Diet after Glossectomy

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Diet after Glossectomy

by LynnBabs on Fri May 30, 2008 12:00 AM

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My husband recently underwent a total glossectomy with a flap reconstruction.  He was told he wouid only be able to take a "blenderized" diet.  We are looking for a diet that does not use commercial diet preparations like Ensure, Boost, Carnation Instant Breakfast, etc.

RE: Diet after Glossectomy

by Georgenone on Sun Aug 24, 2008 12:00 AM

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On 5/30/2008 LynnBabs wrote:

My husband recently underwent a total glossectomy with a flap reconstruction.  He was told he wouid only be able to take a "blenderized" diet.  We are looking for a diet that does not use commercial diet preparations like Ensure, Boost, Carnation Instant Breakfast, etc.

I see you have not received any replies. Its sad that this type of information is so hard to find. I had a glossectomy and more in december.

Many times I have spent entire days searching for the same information. It does not seem to be available. Most dieticians treat me like I have the plague, always In a hurry to cut visit short, say they will get back to me but never do.  The only ones who take time to talk don't have a clue.

For me anything that is not a liquid is subject to be pushed up into the nasal passages if I try to swallow. Everything becomes 50% water or milk. You cannot taste much and what you can taste is affected by treatments. Given all the modern technology available, this is a sad way to live.

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RE: Diet after Glossectomy

by amccrary1 on Mon Feb 10, 2014 03:41 AM

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I am a Speech Therapist that specializes in working with head and neck cancer patients.  I am currently working with a man who had a total glossectomy.  Here is what I tell him.  We need to work with what you have to provide changes in pressure.  The reason food can't go down is there is no tongue to propel it.  The tongue also provides key pressure changes.  So does the velopharyngeal muscle that closes off the nasal passage.  To the person who said food goes up his nose, your VP muscle must not be working.  So what can you do to fix that?  You can do 1 of 2 things:  excercises that may improve ANY strength of existing vp muscle (the vp muscle has 2 sides so if one was impaired by nerve damage or removed in treatent there is another side that can be strengthened to compensate), 2) you can hold your nose while eating (may not be pretty but it helps).  Here is why... think pressure.  You know how you get water to come out of a hose quicker... decrease the surface area of the hose to increase pressure.  When the vp muscle doesn't work, the whole area of the nasal passage is still open... when you close it off it causes an increase in pressure at the top of the throat helping "push" down food.  Likewise, TIGHT lips will help increase pressure in the mouth (when you tighten your lips, your cheeks follow suit which increases pressure and helps "push" things down.) Reclining alittle will help as well.  Putting food in the back of your throat, holding your breath, tucking your chin (this narrows the pharynx which... you guessed it... increases pressure) will help push things down.  Follow every " bite" with a liquid wash (sip of water) will help whatever has been "packed" into the pharyngeal area.  SMALL bites and small sips with multiple swallows. 

In terms of diets... there are a lot of things that come naturally blended or what some called pureed consistency.  Things like refried beans, mashed potatoes with LOTS of butter and sour cream, yogurt, applesauce, thinned out pudding etc.  Look up dysphagia diet under the diabetic association.  It has levels and was developed in 2002.  Dysphagia level I will help with choices.  LOTS to choose from and recipes too. 

If you can find a speech therapist who SPECIALIZES in HNC patients he/she can help you.  The trick is finding one who this is their specialty.  I live in Memphis and I believe there are only 2 of us here that specialize in this. 

For my patients its not WHAT to eat but HOW.  That is why I got on this site was to see if you all had any "tricks" that I may not think of.  So if you have something that works.... let me know.  We have a glossectomy spoon and also use things like syringe and baby spoons.  Curious your thoughts.

RE: Diet after Glossectomy

by apappala on Sat Feb 15, 2014 05:58 AM

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coincidental your post was hours before my husband underwent glossectomy, 75 percent of tongue, and L and R neck dissections. He had a partial gloss in July where they already took 1/3 of tongue. I am wondering about what a person in his case can expect with swallowing/diet. Yes, they will send us to specialist therapist (Hartford, CT). We hear that the back of tongue is important and he retains that. He will be facing rad though and I know that will take him back down once he has healed some. Any idea? Any web sites helpful? He was never a smoker. Jet mechanic in Navy (exhaust, solvents)? Mother was a 3 pack a day smoker gestation til he left at 17 and second hand smoke heavy exposure for ten years career at a job. I am at ICU with him right now. This is scary...looking for what you have seen in this scenario for eating, swallowing. Looking for some kind of promising outlook...if you have seen any for a similar situation. The dr. keeps telling us it is amazing how these patients compensate and that he will leave hospital with a diet (though pudding, yogurt, etc.) Poor guy...all he wants is a drink of water and he cannot have anything due to trach.

RE: Diet after Glossectomy

by Georgenone on Sat Feb 15, 2014 10:49 AM

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On Feb 15, 2014 5:58 AM apappala wrote:

coincidental your post was hours before my husband underwent glossectomy, 75 percent of tongue, and L and R neck dissections. He had a partial gloss in July where they already took 1/3 of tongue. I am wondering about what a person in his case can expect with swallowing/diet. Yes, they will send us to specialist therapist (Hartford, CT). We hear that the back of tongue is important and he retains that. He will be facing rad though and I know that will take him back down once he has healed some. Any idea? Any web sites helpful? He was never a smoker. Jet mechanic in Navy (exhaust, solvents)? Mother was a 3 pack a day smoker gestation til he left at 17 and second hand smoke heavy exposure for ten years career at a job. I am at ICU with him right now. This is scary...looking for what you have seen in this scenario for eating, swallowing. Looking for some kind of promising outlook...if you have seen any for a similar situation. The dr. keeps telling us it is amazing how these patients compensate and that he will leave hospital with a diet (though pudding, yogurt, etc.) Poor guy...all he wants is a drink of water and he cannot have anything due to trach.

This is like other cancer issues in that it is different for everyone.

I had total glossectomy, they said what was left was not worth saving. Radical neck dissections and laryngectomy.

Yes the base of the tongue is important but its only useful if you have other muscels to work with it. All mine are gone,  what others may have for an outlook on swallowing I have no idea. The tongue has other uses just as important as swallowing. The tongue places food under you teeth for chewing and then transports the chewed food to the back of your mouth for swallowing.

For me, if it will not go through a feeding tube it most likely will not go down my throat. No pudding or yogurt, too thick wont go down. I had to learn to eat on my own. Therapists and doctors were no help. All they seem to know is soft food or liquid through a feeding tube.

Prior to surgery doctors do not tell you what a debilitating procedure you are about to receive. If they did, people would not go through it.

All this may slow him down but its not going to stop life. A lot of simple things like eating, drinking breathing are something you learn as an infant. Its now time to go back to being an infant and learning a whole new way to eat breath and drink. It is frustrating and extreamly irratating and your going to get a lot of flack because you are the one there trying to help.

At the present time the trach should not prevent drinking water. He probably has a tube that prevents swallowing but if you ask the doctor there should be no reason why water cannot be put in his mouth with a syringe.

Most people have a nose tube after surgery that will be there for a couple of weeks. He will leave the hospital with a diet? Maybe but, they will not know what he can or cannot eat until swallowing tests are done. At present there is no way to determine the amount of damage done by the neck dissections. Everything right now is just guessing. The doctors can only tell you what they hope for. Most important thing for now is to try and maintain a positive attitude.

Good luck

RE: Diet after Glossectomy

by Sdurnell on Thu Feb 27, 2014 09:08 PM

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I did not have a glossectomy, but I did have a modified radical neck dissection and radiation.  There are a few similarities.  It's hard to know how much the neck dissections affect nerves and muscles until after the radiation, because that can further damage them.  But over the healing process, some function can also return, so it's a time to be patient--not easy!  

Also, you should know that many, if not most, new cases of SCC in middle aged people (who are mostly men) these days are due to HPV, the virus that causes cervical and other cancers, not smoking.  Was your husband's tested for HPV?  If it was positive for this virus, it is more amenable to radiation and chemo, so his treatment has a better chance of succeeding.  

I did not have a trach, but my throat closed up so much I was unable to even sip water, so I can really sympathize with his misery!  Do not despair too much with the diet, as you can puree all kinds of smoothie foods in a blender, and adjust its thickness with liquids.  I was completely fed, hydrated, and medicated for nearly a year by tube, and I'm thankful that it saved my life, but boy was I glad to be able to eat again, especially because my sense of smell settled down and I was starting to be able to taste again.

Best of luck to you and your husband.  Take care of yourself, because this ordeal may be almost as hard on you as him. 

Susan

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