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Question: Tongue/flap swelling 5 months after surgery
r042wal
5 Posts

I had oral surgery on my tongue last April. They did a complete reconstruction using a piece of muscle from my arm and creating a ‘flap’ for the part of my tongue that was removed.

If you have had this same procedure, did you encounter a problem with swelling several months after the operation? When I wake up in the morning, my tongue (flap) is so swollen I can't clamp my teeth shut. It goes away after I have ben up for an hour.

If I do a lot of talking, my tongue really swells. Currently I eat my meals puréed by drinking it out of a glass. This too causes swelling.

The doctors said it could take 8 months for the swelling to go down. I am 5 months post operation. One of the difficulties with the swollen tongue is talking.

Anyone else that has gone through this condition?

Thanks in advance.

2 Replies
Brighty
8442 Posts

@r042wal hi there I'm so sorry for what you are going through. Im going to tag @law1 who can shed some light on your situation from her experiences.

law1
697 Posts

Hello, @r042wal,

I am glad @Brighty tagged me, as I believe I recall reading your bio, your surgical and treatment history, and tongue reconstruction in a former post. I, too, suffered with the physical and emotional recovery after my 36 rounds of radiation treatment for basal tongue cancer. It took at least a year before I was able to use my tongue to swallow….not even chew; a yawn became a luxury due to the small ability to open my mouth wider than 1cm. Too painful anyway.

I did not have chemo because I declined it!! Too many horror stories. Surgery was not possible because of the expansive shape of the tumour wrapped around my larynx. My tongue looked like the surface of the moon: radiation reaction caused it to be covered in blisters, which were continually slashed open by my molars….so, I stopped speaking, and swallowing and my speech was garbled anyway due to my swollen inner cheeks and gums. PAIN made me INSANE. Finding this website was a true godsend. I also met with a counsellor who specialized in ‘food’ issues for cancer patients, researched as much as possible with the help of a medical oncology librarian, received exercises from a speech pathologist, and grabbed any info which came my way. I stayed in bed a lot, and read everything, including junk mail….just to keep my brain engaged. I slept off and on and used a wonderful topical viscous, oral gargle called Lidodan 2%. It's a red liquid in a small bottle. Available by request from a pharmacist it numbs the entire mouth making the tongue more tolerable for eating and swallowing. Soups, yogurt, ice cream, and mushy food was almost bearable. I lost 35 lbs. and was hospitalized for dehydration.

My point is that your story is unfortunately part of ‘normal’ recovery as each treatment and recovery affects everyone differently. Doctors aren't giving excuses when they fail to answer questions directly. Cancer is a nasty, brutal disease and oral cancers are known to be highly debilitating and painful. Swell, eh?! Being away from your IT business must be quite demoralizing…but your body needs all the energy it can muster just to concentrate on regaining weight, dietary mastery, tongue exercises, sleep, and on and on…..

Thank you for reading my post, and for your posts as well…please continue to update us on this site. At the bottom of the page is a list of various resources, and the phone number is staffed by professionals skilled in oncology issues. 1-888-939-3333.

Additionally, the yellow bar at the top of this page has a wealth of resources, too. Discussions, Forums, Publications…..are 3 areas to begin searching.

Forums, click on Types of cancer, Head and Neck, and then seek out the posts relating to your specifics.

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