My mom is 7 years s/p RAD for R mandibular and L trigonal CA. She is now in the hospital after back surgery July 08 that has not healed. She has been diagnosed with protein malnutrition, and the first modified barium swallow study she ever had the other day after 7 years- shows massive swallowing issues. She has had a MRSA post op infection that was treated and cleared up, but the spinal wound required 2 clean outs in the OR and have not healed at the spine level, just the skin over the operative site. She now has an epidural abcess in her cervial spine near the area she had radiation damage. The docs are possibly recommending a feeding tube at this point. Can anyone give me insight into the placement and long term use of feeding tubes this far out? Most of what I have read is people gettinf feeding tubes during treatments. She is reluctant- she had one previously and it was a bad experience (6 ensures a day should do it- what kind of advice is that? I think we can do more than pour ensure through it?). I am trying to find out info about adding protein powder and tofu to soups etc that she can eat to impeove her ability to heal. I am also wondering if pureed food and pills (thru mortal and pestle, ground up) can be put through the tube? She has trouble swallowing pills as well. Any guidance or advice is great. I think if she can improve her nutrition she may come away with this with her life. If not I am afraid her time is hsorter rather than longer.

The feeding tubes are used when normal eating is not getting enough calories into the patient. Here, that's typically during radiation or post-surgery.

If the tube is large enough, you can drain or pump (syringe or food pump) all sorts of stuf in there, just not taste it. I have a pump and one nice thing is that, per Christine's advice, I can dilute the food, set the delivery rate low and be eating while I am sleeping.

Some people are on PEGs for life.

Kristin, you mentioned something very important. Your post said your mother has massive swallowing issues per the swallow test. Without proper swallowing it would be very difficult, nearly impossible for her to sustain herself. Her healing is dependant upon nutrition.

She also has problems taking medication. Some medication is ok to go thru the tube, but some isnt. That is something to ask the doc or pharmacist if its ok to crush the pill. Time release meds are not ok to crush.

A previous experience that wasnt the best is not what you should be basing your option on. Many other people denpend on feeding tubes besides oral cancer patients. The facts are she needs proper nutrition and isnt able at this time to get it orally. Sounds like the tube is a very good option for her, even a necessity. Im not a big fan of the PEG tube either, I hated mine everyday and cursed it under my breath on many occassions.

Best of luck to you and your mother.

Hi Kristin,
You may already be aware, but the modified barium swallows are done with the Radiologist and a Speech Pathologist giving the patient various types of foods like pudding, breads, thin liquids, etc. that has a small amount of the barium in it. They both watch during fluoro and make a "movie" while the patient swallows. The main thing they watch for is aspiration and which thickness was the safest for the patient. They can also see which thickness is not clearing epiglotis area properly. I'm not a doctor but I help one everyday LOL . This might help you in deciding to consider the peg tube.
I will keep you both in my prayers.

Yes she has aspiration but to date as she has been active she has not suffered the ill-effects of this aspiration- sounds crazy huh? She basically has not epiglottis movt, although her vocal cords constrict to stop apiration everytime, but the cords do not remain shut long enough each time, so she does aspirate. Plus with the damage toher tongue from the radiation, her tongue function stinks. So the feeding tube is thebest option, she does not want it if she can avoid it. It seems unavoidable to me, but it is her decision.

Any progress with your mom on her getting the PEG tube? Did you try seeking out a nutritionist for her to talk to?

Christine,
My mom has chosen not to have the feedign tube and try to improve her nutrition orally. I am scared it won't work and she may be at risk for more complications. But I have received a few phone calls from people with PEG tubes etc who are very supportive and if she needs info I have people to help. She has not seen a nutritionist, but that is not a bad idea. I did some research on protein powder supplements and I have not a clue what is too much or the best for her? So I have some learning to do!

Kristin

Sorry to hear you mom refused to get the PEG tube. She will need to work very hard at keeping up her nutrition. Glad you have some helpers for her. A notritionist would really be a huge help. I dont know what I would have done without mine. This might sound really odd, but I was able to swallow chocolate milk easier than water. Maybe she could try that, its 400 calories per pint and about the consistency of the nutrition drinks.

There are alot of drinks out there to help her like Ensure, Boost, and Carnation VHC. The Carnation one is what many people here have used since the calorie content is so hi. Its not easily found on store shelves, it will eed to be specially ordered thru a pharmacy. You could even order it online using the Amazon link on the main pages of OCF, it helps OCF.

Keep posting and feel free to ask questions, so many people here can guide you thru this stuff.

Surest way is to order it from Amazon, using the OCF link -- Not sure if Medicare will pay for non-PEG nutrition -- That wasn't a concern for me during radiation because I wasn't on Medicare then, but I am now.