Still hard to eat one year after

Hi Husband had mandibular and hes treatment ended 15 months ago and he still struggles to eat. He says he has no appetite and he suffers because he just keeps salvating so maybe its the normal i dont know. Wishing you all the best Chris x

ChrisB24 said:

Anything have this problem a year later?

I was OK with food by six months ....appetite, no, but swallowing OK

I do, however, sometimes cough with some foods if I don't concentrate with them. My throat muscles aren't as strong as they were and quite a bit of them were destroyed by the RT so I can aspirate. That is what causes my coughing. 

Is your husband religiously doing his swallow exercises a couple of times a day? I still do mine six years later. My consultant said he was amazed I could swallow so well considering how much of the muscle in the back of my tongue is missing.

I would ask for a swallow test to make sure fibrosis isn't setting in at his next review

Meanwhile....do the exercises

Hi

I am now just shy of 12 months since starting treatment - CRT.  I can eat many foods, but struggle with "solid" meat (like a roast or a steak) and with spicy foods. Soups, pasta, some meat and fish pies, Fish & chips, puddings etc work well for me.  Experiment to find out what works and don't be worried about being healthy!!

I really can't eat a full portion in the timeframe I used to and would prefer kid's sized portions as after a while my throat closes up and goes on strike leading to a choking feeling.  Often when at home I will have half a meal and then a couple of hours later heat it up in the microwave and finish it off.

I find that water is useless as a saliva replacement when eating (my consultant agrees).  For me a warm milky tea or a cappuccino works well.  Also I find a pale ale or IPA style beer is good for washing down food and is often my go to solution if I feel I am choking - just to get some fluid down my throat to move the dried food that is stuck.

It is very difficult to manage food, especially in a social setting, as the pressure to eat is on.  I hope he is brave enough to explain the situation and let others know that he has to go at this own pace.  BTW my wife gets so upset with my eating when I struggle.  It hurts her, even though she know that I am managing it and comfortable with where I am, so I understand where you are coming from.

He hasn’t been doing swallowing exercises, what are some good ones?

Have a look here 

https://www.christie.nhs.uk/media/geckx44b/1109-swallowing-exercises-for-pts-receiving-radiotherapy-to-the-head-and-neck-speech-november-2021.pdf

The tongue press one is good. It really forces you to swallow hard. 

Hi he needs to do the swallow exercises I was given them before treatment started and still do them even at 6 years I will do them forever they are routine now. 
like Dani says he needs to speak with  consultant know in case fibrosis is starting in his neck. I’ve a very small amount I j can manage it it doesn’t affect my life. 
Hazel 

RadioactiveRaz said:

like Dani says he needs to speak with  consultant know in case fibrosis is starting in his neck. I’ve a very small amount I j can manage it it doesn’t affect my life. 

 ChrisB24 

Yes. You can get fibrosis of the swallowing muscles. 

I’ll tell him, right now he’s worried cause his voice sounds different, not clear kind of muffled, of coarse he’s thinking the worse. We’ll go back to ent Monday.

ChrisB24 said:

not clear kind of muffled

The most likely reason for that is lymphodema. I suffered quite a bit for a few weeks, early on. My voice was almost non existent in the mornings. It got better as the day went on. 

My voice varies from week to week.  Often in the morning it is more Charles Aznavour (but does not have any effect on the women in my life )  As Dani says it is almost certainly lymphoedema causing it.  Time and the correct massage exercises will reduce it's effects.