Partial Glossectomy with free flap rebuild of tongue

Hi @badfish and welcome. Good question you put forward. I am also interested to hear how the recovery from this goes as well. I hope and believe that someone will hop on this discussion to give you some good information about your glossectomy. I’m beginning to think, all things considered, we are not going to get done with this life alive. Good luck and good healing.

I add my welcome, @badfish. I'm tagging fellow members like @kadjur @alpaca @rkaspet @rubagaddal @lja @mamacatjane @rho610 who also have experience with a partial glossectomy with free-flap reconstruction of the tongue. They can share more about preparing for the procedure as well as tips for recovery and speech rehab.

Badfish, when is your surgery?

Hi Badfish,

I had this procedure about 14 months ago. I think the answer to your quest about speech and eating depends on how much of the tongue is removed. In my case, it was about 3/4, so I have permanent speech impairment and cannot eat solid food normally. I do eat, and enjoy, some solid foods, but I need to drink a ton of water to wash the food to the back of my mouth in order to swallow. I spoke with someone who had a less-than-half glossectomy and she speaks and eats nearly normally, however she still has the other symptoms: dry mouth, lymphedema of the neck, etc.

As far as the time needed to recover, in my case, they removed the trach after about 3 days, which allowed me to sort of grunt words to communicate, but at this time my tongue was extremely swollen, but amazingly not in pain. When the swelling went down, after a couple of weeks I could communicate pretty well.

One tip: I elected to use my arm for the donor since I had had a surgery on my left wrist many years ago. I regret this decision as I am right handed and having the right arm out of commission was a big hassle. In fact, my right hand is still not back to original strength or range of motion.

For the lymphedema recovery, I use a Tactile Medical pump that uses a hood and a vest that massages the neck and chest. This helps reduce the puffiness and pain in the neck. They are expensive ($5000), and insurance might not cover it, but if you are a size medium, I just put one up for sale on Facebook Marketplace for cheap (I had to buy another, size small). Hopefully your insurance will cover a new one. Anyway, most people cannot now notice the lymphedema swelling at all.

I recommend speech therapy (also covers swallowing) and lymphedema therapy, at least for a few visits to get some exercises and advice. I went for a few months. It was helpful. I had my treatments at Mayo in MN, but I chose to do my physical therapies at the U of MN, closer to where I live. I also have ongoing shoulder pain from the surgery that I do exercises for (as a result of moving the nerves in my neck), but I think this is rare.

I assume you will be following up with radiation/chemo? If so, I have another set of tips. Where are you getting treated?

Anyway, yesterday I helped my dad put away the boat and take in the dock. Afterwords, I cooked walleye for my folks and enjoyed a delicious small meal (along with a Boost) and was thankful to God that I now have a nearly-normal life again. My most important piece of advice is to stay hopeful and positive and know you'll get through it.

God bless, Badfish.

Hi Badfish,
First I would like assure you, and please fight back any negative thoughts and keep hopeful as @mnmike advised also.
I am diagnosed with Stage II Oral squamous Cell Carcinoma (tongue).
In Mat, 2022, I underwent A subtotal glossectomy (nearly 80%) of my tongue removed, with tongue reconstruction (free flap - my pectoralis major muscle used).
Thank Allah, I recovered almost immediately after 7 and half hour's operation. Tongue removed; all my neck lymph nodes removed.
They sent immediately to the ward where I spent 9 days.
Many tubes were attached: drains, urinary catheter, Tracheostomy tube, and feeding tube (nasogastric), but don't panic please, they were removed at 24 hrs. three days, 7 days and 45 days respectively. (No pain ever!).
Some antibiotics administered and I need some blood transfusion, so two pints were given.
I keep a follow up schedule for dressing, stitches removed before I am discharged from hospital.
I started oral fluid intake after 45 days, only thin liquids that can pass through.
eventually I started more semisolid foods (blended) but gradually.
As cancerous cells affect the perineural region, so I have to take 30 sessions of Radiotherapy, this really the challenging phase, Radiation is Double-edge weapon, one might experience lyphedema, thick salivation, sore mouth or throat. For me all went fine - Thank Allah - except for slight neck lymphedema, that subsided later (I don't afford paid physiotherapy exercises for lymphedema, speech, and swallowing, so I just extensively googled free exercises provided out there, and all went OK.
the lymphedema subsided and the swallowing is improving gradually, but I have the problem of the sick saliva, some pockets that keep food residues that need careful removal of food particles since the sensation of the new tongue is not good.
As for the speech, it is improving much, it is even more difficult for me because I am an Arabic native speaker, and many Arabic Language letters have to be produced using your tongue and deep down your throat, or the combination of tongue and the roof of the mouth. Hopefully it goes easier in your case.
I hope you will not experience any of these complications.
of course, you have to do some CT and PET scans for follow up to see the progress.
Every case is different from the other.
Now that one year and five months passed, the follow up Scans showed no recurrence of the tumor, but the tracheostomy opening didn't heal till now, due to the radiation, however, I am leading a normal life - except I can't eat hard food and somewhat impaired speech- I hope that improve by time.
I would like to mention the help, guidance and reassurance I find here in this platform and the awesome mentors who really guide you through this difficult time.
I wish you all the best,
I hope you find my experience reassuring

I would like to correct a typo there: Thick saliva (instead of sick).
By (leading a normal life0, that's, of course as far as my new normal is concerned. I exercise, WORK FROM HOME, wash, cook, go shopping, socializing - to some extent, because of fear of contracting infections for example. Sometimes I feel tired quickly.

Thank You,

My surgery is coming up in about 2 weeks.

Thank you for sharing you experience. I never heard about the lymphedema until your post, that is something I'm going to investigate further.
I will be getting my surgery at Mayo in Phoenix and most likely all of my follow up care in Montana where I live. I will be receiving radiation after but the Dr's don't believe chemo will be necessary.
Best wishes in your continued recovery.

Thank you very much sharing your experience with me. Hearing others stories really help give me reassurance in this scary time.

Best Wishes in your continued healing.

I wish you all the best, keep good hope and faith, everything will be fine.
Stay safe

I'm sorry to hear about your upcoming surgery. It's understandable that you have concerns about the recovery process, especially regarding eating and speech. If anyone has undergone a partial glossectomy with a tongue rebuild using the free flap, your experiences with recovery, the duration to resume normal eating and speaking, and any permanent alterations in speech would be valuable insights. Sharing such experiences can provide support and guidance for those going through similar medical procedures.