Hi Everyone! I am here b/c my dad had surgery to remove a 3cm tumor under his tongue back in May...he had a partial glossectomy & resection, all lower teeth removed, mandibulectomy and cervical lymph node removal. I am his primary caregiver. He will be starting radiation soon, as some of the nerve tissue came back positive for cancer, but all tumor borders & lymph nodes were clear. He is still not able to swallow anything, so he is still using his feeding tube for his nutrition. He is very fusterated not being able to swallow this far out (almost 2 months from surgery), and from what we were told the swallowing issues will not be any easier after radiation. When he does try to swallow saliva, he will cough or he says it feels like it gets "stuck" in his throat and will not move down any farther. When we met with the speech therapist last week, she said that it is too soon after surgery to be able to swallow and she is hesitant to have him attempt at swallowing anything b/c he choked when he went in for his barium study, so she wants to focus mainly on speech for now. To me, this kind of doesn�t make sense to me, as he is going for therapy b/c he cannot swallow, so why is this not being focused on at this time? Or are we trying to take things on too fast? Just wanted to get the opinion of some more knowledgeable people, since we are so new at this. How long does it typically take to regain swallowing function? He is getting very fusterated and depressed at not being able to swallow, especially with radiation coming up. Any help or advice would be greatly appreciated. Thanks in advance.

Welcome to the family. I'm sorry you have to be part of the group, but there are a lot of committed members and hopefully, we will be able to help you through your ordeal.

The most important thing that anyone on a feeding tube can do is to do the swallowing exercises that the hospital gives him religiously. The exercises keep the swallowing muscles intact and in working order. My husband was on a feeding tube for two and a half years; when it was finally removed, he was still able to swallow and the speech path gave credit to the fact that John did the exercises everyday.

If your husband is choking, it means that he is aspirating. It is of paramount importance for him to cough it back up. Aspiration pneumonia is dangerous as it can lead to infections in the lungs. You may be right in saying that after radiation swallowing will be even harder. It depends on where the radiation is directed at, scarring and other factors.

I know how frustrating it is for the patient as my husband was feeding tube-dependent for more than two years. However, pushing too hard when the body is not ready can lead to a host of problems. Patience is needed. We are available here to hold your hand and help answer some of your questions.

Welcome to OCF! Im glad you found our site to help you with your father. Stick with us and we will give you both info and support.

Everyone reacts slightly different with procedures, recovery, treatment responses etc. Some patients will bounce right back after such an invasive surgery while others take months to recover. We have seen both happen around here.

The swallowing function is something that can quickly fail. After not being used for a few days/weeks many patients will struggle to swallow again. The muscles simply "forget" how to function normally. To me it sounds like you have a very competent speech therapist working with your father. She did the best thing to test his swallowing ability to see where he was at. The barium swallow test can always be redone to check his capabilities. If he is choking he can get liquids or worse, food in his lungs thru aspirating when trying to swallow. This can cause even bigger problems with infections.

Sounds to me like this will be a long road for everyone. Many patients get frustrated at their view of not recovering fast enough. Many patients will need anxiety meds to get thru their treatments and recovery. Even many caregivers need meds to help them as well. Battling OC is not easy, it can be full of ups and downs with setbacks too.

The best advice I can offer you is to focus on what is controllable... his intake. Every single day he should be taking in at least 2500 calories and 48-64 oz of water. I know it sounds like alot but he needs to rebuild himself from surgery and get ready for rads. During rads he may struggle to take in enough. Glad the feeding tube is already being used. Its a great tool to help make it easier to get thru rads and move on to the recovery phase.

Best wishes with everything!

Thank you both for your reply. Yes, we are learning quickly that this will be a long road with many ups and downs...in a way, I feel that his surgeon did not prepare us for exactly what to expect after surgery-but what is done is done.

The hard thing for my father, I think is that he is a very anxious person to begin with. Add in the limitations of not being able to eat normally and working/doing everyday things w/o getting tired is taking a toll not only physically on him, but mentally as well.

The good thing is that he is making sure he is taking in enough...right now he is up to about 3000-3500 calories/day as he has lost alot of weight in the past month (he is 6'4" and weighs around 145lbs).

He has also had difficulty with the skin graft that they took on his arm to replace tissue/bone in mouth from surgery...he has lost all motor function in that hand so he is going to PT for that...the surgeon says he hasnt ever seen that happen before. He is a machinist for his job, so add that on top of everything else he is very anxious and worried about how everything will turn out.

Not looking forward to the radiation that is ahead, as I know this will be extremely difficult for him due to the nature of his personality...he likes to always be on the go and I know that with radiation it will take its toll on him...he is already pushing his limits right now. The doctor did prescribe him some anti-anxiety medication, he likes to stick with only using that at night to help with sleep and sometimes that doesnt really help much.