Physio

Hi. No physio for me either. Got a leaflet for exercises and just did them. I don’t have a neck dissection though. 
I still do my exercises five years on and will do forever. 
A little neck fibrosis has suddenly crept in. I was was warned it might. 
You might have to seek a private referral. 

Hello

I only got mild stiffness in my neck, but, as I was warned it might, surgery to remove primary at the back of my tongue and lymph nodes gave me very painful stiffness in my right shoulder and upper arm. I was unable to raise my arm above shoulder height in any direction which made everyday activities such as getting stuff out of cupboards…and even using a hairdryer…very uncomfortable.  My surgeon recommended physiotherapy if this happened.  I self referred to our local physiotherapy service and am delighted to report that with the help of a very patient therapist I have regained full use of my arm.  It took time, but we got there.  I have found our physio services very responsive and would recommend them highly.  Probably worth persevering with yours.  Good luck.

Good evening Toungue123, i would contact one of your team and maybe ask to see a speech and language therapist (SLT) as they helped with tougue exercises after my first operation, i also did excersises that were recommended by my consultant who contacted a physio pn my behalf. Please do not give up as these people will be only to pleased to help, maybe a letter from your GP help . Good luck with your recovery, take care.

                                                                         Chris x

I had similar treatment - with operations on neck and tongue, followed by chemoradiation, which finished in March 2023. Had very limited arm movement after the neck dissection and used a private physio that I already knew. This helped a lot and arm movement is back to normal.

Have had a stiff neck ever since the operation and radiotherapy treatment. I think it’s a combination of lymphoedema and fibrosis. I’ve had sessions at an NHS lymphoedema clinic and I still do regular massage myself, which keeps the lymphoedema under control. On top of that I do the neck stretching exercises that I was given after treatment. It’s all pretty standard and you can get much of the info online. If you can get a physio referral from your GP, I definitely think it would be worthwhile to get you started.

Like you I do yoga and try and adapt poses to stretch my neck as much as possible. You probably already do this - but my favourite is a lying twist with my head turned in the opposite direction to my legs. Really helps me!

Thank you all so much for your replys. It’s so tricky when you feel so alone with this type of cancer and have no idea if you’re doing the right thing. It’s so good to hear the different responses and support. I think I’ll go down the GP route he was very good with me at the start of all of this. Xx

After my second dissection I was having issues lifting.  My GP organised physio after the hospital said there was nothing they could do.  Maybe it was because it was at the height of one of the lockdowns I got "seen" (video link) really quickly.  I only got followed by phone up once or twice, but that was OK as what I really wanted was to know how to do the paper exercises properly.  I incorporated the exercises into daily living and almost forgot I was doing them. After a few months I did pop into the physio department to show them how much improvement they had enabled for me - they were delighted to have the feedback.

Recovery too a long time but after around 18 months I suddenly realised that what I could not do, I now could do.

Doing the yoga and walking is going to do you good.  Any exercise will help recovery and your mental well being.