Neck dissection problems after radiotherapy

Hi Sue. I found swallowing hard first thing too. I had to triple swallow even tea. I think we get a good deal of lymphodema inside. It does get better but I did work at it. I did my swallow exercises and still do five years later as fibrosis is a life long issue. 
I can’t really help with personal experience on the neck problems you have as I didn’t have a dissection but I would explore getting some decent physio and working hard at it. 
I do have a little stiffness from time to time on the irradiated side but I’m rigorous in exercising it away. It’s hard work but worth it 

Thanks Dani you have really put my mind at rest. Exactly what you have just described I have. I’ve lymphoedema in my neck and I have been doing the exercises like you have put on your blog and they help immensely but in the morning when I have had a long sleep I feel as though someone’s standing on my neck and it’s hard to swallow. What is fibrosis as the consultant never mentioned that? X

Hi Sue the sad thing about it is, after the battering our throat get during treatment, it's not surprising it can't be the same again, although I do think the consultant could have told you in a more understanding way and reassured you that it will improve over time, which it will. Give yourself the time to heal, you will get there.

Ray

Thanks Ray I wasn’t happy with the way the consultant said that sentence and I came away very disheartened x

Hi Sue, I hope I can help from a neck dissection point of view. (I had bilateral dissection.) My neck 17 months later is still tight and stiff. (My swallowing has been affected too). I use a moisturiser twice a day, self massage whilst I'm putting that on and do my stretching exercises, just incorporating them into daily life really. Boy do I feel it if I miss a day!

I've slowly come to accept it won't be the same as it was and it took a while to come to terms with that and adapt. But I've found with acceptance it's helped bring some peace to the process, especially when I wake up and am mentally fighting what's happened. I'm still hoping it will improve with time and I'm sure yours will too. Dani is right, continued Physio is a must. I've sadly had to give up with the NHS physios now and am pillaging my savings for a private one!

I've done a lot of research during my recovery and it seems quite usual after some neck dissections, try not to worry. Your consultant could have been kinder in how he approached this with you though. Hope this is a bit of help and comfort anyway and I wish you well.

Amanda.

Thanks for this advice Amanda, I do keep on top of moisturising and massaging which helps. These comments really help me when I’m feeling alone and feel like hibernating when I can’t eat or touch any drink other than water or tea x

SueEssex said:

What is fibrosis as the consultant never mentioned that? X

It’s basically scarring which tightens everything and makes it stiff 

SueEssex said:

Thanks Ray I wasn’t happy with the way the consultant said that sentence and I came away very disheartened x

I wish consultants wouldn’t use such a broad brush. Yes we are never as we were but most of us do really well and aren’t “scarred“ mentally and physically for life. 
Recovery is tough. We have to work at it and it isn’t easy in the first year. Don’t get disheartened if you have steps backwards. Things do improve.