Partial Glossectomy with free flap rebuild of tongue

Posted by badfish @badfish, Oct 24, 2023

I have an upcoming surgery for a partial glossectomy with a rebuild of my tongue using the free flap. I wanted to see if anybody had this same procedure done and how the recovery process went. My biggest concern is recovery of my tongue, how long will it take to eat normal and especially until I can speak. Did your speech get permanently altered?

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Profile picture for shane1954 @shane1954

@logi My partial glossectomy with reconstruction with a free flap was Feb. 12th. I still have a lot of swelling in my tongue after almost 8 weeks which is quite uncomfortable. I had a trach and feeding tube for a month. Spent 3 weeks in a rehab facility after a week in the hospital. I am now eating most foods except for some meats and crunchy things like salad and other raw vegetables. The wound at my freeflap donor site is still pretty ugly and I prefer to keep it covered when out in public wearing short sleeves. That will be harder with summer coming. My thigh where they took the skin graft to repair my forearm is pretty unsightly too. All of the healing is taking longer than I expected. I too had great pathology report with no further treatment needed. I had tongue cancer before in 2014 that required chemo and radiation so was thrilled to avoid that again because radiation especially was horrific. Best of luck to you - I know how hard it is to be patient through all of this.

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@shane1954 can I ask your age?
I am 78.

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Profile picture for logi @logi

@shane1954 can I ask your age?
I am 78.

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@logi I am 71. Will be 72 in June.

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Has anyone had debulking done to their freeflap reconstruction on their tongue after a partial glossectomy? My surgery was Feb. 12th. I still have a lot of swelling in my tongue which has reduced somewhat. I am eating most foods now but my speech is still very impaired, although people say they can understand me even on the phone. I have a CT scan of my chest scheduled on June 4th because my dr. says if oral cancer spreads, the lungs are frequently where it spreads to (something else to worry about that I didn't know). My swallowing therapist told me if that scan is clear, then we could start discussing if I want to have the flap trimmed down (debulked). I'm not sure what this procedure involves although I know it is outpatient and I don't think it is painful much because the flap is numb. Does anyone have any insight about this?

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Profile picture for shane1954 @shane1954

@logi My partial glossectomy with reconstruction with a free flap was Feb. 12th. I still have a lot of swelling in my tongue after almost 8 weeks which is quite uncomfortable. I had a trach and feeding tube for a month. Spent 3 weeks in a rehab facility after a week in the hospital. I am now eating most foods except for some meats and crunchy things like salad and other raw vegetables. The wound at my freeflap donor site is still pretty ugly and I prefer to keep it covered when out in public wearing short sleeves. That will be harder with summer coming. My thigh where they took the skin graft to repair my forearm is pretty unsightly too. All of the healing is taking longer than I expected. I too had great pathology report with no further treatment needed. I had tongue cancer before in 2014 that required chemo and radiation so was thrilled to avoid that again because radiation especially was horrific. Best of luck to you - I know how hard it is to be patient through all of this.

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@shane1954 thanks for sharing. I am scheduled for surgery in about 2 weeks to remove some remaining verrucous ca tissue from the back of my tongue and have a repair. I am currently questioning the surgeon about using my forearm for the graft vs using my thigh. I am sorry to hear about your compications and prolonged recovery. I am uncertain on how far to advocate for myself for the thigh site but I have specific reasons.

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Profile picture for logi @logi

I had cancer removed from throat February 25. They removed part of tongue and area bottom of mouth.
They did the reconstruction flap with vessels from left arm. I simply had no idea what I was in for. Had a Traech and feeding tube for two weeks. I couldn’t talk for two days but all of a sudden could talk. I left with no Traech and feeding tube after two weeks. Recovery is slow and frustrating. Mucus at night, gagging,choking. Just this week have slept all night, a miracle. A nerve in my neck, damaged, causing pain in clavicle and drooping shoulder. Got a shoulder brace to hold in place. I can eat soft foods but eating is a dilemma. This is all 5 1/2 weeks out. I have lucked out in that they got all the cancer according to pathology and no further treatment. MRI in august..
I simply had no idea what I was in for. You have no choices . Sometimes it’s one hour at a time.
I am recovering bit by bit and has taken me weeks to say that. You can do this.

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@logi facing a surgery with reconstruction of the tongue. I am hoping for a smooth recovery but your post is giving me pause. I hope youfeel better daily!

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Profile picture for healthydeb @healthydeb

@shane1954 thanks for sharing. I am scheduled for surgery in about 2 weeks to remove some remaining verrucous ca tissue from the back of my tongue and have a repair. I am currently questioning the surgeon about using my forearm for the graft vs using my thigh. I am sorry to hear about your compications and prolonged recovery. I am uncertain on how far to advocate for myself for the thigh site but I have specific reasons.

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@healthydeb My graft for my tongue reconstruction came from my forearm but they also took a graft from my thigh to repair my forearm so I have both. The arm is still pretty ugly but looks so much better than it did in the beginning. So hard to hide it in the summer so I have stopped trying. The graft on my thigh makes me not want to wear short shorts or a bathing suit.

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Profile picture for healthydeb @healthydeb

@logi facing a surgery with reconstruction of the tongue. I am hoping for a smooth recovery but your post is giving me pause. I hope youfeel better daily!

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@healthydeb The damage to nerve in neck has been a big problem. The shoulder droops with pain. You may not have that happen. We are all different, swallowing therapy should start early, mine didn’t.
Many factors involved.
Pray your surgery gets the cancer and your recovery goes well. Best of luck to you. Stay positive.🩷

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