probly this is advice in the category of "you shouldn't do this, but if it happens anyway, this is something to notice"

i have noticed TWICE in the last 3 months that decongestants have a major and lasting impact on my lymphedema in my surgery area of my neck.

i got a cold in feb which was super bad, and it caused my sinuses and my eustachean tubes to clog completely. i took double doses of cold medecine or decongestants to get to the point of clearing my E tubes so i could hear and be able to feel like i have balance. coincidentally, my lymphedema noticeably shrunk by nearly half.

in the last few days i got another cold, but much less severe. today i took regular doses of generic dayquil. just a few minutes ago i noticed in the mirror (brushing my teeth for the umpteenth time today) that my neck has shrunk by about 15% or so compared to this morning... (yes, i pay that much attention).

so, i am NOT recommending anyone dose themselves on pseudoephedrine or benadryl to shrink the lymphedema (especially considering the fearful reaction your salivary glands may have!), BUT if you do have to take decongestants, notice your lymphedema's reaction, k?

I have much,much swelling of chin and neck also. I cannot get rid of it after surgery and now I am in radiation and it seems to be getting worse. How long have you had this?

I am almost 5 years out and still have lymphedema on the left side of my face, guess I always will...I went to see another specialist in this area Friday, ....they are ordering a cloth type thing for my face(cannot think of the name of it) to wear at bedtime, I already had one from a few years back, anyway, this one is much softer, I said I would give it a try and they are also going to do massage on me.....Carol

Carol,
What kind of specialist handles this?

mine started as soon as the dr took out the drainage tubes. not a swelled hardness in the skin, but in the underlying tissue. 10/06. last through treatment until i got a cold at the end of feb 07 when i noticed it the first time. then again a few days ago.

dang, 5 years? my body weight is about 195, 5'11" in height and i usually take a single dose but in half time, i.e. 2 pseudoehpedrin pills in two hours to achieve any noticeable decongestive effect, which i would say is also what would achieve the reduction in my lymphedema.

once more, i'm not a doc and am not saying this is safe for anyone, BUT we're all adults here and frankly if you can outlast cancer treatment, you're not gonna be harmed by a couple extra nose-pills, but be careful if you have any heart issues, all the OTC decongestants raise your heart rate.

Hi Charles;

That's very interesting about the decongestion; I just told my Dad about it.

He had a bilateral ND March 13 2007. His face swelling has gone done alot since the surgery (it took about a month before we noticed a diff) now it goes up and down from time to time. Friday it was back up again and it made his throat feel very very tight. We actually went to the ER Fri night. They gave him IV steriod and released him with a prescription for Prednisone (a corticosteroid).

What about an anti-inflamitory; advil or aspirin; anyone try anything; wondering if that helps?

Hey the more tips the better

Thanks
LisaB

Hi Peace, I am not sure, will find out more for you..I go back on Friday. It is actually located within Greater Baltimore Medical Center Hospital and it is called the lymphedema center....I have already met a few women who are being treated due to breast cancer....I will find out more Friday....Are you familiar with Towson, Maryland because that is where the hospital is located. Carol
p.s. I had a doctor come in first and evaluate me and then his assistant came in and talked about what they are planning on doing in my case, which one thing will be the face thing to sleep in and also massage.

Hi all,

Do you have to be diagnosed with lymphedema? or is any kind of swelling due to ND or treatment considered to be lymphedema?

Carol; did the face cloth you wore a few years back help at all?

Thanks
LisaB

Lisa,

It wouldn't be a good idea to assume that any swelling after a ND is lymphedema. It should be diagnosed by a doctor. You would want to rule out any possibility that the swelling is pathologic.

Jerry

To all: Hi; this will be my first post, believe it or not. My mom is 78, a SCC survivor (3 Years). She had/has terrible lymphedema of the entire left cheek (which was removed), was treated by a massage therapist here in the OKC area...her swelling is primarily in the skin flap itself rather than in the neck area where the nodes were removed during the surgery. After 3 years, the flap has gone down drastically from what it was post-op and in the year after surgery. She too, was given a sort of "sling" to wear at night and honestly found it too..restrictive, I think, after all she'd been through. I'm so proud of her..and of all of you, as well. The human spirit amazes me...