dysphagia swallowing problems following NPC

janymac

Hi from uk. Have not caught up with this board for years. plagued by swallowing problems since treatment 20 years ago. Eating has never been the same and cannot eat lumpy foods at all well without choking .does anyone else find it has not gone back to near normal?

wbcgaruss

Problems

Yes, I have some. I have had 2 major cancer deals and swallowing is not the same but I can still eat. My wife is done eating and I am about halfway. It just takes more chewing and adding of liquids because of lack of saliva so it goes down easier. Of course, the throat is probably a little stiff from radiation sort of like old leather is the comparison I use, not as flexible as new leather. After my first cancer, throat cancer I was having problems swallowing and I ended up having dilations a total of 4. It helped a good bit. Not everyone can be helped by these you will have to check with your care team or most likely a gastroenterologist that's the doc who did mine.

Esophageal dilation is best performed by a gastroenterologist who specializes in achalasia and who has performed many esophageal dilations because there is a risk of perforating the esophagus.

Also you may want to check with a speech therapist they do all things swallowing and in that area. They will probably do what they call a swallow study on you to see what is going on and pinpoint your problem so they can come up with a plan of action for you. They/you can watch your swallowing live and in action. It turns out that my best swallow is with my head turned to the left and down that is what the swallow study showed. Here is a link to a video showing and explaining the swallow test--

https://www.youtube.com/watch?v=dRvYL_TAtKI

I think since it has been a lot of years since your treatment if you have not had a swallow test it would be good to get one and have what they  call a baseline of where you are now. Always in follow up your ENT is the guy keeping an eye on you so I would say go to him or her first and run some stuff by them, the trouble you are having and possible swallow study or dilations, etc. They can probably give you guidance on which way to go.

Take Care-God Bless-Russ

motorcycleguy

janymac,

I am also NPC, and I've been out of treatment for 2 years, now.

My eating in general is good, but I do feel like foods can tend to "hang up" in my esophagus, and I try to keep water, milk, beer or whatever - handy to wash it down.

I always tended to eat too fast, though - so that doesn't help. (My old Navy buddy used to tell me that I was the only guy on the ship with a racing stripe on his fork! ... LOL)

How is your sense of taste? Do you feel that returned to normal?

Certainly if you're concerned about choking, you should probably have the swallowing study done, as russ suggests.

The only advice I might have - is to always keep water handy.

I hope you are able to find a solution; I wish you the best of luck!

MG

Mikemetz

Swallow test

I agree with Russ--get a swallow test.  It can show if you are aspirating liquids into your lungs, which can lead to pneumonia. I have an esophegeal stricture too, but have reached the max number of times it can be safely dilated.  I have my first appointment in two days with a group that specializes in swallowing problems stemming from rads for HNC.  I know I'll never eat solid food again, but hope they can give me some relief from the constant tightness on my throat.  I'd advise you to find similar experts in the UK--if left alone, this will only get worse over time.  Maybe they can at least slow it down.

mike

 

VancleaveDan

Swallowing problems after radation therapy, head & neck cancer

I have mentioned this same problem to my doctors with no solutions problem has gotten worse with food constantly getting in my nasal passage blocking it entirely creating a chocking hazard cannot breathe, I am getting an appointment next week with an ent next week.

LitlCJdoll

VancleaveDan said:

Swallowing problems after radation therapy, head & neck cancer

I have mentioned this same problem to my doctors with no solutions problem has gotten worse with food constantly getting in my nasal passage blocking it entirely creating a chocking hazard cannot breathe, I am getting an appointment next week with an ent next week.

Same exact problem

Vancleave Dan,

 

Oh yes, I have the same exact problem, and I fear it's part of the big problem I have now--- I am fighting to get over Bilateral pneumonia, from aspiration into my lungs. This time it's in Both lungs, and it's due to an antibiotic resistant E. Coli.  Yeah.... It cultured out when they went into my lungs during Bronchoscopy .  This was pneumonia #6 for me, and I was admitted 6 days then 12 more days with PICC line at home on IV meds.

But I have  Not Eaten in over 4 Years. No food, just liquids.  I aspirate everything and I think their next step is forcing me to go completely NPO. Please no...

Yeah, stuff pouring out of the nose is no fun is it??! Makes a mess.!!??

 

I don't think it's a real danger but it Is a sign of much more potentially serious  problems, like chronic aspiration.

I hope you get checked out soon.

Let us know,

LitlCJdoll

PS: I see my head & Neck surgeon July 12 for my 3 month check up.  I will talk about all the above. And I have a second ENT, who is Director of Voice & Swallowing Disorders. I will talk to him too ! 

wbcgaruss

VancleaveDan said:

Swallowing problems after radation therapy, head & neck cancer

I have mentioned this same problem to my doctors with no solutions problem has gotten worse with food constantly getting in my nasal passage blocking it entirely creating a chocking hazard cannot breathe, I am getting an appointment next week with an ent next week.

Vancleave Read

My posting up a couple of slots titled "Problems". Well never mind I will make a couple of comments and then copy and repaste it here. I am surprised they haven't sent you to a speech therapist yet. They take care of all things Head & neck like speech, swallowing, etc. They are usually the ones that order and evaluate a swallowing test for you. It will show them live on the screen where your problem lies and they will hopefully have a solution. I am not a doctor of course BUT I highly recommend you get a swallowing test to sort this out. As the years go by this radiation fibrosis they say only gets worse so my concern like some others on here is will I eventually be on a feeding tube if this effect from radiation continues but in my case, I just hope it holds because For now, I can eat almost anything with a lot of chewing and enough liquid but it is a somewhat slow process you can't hurry it as only so much will go through at a time. There are some things I plain avoid like stringy or chewy meat. Or anything else that sort of hangs up in my throat. Since my last cancer incursion, I take all my pills with applesauce as per open capsules or hard pills are ground up. Capsules are easy you just dump them out and I have a little pill grinder I had gotten at CVS during my first cancer and just a twist of the wrist and they are powder. OK that's enough of that-Below is the repost of my message above and there is a video link in there where you can see exactly what a swallow test is and how it's conducted. Just used like any other scan to test to see what the problem is and then a solution found----------

 

 

Problems

Yes, I have some. I have had 2 major cancer deals and swallowing is not the same but I can still eat. My wife is done eating and I am about halfway. It just takes more chewing and adding of liquids because of lack of saliva so it goes down easier. Of course, the throat is probably a little stiff from radiation sort of like old leather is the comparison I use, not as flexible as new leather. After my first cancer, throat cancer I was having problems swallowing and I ended up having dilations a total of 4. It helped a good bit. Not everyone can be helped by these you will have to check with your care team or most likely a gastroenterologist that's the doc who did mine.

Esophageal dilation is best performed by a gastroenterologist who specializes in achalasia and who has performed many esophageal dilations because there is a risk of perforating the esophagus.

Also you may want to check with a speech therapist they do all things swallowing and in that area. They will probably do what they call a swallow study on you to see what is going on and pinpoint your problem so they can come up with a plan of action for you. They/you can watch your swallowing live and in action. It turns out that my best swallow is with my head turned to the left and down that is what the swallow study showed. Here is a link to a video showing and explaining the swallow test--

https://www.youtube.com/watch?v=dRvYL_TAtKI

I think since it has been a lot of years since your treatment if you have not had a swallow test it would be good to get one and have what they  call a baseline of where you are now. Always in follow up your ENT is the guy keeping an eye on you so I would say go to him or her first and run some stuff by them, the trouble you are having and possible swallow study or dilations, etc. They can probably give you guidance on which way to go.

Take Care-God Bless-Russ

LitlCJdoll

High calorie & high protein drinks,

http://www.med.umich.edu/1libr/Nutrition/HighCalorieShakeandSmoothieRecipes.pdf