I am 52 y/o and two years out from bilateral radical neck dissection, left floor of mouth reconstruction and full dose chemoradiation for stage IV oral squamous (P16+). I am struggling terribly with wicked, 10/10 neuropathic pain in the neck and shoulders from nerves that were damaged in surgery, irradiated and now fibrosed: a trifecta, the perfect storm for nerve destruction, absolute screaming pain 24/7. I have gone to best pain management teams available in my area. It's just down to finding the right drug combination to optimize relief, but nothing really works to remove the pain. I will live with this the rest of my life (however long that is). I am not thriving, just surviving. I cannot work or do most of what I could once do, (swim, run, bike, even reading a book for 20 min is difficult) ...whew, Is anybody else out there having as much pain as me?

Hi Bikedoc - I just sent you a PM about this.

Welcome to OCF! Im so sorry to read about your continual pain. Nobody should ever have to be in pain like this. Gabapentin works very well on nerve pain. It also comes in pill or liquid form for people who have swallowing problems.

Sorry to hear you are suffering, bikedoc. There's many reasons, but at 2 years out, it sure shouldn't be that bad. I have a hundred or two ideas, if you are interested. It would require getting back into the activities you mentioned.

I'm sorry for you troubles, Bikedoc. I see you had bilateral radical neck dissections, and can relate to the neck/shoulder issues with my own issues from my 5 neck dissections, several were radical, and 5 radiation treatments to the same side of neck. I don't know if your trapezoid muscle atrophied yet, mine did, and basically disappeared overnight, but was fine for several years since 2011. I believe that may be due to the neck muscle, sternocleidomadtoid, and spinal assessory nerve being removed. I also have trouble keeping my head up after standing several minutes, aka drop head from my diagnosis, and feel the pulling on my shoulder, neck, back the longer I stand, and need to sit down with back/neck support. I don't have the constant pain you describe, more soreness, weakness, although the brachial plexopathy with arm paralysis, from radiation nerve damage, started about 10 months ago, which caused severe pain, and had to take Oxycodone, gabapentin, and use Voltaren Gel to the shoulder. On my own, I used a heating pad, and tiger balm. They worked for the pain, but still have numbness, and just take the gabapentin for maintenance, but much less than they want me too though, which also helps with the neuropathy.

I started PT, but had to stop due to other ongoing medical issues. The neurologist doesn't think the arm will regain movement like before, but may help with other muscles for support. Also, I had the nerve tests, EMG, EEG, performed by the neurologists to identity the problems, and had an MRI to rule out a recurrence. I have to start PT again when I have a chance, and want to rejoin the Y, as I too can't do the things I did before, and was an avid gym rat most my life.

The sternocleidomastoid mastoid (that survives the dissection) usually atrophies first. This is how you rotate the head. Next is the other muscles in the neck, the semispinalis capitus that is used to pull the head backwards, along with the longissmus. These are rarely felt as they weaken, other than a good "burn" that is constant. The trapezius lasts a bit longer because it is bigger. The levitor scapulae goes and that further compromises the ability to lift the arm to the side as the trapezius hands the motion over the scapular rotation muscles.

If all the small neck muscles in the back towards the side of the base of the skull are always burning, that same fibrosis process is slowing down or impeding the flow of the vertebral artery that supplies the spine and back. With reduced mobility and activity, the main back muscles that keep us standing, the erector spinae start weakening. If ab work has been done in the past, they contract as the sternocleidomastoid muscle does and together they draw our chin and shoulders in, which further strains the erector spinae muscles, which burn horrifficly as they atrophy.

The stages of muscle atrophy are the key. First, is the random spasms/cramps that appear out of nowhere, with adequate hydration/electrolytes. Then spasticity starts setting in as the muscles maintain their contracted state. The neurological system will start sending signals to figure out what is not working. They are felt as little twitches (fasciculations) or when severe, as ants crawling under the skin. They can be very light or as things worsen, become big jerks (dystonia). During this stage, sporadic numbness is felt, at times. The big pain events begin after the spasticity until the muscle has nomfeeling left and then gets bad as the muscle turns to cord.

As the erector spinae muscles weaken, the upper back has to support the entire spine and weakens, too.

I have been told by many doctors to ride it out and not push things but I have proven them wrong. Even corded muscles can be revived. My sternocleidomastoid muscle was nothing but strands, much like tendons. I have a huge mass on the worst side that has been continually growing for 2 years. My romboids were completely gone as was my left trapezius. I have regained a couple of inches of romboid and significant return on the left trapezius, considering where it was.

I have used some intense methods and techniques to try and regain about 60% of the lost muscles. I have found, even with muscles missing, I can build surrounding muscles enough to restore certain ranges of motion and functionality. In 24 months I went from a cumulative 500 lbs in a workout to about 90,000 lbs after a 20 mile bike ride. I have been able to duplicate the results with a stroke recovery patient and someone that was paralyzed for a year. Much of what I do goes against everything I learned about working out.

Not many doctors understand what is going on after radiation. Even the Neuromuscular Department Chair at the university hospital where I was treated doesn't fully understand how I was able to do this. I have consulted with the Head and Neck Rad doctor here to try and prevent the most painful part of this, from about year 2-6 for the ones really suffering intensely.

The radical neck dissection, RND, removes the sternocleidomadtoid muscle, the Spinal Assessory nerve, and the internal jugular vein. The modified radical neck dissection, MRND, removes the same lymph nodes, but preserves one or more of the non lymphatic structures, SCM, SAN, IJV. Seems like those with MRND preservation recover better with some of resulting surgery side effects than a RND that has all removed.

My apologies, Paul. I sometimes forget we are all treated different and I was only addressing the radiation part. Good points.

No problem, it wasn't as much as that, but was just adding to the post before it became defunct. Such conversation prompted me to call about PT for myself today, and will start on Friday.

Good luck with the PT!