Epiglottis Issues Post Radiation Treatment

OKCnative

Bio: 47yr old white male, good physical health, no smoking, no drinking, diagnosed with SCC base of tongue involving one lymph node - HPV+.

I finished treatment 5-6 weeks ago (35 rads and 3 large doses of chemo - no surgery).

I had a pre-existing condition of trouble swallowing due to untreated GERD prior to cancer diagnosis. I would occasionally choke on various types of food.

When treatment was done my doc had me do a swallow study to see if radiation treatment had effected my ability to swallow even more. He diagnosed me with dysphagia (just means difficulty swallowing).

The test - which involves drinking and eating fluids and foods (mixed with barium) while being video x-rayed, to see if there are any obvious issues. Ranged from basically water to diced fruit to a dry granola bar.

Right away they noticed that my epiglottis was damaged. It was no longer "finger like" and is now more like a "thumb" - much shorter, thicker and stubby.

The problem this can pose is that if the epiglottis is not long enough or pliable enough, it may allow food into your trachea. Additionally, food can land on the epiglottis if it protrudes.

My test showed no aspiration but did show food consistently getting hung up on the epiglottis. The speech therapist showed me techniques to clear food off the epiglottis and suggested I always follow each bite with liquid. I was told the problem is not too concerning at this point but could possible get worse as time goes by.

Any of you out there diagnosed with similar post treatment issues involving the epiglottis? Also, has the problem gotten better or worse for any of you? I was told there was nothing that could be done and that you just need to use your throat as much as possible.

I am also being referred to a specialist regarding keeping my throat from tightening or becoming rigid. I was told it's "firm" now but with PT I can keep it from becoming rigid.

 

On a positive note. The day after my swallow study I decided to try to eat solid foods and was able to consume a bowl of homemade chicken and dumplings and other foods!

denistd

Epiglotis

Hi There, yes I have problems with this, had larynx cancer and had 35 sessions of imrt and 3 high doses of cisplatin. This was all in 2009, the aspiration got worse over the years but I can control it quite easily by taking my time when eating, drinking water from a glass is a little tricky so I always drink from a bottle, no problems from the aspiration just cough a little when it goes down the wrong tube. Good luck

jimbeam2017

Swallow Problems

Hello,

I had neck dissection, 30 radio therapy & 6 chemo between Janurary and 1st April 2016. Apart from tirdness my biggest problem has been eating. I had a peg fitted pre treatment, at first I really didn't want it fitted, but  I am so pleased I did, 18 months later I am still reliant on it. The speach therapists started to be concerned about food going down the wrong way, so had a swallow test in July 2016 which did confirm that food was going down the wrong way and said that my epiglotis was't closing properly. I was given exercises for my tongue muscels plus jaw stretching in an atempt to get everything working again, I must admit I only half heartedly done them as the pain they caused was unberable, I did stop doing them and the pain went away, to the extent that I was able to stop taking Oramorph and Paracetamol. By around April this year I was eating reasonably well, so at the next ENT appointment I asked if the peg could be removed, speach therapist asked for another swallow test, which again showed some food going down the wrong way, so recommended that it stay and that I shouldn't eat. I did continue eating waht I could as I really wanted the peg out. At the next ENT appointment the doctors told me I had to continue with doing the exercises, when I told him about the pain he told me that I should go through it, which I attempted to do, this meant going back on Oramorph and Paracetamol as the pain was unbearable again. In the meantime a following ENT app they found a lunp in my neck on the  neck dissection scar and what they called increades activity in my throat, which eventually lead to another neck dissection plus multiple biopsies taken from my throat, luckily everything was OK so no concern. at my next ENT app the speach therapist asked for another swallow test which showed just about everything going down the wrong way and told me to just rely on the peg for everything. So basically I have gone backwards in the past year. The next ENT app is in a couple of weeks. So I am compiling a list of questions to ask where do we go from here. 

It's a really long and difficult journey. Don't give in.

Keith

OKCnative

jimbeam2017 said:

Swallow Problems

Hello,

I had neck dissection, 30 radio therapy & 6 chemo between Janurary and 1st April 2016. Apart from tirdness my biggest problem has been eating. I had a peg fitted pre treatment, at first I really didn't want it fitted, but  I am so pleased I did, 18 months later I am still reliant on it. The speach therapists started to be concerned about food going down the wrong way, so had a swallow test in July 2016 which did confirm that food was going down the wrong way and said that my epiglotis was't closing properly. I was given exercises for my tongue muscels plus jaw stretching in an atempt to get everything working again, I must admit I only half heartedly done them as the pain they caused was unberable, I did stop doing them and the pain went away, to the extent that I was able to stop taking Oramorph and Paracetamol. By around April this year I was eating reasonably well, so at the next ENT appointment I asked if the peg could be removed, speach therapist asked for another swallow test, which again showed some food going down the wrong way, so recommended that it stay and that I shouldn't eat. I did continue eating waht I could as I really wanted the peg out. At the next ENT appointment the doctors told me I had to continue with doing the exercises, when I told him about the pain he told me that I should go through it, which I attempted to do, this meant going back on Oramorph and Paracetamol as the pain was unbearable again. In the meantime a following ENT app they found a lunp in my neck on the  neck dissection scar and what they called increades activity in my throat, which eventually lead to another neck dissection plus multiple biopsies taken from my throat, luckily everything was OK so no concern. at my next ENT app the speach therapist asked for another swallow test which showed just about everything going down the wrong way and told me to just rely on the peg for everything. So basically I have gone backwards in the past year. The next ENT app is in a couple of weeks. So I am compiling a list of questions to ask where do we go from here. 

It's a really long and difficult journey. Don't give in.

Keith

For me, I intentionally chose

For me, I intentionally chose not to use a PEG tube because of many of the issues you mentioned above. I had read too many articles, studies and personal accounts that patients are rushed into PEG tubes because of the comfort factor but then the patient often suffers dearly on the other end because the patient stops using their throat.

When my doctor insisted on a PEG tube I resisted. I asked, "Even with a PEG tube, you're still going to want me to do swallowing exercises right? And, you are still going to want me to swallow as much water as I can, right? So, why do I need a PEG tube again? Seems like I might as well add some Boost calories and forego the PEG tube." They told me 90% of their patients got the tube, but also admitted they all did it before treatment and at the insistence of the doctor.

I am so glad I refused. I used my throat throughout treatment (though it did hurt very much) and now less than 2 months post treatment I can eat anything I want - this weekend was Panda Express, chicken and dumplings, Mexican food, pizza, and donuts. Some food I shy away from, but there is nothing I can't eat now.

cglynch

OKCnative said:

For me, I intentionally chose

For me, I intentionally chose not to use a PEG tube because of many of the issues you mentioned above. I had read too many articles, studies and personal accounts that patients are rushed into PEG tubes because of the comfort factor but then the patient often suffers dearly on the other end because the patient stops using their throat.

When my doctor insisted on a PEG tube I resisted. I asked, "Even with a PEG tube, you're still going to want me to do swallowing exercises right? And, you are still going to want me to swallow as much water as I can, right? So, why do I need a PEG tube again? Seems like I might as well add some Boost calories and forego the PEG tube." They told me 90% of their patients got the tube, but also admitted they all did it before treatment and at the insistence of the doctor.

I am so glad I refused. I used my throat throughout treatment (though it did hurt very much) and now less than 2 months post treatment I can eat anything I want - this weekend was Panda Express, chicken and dumplings, Mexican food, pizza, and donuts. Some food I shy away from, but there is nothing I can't eat now.

Epiglotis Removed

I had my epiglotis completely removed in 2015 and haven't had ant issues with aspiration.  I can eat everything but I prefer to drink liquids from a bottle.  Just goes to show an epiglotis is not necessary.

JBBW

Water up the nose

If I drink more than a sip of water at a time the water will go up the back of my throat and into my nose.  Just a really small amount.  Because of the pain involved when I sneeze I learned very quickly how to supress that reaction.  Is there anyone else who can't drink liquid the way they used to?

JBBW