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Head & neck radiation side effects continue, especially swelling
I was diagnosed with Esthesioneuroblastoma in June of 2021. I underwent two surgeries to remove the tumor and repair my skull base. After healing from those surgeries I underwent 30 rounds of radiation therapy to my head and neck. During radiation therapy I experienced brain swelling but with the use of steroids we were able to continue and ultimately complete the full 30 rounds. Since radiation has ended in November I have experienced a myriad of lasting side effects. I was initially told that it would take 6 to 8 weeks to heal from radiation, but I am finding that even this far out (11 weeks) I am still experiencing some pretty significant and frustrating side effects. The most concerning side effect I am experiencing right now is swelling. My face and neck are very swollen but I have noticed that I am experiencing swelling in my arms, legs, hands, shoulders, etc. Pretty much anywhere that can swell has developed swelling although my face and neck are the most noticeable. My oncologist doesn't think this is lymphedema and other issues such as thyroid dysfunction and Cushing's syndrome have been ruled out as well. My oncologist says this is an "inflammatory response" because I was sensitive to the radiation treatments and this will likely take an additional 1 to 3 months to resolve. To me, it just seems like no one really knows what is going on or what to do about it and they're just making guesses. I'm beyond frustrated at this point and am desperately seeking advice from anyone that may have experienced this or is currently experiencing this. Being swollen all the time is extremely uncomfortable and is one of the main reasons that I have been unable to return to work. Though I would not wish this on anyone, I hope someone out there has gone through this or has some advice to offer. I'll take any little bits of information or advice available.
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Hello @jessskodal. I'm afraid I have no helpful tips. I have lymphoedema under my chin after a recent head and neck surgery with 6 pages of notes on how to do the massage. Because of Covid, most of my appointments with the physio have been via Zoom and I'm not sure if I'm doing the massage right either. But mine is not a big problem and I agree yours is not like the typical lymphoedema. Flexitouch sounds worth a try though.
I can only offer solidarity and perhaps the thought that you are still close to treatment and it can take about 6 - 7 months to recover from radiotherapy to the head and neck, I was told.
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2 ReactionsJess, I moved your question to the Head & Neck Cancer group. I did this to better connect you with others who may be able to share tips from their experiences with radiation side effects, members like @alpaca @srm @hrhwilliam @fwpoole @kco @mindyt @birdsforever @denisebriggs
You may wish to explore the discussions in the Head & Neck Cancer group here https://connect.mayoclinic.org/group/head-neck-cancer/
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1 ReactionHello!
Thank you for replying and welcoming me!
My physician has mentioned this and also referred me to a local massage therapist that gave me instructions on how to perform different massage techniques on myself. I've been following those instructions for several weeks now without seeing any improvement. The therapist did mention the flexitouch system and has started the process of seeing if my insurance will cover this device, but I haven't heard much about that yet. I just wonder of course if I'm doing these massage techniques right since I'm not seeing any improvement. It also makes me wonder if this is even a lymphatic issue at all. I just have so many questions and so few answers. When I take steroids I see a drastic improvement in the swelling which also makes me wonder about the root cause of this issue...would I see improvement with steroids if this was lymphatic related? Or does that point to it being something else? My physician has been great but of course I can't contact him with every little question I have.
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1 ReactionHello @jessskoldal and welcome to Mayo Clinic Connect. I can empathize with your feelings of frustration following the long journey you have already been on with your head and neck radiation and tumor removal.
I wonder if you've ever heard of and considered lymphatic drainage massage? Here is a link to learn more if interested.
- How to perform a lymphatic drainage massage:
https://www.medicalnewstoday.com/articles/324518#benefits
Has your physician ever mentioned this as an option?
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