Head & Neck Lymphedema

I had tongue and lymph node cancer in 23-24. I had serious lymphedema and 2 wonderful Mayo OTs helped me a lot. I also recommend the cancerrehabpt.com. She does videos on managing lymph for H and N cancer patients. Learn to massage your self. I still do it twice a day. My surgeon also prescribed massage by my OT.

I also use a lymph pump made by Tactile Medical. It uses light air pressure massage and its wonderful! It requires insurance approval which can be difficult. My Mayo surgeon took care of that for me. Ask your doc to prescribe it.
I also still wear a compression band on my head at night. I wore it almost full time at first. My Mayo OT gave it to me along with a "chip bag". Its a soft pouch of foam rubber pieces that help to disperse the lymph. Here is a link to the head gear https://www.designveronique.com/post-surgical/facial-wear/universal-facial-band/
Good luck. Its all a bit overwhelming, I know. But once you get into a management routine it will feel better.
I'm 2 years out and my surgical scar has really faded and I have almost no swelling now. So it can be done!

Hello, @albion223,

This vintage device helps clear swelling in the chin and neck area. It is much simpler and more affordable than the elaborate vest-type systems doctors often prescribe. Most of the devices are priced around $20!
https://www.ebay.com/itm/157704067972
The professional vest system applies pressure to the entire upper body and head. While effective, it is expensive, time-consuming, and complicated. This smaller device works very well for localized swelling. The device has a setting, so the massaging "fingers" can go either up, or down.

Sometimes, I hold the machine upside-down as I lay on my back. This way, it can get directly under my chin. However, the back of the neck works wonders at relieving the lymph all the way around, so you can rest on your back as it works.

My swelling often disappears for up to a full year, but when it returns unexpectedly for a month two, this device is my go-to solution.

Remember, we are all in this together...literally!!!

@sandy8043
Thanks for sharing your experience with me, when I figured out what was happening I felt discouraged especially when my recovery has come so far.
It is what it is and now we must deal with it…

@thomason
Thank you for your thoughtfulness and yes indeed we are all in this together!

@albion223 I forgot to mention my scar issues. I had a large incision from my right ear down under my chin to my left side. That scar, in spite of my massage was pretty tough. It wound up acting like a dam and the lymph could not move past it. So the OT massage was necessary to not only break up the scar tissue but to help the lymph clear. At times it looked like a big sausage under my chin. During a return visit to my surgeon he recommended the OT massage. He said it was not really something I could do for myself and he was right. My OT was able to massage the scar tissue and move the fluid in just a few visits. Now the maintenance is up to me.

@sandy8043
That sounds like you have been through it!
It is good to know you can manage it yourself too.
Yes, under my chin it swells way up around my trach-tube making it hard to breath.
At least we are alive, right! I think of General Grant dying of throat cancer before they had radiation...he must have been in agony. My throat/ear pain was getting unbearable before the radiation, so I guess the lymphedema is a good thing? You are in my thoughts.