I am trying to find others who have had choking problems while trying to learn to eat again post tx. If there are any of you out there, please tell me what your doctors did about it and if the problem was able to be remedied. Was it from radiation effects or something else? And did the problem go away on its own? Or did you have to have something done to correct it?

Yes, I had choking problems from radiation depending on what I was eating. I cut everything into very small pieces before eating and drank lots of water. It was really bad the first month or so after radiation. I generally found that if I choked on something, I could cough it up and then would have no more problems for the rest of the meal. Doctors did nothing. Not even certain if I had a swallow test. Problem never went completely away until second cancer but did improve with time.

There are swallowing exercises you can be given and I would suggest you get a swallow test. Your speech therapist should do an eval for you. Make certain you do as much swallowing as possible, even if only liquid. These muscles must be kept active or you can have permanent problems.

Take care,
Eileen

Yes, choking problems following surgery to remove epiglottis. I was fed through the nose for 4 days while doctor sent me to speech therapy for swallowing test. I had a modified barium swallow while they fed me fruit cocktail and crackers. Always they had me hold my breath and turn my head different directions while watching the food go down on the x ray machine. Finally they found the combination that would work for me. I was also given swallowing exercises (supraglottic swallow) which I now do pretty well or without conscious effort.

After being released from hospital I continued for about 4 months with the speech therapy people to be sure I wasn't aspirating food. I never choke now but sometimes if get in a hurry or eat the wrong food (rice, peanut butter...) I have some trouble with aspiration. Always able to cough it back up and try again with lots of water.

I still find that I get choked easily, now 18 months post Tx. I do it more so when drinking something as opposed to eating. My ENT told me that this was due to tissue changes in my throat following radiation.

Bill D.

Yes, same here. I went through the re-learning process with a speech therapist and positioning food, etc. I seem to do fine for the most part, but every now and then when I seem to be not paying enough attention, going too fast, etc., I choke or something gets stuck. Things with starch are tougher to handle, along with most meats (Unless it's full of fat!). I'm now gaining weight and my surgeon said it's due to hammering the gravies and sauces to help get the food down. At least I can eat!! As Bill said, I was also told the radiation plays a major role in the tissue changes. Continue to "exercise" and practice. The problem never completely goes away but you can continue to make it better.

Steve

I should also mention something else regarding the choking I experience from time to time while drinking a liquid. It is somewhat like what we refer to in the South as "swallowing the wrong way". It then takes me some time to clear my throat to normal again when this happens. I suspect it is one of those rather small things I will have to get used to.

Bill D.

I am over 4 (almost 4 1/2 in my books!) post transaction and I still have swallowing issues with food and liquids. The liquids not cooperating end up with a mouth full of really thick, salty goo. Top that off with a Nissen Fundoplication and if it gets past the throat, the esophageal spincter gets another chance to reject. That one is much more painful. Noodles that used to be the easiest are hit and miss, caramels at Christmas proved near fatal but were eventually handled with a self-control heimlich type maneuver from "deep within". I felt faint from the lack of oxygen but knew what I had to do. When the weather changes from 80 to 25 and back every other day for the past two weeks, it's like Groundhog Day; you never know what to expect. Hot spicy foods trigger the esophageal rejection and that one really hurts deep in the chest.

But, you kow what? I still eat every doggone thing I like and just hope it is a good experience. Even the worst is better than the tube, the boost or the TPN through the port!

I don't know about the rest of you but that first 15-30 minutes every day I seem to have to reteach the swallow, if you will.

The day always starts with a grin, though, because I wake up! I think through it all, that is truly the best time of the day.

I don't know if I ever get used to it, but I know just like bad software, I have developed a significant number of "workarounds" for each specific instance. It's been a tremendously long time since I sneezed food out of my nose and that was really the only one that bugged me, and especially my dinner guests!

X28 hello,

I would like to add something to this subject. I had choking after treatment. I was about 9 mo. past and I went in for a dilation of the esophagus. This is where they stretch the scare tissues in the Throat, caused from Radiation. It helped me 100% I have had the procedure done 2 times.

I do have problems with certain foods like potatoes, anything that seems to pack in the throat. I still need lots of liquids when eating that type of food. I have found meats that have lots of moisture like chicken thighs are easier to eat.

Hope this will be of some help to you.
Take care,
Diane

I'm only two months out from my last Rad treatment and I have a heck of a time getting anything, say the size of an asprin, down my throat. I wind up gagging on things as small as a piece of potato in Cambells cream of potato soup. I want it to get better quicker but we all know that won't happen...so its hang tuff and take it easy.

dear gary im 5mos out of tx for vocal cord cancer,. the first couple of mos i had a lot of trouble coughing.boost seem to make it worse had to stop that.still have some ttouble swallowing at times. ent says my vocal cord is swollen again

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.

Nelie,
What kind of doctor discovered the stricture? Were you referred to an ENT specialist? What kind of doctor did the surgical removal of the stricture?

In terms of discovering the stricture, it should have been discovered by the speech pathologist and radiologist who did the first modified barum swallow I had about 4 months after the end of rad. when I was complaining about swallowing problems. It was visible on the xray but they missed it (because they were so focused on how small my epiglottis was and how it was not moving right).

I then went to see another ENT in Boston about 4 months later (8 months post treatment) when the exercises I had been given by the speech pathologist here didn't seem to be helping and that Boston ENT referred me to a speech pathologist in Boston who specializes in treating people with problems from oral cancer treatment. She did another modified barium swallow and saw the stricture right away (to be fair it was worse by then so I suppose harder to miss). She was at Mass General and told me that they did not do surgery to remove strictures as severe as mine because there can be serious complications (a ruptured esophagus) and referred me to another ENT at Brigham and Womens/Dana Farber who, in cobination with a thoracic surgeon, ended up doing the surgery. It is the thoracic surgeon who is now seeing me there for followup on that (the stricture keeps coming back but it never gets as bad as it was when I had the first surgery when it had almost totally closed my esophagus).

There are gastroenterologists do surgery to remove strictures as well- the esophagus is one of those areas of the body that has several different surgical specialists who deal with it apparently.

If you're asking because you are concerned about having a stricture, I would tell you to ask for a modified barium swallow test--which can be done anywhere. But then if you do have a stricture and need surgery for it, it is worth going somehwere where they know what to do if the worst case happens--the esophagus is perforated. This is rare (of course it happened to me though) but if it happens it can be serious so you want to be treated at a very good hospital for this.

Nelie

If anyone is interested if you PM me I will give you the name of the speech pathologist in Boston, who really has a lot of expertise working with swallowing problems caused by oral cancer radiation.

nelie, i was under the impression that your stricture was in the back of your throat,,,not in your esophagus. i've already had three esophageal dilations. i think my choking problems are caused by a stricture in the back of my throat. that's what i thought you were using the bougie for....the back of your throat. how in the world do you get it all the way down to your esophagus? or did i misunderstand something? please clarify.

The total stricture I had was in my esophagus but I am prone to strictures happening from the back of the throat on down.

Honestly, I don't really know how far down I get the bougie but sword swallowers get things quite far down their esophagus (an analogy that more than one doctor has used when I've discussed with them using a bougie) and my impression is the bougie also goes down there if you use it right. That's why you have to overcome the gag reflex.

nelie,
how did you overcome the gag reflex? i have a bad gag reflex.

So do I. And truth to tell, I haven't overcome it totally which is why I am bad about using the bougie everyday. The main thing is to keep sliding it down slowlu even if you gag a little, but it's not very pleasant.