Anyone here with Spinal Accessory Nerve injury?
 

Hello!
I have been directed to this forum in the hope that I will find someone with a Spinal Accessory Nerve injury like me... I wouldn't wish this on anyone, but I know there are people here somewhere with the same problem and I would love to talk to someone about it who understands & will have empathy and not pity!
I live in Australia and my injury was a severed spinal accessory nerve, which occurred during a routine 2-pass 16 gauge CERVICAL LYMPH NODE CORE BIOPSY in October 2012.
In January 2013 I had a surgical repair (glue & stitch) of the neuroma which was unsuccessful.
I have CRPS, left shoulder weakness, winging of the left scapular, left arm abduction of only 20-30 degrees, trapezius muscle wastage, head/neck/shoulder/arm nerve pain 24/7, numbness in my left cheek and along left scapular. Also memory loss, slurring of my speech, dizziness, balance issues and vision problems (probably due to all of the pain meds).
Am currently taking 600mg Lyrica, 40+20mg Targin and up to 20mg Oxynorm along with paracetamol per day. Am Also in counselling and taking antidepressants - 50mg Valdoxan.
I have legal representation and am trying so hard to get all of the info I need to provide ready for her. It's proving difficult with memory problems!
I was told by the 3 medico-legal specialists I was sent to that I have a "permanent disability with no chance of recovery".
The last specialist I saw suggested the Eden-Lange Procedure for me and I am only just researching it now - it's all SO scary I don't really know what I'm doing.
Thank you for listening, I really am so emotional to have found you all and I hope that there are others of you like me out there that I can talk with and find out more about your treatments and possible help for myself along the way.
Thank you so much!
Princessmorticia [Sarah]

Spinal Accessory Nerve
 

Sarah,

I also have permanent spinal accessory nerve damage. I will need to have surgery if I want to regain function of my arm. Given how rare the Eden Lange procedure is, I most likely will need to travel to have the surgery. I live in Pittsburgh, Pennsylvania. I need to contact my health insurance provider regarding coverage outside my State.

I'm having arthoscopic surgery on my knee for a torn meniscus (unrelated) this week. Once I recover, I plan to try and locate a surgeon for my shoulder.

I'll write again when I have further information to share.

Hang in there.