Neck Dissection Neuropathic Pain

Hi Wryneck

I am nearly 3 years past same treatment (base of tongue op, neck dissection + chemoradiation) I also have this weird neurological connectivity between top of my year and my jaw They are kind of wired together  It was very irritating after surgery then it diminished to come back at full speed after covid episode Plus jaw cramps etc even though I exercise a lot

In my case neck collar helps a lot but what really worked is Cymbalta It is an antidepressant, but for some reason it is very effective against myalgias of all sorts Still doing it as it helps me with some other issues that I have as well

Thanks for your reply - really helpful. 

Hi Wryneck

As you probably know I have only had surgery - tonsils (twice), neck dissection (twice) and abandoned partial glossectomy.

Very many years ago I had a major operation on my leg so I was sort of expecting the issues from my neck.

My guess is that the vast majority of what you are experiencing is from the trauma of the dissection.  Even if they only just move a major nerve it is damaged and takes time to recover.  Many of the smaller nerves are just cut and lead to the surface sensations we experience.

With my shoulder it took some 18 months to return to near normality although just recently (now 2 years) it has started to ache in the evening like yours.  As you have realised, physio really does help.

Severe sunburn on my chest is exactly how I described it to my consultant!  It is much better now but still can be discomforting if touched.

There are other "interesting" side effects, but nothing like the pain you are now describing.  It seems that time is the great healer.  I know there are some drugs like gabapentin and pre-gabalin that can help.  My uncle had them when he had a leg amputated.  Not always effective for him, but I suspect our pain is not like phantom leg pain.

Fortunately lymphedema has not really been an issue for me.

Peter,

Thanks for sharing your experience with me. The surgeon has been excellent but i don.tt think they understand just how intrusive the neck, numbness and neuopathic pain is. I think I am accepting that it is early days and I have to let time do its. thing. I am. going to look up cymbalta which has been suggested. I think the pentins come with some really full on side. effects. So. it might be a. toss up. between. amyltriptaline. and. cymbalta.

Im still. wrestling a nit with eating and drinking - producing lots of sweet-sour mucous and choking every now and then (not every time like for the. first. 6. weeks!). I discovered from a video fluorscopy that. something had happened to my epiglottis.   The speech ladies said it was stubby and presumably some of it had been removed. I asked the surgeon and he said no but when he had the video endoscope in he said oh there is a part of your epiglottis missing - about a third of it maybe. Thing is i had a camera down my throat so I couldn't ask why and. afterwards I completely forgot to ask. 

t cannot be that the cancer had spread from my tongue because he would have told me and I certainly would have had. to go forward. for chemo-radiation. So I presume it. was an accident. My second surgery was to obtain a clear posterior margin. i came round from the anaesthetic in, quite literally, screaming. agony. The anaesthetist apologised and said the pain meds had. worn out too soon and that the operation had taken much longer than expected because the surgeon had to go much deeper. No idea what that means, and when I asked the surgeon he didn't. recognise the anaesthetists description. Anyway I guess I will never know but I feel that losing part of my epiglottis presumably meant until I learned how to adapt the. epiglottis was not covering all of my trachea when I swallowed food and would explain why I choked so much, something that didn't happen after the first surgery.