I'm helping my friend who doesn't speak English. She is 34 years old, had a very serious surgery on her tongue 2/3 of her tongue was removed) and now she is going through radiation treatment. Here are her questions :
Every time when she drinks water after swallowing little part of water is staying in mouth and she cannot swallow it and she has to just spit it up.
Why is it?
Is it better to learn how to eat by mouth when tubes are still going from nose to the stomach and then remove the tubes?
Is it OK to have the tongue sideways to eat by mouth?
Is the tongue changed and become more flat and flexible, increased size after years?
What kind tubes are better to have? What kind materials it was made of and diameter? How often do you change your tubes? Can it cost any problems with his stomach, gullet, thought, bedsores, infection? Is it dangerous to use tubes for a long time?

Lena

Sorry to hear you friend is having to go through this. Your friend needs to speak to a professional about her swallowing. The hospital that she was treated at should direct her to a speech therapist.

They will supervise her ability to swallow, and they might give her a "swallowing test".

What one person does IS NOT suitable to the next person. She could cause more damage by not following advice from a professional person. They will also give her correct information regarding her feeding tube.

Contacting the hospital for a referral to a speech therapist would DEFINITELY be the best way to go.

Does her hospital have interpreters? They have them at the ones that I have attended.

Karen

Thank you, Karen!
Unfortunately, my friend is having treatment in Kazan and Yoshkar-Ola , Russia and they didn't offer any of rehabilitation therapy. Here her original diagnose : T3NxMO. It is very difficult, they only say: "You have to learn how to eat", but didn't say how. I guess they just don't know how to help people with tongue cancer like my friend. She needs help so much. Since her surgery was on July 3 2009 she learn how to speak but eating problems make her very unhappy. So I will appreciate any good swallow exercises or just suggestions for her. Thank you again!

Lena

It would be very irresponsible of me not to say that your friend really needs to try to get an appointment with someone who is experienced and educated as a therapist at the hospital that she was treated or alternatively at another hospital where they have someone who is trained as a therapist.

Swallowing can be a very difficult process, there are so many muscles and also nerves involved, and if not done correctly fluid could end up in her airways/lungs instead of her stomach, which could cause choking or pneumonia.

I certainly do not want to alarm you, but that is why it is so important that she is supervised.

Is there a nurse or a local doctor who can help?

Karen

Tell her to practice swallowing as much as possible. I did this right after surgery and kept it up throught the process, I could even swallow pills within a few hours, but with a degree of difficulty. tell her anything that goes in her mouth that is something that needs swallowed, to jus go for it no matter the pain or cost to her throat. It's just like working out an injury by working thru it. It's like the little train that could. I know I can, I know I can, I know I can and soon she can.

Karen! I told my friend our advise and as soon as she can we will try for her to make an appointment here in USA with a good doctor. But for right now professional therapy is not possible, she asked many doctors but they don't have the therapy.

Thank you for respond and advices! She is trying and she is making some progress. I hope very soon she can start to swallow more and more. She is afraid to remove her tubes from mouth to stomach till she learn how to eat even her doctors tell her that she doesn't need tubes any more. She is afraid to lose even more of her body weight.

I am not giving advise here but only telling my situation in case it will help you .
I had some of my tongue removed; positive nodes taken out of the neck and then chemoradiation; which ended 07/09/09.

I had a stomach tube put in because it was too painful to eat and the chemorads made ensure taste horrible. Its about 0.5 cm diameter. After treatment at first I could not even swallow my spit. Then I could sip small amounts of clear liquid. I saw a speech therapist who gave me tongue exercises. My tongue is partly sidways but not totally sideways. After no improvement in swallowing in a month the therapist did a barium swallow study and concluded that my upper esophageal sphincter was not opening: this is pulled open by the adams apple when one swallows. She gave me exercises for this and told me to try swallowing soft moist foods and cream soups. Her suggestion was based on the fact that nothing was going down my airway when I swallowed during the study. Its been about a month of this and no great progress yet.

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scc tongue, 2 pos nodes, surgeries 12/08, 5/09, chemorads 6/09

Hello to everyone. I had my tongue surgery this March 2nd, where about 90% of my tongue was removed, replaced with a flap from my front left thigh and permanently anchored to the floor of my mouth. It's now a little over 3 months since completing my chemo (3 sessions, cisplatin) and radiation (30 sessions) therapies and it was just recently that I am able to drink water/liquids from a glass and able to sip through a straw. I am still on PEG and my challenge now is being able to eat solid or even soft food: since my tongue flap is anchored to the floor of my mouth, I could only chew food between my teeth but obviously could not manage to control the movement of food in my mouth. If anyone has the same or very similar tongue flap surgery as I had, I would appreciate any tip you could give on eating solid food. I miss eating. Thank you in advance for your responses.

I had a partial glosectomy on November 11th with a forearm flap reconstruction. I had about 40% of my tongue removed. About how long before I have acheived the best I am going to be regarding my speech and eating. Some story's I read the people seem to have no long lasting effects. My speech is horrible and I can't eat very well at all.I know its only been a month but I guess I would like to have an idea of the length of time it will take to relearn this stuff

Wendys

The answer is "it depends". As you noted, some posters are eating very rapidly, others not. The best thing is to see a speech pathologist/therapist to get the basic exercises:
forceful swallow etc.and then a Modified Barium Swallow test.
Very very few people go as long as I have without being able to eat, but I had surgery on radiated tissue, then even more radiation afterwards. A lot depends on what part of your tongue the surgery involved. Mine was base of tongue which is very bad for relearning swallowing. I would have killed to be at the "can't eat very well" stage after only one month. I am still not there. Both the speech and the eating will get better within the year.
Charm

Hello wendys and JojoFlores,

I had 40% of my tongue removed with no reconstruction. It is what it is. I began eating about two weeks after surgery then I started rad txs and basically was on a liquid diet for 5 or 6 months due to taste and swallowing issues.

I finished my tx 11-4-08 and I just got done eating pretzels dipped in peanut butter with nothing to drink, lol, it wasn't easy but it was very doable; although, I will be getting a tall glass of cold milk not because I have something to wash down but because it just seems logical to drink some milk after having peanut butter. I eat almost anything..always have and always will.

Practice, practice and practice and don't be afraid to try try and try again.

One more thing--it would be easier if you both create a signature (check mine out on the bottom of my response) and when you have a question start your own thread so your concerns and questions do not get lost. With your own thread you will get better undivided attention from a bunch of great people with great advice. And it alleviates someone else's thread from being hijacked.

stay strong

A milkshake might be an easy start when relearning to eat. Yogurt and pudding are also easy. Here is a link to a list of easy food I posted a while back. Hope it helps.

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

I make myself a milkshake every day with Ensure, a bannana and a scoop of ice cream. I also throw a liquid vitamin in the mix and sometimes a couple of spoonfuls of Ovaltine. I found that mashed potatoes kind of stick to my teeth, so haven't had much luck with those. I also have tried thinly sliced chipped ham. It just takes me so long to eat ANYTHING!