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Late Onset Swallowing Disorder from Radiation

MattieMom1
Posts: 2
Joined: Jul 2014

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.  Cry 

 

 

alapah's picture
alapah
Posts: 287
Joined: Oct 2009

I'm not a doctor and this is a total shot in the dark on my part but I wonder if the problems swallong solid foods might be related to damage to salivary glands. Radioactive iodine can sometimes affect production of saliva which makes the mouth dry and, thus, makes it difficult to break down and swallow solid foods.

Depending on the path of external beam radiation, that too can impact salivary glands. Seeing as it came on somewhat suddenly following RAI, maybe it is related.

I've had EBR to the neck as part of my treatment as well, although my esophagus was not too bombarded, thankfully. I feel for your husband. It's a tough thing. I do sometimes have trouble eating dry foods and will sometimes take smaller bites and alternate with sips of liquid which seems to help. A swallowing study should be helpful. I hope he gets to have that done very soon. You sound like a fantastic wife and caregiver. Best to you both.

eileen

jlittlecrow's picture
jlittlecrow
Posts: 1
Joined: Jul 2014

I've choked on swallowing water ever since my surgery in Jan 1980, someone with polio told me to turn my head slightly when I swallow, and if I remember to do it, it works for me

Lindy7_77's picture
Lindy7_77
Posts: 1
Joined: Jul 2014

So sorry to read about your situation. I got strangled the first drink of water after my surgery, I wasn't told to be careful, I can't imagine your pain this many years later. l prayed for you that when you read this that you will be directed in your heart what to do. When you think of that new thing to do, follow your heart. It came to me to try turning my head when I swallowed in the hospital and it worked. And I noticed another lady here used this same simple thing to do too, before Id never been on this web page before, I believe in sharing all the help we can for others. I have been trying to exercise swallowing nothing just for the muscle strenght. Which is not your case here yours is years down the road.

I'm not a doctor ,nor a healer of the sorts, like you looking for any mini tibit in this complication to make quality of life better, but if something helps it does. you eat an onion and it makes you sick common sense, stop eating onions, right, so listen to your body.

So that being said I have also been rubbing a few drops of essential oils in coconut oil as a delivering oil since it's absorbed so easily. My daughter got me into this and it has been a lifesaver for those nights I couldn't stand my neck pain. I've tried to stay to as near natural as possible and just juiced my veggies raw and my energy has improved, couldn't eat enough to help me but I can sippy my 10 veggie meals. Real juice (not store bought it made me sick and I couldn't throw up) packed up put in ice and goes with me now. I hope this helps you, when I read your message it broke my heart..bless your heart

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