I just got out of the hospital for the 4th time due to pnemonia. I am in remission since May, but my goal is to eat again. I had a tumor that wrapped around my throat. Two weeks ago I had a botox injection in to a CPbar in my throat to hopefully relax the muscle that was blocking food from going down. Well to my surprise you can asperate just from the phlem in your mouth caused by the radiaton. I was wondering if anyone else has tried to go the extra mile to find ways of eating instead of having a gtube all their lives?

Very sorry to hear you were hospitalized for pneumonia. Hope you are feeling better! There are many tube users who have tried all kinds of things to be free from living with the tube. A while back there was a swallowing study being conducted nationwide. They would have provided free vita-stim therapy(I think thats what its called, but not 100% sure). People also do the barium swallow tests to make certain its safe for them to eat and drink. Charm is one who was relentless in his attempts to return to eating.

Best wishes!

Aspiration pneumonia is very serious. Norman Brinker,( the millionaire husband behind the Susan Komen breast cancer foundation) battled throat cancer and he stubbornly refused to accept that he could not swallow until he died of aspiration pneumonia after dining out on vacation in Colorado. (He had been airlifted from an European vacation years before for aspirating while trying to eat) Of course, it's not your PEG that is causing the aspiration pneumonia, it's your swallowing directly to your lungs instead of going down to the stomach. I have to spit out my phlegm all the time to avoid the same issue.
As far as the extra mile, I see from your posts that you have had the barium studies, but as Christine mentioned, have you tried VitalStim? My speech therapist gave me six months of it as I was bound and determined to eat again. While it did not work for me, it has helped others. Here is a link to their webpage explaining it. My insurance covered it.
What is Vitalstim
Only after two speech therapists, my ENT, the RO and the plastic surgeon all said they did not see how I could ever swallow without aspiration did I stop after a year.
Last, but hardly least, you have had your PEG tube more than long enough to switch to a button or low profile. They have them for regular G tubes (PEG) as well as G/J tubes like Christine has. I hope you do not need a tube all your life, but if you do need one for longer than six months, the low profile button is the way to go. so many less complications and the biggest advantage is less granulation tissue.
Good luck and best wishes.

Thank you Christine and Charm. Were you ever on a peg tube? I see my ENT tomorrow along with my speech therapyst. My next step is to go to see a Dr. in Davis who has gotten some people to eat even after they have been on the peg tube. Unfortunately it was not done in the US. Will keep you posted about tomorrow. Again thanks for the input.

Sorry to learn of your condition. I, too, have been treated for pneumonia 4 times already this year alone!

I am in my 7th year of 100% tube feeding, and realized long ago that I wouldn't be able to swallow ever again, so I resigned myself to making the adjustment. Not my first choice, and damned difficult to do, but a whole lot better than the alternative.

Almost three years ago I learned that I had pneumonia for the first time, and it was successfully treated. But it kept on recurring and my doctors could not figure out why this was happening all of a sudden. The Christmas before last I lost 3 weeks of time and over 25 pounds of body weight that I couldn't afford to lose and that I haven't been able to gain back.

In an effort to find out why the frequent pneumonia, one of the many tests I took was the flouroscopy x-ray conducted by my speech therapist last November. The test confirmed that my epiglotis was no longer inverting to properly close off my windpipe, and whatever I tried to swallow, including fluids, went straight into my lungs.

We had known for years that the epiglotis was not fully functioning just by listening to the extreme nasal sound of my voice, but apparently the side effects of chemoradiation and surgery just continue to damage tissue forever.

I find it impossible not to sip fluids throughout the day even though I have been advised not to in view of the risks of aspiration. I no longer have any cough reflex when fluids do enter my lungs, a condition called silent aspiration, and so if I don't force myself to cough up whatever amount of this phlegm-like discharge that I possibly can before retiring at night, I end up laying there listening to these horrible percolating and gurgling sounds until I do. Scary stuff!

My saliva glands were wiped out during early treatment and thereafter I lost the first line of oral hygiene defense. Anything I drink washes whatever bacteria or (?) that is present in my mouth directly into my lungs and ultimately absorbed by my bloodstream.

So I have become extra diligent about clearing my lungs of any fluids whenever I can. But I am aware of the risks I am taking when I have a drink to help re-hydrate my dry mouth.

In any case, I thought I would share this nightmare with you just in case you weren't aware of this silent aspiration business and wanted to check it out. Hopefully you will be able to rule it out as the reason for the recurring pneumonia.

Good luck with your swallowing efforts, and I wish you every success with your health in the future!

JT2

JT

After failing four MBS (modified barium swallowing tests) aka fluoroscopic swallow tests, I knew that I had a bad case of silent aspiration. Rather than sip liquids throughout the day, I rinse, gargle and spit so nothing goes down my lungs.
Lately, for lots of reasons, probably including the cancer coming back, my mucous and phlegm discharges had increased so much that I was getting up every half hour at night to rinse and spit it out . Your description [quote]at night, I end up laying there listening to these horrible percolating and gurgling sounds until I do. Scary stuff![/quote is right on the money of what was driving me wild. In desperation I asked my ENT what I could do and she prescribed Robinul aka glycopyrrolate. It's a miracle drug in that it basically reduces the mucous and phlegm dramatically. Now I can sleep for three hours before the gurgling wakes me up.
I'm curious if you have been using formula the entire 7 years. I use a combination of formula and blenderized diet (real food- the same dinner my wife cooks, but thrown into a Vitamix) which has helped stabilize my weight.
So far in over three years, no pneumonia but then it is so hard to resist the temptation to sip anything since I know it all goes straight to my lungs. It helps a lot that I can put wine down my feeding tube
Keep the Faith
Charm

Charm

What did you have done that left you with aspiration or silent aspiration possibilities? Did you have part of your tongue removed? Do you still have your larnyx? I am trying tounderstand more about aspiration because I have been told, depending upon how things are done, I could have a problem with aspiration and things going into the lungs could be fatal.

Nocam

My case is a worst case scenario that should not worry you too much. The cumulative effect of both the salvage surgery and the extra radiation foiled all the best efforts of my SLP and even VitalStim electrical therapy. The partial tongue removal was mostly muscle plus it went down to the hyboid bone so it limited my ability to push the food back. The second round of radiation fried not only my epiglottis but also the cricopharyngeal muscles. Together with the radiation fibrosis, the SLP said that it impacted all three distinct components of swallowing, namely tonicity (fancy word for proper muscle contraction) between swallowing, relaxation at the initiation of swallowing, and transport of the bolus into the esophagus.

Bear in mind that after over three years I have had zero problems with aspiration. No pneumonia, no infections, nada. I'm just careful not to sip water or eat anything. It's fine to rinse my mouth, to gargle, to spit, to brush my teeth, to use flouride trays. That's why I had 4 MBS tests because I could "swallow" water without choking during my therapy sessions but the tests showed that not one drop was going to my stomach. Actually I have it much easier than some who can sometimes swallow food and have it go to the stomach and sometimes not.
At this point, I still have my larynx but it's unclear if that is still in my future with the recurrence.
My advice is to get a good speech language pathologist (SLP) who is trained in the swallowing exercises. They can work wonders, although not miracles.