My husband is 15 years post chem-radiation for base of tongue cancer. Starting 2-3 years ago he has suffered from Progressive Dysphagia--increased difficulty swallowing, increased saliva production that is difficult to control, resulting in drooling, spitting, and garbled speech.

ENT referred him for upper endoscopy which found esophageal stenosis, likely post radiation sequel and gerd. Two areas of stenosis were dilated.

My question is, has anyone had good results from dilation of esophageal stenosis?

I had esophageal dilations every year for a decade. They always helped my swallowing, but the radiation damage over 18 years finally started impacting my nervous system. The nerves that controlled my swallowing ceased to carry signals well, and my dysphasia got worse. I started aspirating liquids silently while eating, and they got into my lungs. I had three bouts of aspiration pneumonia which were cleared up with antibiotics. But after the third hospital stay, the doctors warned me that at some point in the future I would become antibiotic resistant, and it would kill me. The dilations solved my eating issues for years. They were great and painless and simple to undergo.

But as long as you can do these simple procedures, my recommendation is that you continue them. IF things go further south, there are other battles with swallowing, speech and more. If you are lucky those will not become part of your world.

The recommendation was that i should go back to nutrition through a PEG tube. I was crushed because I’ve always been such a foodie. I loved the different tastes, textures and more. But three years ago eating and drinking by mouth was no longer part of my life. I’ve adjusted and life goes on without that simple pleasure. But it is a healthy life. My cardiologist could not be more pleased as what I eat now is an optimum concoction of foods chosen for their nutritional value not their flavor. So my blood work looks like a 25 year olds. It’s some pretty weird stuff, but all bought at the grocery store not pharna company junk just full of soy and corn syrup for calories mixed with vitamins. Along with the eating issue, shortly afterwards neurological issues ruined my speaking and my life of lecturing and other simple ideas like talking on the phone were done. Brian

Thank you so very much, Brian,

You have confirmed the recommendation of my husband's ENT. I have been concerned that repeated esophageal dilation might cause more harm that good, as he is noticing only a slight improvement from the procedure. However, he is tolerating the procedure well, so we will continue with this plan. I am aware of probable continued swallowing deterioration as you have pointed out.

Approximately 12 years post-treatment, he started having increased saliva production. The hypersalivation has increased to the point that it is very difficult to control, causing spitting, drooling, interfering with eating & garbled speech.

Have you experienced or dealt with patients suffering from this?
Thank you again

Not so much on hyper salivation. Most people are on the opposite end of the spectrum with extremely dry mouth. B

I remember at least one other forum member reporting difficulty with excessive saliva production, also staring approximately 10-12 year post treatment. Initially my husband suffered from the usual thick saliva and dry mouth syndrome.

I wonder if hypersalivation is not reported or well studied due to the fact that in the past patients did not survive long enough to experience some of these late-term side effects. I will discuss this with ENT at next appt.
I doubt that there is a solution and it will most likely be added to all the other horrible side effects of chemoradiation for oral cancers.
Lottie

sorry, just read this. I too am 12 years out and on a PEG for good. Many posts about that. Like Brian, I live well with it. I do blend all my own food...not so difficult!! I have had many dilations, They started maybe 6 years ago and did help eating. Now, I get them every 4 months and they help in my ability to swallow saliva, kind of important. But in all honesty, I still have to spit often, really often .........through out the day. When I drive I carry a spittoon1 Not enough power to spit out the window!!! technically, my esophagus shrinks to 12 fr, the doc can dilate it to 50 fr, pretty good. Actually gravity helps the saliva go down my esophagus, and I can take a few sips of fluid.

So by all means keep up with dilations, they are easy and will help

Steve

Thank you, Steve, for coming back on to respond. It is helpful, although sad, to know that others have these same issues.

Recently a new problem has developed--food particles entering the nose. I believe this is due to nerve damage rather than esophageal stenosis. So both areas are probably deteriorating. Yesterday I reported this to ENT. Swallow study is probably in order.
Lottie

I hate to laugh!! This has been an issue for me for years, even now. Before the peg, my nose was grossly full of food after every meal. I would aspirate, cough and the food went up my nose. I would blow mu nose, look at it...hamburger....fish...pasta...what ever I ate. I am NPO now but quite honestly I hake a few bites maybe every other day. Small bites, like the size if a peanut...bingo...up my nose!!! Even if I take a sip of something...like beer...bingo, I have beer in my nose!! I know that I should just not try to swallow, tough to stop, I am a bit better but always slip.

I believe the food in the nose is totally normal for "our crowd"

Steve