Hello Cancer Peeps:

I am finding little information about Lymphedema on the forum. Am I one of the unlucky ones who has significant Lymphedema issues.

My neck and throat fill with fluid. My throat feels very restricted. Sometimes it feels like I won't be able to breathe. The constriction of my throat makes swallowing difficult. Lymphedema plus no taste plus no saliva plus no appetite makes eating next to impossible.

I am 14 weeks from the end of radiation.

I have been going to physical therapy for ten weeks. The first four weeks I went once a week. Since then I go to PT twice a week. The PT place I go to now has a vacuum type machine that lifts the skin to promote fluid movement. They taught me how to do Manual Lymph Drainage massage which I do several times a day.

I've been doing what I am told to do but basically there has been no improvement in the Lymphedema. Does anyone have any comments or suggestions?

Are you also wearing a compression mask? My mom had significant Lymphedema after her second surgery and had massage by the PT and at home. If you're not wearing a mask, it may be worth asking your PT about them. My mom's PT stressed that compression is an important aspect of Lymphedema treatment along with the massage. Also if you haven't already, you may want to check in with your doc again just to keep him or her aware that you've not yet seen improvement. I would definitely report any increase in pain. It's probably going to just take time, but my thought is it wouldn't hurt to have a check up.

Sorry your going thru this discomfort. My husband finished treatment in Jan 2014 . He had lymphadema in his neck and is was really pronounced under his chin. He kept gently messaging. He saw a PT twice and she showed him how to do the message. He also ordered on line a sort of chin strap with compression. He wore it for a little while at home. He just kept messaging. I would say the lymphadema subsided with in 6 months. His neck has bulked up nicely with muscle and he only has a little bit of a turkey neck. My husband is almost at the two year mark and he looks great and feels pretty darn good. Hope u feel better soon.

Hi- I had a Neck Dissection in January of 2013. I still have Lymphedema of the both face and neck, along with areas that are either numb, or hyper-sensitive. I went to 3 Physical Therapists before I could find one who was even willing to work on the affected area (most were trained in the arm/breast area, and I appreciated that they didn't use me as a "guinea pig" to practice on). The PT I finally found was good, and we keep trying new therapies together. The message is, it may take some time and leg work, but if you go to someone, and after 2-3 visits, your gut is telling you that they really don't know what they're doing, then they most likely don't. If possible, get in touch with a Cancer Center, and see if they can refer you to someone in your area, or if you can to there for treatment.

I have lymphedema in my neck and face and am 9 months out from finishing treatments. I went to see a PT who massaged and trained me with massage. She also helped me find a collar to order as my shitty insurance, aetna, wouldn't pay for a custom one. I think if I had that, things would be better. The one I bought from amazon comes off every night while I sleep so benefits are null there.

The massage and stretching I do every morning and sometimes through out the day as it builds up. I take a shower in the AM and go through the regiment, I am sorry if I skip this. If it gets bad, I can feel it closing around my throat, it feels chokey and painful. Some days are worse than others and I think diet as well as exercise makes a difference. I have some saliva back, that's pretty exciting. PM me so I see it if you want me to go through the steps of the massage.

Get in to see a PT asap that knows the techniques because everyone is different.

If any of you, who have commented on lymphedema, still come on this site please message me. Thanks!

Hi QueenKong,

not sure if you still come to the site, but please if you do, would you mind messaging me the steps for the lymphodema massage?

Thanks in advance 🙏

Jujilow,

It’s understandable that you are upset by the swelling in your neck. I have read multiple times that patients who wish to do the neck massage to help drain the lymphatic fluid build-up should check with their oncologist to be sure that they are free of cancer. There’s some fear that a stray cancer cell may follow the lymphatic fluid down into the body cavity and result in metastasis. For this reason, I urge you to talk to your doctors before you start massaging your neck.

The lymphatic build-up does get better over time.

hi there,

thank you so much for replying to my post, I’m really grateful to know this now as the last thing I want to do is help any stray cells to develop any further. I really dont want to go through any of this again, especially the radiotherapy so I’m willing to try anything in my power to prevent it. I hate the feel and touch of the lymphodema, it’s so uncomfortable and restricts so much of my movement but fingers crossed in time I will get the correct help on this. I will speak to my doctors in my next check up.

thanks again, ((hugs))