facial lymphedema around left eye from brain radiation

Options
redskies
redskies Member Posts: 99
edited June 2014 in Lymphedema

Hi everyone, first post in this forum.

For the past three days, the area around my left eye has become increasingly swollen (upper and lower lids and under the eye.)

Saw my onc yesterday, she sent me to the ER for a cat scan- good news is that anything nasty was ruled out.  Dx is lymphedema due to injury to the lymphatic system from whole brain radiation.

Has anyone experienced facial lymphedema?  Hoping to find some information or resources on manual drainage techniques.

Thanks,

Lynne

Comments

  • kira66715
    kira66715 Member Posts: 4,681
    edited July 2011

    I work in rad onc and had a patient with tremendous facial edema due to radiation of the neck and face--I sent him to the lymphedema clinic at the major hospital in our state--checking first that they had experience with head and neck lymphedema, and they did MLD (manual lymph drainage massage) and placed him in a facial compression garment, and it went down considerably.

    We do a lot of whole brain for small cell lung cancer, and I haven't seen facial lymphedema with it, but it obviously could happen.

    Here's a link to finding a qualified lymphedema therapist:

    http://www.stepup-speakout.org/Finding_a_Qualified_Lymphedema_Therapist.htm

    Hope you get some relief soon. Stay hydrated, keep your head up when you sleep, and let us know how you're doing.

    Kira

  • redskies
    redskies Member Posts: 99
    edited July 2011

    Thank you Kira, I have some wedge pillows I'll try tonight.  Found three therapists through your link that work at the hospital associated with the cancer center I go to, so I'll be on the phone Monday talking with my onc and interviewing therapists (hope my insurance will cover!)

    Lynne

  • Binney4
    Binney4 Member Posts: 8,609
    edited July 2011

    Lynne, how discouraging -- I'm so sorry!Frown Really glad, though, about the good scan results. Definitely find an experienced lymphedema therapist. Manual Lymph Drainage will be such a relief. Lymphedema is not a do-it-yourself problem, but just for reference, here's a page of facial self-massage:
    http://www.aurorahealthcare.org/FYWB_pdfs/x23169.pdf

    Very relaxing, and effective too -- keep us posted on your therapist search.

    Gentle hugs,
    Binney

  • redskies
    redskies Member Posts: 99
    edited July 2011

    Thank you Binney... yes, this is quite a bummer- I didn't even know it was possible!   I do plan on seeing an expert asap... this is really pushing what I can handle.  The facial massage does sound very relaxing- exactly what I need right now while I wait on Monday!

    Lynne 

Categories