I know that everyone is different, I am just curious though.

I have read on several forums how people are healing so well after surgery and are even starting to eat soft foods.

My mom had her surgery in November and takes nothing orally.

I had a very difficult time swallowing even water for well over a month after treatment and I didn't have surgery, just rad/chemo. I went to a speech therapist for help swallowing. Maybe you should look into that. one thing she showed me was to use thick-it to thicken up water as in it's liquid state it was backing up and going down the wrong way. Still 1 year post tx I can't handle solid food. Others are eating burgers in a few months so, yes, everyone is different.

I do know that they were worried about her aspirating. That confused me in itself, if she were going to aspirate on water wouldnt she aspirate on saliva?

Sorry to hear that your mum has to deal with this.

Your mum should see a Speech Therapist who will check her ability to swallow and will work with her to help her to improve.

As you said yourself everyone is different, and unfortunately your mum has had a full glossectomy. That is a huge operation. To have nearly all, or all of her tongue removed and too try and get food down to swallow is something that she will have to be retrained in doing, starting with tiny baby steps. I know how tough this can be. She no longer has a tongue which does nearly all the work to process and move food.

It is not easy, and she will need professional help to do so. Some of us here started swallowing Food again with help from a therapist.

Please help her to see a therapist so your mum can get some assistance and hopefully start to move forward. She is probably feeling upset and withdrawn. A speech therapist is a really good place to start to get her on the road to recovery.

Best wishes

Karen

I have been told recently by both a speech therapist and my surgeon, Dr Haakenslash, that I may be dependent on my PEG for nutrition indefinitely, depending on what everything looks like when the area is healed and the swelling goes down. It is all healing very slowly. Very glad I insisted on the 20 French PEG prior to my most recent surgery!

The basic problem is that the flap replacing the total glossectomy is merely filler and has no nerves or muscular movement (except for the tiny portion of original tongue left remaining), so it can't assist in the swallowing process. Here's an animation showing that:

http://hopkins-gi.org/multimedia/database/intro_250_Swallow.swf

Click on the 'Play' icon, then on 'Normal Swallow w/explanation'.

In my case, it's even worse because the flap portion in my mouth (aka mobile tongue) died, so I don't even have the filler there.

Well the doctors told us that she would have to depend on the feeding tube indefinitly also. They also told us that she may need to keep the traech, and that has since been removed-so there is still hope! She met with speech therapy both in the hospital and after she was released. She was certain that she was able to move the flap, however they looked inside and told her that she was not moving it.

Has anyone had a video swallow? That is the next step in the speech therapy process. Just curious what that entails.

I had the video swallow. They just give diferent densities of stuff to swallow and watch on screen how it goes down. Kind of cool to watch your inside of your throat work.