It is slow, so very slow. But it is happening. A year ago I had figured that my side effects were about as good as they were going to get. I figured a year after treatment and surgery was enough for the affected areas to heal and repair. Thankfully I was wrong.
I had thought my saliva issues were done improving last year, but I'm able to eat lot more things that I couldn't a year ago, like hamburgers and pizza and even white meat chicken, the most difficult meat for me to get down. The problem is I'm not sure if the improvements are due to my saliva production getting better or my attitude.
A couple of months ago I decided I wasn't going to play this "game" anymore and I was going to eat what I wanted, regardless of how difficult it was. So I ate pizza and hamburgers and rice and crackers and all the things that give me trouble. They still give me trouble, but I decided the struggle was better than missing my favorite foods.
For the most part this worked well. I found I was able to eat most of these things without too much trouble, though hamburgers are still tough, with all that bread as well as the meat itself. I still can't do cake or other very 'bready' things. Subway sandwiches are great but the bread I used to love tends to get pulled apart and destroyed rather than eaten, for the most part.
I think part of what's happening too is that I've learned to deal with the issues better. When things used to go the wrong way, when the muscles shoved them up into my sinuses rather than down my neck, I didn't panic and try to choke it out (which usually sent the problem food further up my nose to be a bigger problem later), I simply kept eating and waited for gravity and the rest of the food and drink to help it come back to where it should go. That "relaxing" seems to be key. I was always afraid it would go into my lungs and choke me or worse and that fear was interefering with the muscles' learning process I think - or my learning process. Now there's less choking, less gagging and less worrying.
For the most part this worked well. I found I was able to eat most of these things without too much trouble, though hamburgers are still tough, with all that bread as well as the meat itself. I still can't do cake or other very 'bready' things. Subway sandwiches are great but the bread I used to love tends to get pulled apart and destroyed rather than eaten, for the most part.
I think part of what's happening too is that I've learned to deal with the issues better. When things used to go the wrong way, when the muscles shoved them up into my sinuses rather than down my neck, I didn't panic and try to choke it out (which usually sent the problem food further up my nose to be a bigger problem later), I simply kept eating and waited for gravity and the rest of the food and drink to help it come back to where it should go. That "relaxing" seems to be key. I was always afraid it would go into my lungs and choke me or worse and that fear was interefering with the muscles' learning process I think - or my learning process. Now there's less choking, less gagging and less worrying.
It's a little odd trying to figure out what it is that makes some food ok and some impossible. I can eat crackers and potato chips, but not nacho chips, unless I have salsa to help get it down. Something about the granularity of the chip when it breaks down. I can eat dry crisp cookies but not soft doughy ones, unless I have a lot of milk. That was the other side of my decision - I can eat anything with enough to wash it down. It's still difficult sometimes, but I still try, and I think the trying is also part of why I'm doing better. Like physical therapy loosening damaged scar tissue and teaching traumatized muscle to do your bidding, I'm teaching the muscles in my throat how to work all over again.
The other main complaint I've had since surgery is my neck and shoulder. My pectoralis muscle (chest) was re-purposed and used to reconstruct my neck after all the tissue they removed. This has caused issues with both my neck and my shoulder. The neck gives me problems mostly because the muscle still remembers its job as a chest muscle and any flexing that would have used my right chest muscle now activates in my neck. This used to pull my head down a bit as well as my jaw. Also, since it was newly grafted to my jawbone, any activation of it felt like it was going to tear from its new moorings.
Then there is the shoulder. The rotator cup is supported by at least three major muscles and since one was removed outright, the shoulder, now missing some support, had severe range of motion issues, not to mention the threat of it being dislocated if too much pressure is put on it. I was unable to raise my arm past shoulder height without difficulty, forget about lifting it straight up.
All that is in the past. My shoulder still has issues with tightness and some range. I still can't reach across to scratch my other shoulder. Getting there though. I can also rotate my shoulder all the way around now, including straight up. I can sleep on my stomach now if I wanted (I don't, but I could!), I can sleep on both sides again as well as not having to worry about dislocating my shoulder in my sleep like I think I did early on.
Then there is the shoulder. The rotator cup is supported by at least three major muscles and since one was removed outright, the shoulder, now missing some support, had severe range of motion issues, not to mention the threat of it being dislocated if too much pressure is put on it. I was unable to raise my arm past shoulder height without difficulty, forget about lifting it straight up.
All that is in the past. My shoulder still has issues with tightness and some range. I still can't reach across to scratch my other shoulder. Getting there though. I can also rotate my shoulder all the way around now, including straight up. I can sleep on my stomach now if I wanted (I don't, but I could!), I can sleep on both sides again as well as not having to worry about dislocating my shoulder in my sleep like I think I did early on.
So yeah, the body is pretty amazing. Just seeing the new blood vessels that have grown through my scar tissue blows my mind. Nevermind the fact that my chest muscle has succesfully learned how to be a neck muscle.
