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Anyone dealing with dysphagia? What helps?
Head & Neck Cancer | Last Active: Mar 12 4:07am | Replies (25)Comment receiving replies
I have been dealing with dysphagia since 2006 or so. I did not know that it was a predictable after-effect of the radiation I received in the mid-1970s for cancer of the nasopharynx. I kept embarrassing myself at restaurants and went through a procedure to widen my esophagus, which helped for a few years, but then I got pneumonia and was hospitalized for two months and had a feeding tube installed. The feeding tube kept falling out and the area around the insertion site kept getting infected, so finally I decided to stop having it replaced.
I was told that the hole in my abdomen would close up quickly after the tube fell out. That didn’t happen. I continued to get infections and pneumonia and I had a fistula at the tube site that had to be closed by surgery. Apparently the hole in my stomach or intestine where the tube was inserted was also still open and it had to be sealed up at the same time. You may warned that you need to have your tube replaced immediately if it falls out. I would take that warning with a grain of salt.
I have been working with a speech-language pathologist for a while on swallowing exercises and I think it helps. One thing she stresses is the need for oral hygiene. She actually recommends brushing teeth BEFORE meals as well as afterward. I admit I don’t do that because I don’t eat three big meals per day. I eat a bunch of small portions of food throughout the day.
For a while, I could only manage a “full liquid” or “mechanical soft” diet but lately I’ve been able to handle some more challenging foods like deviled ham on crackers or in a sandwich and even pecan pie. It’s easy to eat those cups of gelatin and fruit or the puréed fruit in squeeze bags that are sold for toddlers to take to school.
I was warned by dentists back in the 1980s that I might develop trismus and I wish I had taken that more seriously. Now I can’t even open my mouth more than about a centimeter, and this effects eating quite a bit. It also means that dentists can’t do much for my teeth, so my mouth is in terrible shape. If you don’t have trismus (lockjaw) yet, you may want to look into it and do the recommended stretches.
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Hi @ltecato
I was getting aspiration pneumonia too like it seemed for the last 2yrs. and actually one time had to go into the hospital as the infection was so bad, I was having a hard time breathing and they took 7 liters (not a typo) of infection out of my lung cavity. So, I did a lot of research and yes, my speech-language therapist too mentioned the brushing before meals and afterward too, but a lot can happen at night when you are sleeping and might not know you are still aspirating on your own salvia. I also saw a pulmonologist.
So, here is what I started this year 1/01/26 and so far, it seems to be working, and I feel my lungs getting stronger and hardly any or no mucus in the morning when I awake. I make 2 cups of warm water with 1 teaspoon of baking soda and 1/2 teaspoon of sea salt and shake it well in a small container. Before each meal, I pour some of the mix into a clean glass and swish in my mouth and gargle and spit it out. After the meal, I will floss my teeth and leave out my mix to use before other meals of the day or in between if I sense some congestion and at night put the leftover into the fridge. The mixture will last a few days and when it runs out, I make a new one.
At bedtime, I will brush my teeth and floss and use Listerine Total Care NON-ALCOHOL mouthwash. I try not to eat anything 2-3 hours before bedtime to help prevent any acid-reflux issue which I have never been diagnosed for or take any medication for it, but pulmonologist mentioned that some people don't realize they can have some form of it when sleeping. With that info. I also try to start sleeping on my left side which also helps being preventative. In addition, I have an ergonomic pillow which I put on top of an adjustable wedge pillow so I'm at least 30 degrees which is about 6-8 inches above the mattress. To prevent hip and lower back strain I added a knee pillow (as seen on TV) for between the knees for alignment.
The goal of this nighttime setup is to reduce nighttime aspiration, reflux, mucus buildup, lung infections especially aspiration pneumonia, and improve morning coughing. I can tell you, within 6-7 days of doing all of this, I was in a lot better place, and I can take way deeper breathes with my lungs now without coughing or hearing any wheezing and just feel plain better health wise.
God bless,
Rob