Well Anthony,
I had an enormous amount of pain after my RND (rhs).My right shoulder and arm were v painful too The nerves were either damaged or irritated/agitated by the surgery. It lasted months and vastly contributed to a deep(death wish) depression. The radiotherapy was something else to overcome too!- pain and discomfort wise. The morphine patches were effective but left me very dozy and nauseous.
The morphine related constipation had me crying on the loo!!
Long story short - nearly 5 years on - I suffer a lot of discomfort from time to time but so what! I am here for a long time to come. I get on with a really normal life now - and to be honest that is all I want.
cheers Tony K

I had stage IV head and neck cancer. 3 all day chemos and 35 Radiations. Occult origin.

It's almost 2 years now. Suddenly if I yawn I might lock up totally. The pain is severe, intense, the cramp is worse. It pulls, and you cannot function. I feel like falling on the floor.

The same type of pain but more intense if it's possible, happens if I look down. I have fentynal patches. I dare not look at them, just above my nipples. I have to move them I think. That pain/cramp can put you into screaming mode. OMG no one should have that.

I'm so hoping it might go away. For now I do not look down, and I do not yawn.

Well done John,
2 years and many more to come. The radiated area can be v close (or include) the top of the spine and effect the nerves there. When you move your head down it "shocks" the nerves so you feel an uncomfortable feeling down to your legs.It really worried me til my rt consultant explained it. It went away after a few months after my RT. It's called l'hermittes sign/syndrome.
I get the odd painful spasm in the neck as I yawn or physically exert that area.
Your symptoms seem far worse. It certainly should ease over time.
I hated fentanyl patches. Made me feel nauseous and dozy.And as for the constipation!! I preferred to feel the pain!

You've done well -no surgery side effects. Lots of life to look forward to.
Good luck Tony K

This message has been edited. Last edited by: tonyk,

Hi Tony and John

I have L'hermittes syndrome, very weird - but not exactly pain, more noticable when I exercise or look down. I test if I've still got it by looking down! Noticed it about a couple of months post treatment, and now I'm just over a year post treatment but it's still there. I thought it was almost gone, but I've recently tried to return to running, but various bits of me refused to work well (think it's more of an age thing than a treatment thing), and the l'hermittes came back worse, so I gave up!!!
John - I think you should tell your consultant about the l'hermittes, as it shouldn't hurt, just sort of buzz/vibrate.
Good luck!
Vicky