Pain after neck dissection

Possibly a description of the pain and the site of the pain may help identify any similarities with other "dissectees".

I have had 2 dissections.  In both cases I found the main pain subsided fairly quickly.  A lot will probably depend on what your surgeon had to do to muscles and nerves on the way in.  I may have been lucky, although I did have residual after effects from nerve damage for around 18 months until one day I realised that I was back to "normal".  I still do get painful cramps in my neck and it is occasionally sore, but nothing of that is really life limiting.

Hi Peter , I’ve had 2 second one 28th march , swelling has gone down but pain in neck and shoulder is bad am still on morphine and worried about taking it so long ! Keep getting spasms through neck and face and shoulders. Also am waiting for radiotherapy appt any idea how long after op it usually is ? 

Regards 

debb 

Hi Debb

I can't answer on the RT appointment as I "only" had surgery.  I would have thought that you should be on that pathway by now some 8 weeks after surgery.  I'd go back to the hospital and ask.

I was certainly off painkillers very quickly after surgery.  Definitely the heavyweight painkillers were gone by the time the stitches came out.

I would guess that the shoulder pain is from a disturbance of the Accessory nerve.  This controls the shoulder movement and even if not cut it can get bruised as they move it and takes some time to settle down.  The spasms sounds a bit like my cramps.  Not really painful but everything tightens up and it can be disconcerting.

I would suggest 2 things. 

Firstly talk to your team about this.  Find out what they actually did in terms of nerve damage.  There are a lot of nerves that are in that area - some affect the face and some the arm and chest.  For example, I have little sensation in my right chest and what I do have feels very strange; originally it felt like sunburn, but now it is just "strange".  From that you will hopefully get some answers about long term side effects.

The second is speak to your GP about physio.  I certainly found that helped me post op.  There was no real immediate improvement, but I combined the exercises into daily life and over time things did get better.

Hi, I've just joined this group hoping to find anything I can about pain after neck dissection. My dad had surgery 6 weeks ago and is in agony. He's also on morphine (dosage increased twice) but it really isn't easing the pain.

If you don't mind me asking, are you able to offer any advice?

Hi Kelly

Over time I have had 2 neck dissections and the same as Peter found that the pain resolved very quickly and then was just uncomfortable, occasional cramps that resolved and some altered sensation. Nothing that I can't live with quite easily. I was never in agony and never needed strong pain killers such as morphine. Definitely ask your surgeon/ medical team what is going on. You might have to advocate for your dad as he is probably in no state to be able to do this for himself at the moment. Ring the consultant's room and get an urgent review. At the very least the medical team should be able to explain why your dad is in so much pain.

I do hope there can be a resolution soon.

Lyn

Hi Kelly, sorry your Dad is in so much pain, I read your post and felt I just had to reply just in case I was any help!

I had a bilateral neck and chest dissections and total thyroidectomy. I was in an incredible amount of pain and took morphine, for about 5 weeks, then kept up codeine and paracetamol. I'm 9 weeks now and still on paracetamol and the pain still gets bad but at last I can say I'm doing better now. Starting to get arm movement back and neck movement but the pain is still there.

I spoke to my team all along and they were fab and kept reassuring me everybody's operation is different and we all heal differently, so I was to try not to get frustrated with myself when reading others have got over their ops in a few weeks!! I do physio now although there was a long wait for that but to be honest like your dad I probably would've been in too much pain earlier on. 

Never thought I'd be in a position to write encouragement as it has felt so bad but that just goes to prove it does improve slowly even though there are residual nerve complications to be dealt with day by day.

As others have said keep in contact with your team too they know your Dad's circumstances exactly and will be able to help and advise. Hope that gives you both some reassurance anyway x

Hi, thank you both so much for sharing and the advice. I definitley think something isnt right, he's in constant pain. Hes not sleeping properly due to the pain and relying on cat naps after his medication. Hes living off 4 fortisips a day. Theres no way hed be capable of any physio yet, he can barely sit or stand.

He doesnt want to be pushy with the hospital and i think he assumes this to be normal recovery but has agreed for us to contact the consultant monday. As its the weekend and junior doctors are on strike he doesnt think he'll get anywhere until then.

I think im most concerned because he broke 9 ribs once and managed with paracetemol, same when he broke his collar bone and none of that compares to this pain. 

I just find it strange that such strong medications arent easing it and the GP hasnt flagged it to be a concern?!

Again thank you, i appreciate you taking the time to assist xx

Hi Kelly, me again. I was talking to my daughter about how my heart went out to you and your Dad and she wanted to reply to you too to try and give some support as she's going through it with me and has been a tower of strength to me. So here's her reply....

Hi Kelly,

I am 19 and can empathise with the pain of watching your parent in that situation and feeling helpless. I would agree that it doesnt seem right for your father with his high pain tolerance to be in this much pain 6 weeks post op, however it may be down to the extensiveness of his surgery. It is also very different due to the amount of nerves and tissues that are affected with a neck dissection. Mum was also unable to swallow properly for at least the first few weeks, and it can be very upsetting to see that. Do you think he would he be able to swallow protein shakes, smoothies, or blended meals so that he is receiving more nourishment? Ice cream seemed to be the choice in our house, anything he can get down will help, mum didnt start improving until she was able to eat a bit more. Do you know what type of thyroid cancer he has? Mum had medullary so we know less about the other types. Is he taking his thyroxine everyday at the same time? It must be taken 1 hour before anything else (fortisips) enters his stomach so it is properly absorbed. Apologies if I’m saying things that are common knowledge for you but just wanting to check. Do you have a number to a macmillan nurse, or a direct number to the ward he stayed in/ consultant’s number, it would be best to contact them straight away so they can give you advice. In this much pain, he has a right to be pushy 

Thank you so much. Your daughter sounds like an incredible person, im sure you are very proud. Im sorry that you've all been through this.

My dad has throat cancer, the op was 'right neck dissection level 11 -IV'. All we really know is that he had lymphs removed which were very close to the jugular and bigger than expected. He was in pain prior to the op in the same places but it was intensified following surgery.

He was having bits of soft food like egg and mash. Icecream was a go to, but his appetite seems to be decreasing, hence the introduction of fortisips. Its like hes going backwards with food and pain increasing.

He had an MRI friday so hopefully that will tell us more soon.

He literally sits in his chair with head in hands then transfers to bed. Hes on morphine oral solution 10mg and zomorph 10mg

Hes in a bad way today after very little sleep but refuses for us to contact the hospital due to it being weekend and junior strikes.  Hes agreed to phone Monday so we'll be straight on it.

Thank you for taking time out to offer support :-)

I'm so sorry to hear how much pain he's in, it must be awful for you both. I'd love to give you further reassurances but they'd only be based on my personal experience so far, so it's hard to compare (and not always helpful.) 

Hopefully you'll get some advice and support when you ring the consultant Monday and they'll be able to help with your Dad's pain management x