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This is so good to hear. I'm one year out and just now starting to have swallowing difficulties. It's an aweful feeling. I still have my feeding tube and can't eat anything. It's even gotten worse trying to swallow water the last few weeks. The more physical therapy I do the worse it seems to get .For the moment coping with a big fibrosis flare up and doc put me on steroids. All this is not really helping much. I'm just about to give up and so disappointed. Just don't know what to do anymore. Any suggestions?
Replies to "This is so good to hear. I'm one year out and just now starting to have..."
Don’t give up!
I had my feeding tube for nearly a year and could barely drink water.
I stopped the speech therapy early on because it was a waste of money and she really had no idea what was going on with my throat.
Stay focused and you’ll know when it’s time to eat by mouth, at least I did.
One day I just woke up decided to eat oatmeal and though it was still difficult I managed. After a few weeks and eating 3 oatmeal meals a day I told my oncologist I was ready to have the tube removed. He suggested I have my port removed at the same time so he got me an appointment with my surgeon and he got it done.
Best wishes
Jody
They warned me to continue eating so as not to lose my ability to swallow, but I found it most difficult and probably didn't comply very well. Fortunately, they removed my feeding tube within a few months, and I was able to struggle through the early stages. I still have to be careful as I still deal with dysphagia, so I drink a lot of water, between 1-2 gallons/day. When you are first experiencing all of this, it's frightening because of the unfamiliarity. There were few answers to my many questions back in the beginning. In reality, one just needs to focus on what needs to be done to adapt, one day at a time. Sadly, incidents of head and neck cancer have more than doubled in the last two decades, but it means there is more attention paid to the aftermath. I've learned a lot just by joining this Mayo group. Good luck.
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Hello, @niml. I am a bit confused. If your swallowing problems just began, why have you been on a feeding tube for one year? This is the opposite of the way it usually works after throat-area radiation! The longer you stay on the tube, the more likely you will have trouble going back to normal eating. As the saying goes: "If you don't use it, you lose it." When you say you have physical therapy, are you referring to the tongue/throat exercises which are VITAL to regaining your throat functions after radiation? Have you had a swallow-study performed to determine why you are having such difficulty swallowing after one year out? These questions need answers! Best Wishes to you.