My husband still has his feeding tube and only eats 1-2 cups of pureed/pudding consistency food at night. If any chucks, he is not able to swallow it. Has done barium swallow test under x-ray which shows aspiration. Epiglottis does not close all the way. Did VitalStim and does daily exercises. He wants to know if others have tried any other treatments? He also did Hyperbaric oxygen to close the open jaw wound. He does still see his ENT and chemo doc. Who can he see to tell him if his is a permanent problem. After a year that is my fear and if that is the case we need to know that so we can move on and deal with it. Holidays are around the corner yet again and this will be another Holiday season without eating for him. Very depression.

Hi Jonelle:
When I see a post with zero responses I feel I must write something. Here is a person asking for help, and none has arrived. That condition can't be allowed to exist.

I don't know anything about your husband's medical problem. I wish I did. But, what I can do is tell you to hang in there, the person or persons who do know about it maybe just aren't online right now. They will be later, and they will respond, that's how caring and involved these family members are.

Sometimes I'm not the most patient person on the planet. I get told a lot, go home, sit tight, wait for the call.

So, sit tight Jonelle, the cavalry is on the way.

Tony

I had swallow therapy as well. I "failed" my exit test but it was too expensive to go another round. I remember one day saying to myself "if it never gets better than this, what are you going to do?" So I tested the waters and made a mental note of what I could not eat at all, what I could eat with no problem and what was doable with a lot of "work". I still venture a bit often with unpleasant result but every now and then I find a new favorite. My swallowing HAS gotten better so be encouraged!

Before cancer my #1, go to, favorite food was pecan pie. I might be able to fight through a piece now but the flavor is just gone. Not worth the effort. I did mourn that some but decided to go find a new #1. Don't give up. Celebrate every single step forward you take.

Good luck!

Your husband still has about another year of recovering before I would rule out being able to eat again.

I can sympathize with what you and your husband go thru. Every day I face the same battle. My eating is severely limited as well. I use a feeding tube every night to help to balance my nutrition and eat 4 to 6 smooth peach yogurt every single day. There are only a few other things I can manage to eat like cheesecake, chicken soup broth, mashed potatoes, sweet potatoes and applesauce. I will choke on any piece of food I attempt that is the size of a grain of cooked rice.

On the down side, I have known 2 OC patients who were unable to eat anything at all, not even a sip of water. Both patients lives full and happy lives. My friend continues to work and go about doing everything anyone else does even going out to eat. She will discretely do a feeding while everyone is eating their food. She enjoys being with the people she is with and makes the most out of every day. My other friend would do the same thing. Sadly he passed away earlier this year. His screen name here was Charm. If you read his posts, he was a much loved OCF member. By knowing these 2 people and seeing how they overcame their shortcomings, I can honestly tell you that it is possible to have a great life even if unable to eat like everyone else does.

I hope your husband will make some improvements and relearn how to eat again without aspirating. Maybe a Speech pathologist could help work with him, or possibly a physical therapist. You may have to do quite alot of looking to find someone experienced with oral cancer patients and familiar with this situation. Not all professionals will be able to help but I bet there is someone out there who can.

Best wishes!

Ho Jonelle,
Yeah, eating problems stink! It can be a real roller coaster, good days and bad days. I use to love to eat and still do, but it is some what of a job now, I have to work hard to eat. I also use to love to talk when i eat, not so anymore. I can either talk or eat, not both. I guess it is impolite to talk with food in your mouth anyway. Like so many others, your husband will have to deal with this new way of eating. Personally i think it is tough and does bothers me quite a bit, especially on social times. My friends are very supportive, never the less it still stinks! So I do have a mental list of what I can eat, at home or at a restaurant, and try to take each meal as a new adventure.



So I will leave you with a joke. All my guy friends think it is funny, my wife and daughters just roll their eyes. I aspirate all the time,until recently when I started to drink thickened drinks. So if I ate a hamburger, I would cough and always have hamburger coming out my nose! so things have been better over last month and last week I did eat a hamburger with no ham-buggers! ha ha get it!!!

Anyway, we all must go step by step and adjust to this new normal! I hope your husband gets a bit better...... step by step

Tell him no Ham-buggers!

Steve

Jonelle, I know this is a difficult problem for you both.
But if his Epiglottis does not close he will aspirate into his lungs. A not pleasant experience with lots of coughing. The lungs are not keen on either food or fluid.
Surely his medical team have discussed this with you both and referred him to someone who can help. I think you need to make some noise about this. Maybe your medical team aren't too bothered as it doesn't affect them.
I don't know if surgery would help but you do need a referral to someone with expertise in this problem.
I also want to say that if, and it's a big if, this is permanent , there are many others who do live life without " normal " eating. We are one of them.
Anyway, make some noise and demand answers. There is a long way to go before giving up. Best of luck,
Tammy

Hi Jonelle and everyone else.

First thing I want to say is "yes", I agree with Tammy above. Make sure that he is getting this specific problem addressed. He can't be the only one with this problem.

Also too, those of us who have not been able to eat via mouth/throat route and use the peg tube instead... kudos to you. Fight for your life, and win in all cases. We have that choice and having a strong attitude to live is crucial to a happy life.

Xantippi here, and happy to say that I going into my first year since my oral surgery. That big surgery was done in March of 2013 at UCSF in San Francisco. So happy that they were such great doctors. Was a 13 hour surgery. !!!

My salivary glands, a lot of the bottom of my mouth and my tongue were all removed and then rebuilt. Tongue was rebuilt with flesh, muscle and vein from my left forearm at my wrist.

I never had a stomach plug (eating tube) installed, but did go home from the hospital with my feeding line inserted thru my nose in tact. I was fed by my partner this way for perhaps 3 to 4 weeks after my return home. I was learning how to eat during that time, but I could not consume enough food thru my mouth to keep me alive.

But little by little I was able to eat soft, wet foods with little or no real chewing needed. Apple sauce was a staple... Chicken noodle soup... the noodles would just slide down my throat. I had to remove the pieces of chicken tho... I would choke on those. And of course a 6pk of Ensure every day or two.

Actually... I like the CVS store brand liquid nutrition best because it is the only liquid nutrition that comes in a can rather than in a plastic container. Who needs BPE at this time in my life? Right...? Aaaand... it is much less expensive. Often on sale... 3-6pks for the price of two... or buy one and get one free. Can't beat that!!!
!

After a few months of recovery it was time for Radiation Therapy!!! O M G !!! I had 35 sessions and believe me when I say I really thought I would die before that therapy was completed.

After my first session I had thrush! Immediately I began to suffer unbelievable pain. Day after day the treatment left me with impossible side effects until finally I could no longer eat anything. My nose feeding tube was long gone... and my radiation doctor and the "team" were cheering me on but I was vomiting all day every day. Day and night I suffered. Medication to help with the nausea didn't work for me... My pain medications couldn't go down and for what ever reason, the doctor did not think it was necessary for me to have a feeding tube inserted into my stomach. That peg feeding tube thing.

I went from approx. 175#'s at time of surgery to 105#'s by the time I actually started eating enough to gain weight. I lost 70 #'s over a period of 8 months.

While I was undergoing radiation therapy... about half way thru, it was discovered that I had lung cancer. This was a tumor in my right lung in the top chamber, caused by smoking. I had quit smoking about 4 years earlier, but too late to keep me from getting cancer. It was not at all the same cancer I had in my mouth. Lucky me...!

My doctors decided that the tumor could be successfully removed... so in Oct 2013 I had that surgery.

The whole time I was in the hospital I could not eat. I couldn't even drink Ensure... which is normally a staple in my everyday diet. Nothing went down my throat except water. Everything else came back up. I could not keep anything down.

That was in early October of last year. Today is Jan 20, 2014 and I am just finishing lunch. Everything I eat is soft and wet... like beefaroni (my favorite)... spaghettio's... another favorite... macaroni & cheese... oatmeal with maple syrup and lots of organic milk... yum!!!

I can now eat steamed spinach and poached eggs... I like everything with slices of sharp cheddar cheese melted on top via my microwave oven.

I do cough LOTS and yes, it's eating ONLY. No talking and eating at the same time. I almost choked to death last week when my partner and I were watching "Big Bang Theory" while we were eating dinner. I laughed so hard the food went down my windpipe and I could NOT get it out of my lungs. I am tall and very very thin, my partner is very short and "round"... she had to stand on our bed to try and give me the Heimlich Maneuver, but it didn't work. I just coughed and coughed for hours... no lie. I finally was able to cough the bit of food up and out of my lungs. I was about to call 911...! It was a serious incident.

After my lung surgery, my doctor and the nurses at the hospital were very adamant about my not aspirating food or drinks. I have had pneumonia often in my life, but I was told that I can no longer afford to become that ill... or to have food in my lungs.

So now when it is time to eat, I eat. And nothing else. No TV, no jabbering from my beloved... no cooing at any of our many kitties... nothing but eating slowly and calmly.

Week by week I am able to eat a larger variety of foods. I take each new food item slowly... I try to chew as much as possible and then when I swallow about half the time I'm good and the food goes down... and then the other half of the time, no matter how much I chew... that thing just will not go down.

So I discreetly remove the item from my mouth with paper napkin and move on to something else on my plate.

I can't eat potatoes mashed or otherwise. I have no salivary glands, so food tastes completely different now... unfortunately... and I have no way to break down the foods in my mouth. Sipping water as I am chewing helps a great deal... but very wet foods are really the key to my success.

Anything in lots of sauce, gravies, and the like. Most meat I can not eat regardless of the gravy... so I try to get my protein by eating eggs, beans... not so much. Beans, breads and potatoes turn into a paste (in my mouth) that I can not easily swallow. Strange, right?

Rice is out of the question as it feels that I am trying to swallow small pebbles. Terrible as I used to love brown rice.

Anyway, what I am trying to say is that months ago I thought I was really on the road to death... and I could not even think of eating anymore.

Today my range of edible foods grows by the week. I surprise myself anymore with the wide range of foods that I can eat and have learned to love. I mean... BEEFARONI? Really? Please.

I used to be a "foodie" and I would cook up a storm. I used to bake every week. I could have sold my baked goods but I am not motivated to work that hard... I was motivated to eat delicious foods that I could not find in restaurants.

NOW... it's Beefaroni... poached eggs over steamed spinach topped with slices of cheddar cheese... yum!!! I am alive, I have put on about 12 - 15 #'s in a about two month's time...a good rate and always going UP...!

I have a PET/CT Scan coming up real soon here... cross fingers that all is well. I feel great. I still sleep lots... hours at night and a nap during the day, every day.

But I am getting better. Day by day. Please encourage your husband, be cheerful... be happy in your own heart. Celebrate that he is alive and that you are able to cook for him... or at least prepare food items for him... knowing full well that with every day he eats and drinks what you bring him, he is getting stronger.

As long as he keeps putting one foot in front of the other and one more bite or swallow down his throat... cross fingers... send up a prayer of gratitude, what ever it is you do for spiritual support... know that he will be better.

My heart goes out to you... please do advocate for him regarding what Tammy said (above) because she is 100% correct. In the meantime stay positive and know we are here to help support you.

Best to you both and all of us in 2014. !!!