Chris,

Good job staying on top of all this and thank you for sharing it. Sure to help others and hopefully someone has had similar experiences and can help you. I do have random jaw/neck pain. I think they are simple cramps. It comes on fast and intense and I try to work the knot out with my fingers and by stretching my neck around. Sometimes they last 5-10 seconds and sometimes they last nearly a minute. I can get them in small batches but normally only a few if I do. And, I can go months without one.

Not sure if that is part of your experience but maybe it helps.

Stay safe and keep the faith,
Nels

Hi Marc,

I agree that you are quite fortunate to have wonderful medical services so close and that they jumped on this quickly and you found it early. I went thru a similar surgery (removed half my tongue, all nodes same side of my neck, rebuilt tongue with flesh from my forearm, nasal feeding tube, trache tube) followed by radiation. Did you get your lymph node results yet? That was key to my followup and determining chemo or not.

My tongue was swollen for many weeks. So much so that I don't recall when the stitches dissolved. It was at least a month before I felt like I could start doing some normal things with it such as manipulate food and speak with some clarity. It was almost two weeks before i could close my mouth enough for my teeth to touch each other.

I made it clear to my medical team that I wanted to eat, drink, and speak as soon as possible after surgery. I was speaking a little the day I woke up. You could barely understand me but they encouraged me to speak early. As for drinking and eating, they made me pass a water test first. About 2 or 3 weeks after surgery, I proved I could drink small amounts of water over the top of my nasal feeding tube and they agreed to remove it.

It was months of learning to speak, drink, and eat again. I had my first conversation with a random phone stranger about 2 months after surgery and they mostly understood me on the first try. Today, just over four years later, spicy is about my only hold-back. But, I can manage a 3/10 on the Indian food scale! Alcohol tastes terrible except for a stout. I think it hides the alcohol flavor well. I treat myself occasionally.

BTW - I am not a smoker, social drinker only before this, 52 years old at diagnosis. Happy to jump on the phone with you as there is so much more that I forget to write about. Let me know and if interested, we can set up a time. If anything just good to practice your speech!

Stay safe and keep the faith,
Nels

I suggest blending. I got a Vitamix and would put all kinds of things in with ice cream or milk such as avocados, less acidic fruit, veges, muscle milk, protein powder, etc. Let us know how it goes.

Best,
Nels