I started having problems with my shoulder starting in approximately in March 2014. I couldn't lift my arm straight out in front of me without pain.
Long story short, I ended up having a tumor based at the brain stem that had wrapped around the accessory nerve. The neurosurgeon said he only saw one end of the nerve and he cut it to remove the rest of the tumor. This was in July 2014. My arm/shoulder seems worse now, very painful. I essentially don't a have an accessory nerve.
I've been doing research and have read some on the Eden Lange Procedure. Has anyone had this procedure done and if so did it help with pain and can you use it more? Is there any functions you lose with this procedure?

Welcome Stang1.

Stang1,

I also have Trapezius Palsy from Spinal Accessory Nerve Damage. I developed pain and difficulty raising my arm immediately following posterior cervical spinal surgery. The Neurosurgeon has referred me to a Neurologist, which I am waiting to see. At this point, I'm not sure what the course of treatment will be.

Are you currently doing physical therapy?

Hi,
yes I went through 6 weeks of PT but it did not help with the pain or weakness at all. They were focusing on strengthening the other muscles in the shoulder area which I think it did but without proper support from the scapula I still have little function. I seem to have good and bad days. Always pain but certain days I can't even hold my arm straight out in front of me.

Thanks Kitt, hoping I get some good information on here.

I recently had an EMG which confirmed damage to my spinal accessory nerve. According to the EMG results, the prognosis is poor the nerve will recover. They plan to repeat the EMG in 3 months and if there is still no nerve activity, I would need to have the Eden Lange procedure to regain use of my shoulder.

Looks like we are in the same boat.

Thanks for the response. Seems like this is an uncommon thing we have. Where did you first hear of the Eden Lange procedure? None of my Dr's have mentioned or heard of this procedure. I found it on my own. I live in the Portland Oregon area and I have made a few phone calls but it looks like I may have to travel. Is there someone in your area that does this? Do you have pain in the shoulder and upper arm area? I have had moderate pain in my shoulder when trying to use it which radiates down my arm.

Yes, all the doctors have indicated this is very rare. I researched what the treatment would be if the spinal accessory nerve does not recover. The Physiatrist mentioned Orthopedics would be involved if my next EMG shows no nerve activity, so I assume it would be the Eden Lange procedure. I live in Pittsburgh, PA. Any movement of my arm causes pain in my shoulder area which also radiates up my neck. I am going to be fitted with some type of brace in a few weeks, which I hope will help support my shoulder that is drooping.

I have an appointment at Oregon Health Science University on the 4th so hoping someone there can help. Its driving me nuts that I cant use my arm without pain. Also I can feel my scapula moving around when I try to use it.

Good luck with your appointment on the 4th, I will be interested to hear what they say. I have the same issue, any movement of my arm causes pain. It feels like it has no support.

I meet with the Physiatrist on 12/18 and will let you know how it goes.