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chin and neck edema post radiation

ahamric's picture
ahamric
Posts: 92
Joined: Jun 2011

My husband looks like he is trying to swallow a grapefruit. Does anyone know how to help the fluid subside?

ratface's picture
ratface
Posts: 1248
Joined: Aug 2009

What he is experiencing is called 'Lymphedema'. Check out the superthread possibly? The body moves lymph fluid through the lymphatic system mostly by gravity. The head and neck drain into a major lymph center around the shoulders. There is another center around the groins. They all inter connect. Lymph fluid is comprised of hard protein which carries waste as the lymph is a filtering system. It will pass through the kidneys eventually. Lymphedema occurs because of radiation but mostly after a neck dissection when lymph nodes are removed. The pathways have been damaged thus backing up the fluid and collecting in the tissues of the neck giving a turkey neck appearance. It will get better as the body will make smaller less efficient pathways which typically takes about six months. A small amount of lymphedema will always remain. Professional lymphedema massage therapist are available at rehab and wound centers and should be easy to find. Anyone associated with breast cancer will know exactly where to locate a therapist as this condition is very common in breast cancer surgery which disturbs a major lymph center. There are several compression garments on the market for head and neck patients. 'Solaris' is one vendor that I know. The fluid will pool to what ever side he sleeps on and this is normal. He can massage it as he sits around or alternatively you can also. Begin inside the groins of the offending side with a very light circular rubbing. The touch is almost superficial and very light. Move up to the pelvis and abs as if you were pulling taffy, again just slightly touching the skin. You are stroking and pulling from the abs toward the pelvis toward the groins. Move up the offending side with this superficial pulling motion to just below the collar bone. Continue to the grapefruit pulling toward the collarbone, the side, the abs, the pelvis, the groins. Repeat. the idea is to move the fluid along it's pathway, first creating a void for it to go and then pushing and pulling it along. The touch is very light as the fluid is very close to the surface of the skin. Alternatively you could wait six months and most of it will be back to normal.

jim and i's picture
jim and i
Posts: 1627
Joined: May 2011

You are a walking information center. When I see a reply to someones question by you I know I am getting good info. Thank you for your willingness to share your knowledge. What was/is your occupation?

Debbie

ratface's picture
ratface
Posts: 1248
Joined: Aug 2009

Debbie, thanks for making my day, week, and all of next month. Lets just say I'm well read.

ahamric's picture
ahamric
Posts: 92
Joined: Jun 2011

I am going to try this tonight.

Skiffin16's picture
Skiffin16
Posts: 8087
Joined: Sep 2009

Let me one of the first to welcome him to our own private Turkey Neck Club....

Most all of us that have went through radiation have expereinced it. Like mentioned most if not all will eventually subside.

Some have used types of massage, I think MarineE5 is one that you can ask about it. It will eventually start flowing again and the lymphatic fluids will drain.

Another side that he more than likely will get soon also is called L'Hermette's Sign or Syndrom.

It's a slight electrical or shocking sensation when he places his chin down to his chest. It too will eventually go away, but effects most of us for about 9 - 12 months starting a month or two post rads.

You might also find information on Dawn's SuperThread;

SuperThread

Best,
John

Hondo's picture
Hondo
Posts: 5791
Joined: Apr 2009

Agree Turkey neck we all had it and some still do.

Hondo

ahamric's picture
ahamric
Posts: 92
Joined: Jun 2011

lol I told him I didn't understand him...must be an inside thing ; )

sweetblood22's picture
sweetblood22
Posts: 3230
Joined: Jan 2010

Yes there are a couple of links that might help in the superthread. Marine's neck massage and stretching exercises:

PRODUCTS AND TIPS THAT HELP SIDE EFFECTS:
---------------------------------------------------

STRETCHING AND NECK MESSAGE INSTRUCTIONS

NATIONAL LYMPHADEMA NETWORK

olybee's picture
olybee
Posts: 82
Joined: Jun 2011

We got a referral for my husband to go to the lymphedema clinic. His ENT said it would be a waste of time - she didn't feel it would be at all helpful - but the radiation oncologist gave us the referral and we're finally going to go. Do you guys think it is worthwhile? It sounds like it clears up on its own slowly. Just curious what everyone thinks

ahamric's picture
ahamric
Posts: 92
Joined: Jun 2011

I feel like with the discomfort and trouble swallowing in our case it is def worth a try.

sweetblood22's picture
sweetblood22
Posts: 3230
Joined: Jan 2010

There are also swallowing exercises in that section of the superthread that may be helpful. Not sure, but you could check it out.

ahamric's picture
ahamric
Posts: 92
Joined: Jun 2011

Thank you so much

olybee's picture
olybee
Posts: 82
Joined: Jun 2011

I'd rather hear suggestions from PATIENTS than from the drs because they haven't lived it. Thanks so much!

BrianKrashpad's picture
BrianKrashpad
Posts: 188
Joined: Jan 2011

I got one. Mine was called an "Epstein facioplasty support" or some such. They look pretty ridiculous but they do help lessen the lymphedema. I wore it 24/7 (or as much as I could stand to) to begin, then just every night, now I just wear it occasionally. They look pretty ridiculous, but I'm a 53-year-old man in a punk rock band, so that's not really a consideration for me.

Here's a link to a ridiculous pic of me in mine:

http://tinyurl.com/3jtbltn

Good luck.

Be well!

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