Facial and neck lymphedema

lindab4
lindab4 Member Posts: 8
in Head and Neck Cancer #1
Hello Everyone

I am really learning a lot on this terrific website. In late January of this year I found out I had cancer. Primary is the base of tongue Stage 2. Metastisized to lymph nodes. I found a lump the size of a walnut at the top of my neck near my jawbone. That was found to be cancer, but not lymphoma. A PET scan was done to see where the cancer was coming from. My ENT thought the tonsil or tongue. The cancer in the lymph nodes was Stage 4a. I had surgery, 33 radiation treatments (6 1/2 wks) and once a week Erbitux for 7 weeks. 37 lymph nodes were removed (left side of neck) and 5 had cancer. My cancer is positive for HPV 16.

I had my first PET scan since treatment ended on July 28, 2011 and no cancer was found.
Just some background before I get to my question. Sorry to be so wordy!

I have had lymphedema in the neck area since radiation that has now moved into the left side of my face. I am seeing a physical therapist trained in dealing with lymphedema. A facial compression mask is being custom made for my face to wear at night. Looks like a ski mask. Cut out eyes, nose, and mouth and covers the whole head and face with velcro in the back.
Has anyone else had this and how successful was this in keeping the swelling down.
Thank you for any information or tips or advice you can give me.

On the positive side, although I did lose all sense of taste my taste is coming back slowly but surely and I would say it is about 75% of normal. So I have truly been blessed. Eating is possible and takes a very, very long time due to loss of saliva and my tongue not working like it used to but it is getting stronger and more able to control movement of the food to my throat. If not for applesauce, I would not be able to take pills and vitamins. Lots of facial, tongue, neck exercises to do.

Again, I love this site, what a great, brave bunch of people we cancer survivors are!!


Linda July 31, 2011

Comments

  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #2
    Turkey Neck
    Welcome to the Turkey Neck Club, and the forum too....

    The lymphedema is normal, eventually more than likely it'll go away on it's own. The glands eventually find or make new flow paths allowing the fluid to flow again.

    You can try massage, I think Marine05 has a system or procedure if I remember correctly. Also, I think there are a few that have tried the masks as well.

    You're doing well to have that much taste already... I'm about two years post treatment and I have regained about 90 - 95% of both taste and salivary function.... So there is hope, it just takes a long time usually...

    Best,
    John
  • Ed_PortOrange
    Ed_PortOrange Member Posts: 110
    #3
    Similar problem
    I had stage 4 throat cancer and recieved the same treatment you describe. I had 3 nodes involved but surgury was not performed. I'm 17 months post treatment and all ct's/pets have been clean. I still have the lymphedema in the neck area especially under the chin. I also went for therapy which reduced the swelling but only for a few hours before it was back. I bought a mask and that also seemed to reduce the swelling but it just has not found a drainage path that works properly. I now mainly do massage and believe it's just now starting to improve. At least it's now alot softer in the areas that swell.

    Good luck with your mask, I'm sure you'll notice a difference with it. I had a hard time wearing mine the entire night, 2-4 hours max.

    Stay strong your on the road to full recovery.

    Ed
  • sweetblood22
    sweetblood22 Member Posts: 3,228
    #4
    Ed_PortOrange said:

    Similar problem
    I had stage 4 throat cancer and recieved the same treatment you describe. I had 3 nodes involved but surgury was not performed. I'm 17 months post treatment and all ct's/pets have been clean. I still have the lymphedema in the neck area especially under the chin. I also went for therapy which reduced the swelling but only for a few hours before it was back. I bought a mask and that also seemed to reduce the swelling but it just has not found a drainage path that works properly. I now mainly do massage and believe it's just now starting to improve. At least it's now alot softer in the areas that swell.

    Good luck with your mask, I'm sure you'll notice a difference with it. I had a hard time wearing mine the entire night, 2-4 hours max.

    Stay strong your on the road to full recovery.

    Ed

    Marine's Scretching/Neck
    Marine's Scretching/Neck Message instructions. It is on the HNC superthread. Here's the specific link:

    STRETCHING AND NECK MESSAGE INSTRUCTIONS

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