Lymphedema of the neck: What did you do?

Posted by lilypilly @lilypilly, Jan 2 9:16am

Hello I have Lymphedema of the neck amd face following radiation/chemo for base of tongue cancer. Has anyone else experienced this? What did you do?
I get regular massage on it but I need more.
Also a very dry mouth and phlemn in the throat. Help?

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lollie | @lollie | May 22 1:36pm

In reply to @lilypilly "Wow. I am in Canada do you know if that would make a difference?" + (show)

No- I do not...definitely worth an inquiry though! They're located in MN so a close neighbor 🙂 Good luck to you!

lilypilly | @lilypilly | May 22 5:54pm

In reply to @lollie "No- I do not...definitely worth an inquiry though! They're located in MN so a close neighbor..." + (show)

Thank you but only in the US. I will need a script from a US Dr.
Guess I am out of Luck.
Thanks again

niml | @niml | Jul 18 5:22pm

In reply to @lilypilly "Wow thank you so much for the info!" + (show)

Yes. I'm certainly going to check this out. Thank you so much. My neck is so bad and feels like a tree trunk. It is keeping me from being able to swallow properly.

mattbrolly | @mattbrolly | Jul 19 7:31am

I am sorry to hear what you are going through. I have the same symptoms. Ask your radiologist or oncologist for a script for physical therapy. The therapist will massage you and provide self MLD exercises for you to do on your own. It isn’t perfect but it sure helps. Best of luck to you!

lilypilly | @lilypilly | Oct 21 9:00am

Hello I am 15 months post treatment for SCC base of tongue . The treatment left me with lymphedema of the face ...tongue and neck(below the chin). I wear a compression mask, weekly lymphedema massage and daily exercises. The Tactile machine is not available in Canada.I am looking for any other suggestions.If there is something that you do differently, please share.Thank you

sandy8043 | @sandy8043 | Oct 22 9:41am

In reply to @lilypilly "Hello I am 15 months post treatment for SCC base of tongue . The treatment left..." + (show)

Sorry the Tactile pump is not available in Canada. I also wear a compression band at night. I use a chip bag with mine. Here is a link to the company that makes it. I use the basic #210 model. My first one came from my OT at Mayo. At first I wore it all day and night.
https://www.designveronique.com/post-surgical/facial-wear/

lilypilly | @lilypilly | Oct 23 9:24am

In reply to @sandy8043 "Sorry the Tactile pump is not available in Canada. I also wear a compression band at..." + (show)

@sandy8043 thank you so much for your response. I am looking into the facial comrression.

sandy8043 | @sandy8043 | Oct 23 10:38am

In reply to @lilypilly "Hello I am 15 months post treatment for SCC base of tongue . The treatment left..." + (show)

I also started using a vibration plate. I watch the YouTube videos from Kelly at Cancerrehabpt.com. Here is a link to the video. https://youtu.be/FUvzIBs4ZX0

She has a lot of info on her website for head and neck cancer and lymphedema.

pauley | @pauley | Oct 25 9:40am

In reply to @lilypilly "Hello I am 15 months post treatment for SCC base of tongue . The treatment left..." + (show)

After radio-osteo necrosis of the lower mandible I had Mandible flap reconstruction. Quite the ordeal. Since my lymphedema and been terrible in the jaw bone area and my neck. It's not painful however it cause a lot of discomfort.
Have any of these suggestions here actually helped any of you and made a difference?
Thanks
Paul

zenren14 | @zenren14 | Oct 30 5:48am

@pauley Hey there! I had a free flap reconstruction from my left forearm in April 2023. I got cleared from Onco to undergo MLD a year or so later. SLP showed me online exercises (Kelly PT - Cancer Rehab) which I religious did for a year. Until, I hired a RMT to perform MLD and since 9 months of treatment H&N lymphedema is well managed. I drink more water by mouth and swim in a pool which alleviates the H&N sensations. I like how you outweigh pain vs. discomfort. Run it by your team for further tips. Best!