Anyone dealing with dysphagia? What helps?

@praying4miracle yes for vocal chords but my swallowing was much much better after it 😁

My husband completed treatment in 2011. Within the last 4 years he has lost pretty much of his hearing. Mayo diagnosed Baroreflex failure this time last year. He had a swallow test last week and aspirated on each thing they had him swallow. They told him there wasn’t much they could do besides put in a feeding tube. He is greatly opposed but I’m nervous he will get in a crisis situation if he continues to eat. He does cut food up very small. I make gravy to put on meats and potatoes. It’s hard for me to have meals with him as he is coughing and making all sorts of noises. It’s hard for us to go out to dinner with others.
I thought the Baroreflex failure was hard to deal with. This dysphasia is worse.

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.

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

When I was struggling and trying to "relearn" how to swallow after my TORS I came upon someone who mentioned to put your chin into your chest and swallow HARD. That really helped me get going towards relearning to swallow. Good luck to you.

@roblem hear you - to me, it's a tough road ahead!!
I was diagnosed and treated for nasopharyngeal carcinoma IV in 2006 - and the late effects of radiation (dysphagia, dysarthria & severe neck fibrosis) came into play in mid 2020. Am trying to avoid the feeding tube - and have been coping with mushy foods, small bites and avoiding eating out in public or with friends.
The latest side effect is misaligned vision (on my left side where the radiation was concentrated) - where I have to be fitted with prism lenses.
Good for you that you are coping well -- for myself - am resigned to accept whatever comes along!!
Take care!!

My husband had head and neck in 2013. He went through 37 weeks of radiation and chemo combined and is now in remission. However, within the last year or so the scar tissue from the radiation has become severally worse. He lost 100 pounds and at the beginning or December had a feeding tube inserted. Although this has allowed him to gain 20 pounds, his swallowing and breathing have become much worse. He constantly chokes and gets easily winded. His ENT suggested that he get a tracheostomy. We are currently awaiting an appoitment to get a second opionion. Someone had suggested having the scar tissue removed by lasor. Has anyone had this done and if so, what are the results?

@br97 I also am having some long term effects of muscle atrophy and fibrosis/stiffness from neck radiation 13 years ago. I have been researching and find that people have benefit from red light therapy, which is a kind of low powered laser. Some are using a device at home. Swallowing therapy by a specialist in speech therapy is helpful to some people. These long term consequences of radiation are not really more than touched on when we initially had this therapy, but at that point surviving is the primary issue. I thing nowadays there is a more proactive approach but the larger medical institutions. I am seeing my medical team at Mayo in Rochester MN next week and we will discuss this. I am certain that they will have more treatments available than we have locally in NW Ohio. I think your second opinion is the best choice because tracheostomy is a huge step. Traveling to a teaching hospital or large cancer center may be worth it for what they can offer.

@sepdvm I would really be interested in what Mayo has to say. Would you mind sharing?

Here are two related discussions:
- Laser treatment for scar tissue post radiation of the throat https://connect.mayoclinic.org/discussion/laser-treatment-for-scar-tissue-post-radiation-of-the-throat/
- Has anyone had surgery to remove scar tissue?https://connect.mayoclinic.org/discussion/has-anyone-had-surgery-to-remove-scar-tissue/

@br97, has your husband worked with a speech language pathologist to help with swallowing?