Tongue / Flap swelling one year after full glossectomy

r042wal

I had a full glossectomy on April 21 last year followed by chemo and radiation treatments in June and part of July. My surgeons told me the swelling would go down in 6 to 8 months so I remained optimistic and vigilant with my recovery.

Everything appeared to be going as planned and by September, the swelling was coming down and people were telling me I was easier to understand when talking. All this started to change around October last year and has been getting so worse it is destroying any quality of life I have been trying to claw back.

I would wake up in the morning and my tongue (flap) would be swollen and thick. After being up for about an hour, the swelling would start to go down. As time progressed, the swelling would start to compound throughout the day.

There are three events that cause my flap to swell, eating, talking and physical exertion. Currently, I puree all my food because there is not enough room in my mouth to get eating utensils in or to move food around as I chew. Drinking my puréed food is the first stage that triggers the swelling.

If I have to talk to anyone, even for a short time like my wife, a doctor on the phone, or my lymphedema physio therapist, this exacerbates the swelling and the compound swelling starts. Light physical exertion like walking my dog around the block or grocery shopping at a supermarket will add to the swelling. By the end of the afternoon, and definitely after supper, my mouth is so swollen it is like I have a ping pong ball in there and my speech is barely recognizable.

I asked one of the surgeonsl for a second opinion so was referred to the other surgeon who saw me this year. He did not have anything substantial to offer and was not sure about the swelling other than to say the fluids might be lymph (unsure), and that some operations take better than others. These answers were not very reassuring and actually very deflating.

I have trouble with the ‘lymph’ theory as I wear a compression mask in the evening and have eliminated all the lymph buildup in my neck and under my chin. The swelling only affects my flap from the incision forward. There is no effect on the original tongue on the other side of the incision.

Has anyone ever experienced the same? In the past year I have crossed paths with hundreds of oral cancer survivors, some with partial glossectomies and some with full glossectomies. I can't believe there is not one person who has had the same experiences I am having.

Your feedback is most welcome.

wbcgaruss

Hello, r042wal sorry you are still experiencing pain and trouble yet, a year after your surgery. I don't know why the doctors don't seem to have a lot of thought on this, apparently, it has them a bit baffled. I think this was certainly unexpected but I would think they know other doctors they can connect with to get an answer. But maybe there is no answer like the one doc said some operations take better than others. I am figuring he means to have better outcomes. That is part of this cancer treatment, every one of our cases is different and there is the possibility of a less than good outcome no matter how small the percentage. But I am sure you were never prepared for this, nor did your doctors probably ever indicate an outcome such as you are experiencing. But I would hope these doctors would be interested in finding an answer for this, if not to completely resolve it at least make it better so your quality of life is there. I don't know what area you are in or where you had this done but I think a possibility might be if there is a teaching hospital in your area that may have an answer for you. Or you may have to travel out of your area to a major hospital, but if there is a possibility of resolving this it would be worth the trip. I would also bug your doctors more and let them know in no uncertain terms that your quality of life is not good. Seems to me there should be something obvious there since the original half of your tongue is fine. Sorry, I can't be of more help.

Wishing You the Best-Take Care God Bless-Russ