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Lymphedema?

Mikki332
Posts: 49
Joined: Nov 2010

My husband finished chem/rads for IVa BOT at the end of December (surgery not possible). The last 2 days his neck has been swelling, his upper shoulders hurt and he feels like there is fluid in his neck where the tumor was. He hasn't had his follow-up CT yet so we don't know whether or not he's NED. It sounds to my perhaps like lymphedema, but from what I read that happens more often if there is surgery involved. Has anyone experienced this side effect and how was it treated? We don't go back to docs until March 14th.......again, dear friends, thanks for any insight......
Mikki

Pumakitty's picture
Pumakitty
Posts: 653
Joined: Mar 2010

My dad finished treatment for BOT in June and is having the same issue. He did not have surgery. His is under his chin. He feels like his neck is tight and makes it harder to swallow. This is worse when he first gets up. If you look back through some of the old posts you will find some exercises that help with this problem. My dad has start doing some of them and it has seemed to help.

Kathy

Hal61's picture
Hal61
Posts: 656
Joined: Dec 2009

Hi Mikke, sorry to hear your husband is having discomfort. I've just started getting treatment for lymphedema. I'm six months out of partial neck dissection and eleven months past chemo and rads.

My therapist is accredited for lymphedema massage, and has her space in my primary oncologist's office. She takes my insurance. Radiation alone can cause lymphedema. About everyone gets lymphedema immediately following a surgery, but if you are having it further along, you--your husband--may well benefit from lympedema therapy/massage. My therapist has been at this specialty for 16 years, first in the San Joaquin valley, and says that it won't always "take care of itself" as most doctors suggest.

For more information please visit "lymphnet.org." There you will find information and listings of therapists in your area. Not all therapists are listed there. It costs $500 a year just to have your name listed, so many don't. Talk to your primary doc or medical oncologist to see if they have a local listing.

best, Hal

MarineE5
Posts: 760
Joined: Dec 2005

Mikki,

I will post this for you as it will save you some time looking for it. I have saved it in my computer to use when this question pops up now and again. I posted it some time ago and I forget when it was. I hope this helps.
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A simple neck stretch exercise the Cancer Therapist taught me was to sit or stand and not move my shoulders. Keeping my mouth closed, look up at the ceiling as far as possible and hold for a count of 10. Return to facing forward and then look to the left and again count to 10, then the right. Next, look straight ahead and tilt your head to the left as if trying to get your left ear to touch your left shoulder, again count to 10, then the right side. That is the exercise she taught me and it has helped over the yrs. Try to do these 3 times during your day if you can.

Next, the massage for the Lymph system. It is a gentle massage starting at the front of your chin. Using 2-3 fingers make small circular movements for 6-8 circles and then slowly move up in sections along your jaw on one side, working up toward the front of your ear. Continue to massage and work over the top of your ear and then slowly behind your ear and down toward the jugular vein and to your collar bone. Do both sides this way, either one side at a time or using both hands, do both sides at the same time. Then starting under your chin and by the Adam's apple, make circles again and work under your jaw bone and towards the ear area.

Next part is, place your right hand in the center of your chest so your hand can work from the center of your chest to your left shoulder just below the collar bone and push gently to the left shoulder 6-8 times and repeat on the right side with your left hand. After that, raise your left arm straight up towards the ceiling, place your right arm across the front of your body, reaching to touch your shoulder blade, slowly run your hand down along your side to your waist 6-8 times, repeat on the other side.

Next, we have a lymph system reservoir located in the general area of our belly button and to the left, but a few inches down near the left hip bone. Near this area, press a little more firmly and make 6-8 circular motions. Work across the lower stomach area making a smiley face (or a U shape) across to your right hip area and then back again. This stimulates the reservoir and helps move the lymph node system.
We also have the benefit of gravity working on our side, after this stretching and massage, by walking for a short period, gravity takes over and the fluids start to move down towards the reservoir. Cutting down on salt helps and drinking roughly 64 ozs of fluid a day helps flush our bodies. If you do this properly, you will start to make more trips to the bathroom to urinate.

It took just a few visits for me to catch on and it started working for me in several weeks. I was swelling up in my face and neck, causing tightness and difficulty turning my neck and eating . Again, you will do this massage 2-3 times a day if needed. Sometimes, I only do it once a day and other days I don't need to. You will know when to do it.

Also, if we do any type of heavy lifting, picking something up that weighs more then 25 pounds, our blood and lymph node fluid move to the area doing the work (shoulders and neck) which in turn causes us to swell. Sleeping flat will cause us to swell also. Once the Lymph node system repairs itself. We will have to do less of this massage and stretching exercises. If the swelling flares up, we can do something about it.

If it continues, I would ask to be taught by a Cancer Physical Therapist, they can show you the proper technique. Hopefully, this will be helpful. My apologies for such a long post.

My Best to You and Everyone Here

Hal61's picture
Hal61
Posts: 656
Joined: Dec 2009

Thanks Marine, for re-posting this. I copied it and pasted it the first time you posted.
My therapist works the stomach area first off, then under the arm--armpit--then works on the neck and chin area. She says the stomach and underarm open up the lyphy nodes in those areas, and the chin and neck work starts unclogginf the buildup.

She also stresses the tightness of the skin in the neck area, and the need for that to loosen. This "fascia" is a tendency for the skin to attach to the underlying muscle, causing the lymph not to flow. The nodes may be working fine, but if the skin has zero elacticity, the lymph won't move. My neck feels like somebody squished superglue over it it gets so tight

I think if people will do the excersizes you list, they probably won't need to see a therapist, but they are there if needed. Mine told me that when she started 16 years ago, no one used the word "lymphedema". At oncologists' urging in the area, she had to go to Australia to get accredited. She also told me the obvious, everyone doesn't get longterm lymphedema.
thanks again for the excersizes, Hal

Kent Cass's picture
Kent Cass
Posts: 1747
Joined: Nov 2009

Not sure how you're gonna take this, but your post makes you the C physical therapist I never had to deal with the post-treatment symptoms, but shoulda. Excellent post.

kcass

MarineE5
Posts: 760
Joined: Dec 2005

Kent,

I take it as a very nice compliment. I am able to answer some questions here that I have lived through. Much like all of the people that step up and answer questions that they have lived through. I am very proud to be included with this group of wonderful people here. I read your replies as well as many others. There is alot of knowledge on this board and I am greatful to be one spoke of the wheel that makes this all work...

My Best to You and Everyone Here

Agatha
Posts: 62
Joined: Dec 2010

Thanks so much, MarineE5! I will definitely try out these exercises and hopefully they will help with my stiff neck and swelling. I'm glad to hear that lymphedema isn't permanent for all.

The turkey neck, I never heard of that but it's exactly what it looks like!

Skiffin16's picture
Skiffin16
Posts: 8100
Joined: Sep 2009

As we have been known to call it....

It's very common to pop up a few months after rads, and lasting in most for nearly 9 - 12 months. Usually most of us have went through it and it's all but gone away in the majority after that time....massage can help short term, but eventually the lymphatic fluids will find new pathways and the swelling will subside.

Another common symptom is called L'Hemette's Sympton or Syndrom. An electric or numbing sensation shooting down your legs, arms or spine when you tilt your head forward touching your chin to your chest.

Like the swollen glands, this to usually decreases or goes away after several months.

I had no surgery, other than tonsils removed before any chemo or rads were started..it's mainly a side effect from the radiation.

Best,
John

Mikki332
Posts: 49
Joined: Nov 2010

....awesome advice! We'll definitely try the exercises and hope it gets him through until we get back up north and can see his regular docs. Folks on this site are the greatest!
Mikki

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