My husband had cancer in left jaw. He had reconstructive surgery on 3/12/2009 and then raditation and chemo. He has been on a feeding tube since that date and has not been able to swallow at all He has had (2) dialations and is currently seeing a speech pathologist but nothing seems to be working. I feed him every 2 hours 5 times a day. His left side has been affected and he cannot hold the feeding tube to feed himself. He also is still having trouble spitting up the thick stuff that gags him. He is getting despondent and I don't know what to do to help him.

RJM, I am sorry to read about your husbands problems from having oral cancer. Everyone responds in their own way to medications and their reactions to treatments and their after effects vary. Im very sorry to give you some bad news. Sadly some people lose their ability to swallow and are dependent upon a feeding tube for life. You are doing the right thing by taking him to the speech pathologist.

Im sure you will hear from Charm sometime soon. He is in a similar situation where he is not able to eat or drink anything. I use a feeding tube for about 1/2 of my nutrition as I cannot eat enough to sustain myself. I also use a pump and let the formula slowly run overnight. It is easier for me to do the feedings while I sleep since I cant tolerate the gravity or push methods.

rjm

I have also been unable to swallow at all since March 2009 and have been on a feeding tube exclusively for two years now.
Your husband could ask his SLP about VitalStim therapy - although that did not work for me, it has worked for many others.
I also use a tissue to just reach in my mouth and pull out the thick stuff after a rinse and spit. It helps to "gargle" and then cough it all up.
My wife made me an apron with a slit in the middle and a little strap so it holds up my feeding tube when I use it. You can use velcro to do something similar and he may be able to feed himself with one hand but maybe not.
Last but not least, consider getting a Vitamix (with medical discount) and you can cook your regular meals for yourself, or at least dinner for two, and then put his entire meal into the Vitamix. It will then be able to go down his feeding tube.
I'm down to just breakfast. lunch, snack and dinner feedings (all Jevity 1.5 except for dinner which is the Vitamix)
I'll post more tomorrow when I can think of better suggestions on his attitude and feelings, but there is life with this condition and this addresses the physical issues.
Charm

I'm always compelled to weigh in on these topics since I'm an SLP and gained great insight into swallowing problems as a result of my own treatment.
First off, has he had a modified barium swallow study (MBSS), when and what were the results? The MBSS is THE BEST ASSESSMENT POSSIBLE of swallow function as it allows us to see the muscles of the throat as we swallow - shows us if small amounts of food or fluid have the potential to leak into the lungs (called aspiration) Aspiration is dangerous because it can cause recurrent pneumonias - if the aspiration is especially bad then the prognosis for resumption of oral intake might be poor - if the aspiration is in small amounts then there may be the potential to strengthen those muscles so that his risk is reduced - Vital Stim is a very good tool for strengthening those stubborn throat muscles - however - it's use with head and neck cancer patients is somewhat controversial. I'd explore that more if your husband is a vital stim candidate before he actually begins.
If the problem is that he can't control the food or fluid in his mouth to get it ready to swallow, then oral strengthening and coordination training may be very helpful.
Since he's having trouble spitting then I assume he's having oral strength and coordination issues - depending how much his anatomy was changed by surgery and/or radiation then the oral muscles usually respond well to therapy. If his therapist has recommended oral exercises then he should be doing them several times a day! I got myself a little mirror and did them as I sat or even laid on the couch. Now that I'm up and about, I do them in the car as I'm driving.
Bottom line - his potential to eat again is very much dependent on the results of an MBSS- even if he aspirates he still may have potential - there's a lot that can and should be done for treatment before he accepts that he will never eat again. Be sure your SLP has a good amount of experience treating swallow problems - there's a wide range in clinical skill and it sounds like your husband needs a REALLY good SLP.
Please let me know if you have any questions!
Good luck to you both -I'm hoping for the very best!

Still working on how to word my advice on the feelings challenge but Jennifer is right about getting a MBS. Heck, I've had four already and failed miserably but then no SLP thought I was likely to based on the surgery on already maxed out radiation tissue then more radiation. But I spent a full 18 months of daily exercises trying anyway. It's sort of fun to watch the DVD of my last MBS. The barium goes up and almost makes it, then hides away in the variculae, swirls around & hides but just won't go into the stomach tube, lungs yes, which is bad.
Charm

RJM - I too found the barium swallow tests and concommitant speech and swallow therapy very helpful. I really feel for your husband, and for you. In my case the problem cleared itself up after a few months of exercises. I hope you can get to the same place. Thoughts with you.

david2

I wish I had something to add to the others for you. The barium swallow is a great tool . Good luck to your husband and to his caregiver. Got you in my prayers and thoughts.

RJM

here is a link to a forum I'm on for G tube patients with a post by a patient who also cannot feed himself or hold his tube, the problem your patient faces. They devised a syringe holder that they used to hold their son's syringe while he was being fed. They cut the top off a table lamp and attached a metal ring to the top of the lamp . there are pictures / Hope this helps
BD forum- syringe holder
Charm

Hi Jen, I found your post extremely helpful. Tomorrow I have that barium test you mentioned. I started working with an excellent Physical Therapist last week who has given me tongue strengthening exercises to start with and has had me swallow apple sauce, a thinner orange sauce, water and has felt my throat as I swallow. After tomorrow, we will know more. She doesn't think I have a problem with aspiration. Can't wait for the results! I may come back to you with more questions, if you don't mind. -Michelle

Thanks very much for the link. This looks like something that may work for us.

Take care
RJM