Can you share the dysphagia exercises that you are doing? I have not been told about those, although I have seen some on Google. Do you have neck edema and if so are you using anything like the Flexitouch to help?

I began having progressively worsening swallowing problems during November and December 2023, while receiving 30 radiation treatments for Thyroid cancer. Had laryngectomy in September 2023 due to cancer which had spread to my voice box and lungs. Received Botox in October to help with speaking. To date have lost 50 pounds and have limited speaking ability.

By the end of radiation in December, I could only drink protein drinks and "eat" diluted pureed baby food. Anything else stopped me up for a couple of minutes then eventually hours. In my January checkup, I was told that it can take 3 months to recover from radiation therapy so nothing could be done except wait. In January my Atos neck prosthesis began leaking when I drank thin liquids. I was told that leaking was dangerous and to come in to have my voice prosthesis replaced. A week later a washer was put behind the prosthesis. The SLP said that the leaking would continue and she was right.

In Feb 2024 I was getting stopped up for longer and longer time periods, so I made an appointment to talk about options. It was agreed that I needed to have my esophagus stretched. The appointment was made for 6 weeks later but about 2 weeks later, I stopped up for 2 days and was directed to the ER. They were unable to insert an NG tube, so they admitted me to the hospital. The next morning, the ENT told me that they were going to operate and do the esophagus stretch that day. Apparently my esophagus was so tight that it tore. As a result, I stayed in the hospital an extra day for observation.

My teeth and the back of my throat were painful, but I was able to eat solids for the first time in months. I used painkillers to enable me to eat. As the pain subsided though, so did my ability to eat solids.

Now in April 2024, I am getting clogged up again if I eat the wrong things. I had a new swallow test the end of May and was referred to a new ENT who prescribed esophagus stretching again, this time with a balloon and also Botox in that muscle. A date has not been set yet.

I do a lot of experimenting to try and find what I can swallow; eating a "meal" takes me between an hour to 2 hours. I generally eat at home, but will drink smoothies and shakes elsewhere. Surprisingly I can eat crackers and chips swallowed with a lot of liquid. I cannot eat eggs or meat. I thought that I could not eat bread, but I figured out it was the lettuce, tomato and meat that I could not eat. My diet has completely changed and not for the better. I like to take instant mashed potatoes in a mug and add a portion of vegetable and meat baby food.

While I was in the hospital, the nutritionist asked me if I was trying to eat. Something about the way she said it made me feel like she was blaming me for losing weight. Since I was overweight to begin with, I am much closer to normal weight now, but no I wasn't not swallowing or avoiding eating to lose weight. Its not fun to keep trying to swallow a mouthful 20 times and then eventually swallow part of it, or just spit it out because it now tastes and feels gross.

When I first start a meal, I am avoiding the things that I know are likely to cause me to get plugged. Its so frustrating to be hungry, take 2 bites and realize that you are plugged up and may not be able to eat for two hours or may be the next day. With crackers/mashed potatoes/chips/broth/pureed soup I find that I can stop eating and then wait a couple of minutes. Take a drink and then try to swallow for maybe 5 times and then it will go down. Since taste is completely different for me now, palatability is more about the texture and whether it will go down.

I still take a bite of whatever my husband is eating but only after I am done with my meal. If I get stopped up then it won't matter.