Anyone dealing with long-term dysphagia and chronic cough?

Hello @americanfurn65 Welcome to the Head and Neck group on Mayo Connect. Although I myself got past the long term effects within roughly eight years, some are not so inclined. But if your husband is not getting any relief from his ENT, perhaps a second look elsewhere might be the trick. Certainly I would get a PET scan or perhaps simply a CT scan of the neck to rule out any reoccurrence of the big "C". He seems to be robbed of the enjoyment of life, which is simply not fair.
Let's allow this discussion simmer a bit and see who else has had to deal with chronic cough from SSC treatments. Until then all I can offer is a virtual hug.

I had nasopharyngeal cancer (cancer at back of nose) treatment in 2006, and diagnosed with dysphagia and severe neck fibrosis in 2020. Dysphagia is from late effects of radiation, same goes for severe neck fibrosis. With issues of swallowing and speech - this restricts my lifestyle, and am still trying to adapt and adjust my lifestyle - attempting to be ok on my own, as opposed to going out with friends (issue is mainly self - with issues of swallowing and speech). Have been told that there is no cure for late effects of radiation - only thing I can do is be diligent in doing the dysphagia exercise - in the hope that disabilities/issues will not deteriorate - to the point where a feeding tube is required !! (I was told that there are Head and Neck cancer survivors who have to have a feeding tube inserted to ensure intake of nutrition.)
Suggestion - check out exercises for dysphagia.

Hello from an OLD GUY dealing with Dysphagia for the past 24 years.
You're right, there is no cure. Do the speech exercises, they help.
I'm 81 now and in Hospice. My days are numbered. I get Pneumonia often and
it will kill me. As for your coughing, Deep Breathing Exercising Will Fix That.
When you do them, be sure to practice HOLDING YOUR BREATH. That is a
big help in eliminating the cough. I made it for 24 years. Screw the feeding
tube. Awful, had it pulled out. I've been on a liquid diet for all those 24 years.
You will get used to it. Main meal is blender food around noon and various
blended soups for dinner. GOOD LUCK ! You Can Do It

Wow it’s finally so nice to hear from people who have the same issues. I’m almost in tears. I had nasopharyngeal cancer 2013. In 2021 I was diagnosed with Osteoradioncrosis. I have severe dysphasia, aspiration pneumonia few times and getting ready for the 3rd surgery . My bones are basically ruined. I have fractures and a nasty fracture in my neck. I do swallow therapy and nothings changed but don’t want throat to close. I don’t want a feeding tube again. Living on ensure and soups. I don’t go out with friends or family to restaurants anymore. I eat alone. I also have trouble with my speech. To the guy in hospice. Thank you for sharing. Hang in there. ❤️✌️

Hi suzannekay753, You are not alone. Thanks for your kind reply. Sorry if I was
Blunt but there is no sugar coting our situation. My body was going to hell also
Then three years ago, when I needed help to get out of bed and get dressed. I
HAD ENOUGH ! I also needed help getting out of a sitting position. I cured all
that by getting to a gym for three days a week. My priorities are still the same:
Legs and Triceps. Now, it's easy even with Chemo Induced Neuropathy.
GET YOUR BUT TO A GYM. It will fix your issues. Be strong Never give up.
Once You See Results, You're Hooked. You Will Not Stop

Hi Suzannekay,

Indeed, you are not alone, none of us are, though it can be hard not feel that way at times. I am a baby compared to your time since cancer treatment. I am fifteen months out from 35 Radiation and 7 chemo for stage three laryngeal cancer, paralyzed vocal fold. I struggle with dysphasia fairly often. I always spit up, cough, cannot keep food down ( it never makes it all the way down) comes up in a hurry. I eat next to the sink, or at minimum with a trash can next to me. This includes out to dinner, which, I have only done a handful of times. I do not care that I cannot speak equally at all times, nor do I care that I cannot hold down food. I work hard for what I have, as I am quite sure you do as well. I try to stay in gratitude, though, it is not always easy. However, once I found gratitude, and learned that it existed..I now chase it.
EXERCISE is key! I have to go so very slowly as becoming winded incudes severe swelling in soft tissues of my throat. As such, I have been hospitalized/ admitted twice over this swelling which blocks my air way. They give steroids, and Epinephrine to get it to calm down. This has been going on for quite a while now, over a year.
I had to go from walking 100 yards and being doubled over winded, then neck would swell, then HUGE PROBLEMS. Now, I can walk two or three miles. I am 54 now. I almost forgot my age as I turned 53 during treatment and frankly do not remember the birthday whatsoever. Hard times. At any rate, my point is, and sorry about this but WHERE THERE IS A WILL there can be a way. I couldnt' do any pushups, now I can do a few sets of 25 a piece. This helps me in so many ways as someone mentioned above. I still have to be sooo careful of getting winded, however, I have pushed and pushed and progress in my voice, in my dysphasia is evident. I am no where near where I want to be, however, I am alive, and kicking. Another survivor told me on a different support board. " You are only limited by what you settle for" That really hit me. Keep pushing, try new things. I had the feeding tube for months.....Lord willing I will never go back . Exercise, plus prayer, that is where I put my trust and faith. Best of luck to you!!! Much love.

Oh my you guys don’t realize how good I feel hearing from you both.. I love the quote “you are only limited but what you settle for.” Thank you for that.
I walk every morning and every evening and outside during the day weather permitting. I’m doing swallow therapy with electric stimulation. 8 months no improvement but keeps throat from closing up. I do physical therapy now and do the exercises at home too. Thanks so much you guys. You hang in there as well.
I love hearing from you. Take care. God bless you. ❤️✌️🙏