Late Onset Swallowing Disorder from Radiation to Throat
My dear husband (aged 70) was diagnosed with thyroid cancer 9 years ago. Over the next 2 years, had 3 surgeries (kept recurring), then chemo, then external radiation. He had to have a feeding tube put in after external radiation for 6 months because of the burns to his throat. Also had 2 radioactive iodine treatments along the way. All was in remission for the next 7 years. At his yearly Petscan in January of this year, cancer returned. In early March, underwent another radiactive iodine treatment. Was on a low iodine diet for 4 weeks prior and ate mostly meat (doesn't like his veggies!) with no issues whatsoever. A few weeks after the iodine treatment, solid food suddenly started getting stuck in his throat. Here we are, 4 months later, and none of his doctors (primary care, oncologist, gastroengerologist) can tell us definitively what the heck happened. They are saying it is not the result of the radiation iodine pill, but it sure seems like a coincidence. It's probably this and probably that. Meanwhile, my husband has gotten progressively worse and is now down to only being able to drink liquids (including Ensure and bisque-type soups), softly scrambled eggs and my cheese souffles. We are currently waiting on the approvals for a referral to the University of South Florida Medical Center for Swallowing Disorders. A very frustrating 4 months of go have another test and come back and see us in 3 weeks or so.... ARRGH! I have read articles about late onset swallowing disorders from radiation due to hardening of the esophagus. The tests they have run show no narrowing of the esophagus. I am seeing possible treatments available such as Trental plus Vitamin E, VitalStim, or Thermal treatment (when he gets stuck, taking tiny spoonfuls of ice cream does the trick). Has anyone had a similar experience and used any of these treatments? I am very scared that there is nothing that can be done at this point. We are trying our best to stay positive, but we have gone from a very active lifestyle to not even being able to eat out at a restaurant. Travel is out of the question -- can't bake souffles on the road and really don't want to pack cases of Ensure. 
Comments
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Similar situation
My cancer was of lower jaw 01/2012. (Have had chemo 2x , IRMT and SBRT 2x so lots of rads)In the last 2 months, I also started experiencing changes like you described. I developed cellulitus in my cheek and was hopeful that was was the cause and would bring resolution. The ENT first said one of my vocal cords had frozen then said not so sure. I am presently on a soft diet, some days easier than others. May need to go back on g-tube as losing weight quickly. Even a sip of water can cause coughing. I go tomorrow for another scope and hopefully he will see something. Had to be in the hospital 4 days with the cellulitus so that took priority. I saw a speech therapist Monday and that was kind of a bust. I had a barium swallow test and was told that I did not fail but didn't pass with flying colors either. Was told to tilt my head and tuck chin to swallow but doesn't seem to make a difference. I've never had an iodine tx. so can't contribute mine to that. I know what your husband is going thru. I was making great progress and then all of a sudden unable to eat. I feel as though I can swallow fine but food gets hung up and coughed back up. Eating out is not possible. You might try adding soft boiled eggs with the whites cut tiny, instant whipped potatoes made thin and with lots of gravy, pea soup w/o ham or carrots. I can do tiny bites of chocolate chip cookie dough straight out of a tube. Small sips of milk do better for me than small sips of water. I even went so far as to eat a jar of baby food yesterday, it worked. My best to your husband and hopefully this is fixable for both of us.
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Swallowing Disorder
sucks but you you do what you can. I have had numerous tongue surguries with the last 2 being June 2012 and Oct 2012 (and my tongue was sewed to bottom of my mouth otherwise I would have a big gaping hole under tongue). Rads and chemo followed Dec 2012- end of Jan 2013. I remember being able to eat scambled eggs, bits of cheese and sashimi. All that cha. nged midway through treatment due to nausea but luckily I had a feeding tube. Late July 2013 was able to get liquids down and tube was removed in Sept as I lived on ensure and other protein shakes. Got a vitamix and blentec blender and they both do the trick for me. Anything that is not pureed for me gets stuck. Yougurt with little bits of fruit gets stuck or if my blended food has the smallest onion not blended, that gets stuck. Did the barium test and passed but stuff gets stuck around adams apple. I'm sure the combo of rads, chemo and lack of use for 6 months was the problem but no one really knows or point a finger. I have made small improvements (baby steps) but realize pureed food maybe my way of life. At my golf club I bought them a vitamix and showed them exactly how I need my food blended and I have even travelled with my blender bringing along costco chicken broth. Dinner time I just throw in sauted onions, peppers, celery, carrots and boiled potatoes, carrots,celery or even a baked potatoe, skin and all with a cooked chicken from the store or my wife will pressure cook all this and add chicken broth for the right consistency (had to experiment on consistency). Anyhow it tastes great. You can do beef the same way I even did last thanksgiving, gravey and dressing and the flavors were all there and more. In the morning I make gerber baby oatmeal as it has no chunks and I also have it as a filler sometimes at lunch or late afternoon otherwise it is ensure. These blenders are not cheap but they do the trick to puree the food. Have tried bullet blender or oster and they are ok for a smoothie only but you still run the risk of small pieces of fruit.
good luck
Jeff
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Mattiemom
My dad was 69 when diagnosed with tonsil and lymph stage 4a. He had rad. And chemo and lost his swallow very quickly. We tried swallow therapy but got little results. We tried 1 dilitation with no results. We travelled to wake forest baptist hospital in North Carolina and had the tread procedure done. The dr. Goes up thru the peg as well as down the throat to open up the passages As well as steroid injections to minimize the scaring. we did this 3 times. This has made it possible for dads peg tube to be removed and sit at the table and eat with us. His eating is slow and he still chokes on some foods but he can eat an entire meal. We tried vital stim after this to see if it would get any better but is didnt see much change. I wish you well.
michelle
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i'm sorry he is having
i'm sorry he is having trouble eating. i am 4.5 yrs out from rads and i still have trouble. i have to chew, chew, chew and then chew more. and sometimes the food still gets stuck. i am always the last one done eating, in fact, i never finish my meal b/c i dont' want the others waiting on me to finish. i hope he is able to find somethings he is able to eat. let him know its ok if it takes a long time. praying it gets better for him. also, i traveled with a feeding tube and pole so you could probably make travel work for you guys too. just don't reject the idea without considering all your possibilities. good luck.
God bless you,
dj
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recently back in april, i was asked to visit with a speech pathologist and get her take on swallowing. during the conversation she told us what she thought the problem was. No to make it clear, this is not the first SP that i have seen over the last 18 plus years, probably 6-7 different ones. She asked me to do a swallow test to confirm her thoughts.
3 weeks later the test was run. BTW it is a very simple test with no pain. they try difference things and watch the swallow like a video x-ray. it truly is amazing. more so she was totally correct with her thoughts.
she told us that the radiation had damaged the epiglottis over time. The epiglottis is the flap the folds down to cover the air way and allows food to go to the esophagus without getting into the lungs. The damage to epiglottis kept it straight out and firm and would not fold down, by doing that alot and i mean alot of my foods were getting caught and i would hack the up and out. It also meant that i was aspirating alot, which leads to alot of coughing.
sadly there is no fix for this. they can give some exercises that might help. so we just learn to live with it. after learning what was happening and seeing on the video it sure makes sense. she also said the reason i don't feel the aspiration is from the radiation damage to the area. so you cough but don't feel the aspiration.
Don't just find a speech pathologist and have a test. find one like i stumbled across a Loyola University in Chicago who works with cancer treated head and neck patients almost always.
Something to check out for another option. I too thought the esophagus had been damaged but x-ray shows not.
Prayers you find a way to make it better for you hubby.
john
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Hi Mattie
Sorry to hear this but yes I been there. The problem is as you said radiation side effects hardening of the esophagus. I lost the ability to swallow 2 years ago after having radiation twice to the face for NPC cancer. The doctors radiated a little more then what was needed both times and tissue after years has become harden. He will need a PEG tube for the rest of his life that is the way I live. But look it is not all that bad; I can eat anything anyone else can eat. I told my doctor about what I eat and all he could do was say don’t get it stuck in the tube; I told him I can’t drink mike all my life. If it gets stuck I will find a way to clear it.
I use a hi speed blender at home and when I am on the road traveling I take a Nutribullet with me. If I fell like eating at Berger King I will stop get what I want put it into my Nutribullet blend the hell out of it and sit right there and eat just like everyone else.
I am only 58 and I have a lot of living left to too, don’t let him let this get him down, just another change in life and I am glad to still be alive.
PS: You can waste your time and money on the treatment and none of it will work I did it all. Even to the new one lazar stimulation
http://csn.cancer.org/node/247579
Tim Hondo
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john, i have been coughing afisrpotpe said:recently back in april, i was asked to visit with a speech pathologist and get her take on swallowing. during the conversation she told us what she thought the problem was. No to make it clear, this is not the first SP that i have seen over the last 18 plus years, probably 6-7 different ones. She asked me to do a swallow test to confirm her thoughts.
3 weeks later the test was run. BTW it is a very simple test with no pain. they try difference things and watch the swallow like a video x-ray. it truly is amazing. more so she was totally correct with her thoughts.
she told us that the radiation had damaged the epiglottis over time. The epiglottis is the flap the folds down to cover the air way and allows food to go to the esophagus without getting into the lungs. The damage to epiglottis kept it straight out and firm and would not fold down, by doing that alot and i mean alot of my foods were getting caught and i would hack the up and out. It also meant that i was aspirating alot, which leads to alot of coughing.
sadly there is no fix for this. they can give some exercises that might help. so we just learn to live with it. after learning what was happening and seeing on the video it sure makes sense. she also said the reason i don't feel the aspiration is from the radiation damage to the area. so you cough but don't feel the aspiration.
Don't just find a speech pathologist and have a test. find one like i stumbled across a Loyola University in Chicago who works with cancer treated head and neck patients almost always.
Something to check out for another option. I too thought the esophagus had been damaged but x-ray shows not.
Prayers you find a way to make it better for you hubby.
john
john, i have been coughing a LOT lately and my slp says it is b/c my prosthesis is leaking. lately i cough EVERYTIME i take a drink, and i cough so long and hard it takes my breath. she says I'm not aspirating but after reading your post it makes me wonder if that isn't exactly what's happening. i'm scheduled for a swallow test the 29th. do you know if they automatically look at the epiglottis? if not, is that something i can request or is that something that would have to be part of the prescription? i'm starting to lose faith in my ENT surgeon and the SLP. i hate to feel like this but stuff keeps happening with me and i feel like nobody is listening, just giving me half a*** reasons as to why it is happening. i don't know how to go about finding a doctor who is familiar with H&N patients. i tried to find a dentist who knew of H&N and had NO luck with that at all. i'm feeling somewhat discouraged. i'm hoping the swallow test shows what my real problem is.
dj
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DJdebbiejeanne said:john, i have been coughing a
john, i have been coughing a LOT lately and my slp says it is b/c my prosthesis is leaking. lately i cough EVERYTIME i take a drink, and i cough so long and hard it takes my breath. she says I'm not aspirating but after reading your post it makes me wonder if that isn't exactly what's happening. i'm scheduled for a swallow test the 29th. do you know if they automatically look at the epiglottis? if not, is that something i can request or is that something that would have to be part of the prescription? i'm starting to lose faith in my ENT surgeon and the SLP. i hate to feel like this but stuff keeps happening with me and i feel like nobody is listening, just giving me half a*** reasons as to why it is happening. i don't know how to go about finding a doctor who is familiar with H&N patients. i tried to find a dentist who knew of H&N and had NO luck with that at all. i'm feeling somewhat discouraged. i'm hoping the swallow test shows what my real problem is.
dj
The swallow test has to look at the epiglottis, it's all part of swallowing.
Problem with the side effects is that everyone gets them differently and the doctors do not have studies that show all the side effects long term and what to do. that is why side like CSN is so special. they listen but just do not have answers.
we may never know why things happen, it's sad. some days you fight thru it by the hour and some days there are no problems. i call is like this.... some days your the bug, then some days your the windshield!
sure hope your test gives you some answers.
the swallow test is what many over the years called a cookie test. they set you down in some chair or stool. the x-ray machine is adjusted on the side of you to see everything. from there many do things differntly. for me on the last one, she gave me gram cracker and said chew and swallow. i said i will not be able to swallow without water. so she told me to use water with cracker. that showed me aspirating. then she tried pudding which is thicker and i aspirated it also. then it was some food i brought with that was finely chopped veg. Jimmy John sandwhich, which i aspirated and got hung up and had to spit out. finally it was just water and of coarse it aspirated. lastly she asked me to clear throat over a couple min and spit it out. then asked me to swallow a couple times continuing just with the little saliva i have... sadly i aspirate that also.
then they sit with you and show you the video.... at least they did with me.
hopefully this helps understand how simple the test is
john
please keep us posted on how it goes
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john, thank you so much forfisrpotpe said:DJ
The swallow test has to look at the epiglottis, it's all part of swallowing.
Problem with the side effects is that everyone gets them differently and the doctors do not have studies that show all the side effects long term and what to do. that is why side like CSN is so special. they listen but just do not have answers.
we may never know why things happen, it's sad. some days you fight thru it by the hour and some days there are no problems. i call is like this.... some days your the bug, then some days your the windshield!
sure hope your test gives you some answers.
the swallow test is what many over the years called a cookie test. they set you down in some chair or stool. the x-ray machine is adjusted on the side of you to see everything. from there many do things differntly. for me on the last one, she gave me gram cracker and said chew and swallow. i said i will not be able to swallow without water. so she told me to use water with cracker. that showed me aspirating. then she tried pudding which is thicker and i aspirated it also. then it was some food i brought with that was finely chopped veg. Jimmy John sandwhich, which i aspirated and got hung up and had to spit out. finally it was just water and of coarse it aspirated. lastly she asked me to clear throat over a couple min and spit it out. then asked me to swallow a couple times continuing just with the little saliva i have... sadly i aspirate that also.
then they sit with you and show you the video.... at least they did with me.
hopefully this helps understand how simple the test is
john
please keep us posted on how it goes
john, thank you so much for the info. i hope they are that detailed with me. they always think it is just my prosthese leaking but this time i'm worried that it is aspiration. i will let you know what the tests show. thanks again, i truly appreciate it.
God bless,
dj
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