I can swallow pretty good, but can't position food in my mouth to chew it. Some of the smaller things like meds have a have a habit of going under my tongue and drive me crazy trying to dislodge them. I can't raise my tongue or stick it out and it makes things so easy to go where I have to put my finger in and dislodge them. LOL glad I wash my hands after going to the bathroom.

Gary, Have you had a swallowing test?

Hi Folks - Newbie here from Austin,TX.In another thread I wrote about the daily dilations I give myself with a medical device called a bougie.First thing each morning,I ram it down my throat for 2 seconds and pull out.I haven't choked on food since using it. I can relate to EVERYTHING everyone is saying in this thread.Until I found this site,I thought I was the only person in the world with this problem.Like the old saying,"misery loves company"!

I KNEW if I hung around here long enough I'd find someone else using a bougie! I have to admit I have been bad about using mine religiously--I hate that gag reflex thing. And I have some other problems swallowing that I don't think the bougie will cure. How long have you been using the bougie for?

Nelie

Nelie,

What do you contribute post Tx swallowing problems to...the amount of rad to that specific area; to much dependence on a Peg; neck dissections; surgery to that area; combination or other? I mean why do some develop it and most don't?

Nelie - YEAH!! I found someone else in this world that swallows a green snake!! I've been using it for a couple of years now and haven't choked on food since....knock on wood.I know it's a temporary fix but right now, she's the only girl in the bar.That's why I'm looking under every rock to find a better solution.If you or anyone finds one,please share that info and I will do the same.

What is a bougie? Does it have to be prescribed by you doctor? Is it dangerous? Is it easy to use?

It is a medical device that a doctor has to order and prescribe.It's green,two feet long,tapered and has a heavy titanium vertabrae spine under the rubber.You cover a then layer of water soluble lube on the bougie and ram it down your throat.Count one thousand one,one thousand two,then pull it out.It's simple,easy,no bill deal and helps to keep the pipe streched out. I HIGHLY recommend it if you have scar tissue in the throat area from radition and are having a hard time getting food down.

The bottom line is if you have had strictures and have had to have dilitations to keep your throat, those dilitations can continue indefinitely. The bougie ideally keeps you from having to go back for dilitations every few months

Dave,I really don't know all the answers to why some develop swallowing problems and some don't. Based on all the information I got when I was seeing different docs and speech pathologists to find out what I could do about my swallowing problems, here are the multiple reasons for why *I* have a swallowing problem

1. I lost 1/3 of my tongue from surgery and although I recovered my swallowing ability well after that and before radiation, I was having probelms getting some food back in my throat in a bolus because of that. Since radiation, my tongue probably doesn't move as nimbly and there is less saliva to lubricate food moving around my mouth, so those problems are worse.

2. I also have some chronic lyphedema around the base of my tongue. This is mostly because I had lymph nodes removed in a selective neck dissection. But it prevents that part of my tongue from moving completely normally

3. Radiation wore away my epiglottis so that it is way smaller than it should be and does not completely cover my trachea when it should

4. Radiation also appears to have tightened up the muscles that move the epiglottis so it doesn't move down all the way to cover the trachea when I try to swallow and this is a big problem because it actually can feel like I swallow something and it is stuck in the little pocket formed by the epiglottis. There are exercises I can and, intermittently, do to try to help this but it may always have restricted movement thanks to fibrosis from radiation.

5. On top of all that, I get esophageal strictures that keep wanting to gropw back. these are also caused by radiation and the doc at Brigham and Womens (who also works at Dana Farber) who treats me for this tells me this happens to around 9% of people who get radiation to their throat. Why some and not others? No idea. Some people scar worse than others and this seems similar to that.

None of this has to do with not swallowing enough during treatment. I swallowed water every day and even though I had a stricture, kept swallowing thinsg daily until it almost had completely closed up. I had a speech pathologist tell me that, given how long it took for the stricture to be discovered (it was overlooked in a swallowing test I was given at the hosp. where I was treated) and surgically removed, the fact that I can swallow as well as I can indicates I was doing something right--probably the exercises I did as well as swallowing stuff as long as I could while the stricture was still there.

Whether this has to do with my radiation plan is anyone's guess. No one has said that to me and my RO is an RO from a CCC (Roswell Park in Buffalo), his expertise was in thoracic radiation but supposedly when designing my radiation plan he consulted with other ROs at Roswell Park who had more expertise in Head and Neck radiation. But I do wonder sometimes. Mainly because of a piece of research Gail Mac once talked about hearing about where they gave a specific oral cancer case to a bunch of different ROs and every one came up with a slightly different radiation plan. You have to wonder if some of those might be harder on healthy tissue than others.

Anyway, I don't spend much time thinking bout the "why"s because it takes enough of my time working on the "what can I do about it now"s! Wondering why why why is a key to frustration and unhappiness IMO. And for any given case, including my own, there are so many possible factors you can never really know for sure.

Nelie

Nelie,

Wow and interesting. I hope you find a way to overcome these problems but it sounds like you have a lot going against you.