"Did You Have Trouble Swallowing After Your Laryngectomy?"
When I can swallow it is strictly liquid, Jevity 1.5. Otherwise it is peg feeding.
Peggy Balle - New York, NY
For approximately a month after I got home I had a tube through my nose into my stomach. I drank a lot of Ensure during that time. After that month I was able to eat things like Jello and mashed potatoes and anything soft for another month. Then I graduated to big people food and could eat anything I thought I could safely swallow. To this day I still get things stuck in my throat such as bread and chicken. If I take a couple of sips of water it goes down. That's my story and I'm sticking to it.
Chris Pieper - Fond du Lac, WI
I was on a feeding tube for about 25 days following my surgery, which was March 23, 2016. I had difficulty swallowing for about three weeks after I went on food again but within that time, I was pretty well back to normal. Have not had any problems since.
Joe Rook, Salt Lake City
My total laryngectomy was in April 2013. On every follow up visit with my surgeon I told him I am having trouble swallowing water but not food. His answer was, to him that did not seem a major problem. Then one time I told him some pita bread and chicken got stuck in my throat and I waited 10 minutes before it went down. He recommended an esophageal dilation. He set me up for the dilation but it did not affect my difficulty swallowing water or my occasional difficulty swallowing bread or chicken or dry crackers.
I told my swallowing troubles to a doctor at an IAL meeting. He said I should ask for a modified barium swallow test. My SLP arranged for the test. As I swallowed the barium mixed with various thicknesses of liquids, my SLP and the radiologists were amazed. They said to each other, "Did you see that? That is serious." I asked what did they see. My SLP said there seemed to be a mass obstructing my esophagus. She said I should get PET and MRI scans. Which I did pretty quickly. I heard from my SLP that the scan did not show anything obstructing my esophagus. I should see the surgeon for his explanation.
My surgeon greeted me and then he drew a sketch of my esophagus as he saw it on the swallowing test. It had a long narrow section in the middle third of the sketch. His sketch looked sort of like an hour glass.. He said the narrowing is due to the cricopharyngeal muscle. He explained that my cricopharyngeal muscle was longer than usual. He had cut some of that muscle during my original laryngectomy but my swallowing problem was due to some length of that muscle which does not relax properly during swallowing. He can section (cut) the rest of that muscle if I need improved swallowing.
He asked what I thought of the quality of my voice and of my ability to eat and drink. I answered my voice seemed decent to me and my swallowing is only a minor bother. If my quality of life is not impacted by the current situation, he would suggest putting off the surgery. If in the future my quality of life is negatively impacted, I should call him and we can reevaluate the value of this surgery. I agreed not to have the surgery.
One of the strong reasons why I thought it was better not to have the surgery at that time is that I did not want to disturb my esophagus on which I rely to make the vibrations by which I speak.
I asked what caused the radiologist to suspect a large mass. He said the indentation during swallowing would look the same if it were due to a large mass impinging on the esophagus or if it were due to an cricopharyngeal muscle that did not relax. He showed me on his sketch of my esophagus how that would be the case.
I afterward asked where with respect to the cricopharyngeal muscle did my TE puncture lie? I was told my TEP lies just barely above the cricopharyngeal sphincter. If it was below or even at the same level I would not have a very good voice.
Since then I have taken some liquid with every bit of food. If food gets stuck, I wait for gravity to pull it down or I occlude my stoma and breath out which sometimes help push the food back into my throat.
This whole episode gave me knowledge of my swallowing problem and thus some peace of mind.
Jay Hauben – New York, NY
Larry since April 19, 2013
For me it was about 4-6 wks. Before I got my first TEP put in, I was using a syringe & put my liquid nourishment in that way. It's been over
5 yrs. now & I still have to make sure I chew my foods up a lot in order to swallow because they had to make me a new throat out of a muscle from my chest but other than that I eat whatever I want."
Gene Maddox – Columbia, SC
Woke up with a feeding tube stitched to my nose. Got fed up with that nonsense after the respiratory specialist banged her gorilla paws on it for the umpteenth time in the first couple of days, but doc refused to remove it until 10 days out. Same amount of days he said I could go home if I was able to eat regular food. So the next time gorilla paws banged the tube I tweaked her snooze to let her know how bad it hurt when her clumsy butt hit that tube.
No, just kidding about that. I did complain to her supervisor and got a new tech and she was more careful.
Back to swallowing.
Tenth day after surgery I sent my gorgeous Vicky Sue over to the McDee's across the street from the hospital and get me a 1/4 pounder with cheese and fries for lunch because I simply could not stand to spend another day in the hospital.
I thought that 1st bite was never going to go down and I'm no sissy when it comes to pain. How can you be after being beaten silly with a tire iron? (Whole 'nother story, that) But that attempt at eating solid food brought tears to my eyes, but . . . being the mule that I are . . . I figured all that was needed was . . . another mouthful.
Took forever to eat that lunch (or so it seemed) and I was certainly glad she had the insight to purchase two large drinks with that order cuz it took both of them to help me 'wash' that chow down.
Doc came in just as I was finishing up and he put me on soft solids for supper.
Nose tube came out and I was discharged after breakfast the next day.
Since then I've been eating and drinking anything I want. Occasionally I encounter a brief swallowing discomfort, but tis nothing that a good swig of sweet tea or coffee can't overcome and it's back to chowing down.
Will be my 12th laryversary come Halloweenie this year. Still eating and drinking anything I wish with little or no trouble at all.
Just another reason I always say: "God treats me far better than I deserve."
Troll - Jacksonville, FL
October 30, 2006
Right after surgery swallowing was, and I still have some days where it still is, VERY difficult. Right after surgery, all I could down the ol' hatcherooni was thinned out oatmeal or liquids. On some days after a couple of spoonfuls, I'd be absolutely stuffed and couldn't eat anymore even if I tried.
Some days, if I bent over, I could swallow and the next day THAT wouldn't even work. It finally got so annoying that I said something to the doc. He put me on a liquid diet until another doc said "dilation you silly goose neck". AHA, a whole new world. First dilation was a HUGE swallowing improvement for about a week. So I had dilations once a week, which got moved to every other week, and then every three weeks. Right now, I am a dilation a month and I'm a happy swallower. I can tell when I'm up for another dilation because the swallowing becomes a bit difficult. Expectations down the road...yearly dilations and then maybe a dilation here and a dilation there.
But it certainly made a WORLD of difference immediately -- for which I was/and still am thankful and grateful.
Lisa O’Farrell – Chicago, IL
No swallowing issues at all. Worked from day one. Can eat anything.
Ron Fonte – McMurray,
Fed by tube after lary surgery ! I woke up with a feeding tube in my nose after my laryngectomy surgery. As I recall, I had to eat with that tube for about two weeks after my surgery. Then, they had me do a swallowing test (to check for swallowing ability, leakage, aspiration, etc) and I passed it, so they removed the tube, and let me start eating and drinking by mouth. Over the next year, I had 3 recurrences, and 3 more major neck surgeries, and 3 more times woke with a feeding tube in my nose, and it stayed there for anywhere from 5 days to 10 days after each of those surgeries. I had radiation to my neck in 2013, my laryngectomy in 2014, two recurrences surgeries in 2014, thyroid removal surgery in 2015, radiation again to my neck in 2015 (and chemo). I never got a feeding tube during my two courses of neck radiation (but should have during the first one - very painful swallowing).
So, I'm now 5 years out from my 1st neck radiation, and 3 yrs. out from my 2nd neck radiation, and I've always been able to swallow both liquid and food somewhere between great and decent. My esophagus was stretched one time - about 2015. If I try to swallow pills the size of a full size aspirin, that have sharp / square edges, they will get stuck in my throat and I have to just patiently and calmly wait for them to "melt" (5--15 minutes) before they will go down. (I can't die from this throat blockage, b/c I of course breathe through my neck, not my mouth/nose). --- Soooo, my swallowing is still pretty good, as long as I chew my food very thoroughly. I've thought about going ahead and having my esophagus stretched again, but will probably wait until my swallowing gets harder than it is now.
NOTE: A year ago, I had my GI Dr. try to do a balloon stretch, while he was doing a routine upper GI scope. My swallowing was "ok" at the time, but I thought he might as well try to stretch it a little while he's in there doing the scope. After I woke up, he told me he tried the balloon stretch, but was afraid of tearing my esophagus, so he aborted the attempt. I later told my ENT laryngectomy surgeon about this, and he said, "David, if you ever need your esophagus stretched, you come to me. I do these all the time on irradiated laryngectomees and I'm understand the tissue and I am NOT afraid of tearing your esophagus".
He convinced me that and ENT surgeon is probably a better choice than a GI doc for doing esophagus stretched on irradiated throats. (Perhaps it depends on which doc has the most experience with which type of throat procedures, throat surgeries, which has done throat reconstructions, which sees more irradiated patients, etc, etc).
I quickly got tired of the time and mess of using the big manually operated syringes to feed myself formula through my nose tubes. It was boring, messy, sticky, and your arm and hand gets tired pressing constantly on the syringe. I tried doing it really fast, to get it over with quicker, but that upset my stomach. So, I slowed down to a much slower feeding rate and felt better afterwards. So, b/c of the boring, tiresome mess of using the manual syringes, I got on eBay and bought me a (Kangaroo brand) feeding pump and some feeding bags - $350.00, and a rolling stand ($75.00) to hold the pump and bag of formula.
It was FABULOUS ! I just poured my feed in the bag, hung it on the rolling stand, attached the battery operated pump on the rolling stand, and pressed the start button. Then, I could sit down and watch TV, or walk around and push the rolling stand around with me, just like at the hospital. --- I made a 15 minute phone attempt to get my insurance company (Blue Cross) to buy the pump and stand for me, but of course they made it such a huge bunch of BS to go through that hung up and decided to just buy one myself.
David Smith - Strawberry Plains, TN
Class of 2014.
I had my Lary in February this year and at first I had a lot of difficulty swallowing. Six months on I can eat Shepard’s pie jacket potato with cheese and mayo so things are improving. I don’t think anyone eats normally do they?
Elaine Payne – Blackbush Lane, UK
I was treated for pharyngeal cancer in early 2002 with 15 days of chemo and 31 days of two sessions of radiation each day. Over time the scar tissue from the radiation, the gift that keeps on giving, compromised my ability to swallow. I spent nearly two years with a feeding tube and several bouts of pneumonia. Breathing became more difficult and I had an emergency tracheotomy in late June, 2015. In late August, 2015 I had a total laryngectomy. Two months later I had an ultra valve inserted. I began eating and speaking again and in January of 2016 I had the feeding tube removed. I have gained back the 30 pounds that I lost and am always hungry and ready to eat. I now use an Activalve and speak pretty well although it can be difficult to understand my speech during a telephone conversation. I can eat pretty much everything, although I find it difficult to swallow steak and lobster so I don't bother. It took time, experimenting and patience but life is good.
Dick Spiers – Mashpee, MA
In introduction even though I have had more than my share of issues in the past months and still have cancer, I am divided in providing anything resembling positive experiences in consideration of those that have so many more challenges than I do. I have a 68-year-old neighbor who did not have a TL but who,\ because of radiation, has not had any food by mouth for over eight years and I know that there are many others out there with the same or worse issues. It is such a personal journey.
The choice is whether to provide positive encouragement or potentially inadvertently make someone feel worse about their own situation. My conclusion is that there is no definitive answer except to be sensitive in not being overly enthusiastic in representing your own story.
I have not had any problem with liquids since the initial surgery but have had difficulties with everything else. My opening dimensions are less than what is considered a stricture I’m told, but I have an area of stenosis that does not allow a scope to pass. In the beginning I got by with Boost plus, soup (usually without any solids), smoothies, scrambled eggs etc. If something got stuck it would take a lot of time to clear I’ve had to go the bed a couple of times without being able to clear the blockage.
A few months after initial surgery I had two base of tongue surgeries which set me back further. All in all I’ve lost over 50 pounds but that’s OK. In fact everything is ok and I am so very grateful to be able to do what I can do. Despite previous radiation and surgeries, I still have a sense of taste and smell that varies from day to day but I have it. Leek and potato soup has been a godsend!
I started a dilation program about 4-5 months ago. Under a mild general anesthetic they insert balloons of increasing sizes and pump them up. Takes less than half an hour but from what I’ve read some people have issues like tearing etc. some serious.
I’ve had three without those issues. First one no real help, second maybe a little, third-definite improvement. If memory serves I was up to 13mm. Separately I had a TEP installed last September. By January it had rotated allowing the puncture on the back side to heal on its own and prevent replacement valve insertion. The third dilation opened the puncture up causing leakage. That combined with the fact that I was put on chemo for 18 weeks has delayed anymore dilations but only for now God willing. One of the collateral benefits of the third dilation is that I find it easier to clear blockages rather easily using a finger.
Even with dilation if I were to try and swallow a single kernel of corn it would cause blockage. Eating is hit or miss and takes a great deal of time and tons of water but I can eat.
Amazingly by nibbling and chewing a lot I can eat a burger with roll and thinly sliced tomato as well as tuna and meatball hoagies. To eat half a burger or half of a six inch hoagie/sub takes 20 -30 minutes.
I hollow out the roll and toast. Hard is better than soft for me for items that are absorbent and can swell with liquids. My philosophy right or wrong is that for bread products of any kind if they get stuck I just keep flooding them with liquid until they breakdown and then use my throat to force them down. If it is something that will not eventually react with liquid, I use the finger and the gag reflex. I’ve gotten pretty good at the latter and remember I’m technically a rookie.
Restaurants cause a great deal of concern and planning and I mainly avoid them. Even with planning they are hit and miss. Before dilations I went out three times with only a couple of trips to the bathroom total. I had lentil salad, soup and flaky fish but also had potatoes.
After dilation I went out in Orlando at the IAL/WW event and ordered clam chowder (giving all larger pieces of clam to my wife) and tuna poke appetizer. I had to make five trips to the bathroom but luckily the private bathroom was next to our table. A week later I had eggplant spaghetti which was absolutely fine. Alcohol use increases the frequency of blockage greatly. I’d like to believe it’s because it encourages me to try and swallow more than I should but it probably makes the new throat muscles less effective.
To that point my SLP originally told me that the flap taken from my forearm did not have the same muscles as the throat it replaced and that would affect my vocalizations and swallowing. However, subsequently my surgeon stated that the forearm certainly has muscles and that both should improve over time. Hopefully encouraging to those to whom it applies or may apply.
I will keep trying to get better at swallowing and as I learn more will be happy to report more if deemed to be helpful.
Tom Tully – Yardley, PA
Ten days after my laryngectomy I was still not doing a good job of swallowing, but was released from the hospital anyway. I had a primary puncture for a voice prosthesis so my feeding tube was through the puncture and my wife and I did the feeding through that while I gradually relearned how to swallow. That did not take more than a few added days.
Following that, I had no swallowing difficulties for over twenty years. In the fall of 2015 I began to have difficulties swallowing pills. Following some back and forth with my ENT, I consented to have an esophageal dilation done in January 2016.
The procedure seemed to go well, but about five days later I began to have problems and was found to have a tear in the esophagus that developed into an abscess and a fistula into the area beside my stoma. I went through a week in ICU, several procedures to clean out the abscess, several more weeks in the hospital and a month in rehabilitation.
It was three months before I got rid of a laryngectomy tube and had my TE voice back and was able to eat solid food. I have not had any further swallowing problems, but certainly caution anyone to be aware of all factors when considering esophageal dilation.
Carl Strand, - Mystic CT
As an adult I have always had a difficult time swallowing large pills, however swallowing food was never on issue. I do tend however to eat slowly, take small bites & chew thoroughly. After my surgery in 9/2016, I had several occasions where things like unbuttered bread, French fries, rice, chicken breast & raw veggies would get stuck. Since we breathe out of our neck, we won't choke to death.
I once had a piece of uncooked celery caught in my throat overnight. Swallowing progressively got worse & I had to crush even the smallest of pills & totally avoid any of the above mentioned foods. On 4/06/2018 I had esophageal dilation performed by the ENT doctor/surgeon who had performed my total laryngectomee. Based on other Lary experiences, I recommend an ENT surgeon as opposed to a GI surgeon. Normal opening for swallowing is 42, mine was 28, surgery increased to 36. I still eat slowly, take small bites & chew thoroughly, however I can eat anything I want.
Cyril Due eke – New Baltimore, MI
A very blessed Lary, Class of 2016
Thank God have never had any swallowing issues since my surgery. I can eat anything I did before and consider myself very lucky. My only regret is I can't smell it but my wife always makes a point of saying how good my cooking smells!
Mark Stoughton – Sanford, NC
Yes my Laryngectomy affected my swallowing. It seems like when I swallow I get a lot of air along with whatever it is I am swallowing. I then sometimes get the hiccups from I am guessing all the air. I also seem to have more trouble moving the food to the back of my throat in order to swallow. I sometimes feel like I cannot get my mouth to open as wide post surgery. I just try to cope with these difficulties and hope they will improve with time.
Tom Bohrer – Pleasant Plains, IL
Following my initial surgery and my doctor’s ok to begin a soft diet, I had minimal swallowing difficulty with most moist food. Later, though, radiation treatments so impaired my ability to swallow that my peg tube wasn’t able to be removed for 8 months.
Finally, an esophageal dilation was tried, followed 2 weeks later by a TEP puncture. I could speak in a very low voice immediately, but I noticed that it was more difficult to swallow pills or food unless it was pureed. The food and pills would get caught in my narrowed esophagus, so I would use the button on my HME to help dislodge either the food or a pill by forcing air through that space. Or at times, a mashed banana and water would help the food slide down.
Different sized prostheses were tried, as well as 2 additional unsuccessful dilations performed, and as my speech worsened, my Voice and Swallowing doctor decided to remove the prosthesis with the intention of placing a new puncture in an area that was not so strictured. I began using an electrolarynx as the puncture healed and have not returned for a new puncture because I’m able to eat anything and am understood easily by most people.
It is 3 years later and I’m still relying on my electrolarynx to speak.
I have decided that I am able to eat most food if I take small bites, chew forever and chase it down with lots of water. If I’m with a group of people at a dinner, I finish eating when they do and take the rest of my food home with me. Just remember that your food is now moving from your mouth to your stomach mostly by gravity; so remember to sit up straight and stretch your neck upwards to aid in the flow of food. For many, this is not possible and you must rely on a peg tube to receive nutrients, so I consider myself a most fortunate lary.
Barb Gehring - Akron, Ohio
Next Month's Question:
Did you have a caregiver during your recovery
and if so how important was she/he?
Thank you for your submissions. Edits are used for length, clarity and to keep comments on subject of the month.
Staff of Speaking Out