Day 5 post neck dissection - recommendations?

Hi Rowan, 

I know exactly how you feel as I had the same operation over a year ago now and I remember that tightness, pain, wonky mouth and all . It does come and go for a few weeks and I found it most intense when I lay down to sleep. Take the meds as needed. 

As for exercise, nobody at the hospital suggested anything in particular except for massage with Vitamin E cream and I still do this every single day as still have lymphoedema along the scar. I also stretched my mouth as wide as I could a few times a day.

Your mouth might not open properly for a few weeks yet, hence having to eat pureed foods. It's all normal but will get so much better in time. Just try and open it a tiny bit more each day, it will get there. 

Best wishes

Carolyn 

Hi

I suspect the wonky mouth is as a result of them moving some facial nerves during the dissection.  I did not suffer that side effect, but if it follows the same trajectory as with my accessory nerve bruising then it will correct itself over time.

The neck stiffness and pain is probably due to the healing.  Just keep on top of the pain killers (what a misnomer!)  Hopefully by around day 10 it should be a distant memory.  However if it starts to weep or feel hot or you are in the slightest concerned get a hold of your clinical team for advice.

Hi

the wonky mouth is probably a mandible palsy - that’s what I had. Once I saw the consultant they confirmed they hadn’t cut any nerves.  But nevertheless the nerves get damaged, bruised and swollen. Nerves repair very slowly. I started to get control of my lip back at about 4 weeks - just the slightest movement to start with. My consultant said I could continue to get improvements for up to a year.

I just looked up exercises online - most seem to recommend looking in the mirror while you do them. Pouting, smiling, stretching. 

After about 4 months I started getting very weird tingly sensations in the areas that had been numb - I’ve been told this is the nerves trying to knit back together. 

I had a wonky smile too and if I tried to drink it came pouring out my nose if I drank too fast.  These things completely cleared up within a few months.  I did jaw and neck exercises for many months but now rarely have to do so.

4 years on and my neck still gets stiff, itchy and sore at times and is quite sensitive to the sun.  I just have to accept that suncream, sunhats, snoods etc is part of my new normal. 

Thank you all! 

I know I am just being impatient, some of it is slight panic. 

One of the doctors doing the rounds (who wasn't my designated consultant) asked me to show my tongue that was also operated on and asked me "why are you not opening your mouth" and I hadn't seen myself so I had no idea what he meant. I told him I cannot move my neck and he asked "why?" 

That was quite rude, 0 bedside manners! 

Said something about using a wooden stick on my lip bit never came back to follow up so I was confused. 

I did get neck exercises on a sheet. 

Waking up in the night or mornings are hard because it feels like my skin is breaking apart when I move. Meds help but then it feels all zipped up. 

Thank you for all the reassurance, you have all been so brave.