Tongue / Flap swelling one year after full glossectomy

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.