My husband is 5 months out of surgery and 3 months out of TX with a peg. He passed his swallow study in January and the Dr. scoped him and said he should have no problem swallowing foods. Dr. seemed surprised he was not eating soft foods yet. Emmett has tried a teaspoon of yogurt & pudding once since then and gagged until he rinsed it out. He says his tongue can not move the food like it should so it just sits there and he can't swallow it plus it tastes salty and why bother. I want him to keep trying every day so his tongue movement gets stronger. He does drink water and he feels that is enough of an accomplishment for now. He does say he looks forward to eating someday just can't right now. I am worried he is losing ground with being able to eat as things will stiffen up. He can not open his mouth as wide as he could before TX and he admits his tongue feels swollen and not moving as well as it was. Is this a normal reaction for others who have had this tongue surgery? Am I expecting too much to soon? We go back to Mayo next Monday for his check up and I was hoping he would be motivated by the visit to say he was trying to eat at least. Overall he has a positive outlook, is more active recently and feeling stronger but I don't understand his refusal to try food - he does take all his cans no problem.

Karen - It sounds like your husband is making progress, with feeling stronger and it's good that he has a positive outlook, but I know it must be worrisome for you when he refuses to try food. My son did not have a PEG or the exact same experience that Emmett is having - but he had a very difficult time with solid foods. His tongue was swollen, too and had a hard time moving the noodles around from the chicken noodle soup so for a long while he would only sip the broth. I'm sure others here will have some ideas for you more closely related to Emmett's experience. Until you hear from others, there is a thread on this forum on eating and swallowing that has good suggestions on soft foods and how to handle them. Just go to:
http://oralcancersupport.org/forums/ubbthreads.php?ubb=showflat&Number=129307#Post129307
Hope things go very well at the next check-up. Let us know what happens.

A speech pathologist might be able to help in strengthening the muscles. Before Jim's recur he was getting therapy 3 times a week that included electrical stimulation and massage and it was helping strengthen the muscles and his swallowing. He had to rely on gravity but was getting there.

It does sound like Emmett has made some progress. Healing from this takes a very long time. It cant be rushed. Im sure it is difficult for Emmett to use his new tongue and it feels weird to him. Swelling from a serious operation can take a whole year before it finally goes away. If he doesnt stretch his mouth open wide a few times per day and do these exercises daily, he will tighten up and have bigger problems. I have trismus and its not fun! Texture plays a big part in relearning to eat again. Here is a list of easy to eat foods for the beginning eater. Hope he will try some of the things on it. Best of luck with next weeks appointment.

http://oralcancersupport.org/forums/ubbthreads.php?ubb=showflat&Number=94621#Post94621

You didn't say if he has seen a speech pathologist. If he hasn't then he should. A speech pathologist will be able to show him exercises that may be very helpful both for opening his mouth wider and for swallowing.

My other suggestion is to encourage him to try different foods. Everybody is a little different. Some of the foods that were supposed to be easy to swallow weren't easy for me. When pudding just kept sliding around in my mouth going nowhere I had no trouble swallowing poached eggs. As a matter of fact I was surprised that you say he can drink water because water was actually the very last thing that I could swallow without choking. It went everywhere but where it was supposed to.

My doctor telling me that I "should have no problem" did not do me any good when I was choking. I was totally scared out of my mind. That was another thing that the speech pathologist helped me with.

Hi Karen,
I am a speech pathologist and just completed my treatment 6 weeks ago. I strongly encourage (personal/professional bias) your husband to see a speech pathologist who specializes in swallowing problems ASAP- ESPECIALLY since he's already demonstrated good swallow function on an MBS - I had my MBS on on 2/25 and just had my PEG removed on 03/11/11. I made good progress rather quickly but let me tell you that right after my MBS I could barely move a tiny bite of pudding around in my mouth to swallow it - it hurt, felt weird and was uncomfortable - eating was hard work and it was MUCH easier to just take my nutrition from the tube - I know better but I didn't always take my own best advice!
The longer your husband waits the harder it will be for him to resume eating orally - it can be so difficult but once he gets started and pushes himself a little bit more each day I would anticipate that he'll notice progress week by week! I've seen it in my own Pt's and now so vividly in myself. Oral motor (tongue and lip) exercises are also critical to get the strength and coordination back for speech and swallow.
When I started eating again I decided I would start each day with an ensure/ice cream shake - I barely choked the thing down the first day and thought to myself that this was going to be a long hard haul. I don't really know why (Divine intervention?) but every single morning that shake was more and more palatable -and I started adding other food items through out the day, malt-o-meal, mushed banana, yogurt, broths, cream soups, mashed potatoes, mac and cheese - just had some chicken phad thai for dinner. I'll be honest - it doesn't taste as good as it used to and I didn't enjoy it as much as I used to because it was hard work chewing it, moving it around in my mouth and getting it ready to swallow, I didn't even eat 1/4 the portion I used to but I did it! Next time I do it - it'll be easier and taste better because every day gets me closer to my old self. It's too soon after treatment to accept that what I have now is my "new normal" I'm not done getting better yet and neither has your husband - please let me know if you have any questions - I was passionate about getting rid of PEG tubes long before I had my own - now that passion has increased 1000-fold!

I kept my PEG for well over a year after getting my force bars taken off (jaw wired shut after mandiblectomy). It was kind of a crutch for me in a way.

To be honest I think the only reason I ever took it out was because it was hard to feel sexy with it. (I'm wondering if I typed that outloud, I think my inner monologue is malfunctioning!) Anyway, it was very hard for me to eat and I liked to shoot bourbon down it when I felt like I needed a stiff drink so it was hard for me to decide to give it up.

Now it's still hard to eat but I try to eat solids at least once a day however I get most of my nutrition from Ensure Plus and protien powder. I think the only time I actually enjoy eating anymore is when I'm properly motivated, really I have to force myself to do it to keep my energy up. Anyway it's a very conscious decision for me to keep myself nourished because of how much of a pain in the a.. it is, especially to keep the muscle and size I'm at.

I can relate to why he doesn't want to that's for sure.

Eric

Thank you everyone for your posts. Emmett has been going to a speech therapist a couple of times now and he does like going and does do the exercises he's given. He read your posts and agreed he needs to start really trying. It actually seemed to give him some motivation and confidence. Said he has been afraid to try, worried he will choke etc. Your posts have made a difference. Thank you so much.

Yay!
So happy to hear that!

Hi Jennifer!
It was very good for me to read your response since I currently have a feeding tube and rely on it more and more each day. I look at food and just thinking about trying to get it in my mouth and swallow causes me pain. Everything burns and it is so hard to swallow. It is so much easier to use the feeding tube not to mention that I put so many supplements in it that I could never even begin to think about eating! But I will try to start again. thank you! Marianne