chin and neck edema post radiation

ahamric
ahamric Member Posts: 92
in Head and Neck Cancer #1
My husband looks like he is trying to swallow a grapefruit. Does anyone know how to help the fluid subside?

Comments

  • ratface
    ratface Member Posts: 1,337 Member
    #2
    Mostly time, but
    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.
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #3
    Turkey Neck Club
    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
    Hondo Member Posts: 6,636 Member
    #4
    Skiffin16 said:

    Turkey Neck Club
    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

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

    Hondo
  • jim and i
    jim and i Member Posts: 1,788 Member
    #5
    ratface said:

    Mostly time, but
    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.

    Ratface
    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
    ratface Member Posts: 1,337 Member
    #6
    jim and i said:

    Ratface
    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

    You made my day
    Debbie, thanks for making my day, week, and all of next month. Lets just say I'm well read.
  • sweetblood22
    sweetblood22 Member Posts: 3,228
    #7
    Yes there are a couple of
    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
    olybee Member Posts: 85
    #8
    sweetblood22 said:

    Yes there are a couple of
    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

    lymphedema treatment
    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
    ahamric Member Posts: 92
    #9
    olybee said:

    lymphedema treatment
    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

    good question
    I feel like with the discomfort and trouble swallowing in our case it is def worth a try.
  • ahamric
    ahamric Member Posts: 92
    #10
    ratface said:

    Mostly time, but
    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.

    Thank you
    I am going to try this tonight.
  • ahamric
    ahamric Member Posts: 92
    #11
    Skiffin16 said:

    Turkey Neck Club
    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

    my husband said gobble gobble
    lol I told him I didn't understand him...must be an inside thing ; )
  • ahamric
    ahamric Member Posts: 92
    #12
    sweetblood22 said:

    Yes there are a couple of
    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

    awesome
    Thank you so much
  • olybee
    olybee Member Posts: 85
    #13
    ahamric said:

    awesome
    Thank you so much

    THANK YOU
    I'd rather hear suggestions from PATIENTS than from the drs because they haven't lived it. Thanks so much!
  • sweetblood22
    sweetblood22 Member Posts: 3,228
    #14
    ahamric said:

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

    Ahamric
    There are also swallowing exercises in that section of the superthread that may be helpful. Not sure, but you could check it out.
  • BrianKrashpad
    BrianKrashpad Member Posts: 188
    #15
    Jaw bra!
    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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