So its been three weeks since my sister's total glossectomy. She had a swallow study done this past Friday and did very well at protecting her airway. The speech pathologist said as far as she is concerned, the feeding tube can come out. The surgeon said lets wait a few more days, let her get some more eating/swallowing practice in before the tube comes out. He gave me scissors and told me how to remove it. Now she is growing impatient and wants it out now. My parents are trying to make her wait, saying she is currently not eating enough to sustain herself (which is true) but she argues that she will eat better once the tube is out. I feel very caught in the middle of this argument and right now have 2 out the other people involved mad at me. Just looking for advice. She is soon facing radiation treatments and that doctor today told us that the tube she has now may act as more of an irritant once treatment is started and he prefers a Peg tube if she needs anything.

You are now put in a bad position by a lazy doctor. A doctor should be removing your sisters feeding tube. I cant believe he gave you scissors and told you to do it. This is something that should be done in a sterile environment by a medical professional. I have never heard of anything like this before. If your sister is going to be having rads soon then why not leave the tube in place. After what she has been thru it is very likely she will need the tube to help her get thru rads.

Does your sister have a nasal tube? Maybe that's why the doctor said it may be more of an irritant when treatments starts, and would rather put a peg tube if she needs anything?

I think that your sister will definitely need a PEG tube.
Learning to swallow after a total Glossectomy requires the help of a Speech/swallow therapist plus plenty of practice.
Going through radiation is going to make this very difficult for her. She should still be able to swallow but I don't think she will be able to take in enough calories. Remember that many people who do still have a tongue need a PEG to maintain their caloric intake.
My Kris still has his PEG 21 months post his total Glossectomy even though he has not used it for 18 months.
I would be challenging the Dr on this. Yes, the Naso Gastric tube should come out, but I think only when they have placed a PEG. I don't think your sister will get through this without one.
Thank goodness she has you in her corner.
Tammy

Sorry if I missed seeing the NG tube in your signature. Now I understand why the doc allowed you to remove it. A NG tube is alot different than a regular surgically placed feeding tube. I agree with the other members about needing a regular peg tube for when rads begins.

Yup.. an NG is just a tug... how is she doing otherwise?

I'm surprised that the doctors went with the NG tube instead of a PEG. Given the size of the tumor I'm sure they had to have some kind of ideas of following up with radiation treatments. I had a PEG in from the surgery until about 2 weeks after radiation treatments ended. It was an annoyance having it there since I wasn't using it at all. Then I got to that last week of treatment and was very glad to have it. Anything other than water was unbearable on the mouth sores. I'm sure the NG tube is just as annoying, and with radiation it may become downright painful. I would definitely talk to docs about getting a PEG though. Even if it's just to throw down some extra calories while giving the tongue a break.

I think the thing is they didn't know the extent of the surgery - and tumor. I had an NG placed. There is always the hope that by doing this surgery where will be no need for follow up treatment. She was only to lose half, but they discovered after going in that it was more involved. Often they'd rather do less - in terms of invasive procedures - than more. Hugs.