Partial Glossectomy with free flap rebuild of tongue

I had a partial glossectomy with free flap reconstruction 5 weeks ago. I spent 7 days in the hospital, 6 of which were in ICU and then I went to a rehab facility for 3 weeks because we were not comfortable dealing with my feeding tube, tracheostomy and wound care on my arm at home. I had the feeding tube and trach for just short of a month and then I came home. My tongue is still very very swollen which makes speaking and eating quite difficult. I can swallow fine with liquids and soft foods, but my tongue gets in the way when trying to eat anything more solid. I am pureeing some foods which is hit or miss. Two days ago I saw my swallowing therapist who gave me several exercises to do every day and wants 1/4 of each meal now to be a "challenge" - something not pureed. The swelling could take months to reduce to where it should be and this is what is most frustrating to me. There is very little pain in my tongue, but it just feels uncomfortable like there is a foreign object in my mouth that shouldn't be there.

@shane1954 Hello and welcome to our head and neck group. Getting used to these big changes can take a lot of time and patience. In one respect you don’t have the burning pain of your tongue which many patients do seem to have. On the other hand, you have what feels like a tennis ball in your mouth, which makes a normal life impossible.
Keep up the therapy and the healing. It is sometimes hard to imagine that you will get used to the changes, and then it goes out of mind. It may take a year or four. The alternative was not an option.
Someone is here to listen if you are dealing with specific issues. Start your own discussion if you feel so inclined. In the meantime good healing and welcome.

@shane1954, how are you doing with the doing the swallowing exercises daily? Have you noticed some tiny improvements in the past 10 or so days?

@colleenyoung I am doing better with eating - I have not pureed any food for probably 10 days. Anything that requires much chewing is still a challenge. I did manage to eat pizza last Saturday but had to cut it in bitesize pieces and dip it in marinara sauce. I get more pain after eating and doing the exercises - more of a burning or stinging sensation. I still cannot open my mouth as far as I would like. The swelling in my tongue is still a lot - I thought it would have gone down more by now - it will be 8 weeks tomorrow since my surgery. My tongue sits too high up in my mouth. My speech is still very garbled too but people say they can understand me OK.

Good to hear that you are able to eat some food with texture. Personally, I would hold off on eating acidic foods like tomato sauces and tomatoes.

@healthydeb Tomato sauces do not bother me. I have eaten spaghetti and meatballs. Surprisingly the meatballs were easier to eat than the spaghetti.

@badfish
Wish you all the best and a successful outcome

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.

@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.

My arm is a nasty mess and will need it covered. Thigh is healing.
The nerve pain in shoulder is the only pain now, but hurts when moving and trying to do things. He said it could take a year to heal and nothing about what I can do. I still take pain meds!! I bought a shoulder brace helps alittle. Still struggling with what to eat and mucus. Been getting pretty depressed, that comes and goes too. I just had no idea what I was getting into. Very grateful cancer is gone but longing to feel better.