Anyone dealing with long-term dysphagia and chronic cough?

@56tburd
I had radiation and chemotherapy for SCC base of tongue about 16 years ago. The radiation resulted in a series of side effects which have compromised my quality of life. Aside from the short term side effects of mouth sores, loss of taste and trismus, I had long term side effects that were detrimental. I experienced loss of bone due to osteoradionecrosis of the jaw and loss of a few teeth, xerostomia (dry mouth), esophageal stenosis from scar tissue resulting in dysphagia and a feeding tube dependency for nutrition and hydration, Radiation Induced Brachial Plexopathy (RIBP) and significant loss of function, strength and increasing numbness of my left side hand, arm, shoulder and neck. More recently an episode of Bell's Palsy treated by administration of prednisone, resulted in atrial flutter which eventually was relieved by electroversion and ablation. However, nagging symptoms of dizziness and syncope continued especially with postural changes (orthostatic hypotension) from sitting or lying to standing. After experiencing frequent falls and extraordinarily low blood pressure and sometimes very high blood pressure, I was able to see a neurologist at Mayo Clinic and after 4 days of testing the diagnosis was Baroreflex Failure. It was the first time I heard of this problem, but it is the most debilitating because it is challenging to treat and almost impossible to normalize my blood pressure. I take a small dose of medication to raise my blood pressure in the morning along with another short acting medication as needed, but usually just once in the morning as that is when my symptoms of low blood pressure, dizziness and fatigue are most common. You are the first person that I have heard of who has this side effect but if I had not gone to Mayo for a diagnosis, I would be struggling more than I am now. My new "normal" isn't great but it is comforting to at least know the cause of my symptoms and get partial relief. These things that appear many years after radiation therapy like Radiation Induced Brachial Plexopathy (RINB) and Baroreflex Failure can be difficult to diagnose as their onset is so far from the cause. Orthopedic specialists were convinced that my problem with my arm and hand numbness was related to a C6 nerve problem or carpal tunnel problem. Even though there is no cure, the diagnosis is important to prevent going through unnecessary surgeries or treatments. Thank you for your post. All good wishes.

@jcl2018
Hear you ... I was treated for nasopharyngeal cancer in 2006, and in 2020 I was diagnosed with late effects of HNC radiation - i.e. dysarthria, dysphagia and severe neck fibrosis.
I avoid eating out in public - for fear of choking and having to cough out or spit out food in public; also avoid talking when eating; have to take my food in small bits and pieces and also having my food "mushy-like" helps in swallowing.
I do my daily jaw and neck exercises (not sure if it helps, but doing the best I can), and also go for therapy (myofascial) treatments every other week - again, not sure if it help - but doing the best I can to keep my situation from deteriorating.
Recently, I have been referred to try a palatal obturator - any input or feedback on this?
Take care!

My father has dysphagia, which was caused by neck radiation 30 years ago. I guess it's come on over the past 5 years or so. He started coughing a lot and started having problems swallowing his food and pills. More recently, it's become much worse to the point that he has severe pain in the side of his throat/neck almost all the time. He can't eat much and has lot a bunch of weight. He is 6'1" and is down to 132 lbs!!!!!

His former surgeon isn't around anymore, so he finally went to a new ENT, who sent him for all sorts of tests. He was checked to make sure there was no new cancer and was cleared of that. His ENT told him his pain is probably due to some fibrosis and suggested that he take Tyelnol or ibuprofen. He was already trying to take them , but couldn't swallow them.

The ENT also referred him to a gastroenterologist, who said my dad has a few very tiny stomach ulcers. My dad said he never had any symptoms of ulcers, only side effects of radiation treatment. But the Gastro prescribed him some sort of very expensive and bad tasting liquid to take right before he eats. It's supposed to coat his stomach, but it hasn't been helping him at all.

I am getting very concerned by how much weight he lost, and he seems to be getting depressed about it.

Does anyone have any advice or know of any Doctors in New Jersey who might be able to help him?

I had same issues. Got feeding tube. All really good now and weight back on. Haven’t swallowed anything but a sip of water since 2023.

My husband has dysphagia from late effect of radiation treatment some 35 years ago, and is advised by the doctor for tube feeding to prevent aspiration pneumonia. Is it possible to manage dysphagia without resorting to tube feeding?

@josk I, too, am a survivor from 2006 and avoid restaurants simply because of how slow I have to eat. Dry food is a chore, so I prefer dishes with gravy or sauces when possible, and lots of water. I've become accustomed to the side effects and see them as minor inconveniences for the most part. I'll reiterate this here for those who've made it for a few years. Radiation keeps on giving long past the treatment. The neck blood vessels can be affected years later to the point that it is difficult for the body to regulate blood pressure. It's called Baroreflex failure. Everyone who has been through this should monitor their BP regularly, both seated, and reclined. Good luck