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.