Anyone dealing with dysphagia? What helps?

@praying4miracle, welcome. I'm tagging fellow members like @sharonlee @josk @steve55 @forestleaf @ltecato to join this new discussion and share their experiences.

You may find some useful tips in these related discussions:
- Has anyone had radiation induced dysphagia? https://connect.mayoclinic.org/discussion/has-anyone-had-radiation-induced-dysphagia/
- Anyone dealing with long-term dysphagia and chronic cough?https://connect.mayoclinic.org/discussion/chronic-cough-2/

In February 2006, I was diagnosed with nasopharyngeal cancer IV - & went through 35 rounds of radiation and 5 rounds of cisplatin treatments. Gone through feeding tube, weight loss, mucus in mouth, hearing loss, and taste buds wacky!
Diagnosed in mid 2020 with dysphagia, together with dysarthria (speech issues) - advised that these are late effects of radiation.
For food - I cut them to small bites, and if need be when food gets stuck in my throat - I will spit it out or cough it out (I try to cope this way with small bites and try to avoid having to blend my food). Reason why I opt out of having meals in restaurants, or with friends. Surprisingly, my weight is pretty constant in the last couple of years.
I had mentioned possibility of injections, or botox treatment to my doctor at Late Effects of Radiation Clinic - but, he was not too supportive on this.
Good luck & take care !!

@josk,
That you for responding...very frustrated with finding help.
I aspirate on everything so looking for NMES which might be able to strengthen my muscles enough t engage my epiglottis. If you hear of anything like that please let me know. this is miserable as I cannot even swallow water without coughing.
Appreciate the response!

I began aspirating about 5 years ago and it just kept getting worse and worse. I tried every method of swallowng and some red light treatments but to no avail. My ENT (the lead doctor of my cancer team) suggested I get a feeding tube. I was very reluctant to do so and resisted until 2024 when I could no longer even drink a smoothie without aspiration. I thought the quality of my life would diminish but instead it has become much better and I am not longer starving myself trying to find a diet that would give me enough nourishment. At first I ate some regular foods like mashed potatoes, etc but have now gone total nutrition through the G-Tube. The biggest problem I face now is the compromised immune system and the very possible threat of getting all kinds of respiratory ailments. Good luck with your pursuit and let me know how things progress. Take care.

@praying4miracle hello have you talked to ENT people about having your throat muscles shored up? I had this done 4months ago and its been amazing. Can have it done sitting in the chair. Had mine done at Fiona Stanley Hospital in Perth Western Australia. Fantastic

@sart can you explain what the process is for this and what is this exactly? I've never heard of this before.

@sart
What does that mean? What exactly do they do? And which muscles?

@jersey3422 hello this is relatively new procedure performed by the ENT department, Dr Travis Leahy, at Fiona Stanley Hospital in Perth Western Australia. He's brilliant. Im sure if you google him you will be able to find out the name of the procedure. Sorry can't remember what its called
Hope this is useful for you .

@praying4miracle ots not the muscles. It's the cavity between your oesophagus and neck muscles, the Dr injects this sort of filler into the cavity and it shores up the muscles
Sorry not very good at explaining it . I can swallow and talk much better now 😃

@sart I did Google him but couldn't find anything other than the the filler procedure for the focal chords when they do not close properly. I was looking for something for the swallowing muscles. Was it a vocal fix you had or swallowing?