waddle." Completely inept.

Thank you for the information.

Oh yeah! It's amazing how much it helps... Compression garments are great! they prevent the buildup of fluids - and the pain that goes with it... First year post op/ treatment is most important! If you work on it - it can prevent or lessen the fibrosis and loosen up the scar tissue!!!

Today is the second day of our massage regimen and it is amazing to see how 10 minutes three times a day helps. He is also sleeping a bit elevated. The other interesting thing is that when we practice dancing and Eddie moves around a bit the fluid seems to drain. He does not have pain but hates the pouchy stuff. When we do the massage it really helps. The most important thing that we learned is that you have to massage all the nodes below the cheek where the fluid is so that it can drain. We do the face last so that the fluid has a place to go. I can write some of the steps if anyone is interested. The PT wrote them out very clearly for us. They also have a special compression tape that he can use if the massage does not work. They put a piece on his stomach to ensure that he is not allergic to it. Very thorough. We are still anxious about the PET scan in early November but will just have to be patient. They will not do it before then because it could give an inaccurate reading if they do it too soon. Praying and praying and praying for a clear one.

...and more information we didn't get. The OCF forum is better than any other resource for information I have found in the countless hours I have spent researching oral cancer. If I thought J's RO's ego could take it, I'd recommend that he spend a couple weeks here educating himself. Sorry. Feeling a little bitter. Been journalizing the whole thing which has forced me to relive some really painful moments.

This is great information.

OCF was a blessing to me as well. Discovered Carnation VHC here and it saved us from having to use the dreaded feeding tube and kept Eddue's weight up.

Ellen, I would love to see the directions for the massage if you don't mind sharing.

Hi Tracy and anyone else who is interested. The theory is that you need to stimulate the lymph nodes below the area where the fried ones are then encourage the fluid down to those that are pumping more efficiently.
Here are the directions:
Light pressure, stretch and direct the fluid where you want it to go
Cover the skin with as much of your hand as you can, conform to the shape of the area
Clear adjacent lymph nodes before massaging the face

1. Neck lymph nodes to the side of your windpipe on both sides. Stretch back and down toward the collar bone 5 times
2. Neck lymph nodes further back. Stretch back and down toward the collarbone. You are now closer to the ears. 5 times
3. Just above the collarbone in the hollow. Stretch down and in toward the neck. 5 times
4. With Spock hands-two fingers separated from other two. two fingers in front of ear and two in back, small circles in place. 5 times
5. Just below the armpit-put the webspace of your hands up as high as you can, then drop the hand onto the body. Stretch back and UP toward the armpit 5 times
6. NOW you are ready for the face. Put your whole hand on the side that had the tumor, stretch the skin back toward the ear then down toward the jaw line.
7. Now the final strokes- half circles with the fingertips along the cheekbone to your ear then from cheekbone down toward the jaw. OK to repeat 6 and 7 as much as 20 times or until you don't see the swelling.

VERY IMPORTANT if you reach 20th stroke on the face, it is time to start over at step 1

Three times a day

Hope this helps