Anyone dealing with long-term dysphagia and chronic cough?

@njbay The dysphagia will obviously never go away, but I do think the exercises help. So, staying aware of what I can eat and how I can eat is important. I attached a pdf of the exercises I do.

@njbay The dysphagia will obviously never go away, but I do think the exercises help. So, staying aware of what I can eat and how I can eat is important. I attached a pdf of the exercises I do.

I assume that he has been evaluated for esophageal strictures. If so, strictures can be treated with repeated dilations. Unfortunately, post radiation induced fibrosis is an ongoing process. Increased fibrotic tissue may oft times form adhesion and entrapment of the neck and throat musculoskeletal elements and their innervation that may impair the oral, pharyngeal and esophageal phases of deglutition (swallowing).
Swallowing exercises may be helpful depending upon the severity of fibrosis.
I've had MS related achalasia for > 30 yrs which has been further complicated by my diagnosis and aggressive treatment of stage 4 squamous cell esophageal carcinoma.
I developed sever post radiation fibrosis and stricture formations that rendered me non-PO for liquids and solids. I had G-tube placed 3 yrs ago and it markedly improved my nutritional and hydration status. I was able to regain weight from 122 to 162 lbs over several months and have maintained that weight ever sense.

I was able to find a thoracic surgeon who was able to successfully dilate my esophageal strictures to allow to me to eat and drink again. I have repeat dilations every 3 months.
I still have my G-tube in place to use when I become progressively dysphagic between dilations.

I am also fortunate that one of my daughters is a speech language pathologist who specializes in swallowing disorders associated with strokes, TBIs and cancer. She has assisted/ instructed me with various effective swallowing exercises.

@steve55
I have a PEG MicKey button with a tube that I attach when taking Nutren 2.0 500 kcal each. It lies flat against my stomach. I have regained weight in prep for a new surgery. I work 3 days a week, physically demanding, walk the dog, attend grand kids' events, visit daughter in another state. I take my pills 2x/day with a hot, weak flavored coffee which makes it easier to swallow them. It also tastes good and eases pains in jaw.

I assume that he has been evaluated for esophageal strictures. If so, strictures can be treated with repeated dilations. Unfortunately, post radiation induced fibrosis is an ongoing process. Increased fibrotic tissue may oft times form adhesion and entrapment of the neck and throat musculoskeletal elements and their innervation that may impair the oral, pharyngeal and esophageal phases of deglutition (swallowing).
Swallowing exercises may be helpful depending upon the severity of fibrosis.
I've had MS related achalasia for > 30 yrs which has been further complicated by my diagnosis and aggressive treatment of stage 4 squamous cell esophageal carcinoma.
I developed sever post radiation fibrosis and stricture formations that rendered me non-PO for liquids and solids. I had G-tube placed 3 yrs ago and it markedly improved my nutritional and hydration status. I was able to regain weight from 122 to 162 lbs over several months and have maintained that weight ever sense.

I was able to find a thoracic surgeon who was able to successfully dilate my esophageal strictures to allow to me to eat and drink again. I have repeat dilations every 3 months.
I still have my G-tube in place to use when I become progressively dysphagic between dilations.

I am also fortunate that one of my daughters is a speech language pathologist who specializes in swallowing disorders associated with strokes, TBIs and cancer. She has assisted/ instructed me with various effective swallowing exercises.

I am from South Jersey. Treated in 2008 and also have dysphagia, neck arthritis, etc. I was treated at Jefferson and my surgeon retired a few years ago. Unfortunately, I don't have any recommendations of Drs. to see. In discussing with my new Dr. in the Jefferson group, there is a general knowledge that dysphagia happens, but not much in terms of treatment. Courses of action (studied and recommended by Drs.) are not prevalent.

In saying that, I do swallowing and neck exercises every day. And, as I'm sure your father knows..... eat small pieces; have the liquid ready. Realize meals will take longer than normal to finish. My wife finishes her meals and I'm only 1/3 to 1/2 way through my first plate. Sometimes I get impatient, rush and then get food stuck in my throat. Or I don't get a second helping because everyone else is finished and I don't want to delay them. We also have to get into a self preservation mode.

I have found I'm better with meals early in the day. Also, talking during meals doesn't help (breath out during talking seems to be counter to getting food down the other way). Smaller meals. Maybe 5 "meals" a day vs 3.

Last, even though we all had some form of throat cancer and treatment in common, we're all different regarding overall health and how the side effects affect us.

Sorry to drone on. I do have my annual follow up at Jefferson in the next few weeks and will do some probing. I'll post again if I gather new information on long term support. And certainly, look for input from blogs like this. They help confirm what we experience as survivors is somewhat common in a general sense and helpful hints are listed.

@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!

I experienced a different sort of problem years after my cancer treatment in 2006. I spent $4,500, seeing multiple doctors, trying to get a diagnosis, which ended up being baroreflex failure. It's been a roller coaster ride trying to sort that out over the past 8 years. Don't let your father give up on getting answers. The incidence of this cancer is on the rise, and someone out there is probably experiencing the same thing, and they may even have some answers. Good luck!

@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.

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?