Epiglottis Issues Post Radiation Treatment

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 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.

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.