So apparently I now have to deal with this wonderful thing called 'lymphedema.' I've heard about it, read about it, seen you all talk about it on here. But it becomes all too ominous and real when the doc says that it's now my problem as well. Anyone have any experience with treatment? I'm frustrated because I'm sore and swollen as all get out, stiff, neck is tender to the touch, have bouts of pain on the floor of my mouth and in my ear. I'm not sleeping well and come to find out the cancer center I've had all my treatment out of here in AZ is booked until October in their lymphedema center. I called my doctor today, still waiting to hear back. Just frustrated and sick of being uncomfortable.

MissBazinet

You'll find a number of us learned lymphedema massage. Learning that and seeking out physical therapy following OC treatment were two of the smartest things I ever did. There are not enough therapists licensed to teach lymphedema massage. You really need someone who has taken the extra training for head and neck. I would think somehow you could be seen before October though!

I would call my doctor, just the way you are doing. There might be a PT who could give you physical therapy exercises as well as teach lymphatic massage. Both of these things will make you feel better, but make no mistake it is a long process to heal and get stronger after what you have been through. I wish I had a magic wand or some such thing to make it all better for you, me, and everyone else. I can tell you that you will feel better, just not as fast as what you want.

Anne

Hi - let me ditto what Anne said... You've heard the saying the lord helps those who help themselves... It very much applies here. The drs don't tell you everything, and they don't often tell you what will help minimize the damage or that this stuff you may have to seek out yourself. Take a few sessions of the massage, the you should know how to do it yourself. Good luck... It does eventually get better, but slowly.

My physical therapist wants to try and method called Kinesio Taping. Ever heard of that? Have any experience with it? Just curious.

MissBazinet

No I never have... Unless its related to wrapping, and pressure bandaging - which it may be... Let me know what it is though. Thanks and good luck.

As Cheryl speculated it is related to pressure bandaging. Kinesio tape is a brand name for a a cotton strip with acrylic adhesive that originated in Japan. A Japanese chiropracter, Dr. Kenzo Kase popularized it and developed a proprietary method of the generic tape complete with special training classes and certification.
My personal opinion is that it's just woo woo especially since it claims to work on everything: muscle imbalances, pain, the back, the neck, the knees, the lower legs and even lympadema. The theory for lympadema is
[quote]On skin, the Kinesio Tape pulls the upper layers of skin, creating more space between the dermis and the muscle. The space created is believed to relieve pressure on the lymph channels in the area between the muscle and the dermis, creating more space for lymph flow and thus better lymph drainage through an affected area.[/quote]
Unfortunately all the studies are by people who sell Kinsesio tape or teach it for a living. Nothing scientifically valid.
You can see for yourself how it works on You tube which has several videos on it. It's very popular with physical therapists as a result of a clever marketing ploy of giving it away free in the Olympics.
Myself, I am very skeptical about it. A Los Angeles Times article basically scoffed at it. My view echoes this doctor quoted in the article
[quote]For products that have become so popular on and off the playing field, there's surprisingly little evidence that kinesiology tapes actually relieve pain, says Dr. John Wilson, an assistant professor of family medicine at the University of Wisconsin in Madison who specializes in both sports medicine and arthritis treatment. "People often ask me, 'What does that stuff do?' I think it's mainly just window dressing." According to Wilson, it's unrealistic to think that a strap of tape on the skin could have any effect on blood flow or lymph drainage. It's quite possible, he says, that some people feel relief simply because they expect the tape to work. In other words, kinesiology tapes could just be stretchy, colorful placebos. "Until some study comes along to tell me otherwise, I believe any pain relief would come from the placebo effect," he says.[/quote]
The Healthy Skeptic - LA Times Interestingly enough in the same article,
[quote]Jennifer Gamboa, a spokeswoman for the American Physical Therapy Assn. who runs a private physical therapy practice in Arlington, Va., says that she sometimes uses kinesiology tapes on clients, including dancers with sore ankles or members of the general public with lower-back pain. She's not convinced that the tape really does anything to protect the joint, improve blood flow or speed healing, but she does think that it helps people become more aware of their bodies and reminds them to avoid certain movements.[/quote] Generally it's not a very good idea to use tape or bandages on the neck or face unlike other parts of the body.
I have heard great things though about facial massages.
Charm

My physiotherapist recommended kinesio tape. My left neck is stretched tight skin, soft tissue and muscle was removed during my jaw mandiblectomy. The tape was placed around the left side of my neck and shoulder. I tried it 3 times - 5 days per taping. Due to the elasticity of the tape, it made a small difference with mobility , however there wasn�t any noticeable change or relief after the tape was removed. I hope it works better for you!

Karen

You're better off with massage... Particularly for the head and neck - firstly I have issues with bandaging head and neck for extended periods. Lymphatic massage is good though... Let me explain - through gentle lymphatic massage the fluid is moved from the swollen areas to area that have lymph nodes - this movement loosens up the neck skin (mine is now very soft) and allows for me pathways to be built. Through the surgical area.- bandaging to me would take the swelling down by keeping the fluid from moving into these areas which would - depending on how it's wrapped make the fluid static.. Not sure if that's a good thing. As the lymph system cleans the blood.

If you go for the massage you will eventually be able to do it by yourself! mine has worked wonders. My muscles are still tight but acupuncture has helped with that and daily stretching... good luck. Ps when flying it is a good idea maybe to apply a wrap, it was suggested to me by my massage therapist but really only for flying.

Thanks for all the good info! I'm actually trying a mix of everything. Massage, Kinesio tape and a pressure bandage. Though I was able to find a lymphedema therapist that was taking new patients it's still been hard to get regular appointments. I'm just so over this swelling and pain.

MissBazinet

I just wanted to give an update since everyone seemed so "anti kinesio tape." Within the first 5 days I could feel the left side (the side they removed my lymph nodes from) of my neck again. I haven't been able to feel my neck in months. All the lymph then drained to under my neck. Me being me, I just left the tape off for a week to see where it got me. All the lymph stayed under my chin. I'm on day 2 of replacing the tape. It basically has 2 flaps, one goes under my chin the other goes down to my collar bone. I was much more swollen 2 days ago and I can already tell the lymph is starting to drain. I'm still going to be doing the massage and I try to do it myself but because I was unable to get as many appt's with my physical therapist this month I figured it couldn't hurt to try the tape.

I'm a believer. It has helped me tremendously, much faster than the massage ALONE helped. I'm really happy I decided to try this because I was in quite a bit of pain and back at work so, like I said, it's been hard to get into the PT. Not to mention I work in Retail Sales and people are much more nice and willing to buy stuff from someone with some weird tape crap on her face. LOL Just kidding...kinda.

MissBazinet