Head and neck cancer surgery

Hi GF sorry to hear you’re still in trouble. I’ll tag Peter who has had extensive ND PFJTHS 

If you’ve had your accessory nerve removed you are going to be left with significant impairment and trapezius muscle recovery is unlikely. I hope you can find a work round  and your clinicians can give you something to work on. xx 

Hi Garry

My surgery was not as invasive as yours.  I had 2 neck dissections.  The Accessory nerve was not cut - only disturbed - and like you I had the lymph nodes removed.  I ended up being able to life any weight close to my body, but not able to reach out for a cup of tea at arm's length.  It still took around 18 months before I regained full movement.  Physio definitely helped me.  But time was the great healer.  One day I just realised that I could do it so it was gradual.  That probably does not help with your particular job and I suspect that with removal there is little chance of  the nerves re-routing themselves, but the surgeon may have some bright ideas as there are advances all the time in medicine.

Hi Peter, thanks for your reply it was helpful, I see a trauma and orthopaedic guy on the 9th May, I have been referred by my consultant who done the neck dissection, he thinks it may be a long term problem due to physiotherapy not working, I just want a diagnosis now as to what the problem is actually called

Gary

Hi Gary, GF1 

I know this is an older thread and I hope you don't mind my asking but did you get any help with your trapezius pain?

I too am now 14 months post bilateral neck and chest dissection and although my Spinal Accessory Nerve wasn't removed, it was damaged and I now have constant chronic pain in the upper trapezius area which sounds like yours. As it doesn't seem common to affect this area so long after surgery, I've researched it to death and that's when I discovered the SAN serves the trapezius muscle aswell and then I came across your post. (My actual shoulder function has returned okay, I was warned about that and expected it).

I'm desperately seeking an answer as physio and swimming isn't helping. As soon as I stand or sit unsupported, it's debilitating and depressing. Painkillers haven't touched it. A full length back support off Amazon helps slightly, I guess it takes over the supporting job of the muscles. Surgeon keeps reassuring me he's sure it will improve but in the meantime did you find anything to help please? Did the trauma and orthopaedic team help you?

Hi K9 crazy,

I am now 28 months post surgery, as with you I have lost muscles in my right shoulder area and experience pain in my neck and shoulder area when I try to reach out with my right arm ( wing action)

I tried physio a couple of years ago and could not progress because of the pain,

I then saw an orthopaedic consultant who arranged some nerve conductivity test which confirmed about the nerve damage etc, he then said he could take some muscle from my back area and put it into my shoulder area but this would only make my shoulder look better but it would not take away pain from my neck or shoulder, we decided to leave things as they are. 
I still get pain when I try to reach out with my arm and if I turn onto my right side during sleep.

if I look left or right with my neck I get pain in neck and shoulder so normally turn my torso when turning my head to look left or right 

I am not in constant pain and it is not affecting me enough to take painkillers anymore, I just try to do simple things so I don’t antagonise neck and shoulder.

a bit long winded but I hope you can get something from my reply

good luck

regards Gary

Hi Gary, thank you so much for replying so quickly. Sometimes it's just the act of hearing from someone going through a similar thing that helps.

Interesting about the nerve conductivity test, I'll add that to my questions for the consultant next time, thank you. Yes it's unfortunate that when unsupported it causes me constant pain, so I'll keep pursuing options. My neck is always stiff and horrible too, both sides but I understand and expected that. Hopefully the consultant is correct and it will all slowly improve, I just get frustrated as it's been going on so long and it limits even the most simple tasks. I've gone from running 10K in the past, to now being in pain just sitting doing a jigsaw!! If I hear anyone say again thyroid cancer is a “good” one to get??! ...send them my way, I have discovered a new bluntness!  

Anyway, I'm glad to hear you have found ways of managing yours when it gives you pain and that it doesn't constantly trouble you. I hope things continue to improve for you. I guess that's all we can hope for.

k9crazy said:

If I hear anyone say again thyroid cancer is a “good” one to get??! ...send them my way, I have discovered a new bluntness! 

I’ve just read your profile right through. 
My my! I am lost in admiration for your mental strength. 

That is the battle we fight, isn’t it. Hugs. 

Thank you Dani, you don't know how much that means to me, especially from such a respected and experienced member of the forum. In fact it's reading posts and replies on this forum, showing other's resilience and resourcefulness, that has often given me renewed mental strength to dig in and keep going. Knowing how others are coping through these awful treatments and after effects brings us all together like no other community. Thank you x

Hi I’ve  just read your profile  kudos to you. 
As for thyroid issues hit the next person who says that to you unless they’ve worn our shoes they have no idea. 
My oncologist was on the ball with regard to my possibly having thyroid issues  issues due to radiotherapy and i have a yearly diary note to contact GP I’m no longer under hospital. I always remind people we need yearly bloods and I make sure the nurse at my GP writes T3T4 and tsh on my bloods, Sadly we need to be proactive. 

hugs Hazel