Cricopharyngeal Dysfunction (Difficulty Swallowing)

I had nasopharyngeal treatment - radiation and chemo - way back in 2006. There was no surgery was involved. I had no problems with swallowing after my treatment and with the feeding tube removed after treatment - except that I do need to have water or liquid to help in taking in the food. My dysphagia sets in in mid 2020 - that was when I started having issues with speech - slurring and not able to form words properly. And with this - my swallowing was very much affected. I was given to understand that dysphagia is from late effects of radiation. At the moment, I am doing my best to keep up with the dysphagia exercises - in the hope that my condition will not deteriorate to the point when I would have to have feeding tube to keep me alive !!!
As mentioned - my treatment was radiation and chemo, no surgery involved.
Hope this helps!

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.

Well, although my situation is different, I can relate to the stopped up feeling because with cricopharyngeal dysfunction the sphincter just sometimes won’t open, so food backs up until it releases through a burp or slowly passes through (like a clogged drain). Sometimes the burps feel like regurgitation. I’ve been doing a ton of high calorie smoothies and protein shakes to supplement other meals which have either been puréed soups or soups with some pieces in them. It is extremely frustrating to not be able to eat normally, I totally agree. Often takes me 1.5 hours to finish anything that isn’t a smoothie or protein shake. Most frustrating health issue I’ve experienced in my life thus far.

The dysphagia exercises I’ve been doing include laryngeal massage, neck massage, Masako manuever, chin-tuck resistance exercises with a towel, supraglottic swallow (when food gets stuck) as well as shaker exercise when food is stuck. I believe they’ve helped make me more comfortable when I swallow but haven’t solved the issue. I hope others who have undergone radiation like you will share what exercises they’ve done.

I have a question about the Botox - did you experience any adverse side effects from the injections?

Thanks for the exercises. I have looked them up on Google and hope some might help.

In the Botox injection that I had last fall, for a week or two afterwards I burped a lot afterwards. As a result, I chose not to get the optional followup injection a week later. It did seem to help my ability to speak a little bit, but soon afterwards I started radiation treatment which took that away.

I had had a swallow test the week before the Botox where I was shown that food was getting stuck part way down. At that time, I could eat anything but needed to take small bites, chew completely and then drink a fair amount of water to get it to go all the way down. It did not really impair my quality of life the way my swallowing problems do now.

In my laryngectomy, the crycopharyngeal muscle was not cut. Apparently this is done sometimes and depends on whether the surgeon determines it is necessary for that person.

I have found that when I get completely stopped up, I can't get anything down until whatever is plugging me up gets burped up. That usually happens after about 2 hours and its always when I am trying to eat something solid. No matter how much I try to chew and dissolve it in my mouth before swallowing, a very small piece about 1/4 inch across will go down and get stuck. In my last swallow test, the SLP showed me again what was happening when I was trying to swallow. There are multiple things going on but one is strictures in the esophagus from the radiation and the other is the crycopharyngeal muscle spasming and not relaxing.

Although I have been encouraged to keep trying to eat solid food, its something I have to avoid for at least the first half of the meal so that I can get something down.

2 hours is a long time to wait for a burp. Mine usually come within 15 minutes so I don't have to wait too long for them. And I know what you mean about solid food - my SLP also wants me to try certain things out but if it means not getting enough calories for the day because my throat is blocked for a while, that's super challenging. I try to limit those "food trials" to times that are outside of my regular meals, which already take forever. I don't know if you are working full time but I am and it has been a challenge to sometimes eat all the calories I need to because it takes so long. Luckily I am often working at my computer and can eat lunch slowly while I work. Thanks for letting me know about the Botox and extra burps. Honestly, I wouldn't mind burping more because then maybe I would get more food down? I guess I'll find out how my body reacts...

I had same cancer in 2013. I now am dealing with Osteoradioncrosis. I had a 12 hour surgery January 2023. It was skull base free flap reconstruction. Very traumatic. The surgery was very successful. However now I have major swallowing and speech issues. I’m working with swallow therapist and doing electrical stimulation . Have not improved at all yet. Lots more to do. I feel your frustration and the tough time swallowing and being social. Very difficult. I guess we just have to hang tough my friend. I’m trying to avoid tube feeding too. I e already done it 2 times before. Once during cancer treatment (radiation and chemo) and once during my surgery in 2023.
Thanks for sharing. You’re the first person that I’ve communicated with regarding after effects of radiation.
✌️

hi
Sorry to hear that you had to have a 12 hr surgery - must be quite an ordeal! My radiation sessions was bad too - I had severe burns around my neck, and was told at that time (that was almost 20 yrs ago) that they are seeing for the 1st time such bad effects! I believe it might be better nowadays - with the advance in technology and all!
I understand that the swallowing and speech will not be back to 'norm' - which means that I, myself, have to adapt and change my lifestyle. I avoid eating out, and this means that my meet-ups with family and/or with friends are nil or very limited - due to swallowing and speech issues.
Until a proven medical treatment is available - am doing the best I can with exercises to keep my speech and swallowing disabilities from deteriorating - to the point where a feeding tube is needed - which I have told my doctor - it's a NO!

Hello. I to have severe dysphasia due to radiation in 2013. I’m trying my best to avoid a feeding tube too. I am unable to even use the thickening product. I just drink ensure ( coughing all the time) puréed soups, peaches I use yogurt to swallow my crushed pills. I’m praying I’ll get better but I feel I’m fighting a loosing battle. I don’t eat in front of people because I have to spit a lot and I cough. Lots of thick phlegm. I had skull base reconstructive flap surgery january 3, 2023 and my swallowing is worse. Surgery was 12 hours long. They removed all the infected tissue and bone from skull base and put flaps(,pieces of my skin and veins) and covered it with new tissue and veins. Ugh. I’ve recovered from that but no swallowing and everything sticks to the flap on the roof of my mouth. Make sense? Anyway I just pray 🙏

Oh my I think my brain has been affected. I already replied Sorry 😢

I can certainly relate to many of the writings on here. I have had this swallowing problem for many years, I would just get dilated every few months. After having my throat hacked by a resident surgeon (god only knows where my surgeon actually was, he certantly wasn't with the resident) I am now unable to swallow just about everything due to all of the scar tissue. In a couple of weeks I am having a feeding tube placed....just in time for Thanksgiving.