Pain after ACDF C5/6 with bilateral nerve root compression. How did you get better?

I had a C5/6 ACDF with release of the bilateral compressed nerve roots last month. I was on painkillers a lot for the week post op. I was struck by terrible pain on my day of discharge. I reported it to the nurse who was discharging me. She said “it’s probably just the nerves waking up”. So I left the hospital for Brisbane Airport as I live in Cairns. This all started the day of discharge. I was assisted by wheelchair to the plane and in agony and in tears at times during the flight. 

I’ve lost power in L my arm and have pain down neck and arm; Worse than before the operation. My GP had me get an urgent CT 3 days after discharge and the nerve root on L is still compressed.. I can’t confidently use my left arm without support from my R) arm. What are my options? 

Hi, I am 4 weeks post ACDF C5/6. I was in hospital for a week after operation as I lived rurally and alone. My post op period was going okay until the morning of discharge. That day I woke up in hospital with searing pain down my left arm. I thought that maybe I’d slept in an awkward position (my surgeon didn’t use collars post op). I reported it immediately to nurse who said “it’s probably just the nerves waking up” and continued packing to be discharged. I wasn’t helped by the nursing staff and I think this may have worsened the pain I was already in. I then had to get to the airport and was in tears for most of the two hour flight home. 

I have had a brother helping me out sometimes, because I live alone, I have lifted a few things heavier than recommended and maybe I am overdoing things. Patience is not my virtue!  Anyway, the pain I woke with one week post op has worsened. I am actually worse off on my left side now than I was pre-surgery. I have severe weakness - I have lost at least 50% of the strength in that arm - and have pain and burning along the top of my L) shoulder and into my upper arm.  I can’t confidently use my L) arm without support from my R) arm.  My upper L) arm feels foreign. It also feels like something around my left scapula is out of whack or dislocated. 

I’ve been walking everyday but become fatigued easy and get burning after an hour or so. Ice really helps then, and of course pain killers, but I don’t want to be dependent on drugs.  I also spent a small fortune on massage, chiro, osteo and the rest prior to the surgery. I had hoped surgery would finally give me back my life and the need for massages would disappear. Sadly not. I have had two in the last week and it’s the only thing helping. Prior to surgery, I was unable to work for six months. It now feels like it may be a very long road back, if I get back at all. I just turned 50 last week so this sucks. I am a medical coder and transcription is key to my work so I need to be able to type. 

I consulted with two orthopaedic surgeons and finally my neurosurgeon, before deciding to go ahead with the surgery. I know I couldn’t function before so I’m hoping this is par for the recovery course. Maybe I should be wearing a collar to stop moving too much or should I be doing more exercises!? 

After three days home from hospital, my GP sent me for an urgent CT as the pain was that bad. It showed significant swelling (expected) but also showed “ongoing narrowing of L) neural foramina”. So I read this as nerve root compression on the L). This certainly would explain my pain. But is the nerve still compressed due to swelling or did the surgeon not do what they were supposed to? 

Has anyone else experienced this AND has it got better. Did you do anything that helped it get better? Any advice would be appreciated. Thank you