I am 13 years out. My swallowing has deteriorated. I have a partial epiglottis due to radiation. I am told that I need a permanent feeding tube. I had a peg tube for a period of time after radiation and chemo but they are talking about a surgical procedure to place a gastrointestinal tube.
I seem to be able to drink thinner liquids rather than soft food. But interestingly enough I can eat eggs and thin ham. Strange?
My questions are Can anyone comment on a permanent feeding tube and if so what kind?
I was given some exercises from my speech therapist in 2002 and did them faithfully for a few years but admit to having slacked off. Am I too late to begin again?

Kris originally had a PEG tube placed in 2010. This was the long pendulous type. It was a pain. He had that for 10 months. When he had his recurrence in March 2012 he had another PEG inserted. This time we insisted on a Mickey button. This sits flat against the abdomen and is so much better than the long pendulous type.
This has been in place for 3 years now. I change it myself every 3 months, a procedure that takes all of 30 seconds.
Tammy

If you previously had success with exercises, I would suggest trying them again. Never know, maybe you will be successful. Its definitely worth a try.

Briefly, here's what I know about feeding tubes. There are 3 types of feeding tubes, the PEG tube, J/G tube and the Mickey button. From what Ive heard, the Mickey button is the easiest one to use and much less bulky than the other 2 types. The PEG tube goes directly into the stomach. The J/G tube has the G side going into the stomach like the PEG tube. Its also has another port which goes into the intestine. The PEG tube lasts the longest of all the types. Ive had both the PEG tube and the J/G tube. The J/G tube (for me) needs to be replaced every 3 or 4 months. Some lucky patients are able to make their J/G tube last longer than mine last.

Good luck!




PS... Here is a link with tons of info about feeding tubes and tube feedings from the main OCF pages.

Feeding Tubes (from main OCF pages)

The Mic-key is a PEG G/J or Jejunal tube designed for active people and the intestine one ChristineB, described, the G/J is in the jejunum, the middle small intestine between the duodenum and the ileum. The food for the J tube is osmolized or partially digested since it is past the pyloric valve that dumps food from the stomach into the duodenum.

Thank you for the responses. I am doing the exercises again plus adding a few more.
Friday is the surgery for the feeding tube. I am going to keep working to get off it again.

Thanks so much. I am going to talk to the doctor about a Mickey.

Kris has had a Mickey for 4 years now. They are much superior to the pendulous kind. I change it every 3 months for a new one. Takes me < 30 seconds.
Best wishes,
Tammy

I was surprised and disappointed when my doctor told me yesterday that she would NOT under any circumstances allow me to have a Mickey button until she was through with my dilations. I asked her how long that would be and she said she did not know-could be years. I am getting a second opinion but she is supposed to be the best around doing a CARD dilation. She has to come from above and below because my esophagus is so narrow (almost closed). I have been reading about the TREAD procedure. Does anyone have any experience with it?
Thanks everyone for your input and help.

Has anyone used both the Mickey Button and the AMT low profile and if so which do you like better?

Also I was told by a nurse that the reason most doctors do not like using the Mickey Button is because the patient has to lie flat when using it for feeding. I have looked at their website video's but cannot find that answer although I do not think that is correct. If anyone is using one, please comment,

I don't use one, but my husband does. NO, you do not need to lie flat. In fact, you should only lie flat if you must, otherwise, the liquid may flow up the esophagus and cause aspiration.

Susan