Words of encouragement: I had PEG tube inserted 5/9/11 before I started chemo/radiation. I kept water by my side every second to try to keep swallow reflex and muscles working. Unfortunately for me, after my RND everything I tried to eat or drink came out my nose (partially-some went down).
I got into therapy and learned some exercises to do to improve my swallowing. Nothing seemed to help. I got severely depressed and gave up trying. I relied 100% on tube and liquid nutrition. Eventually, with the help of meds, my depression lessened. I began trying to eat. I just COULD NOT swallow solids. My ENT examined me and told me my anatomy was fine and that my tongue muscles just couldn't remember how to get the food down.
I tried and tried, but couldn't get solids down without using copious amts of water to wash them down. I would get so full of water that I only ate a few bites-nowhere near enough to sustain me. Frustrated again, I went back to using tube exclusively and not trying solids. I truly believed I would have PEG forever.
HOWEVER, over time, and after much lecturing and encouragement from my supporters, I am happy - ECSTATIC - to say that I had my PEG removed (OUCH!!) last Monday. (I lost 90+ lbs overall). My husband got me a Magic Bullet and I pur�e most of my food (pancakes and scrambled eggs are favorites), but I try solids more often too and they are going down better with less water.
So........there truly is hope. Don't give up. With therapy, encouragement and lots of trial and error, you just might be eating real food again!!
Best of luck and keep your chin up. You can get thru this.
-Wendy