Has anyone had radiation induced dysphagia?

Hi @rheaskinner and welcome to the Head & Neck Cancer group. Having the cancer you had at such an early age is rather rare from my understanding. Certainly aged you in a hurry no doubt. As for the issue you have now, I would suspect you get a CAT scan or MRI on your throat to see what is going on there as that does not seem normal to me, although I am not a physician. I'm not sure how the healthcare is managed in NZ but I know the Aussies have to press their primary docs for more tests which are often granted after enough bickering. In other words don't give up the search for answers. You should not have to "settle" for anything less than full function.
We can't and don't give medical advice here but we do have patients who have been through just about everything imaginable. They often chime in with good ideas or previous experiences. Let's see where this goes.
If you enter "pharyngeal carcinoma" in the search bar above you may find a few relative discussions.

Hi. Had squamous cell carcinoma of the nasopharynx in mid-1970s when I was a teenager. I got a lot of cobalt radiation as well as a radical neck dissection.

I was warned that it would cause trismus and that it would be difficult for a dentist to do anything if I didn’t stretch my jaw muscles. I didn’t keep up with the stretching, however, and now I can only open my mouth about one centimeter.

The dysphagia didn’t start for me until about 2003 and I didn’t even know it was related to radiation until I ended up in an emergency room because of an embarrassing incident at a restaurant on my birthday. 🎂 I have had the dilation surgery twice. It helps a bit. It was worthwhile for me.

I started getting aspiration pneumonia and was given a feeding tube for a while. I didn’t like it for a number of reasons. For one thing, it kept falling out… so finally I decided I was not going to go back in the hospital to get a replacement. I had to re-learn how to chew food after I had been on the tube for about a month. Your mouth, tongue and throat “forget” how to chew and swallow really fast. I kept biting my tongue.

Instead of the tube, I have switched to a “soft mechanical” or “full liquid” diet. Most of my teeth are gone but I can still chew a bit.

The surgeon who did my last dilation procedure urged me to stop trying to swallow pills, so now I try to get the kind that dissolve under the tongue. Otherwise I have to grind up the pills and put them in applesauce. I have to take an antibiotic daily and luckily it tastes okay in applesauce.

Hello, @rheaskinner. It must be very difficult for you to have this condition, especially raising children. A person needs a lot of nutrition to keep up with the kiddos! My radiation for Pyriform Sinus cancer is only a few years out, so late-term effects may be looming on the horizon. Yet, I do have trouble swallowing without having water to help the food go down, so I am always fearful it will get caught. One thing is sure: if you don't use it, you lose it--and FAST. Even if you cannot eat much, exercising all those muscles is a must.
Since reading your comment, I did some research. It is good to know there are ongoing studies concerning radiated induced dysphagia, with promising results. The following is one study with a device that is supposedly helpful: https://trialsjournal.biomedcentral.com/articles/10.1186/s13063-022-06832-6
Please research "Red Light Therapy." A small wand is very inexpensive (about $20.00 on eBay). This is a proven therapy to help radiated tissue. Using the wand and doing daily throat/tongue/swallowing exercises may be highly beneficial. I am assuming you have had a "Swallow Study" done. This will determine exactly where the food is lodging.
You will be in my prayers for an answer to your dilemma. Best Wishes to You.

Hello @rheaskinner. I recently joined the Head and Neck Cancer group. I posted questions about long term side effects. You can look up my post to get a full background, I was treated for left tonsil cancer in 2008. Tonsils and a lymph node were removed. 33 radiation and 6 chemo (cisplatin and taxol).

I'm curious as to how you are doing and if any other issues have cropped up? First a few comments regarding dysphagia. Most of us survivors seem to have it to various degrees. I drink a lot of water with my meals. I also realized, after having some issues in group settings, that talking and swallowing are opposing forces. I manage by being aware, excessive chewing, lots of liquid. I also do swallowing and neck (fibrosis/arthritis) exercises daily. I still run into times where food gets stuck. I excuse myself and go cough things out.

Always remember, as much as you think you are a spectacle, your family (especially) and friends do understand you have issues and accept you for it. Any "embarrassment" or frustration hopefully fades quickly with the support you receive. Also remember, as difficult and sometimes stressful as things can be, your family and friends do see your strength.

As a long term survivor who has scoured the web for other long term survivors, it seems we all have a baseline of similar side effects. Downstream issues which are a result of those side effects can be very unique.

Be well.

Living with it. My epiglottis kicked the can about three years ago as well as my vocal cords barely still working. Had to have my peg tube put back in so I could still put something in my stomach.