Lymphedema Problems

sportsman
sportsman Member Posts: 97
in Head and Neck Cancer #1
I am suffering from severe lymphedema of the face, neck and I think what appears to be my tongue. I am now over four years post surgery and treatment for pharyngeal cancer. I think they removed about fourteen lymph nodes in my neck during my surgery. I was not initially bothered by lymphedema at least as not severe as it is now. I did have massage theraphy after my radiation and chemo ended and used the epstein facio plasty device on my neck for the lymphedema for about a year after surgery. I basically only wore this after my wife did the lymphedema massages. I had gotten away from the massages for some time and now am experiencing severe lymphedema. I feel as though I have a big lump in my throat. I really believe this however is really lymphedema of the tongue. Can anyone give me suggestions on treatment or how to handle this. This effects my eating, speaking and personal appearance. Thanks for any advice you can give me.

Comments

  • D Lewis
    D Lewis Member Posts: 1,581 Member
    #2
    Not much help here...
    I'm just over one year out from end of treatment for Base-of-tongue and bilateral lymph nodes. I'm still bothered by lymphedema of the neck and chin, and it DOES happen to my tongue. It alters my speech, so I try not to engage in any loud or complex discussions when I am like that. Eh? What did you say? Or, my favorite, "Huh?"

    Deb
  • vermontliz
    vermontliz Member Posts: 11
    #3
    lymphodema
    My husbands has also come back after a while of no symptoms. Keep up the massage and if you havn't already, have your dr investigate your throat too. Garth's head & neck were clear of cancer, but he really needed to go back to the routine swishings of salt water, regular massage, and we recognized when we travel and even "pollen days" seem to make it flare up (this is just corrolation). liz
  • NW DINO
    NW DINO Member Posts: 31
    #4
    LYMPHEDEMA
    Sportsman

    I am abount 7 months out after tx for BOT SCC. Experienced lymphedema under the chin about halfway down the neck a few months after tx. I tried the epstein facio plasty device but felt it was too constrictive & also did not like it on my chin. I was also concerned about pressure on both carotid arteries at the same time - did not want to run the risk of a stroke. My therapist & I discovered that just using a 2" elastic band with velco worked much better! Make sure to use the velcro on the side of your face as it can pull hair if the joint is at the top of your head. We added a white ribbed cushion under the strap at the neck area to apply equal pressure to the neck area. After about ten minutes of wearing the device my lymph nodes on my neck would "drain" the excess buildup & the "hardness" of the buildup would subside. You could actually see & feel the lymph nodes working to help redirect the fluid. The buildup & hardness occured after sleeping all night. My main concern was that I slept with my head propped up (I found a large angle pillow helped). I go through a ten minute routine of exercise & massage to help redirect the lymph nodes down the chest area. Hope this helps!!
  • D Lewis
    D Lewis Member Posts: 1,581 Member
    #5
    NW DINO said:

    LYMPHEDEMA
    Sportsman

    I am abount 7 months out after tx for BOT SCC. Experienced lymphedema under the chin about halfway down the neck a few months after tx. I tried the epstein facio plasty device but felt it was too constrictive & also did not like it on my chin. I was also concerned about pressure on both carotid arteries at the same time - did not want to run the risk of a stroke. My therapist & I discovered that just using a 2" elastic band with velco worked much better! Make sure to use the velcro on the side of your face as it can pull hair if the joint is at the top of your head. We added a white ribbed cushion under the strap at the neck area to apply equal pressure to the neck area. After about ten minutes of wearing the device my lymph nodes on my neck would "drain" the excess buildup & the "hardness" of the buildup would subside. You could actually see & feel the lymph nodes working to help redirect the fluid. The buildup & hardness occured after sleeping all night. My main concern was that I slept with my head propped up (I found a large angle pillow helped). I go through a ten minute routine of exercise & massage to help redirect the lymph nodes down the chest area. Hope this helps!!

    NW Dino...
    Your lymphedema-reduction device sounds effective. I'm having a little bit of trouble visualizing it. Do you have any pictures?

    Deb
  • Pam M
    Pam M Member Posts: 2,196
    #6
    D Lewis said:

    NW Dino...
    Your lymphedema-reduction device sounds effective. I'm having a little bit of trouble visualizing it. Do you have any pictures?

    Deb

    http://www.supporthosestore.com/epfacsupandj1.html shows both the Epstein support, and the Jobst support - the Jobst looks like a kinder, gentler support device - the neck is not encircled; the support only goes to the underside of the chin and jaw - no support on the neck itself. I normally don't have any issues any more, but am thinking that a recent "big face" event may have been partly caused by a buildup of lymphatic fluid (tooth infection). I'm wondering if I'd have had a better time of getting the swelling down if I'd used one of these devices with the antibiotics.
  • sportsman
    sportsman Member Posts: 97
    #7
    NW DINO said:

    LYMPHEDEMA
    Sportsman

    I am abount 7 months out after tx for BOT SCC. Experienced lymphedema under the chin about halfway down the neck a few months after tx. I tried the epstein facio plasty device but felt it was too constrictive & also did not like it on my chin. I was also concerned about pressure on both carotid arteries at the same time - did not want to run the risk of a stroke. My therapist & I discovered that just using a 2" elastic band with velco worked much better! Make sure to use the velcro on the side of your face as it can pull hair if the joint is at the top of your head. We added a white ribbed cushion under the strap at the neck area to apply equal pressure to the neck area. After about ten minutes of wearing the device my lymph nodes on my neck would "drain" the excess buildup & the "hardness" of the buildup would subside. You could actually see & feel the lymph nodes working to help redirect the fluid. The buildup & hardness occured after sleeping all night. My main concern was that I slept with my head propped up (I found a large angle pillow helped). I go through a ten minute routine of exercise & massage to help redirect the lymph nodes down the chest area. Hope this helps!!

    Lymphedema
    Thanks for your reply NW DINO. I had asked my therapist about the pressure on the carotid artery also. Plus the Epstein facio plasty device is difficult to wear for long periods of time and for what it is expensive in my estimation. I am curious about the elastic band you are using and how to make one in regards of what material to use, where to find the material and actually who made it for you and is there any directions you may have to make one. Also did you have quite a few lymph nodes removed when you were diagnosed. Any help you could give me on this would be appreciated. My e-mail contact is coachmandavis@yahoo.com and you can reply to the e-mail address. Sounds like this is very helpful to you and hopefully could benefit me. Thanks for your reply.
  • NW DINO
    NW DINO Member Posts: 31
    #8
    sportsman said:

    Lymphedema
    Thanks for your reply NW DINO. I had asked my therapist about the pressure on the carotid artery also. Plus the Epstein facio plasty device is difficult to wear for long periods of time and for what it is expensive in my estimation. I am curious about the elastic band you are using and how to make one in regards of what material to use, where to find the material and actually who made it for you and is there any directions you may have to make one. Also did you have quite a few lymph nodes removed when you were diagnosed. Any help you could give me on this would be appreciated. My e-mail contact is coachmandavis@yahoo.com and you can reply to the e-mail address. Sounds like this is very helpful to you and hopefully could benefit me. Thanks for your reply.

    LYMPHEDEMA
    I need to ask my therapist who makes the 2" padded band I am using for therapy. She has been out of the office the last couple days. I will update as soon as I can. It is a simple device - I like using the velcro tape to secure it in place instead of any type of clamp. Only had a few lymph nodes removed with my neck dissection to remove lump.
  • NW DINO
    NW DINO Member Posts: 31
    #9
    D Lewis said:

    NW Dino...
    Your lymphedema-reduction device sounds effective. I'm having a little bit of trouble visualizing it. Do you have any pictures?

    Deb

    VELFOAM
    The name of the product is Velfoam. You can buy a 36" section for $4.50 at www.lyphodemaproducts.com. I just wrap it around my head - under the chin & top of head. Velcro tape holds it together at the ends. Thus, you do not need the side supports around the face.

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