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.

Thanks Cattle Dog. So I finally found a Dr that has done the Eden Lange. He has done 2 of them. He said that the Rohmboid muscle is a lot smaller than the Trapezius so it will never function as the Trap but it does help. My other concern is what function do you loose with this procedure. I dont plan on rowing a boat. I wish I could talk to someone that has had this done. He is willing to do it but I want to be well informed before.

Stang1,

Given how rare this is, I would ask if you might be able to speak with a patient that has had the procedure. Was this an Orthopedic Surgeon? I would think that you should gain function, meaning improved range of motion with reduced pain.

There is a Doctor Richard Hawkins who has the procedure being performed on YouTube. His patient looked to have full range of motion following the procedure.

Do you have drooping of your shoulder? Mine has and I would hope having this procedure would help with this, as well.

Hello, my name is Dan.
Sorry to hear your in pain too.
Im really new to this site. I havent gotten use to,all the features.
If you do reply back can u also pm me?
I have. Few questions??
I have had 3 rotator cuff surgeries in 2 years. And the pain after each keeps getting worse. I have. A EMG scheduled for next Wed, but i am miserable.
First of all, no dr can tell me why it keeps tearing. I also have had my biceps tendons repair each time.
Just had my 3rx surgery in aug 2014... I Really believe its torn again.
I have great ROM.
But....
I have headaches all the time. Some get severe.
Right neck pain. Righg shoulder blade pain. Hands get really cold sometimes.
They get so cold that they start to ache and hurt.
I get a stinger sensation in both,arms when driving
I can move fast. If. I do i get dizzy
I can hard lift my arm staight in front of me and up at the same time.
Also if i extend my arm out to the side straight out i can left it up level with,shoulder.
Also am very weak in right shoulder and arm.
Have very noticeable muscle tone lose in my righg side.
Do you have any. Of theze symptoms??

Hi Stoney. Welcome. Well I just found out I have another issue. I have AVN in the same shoulder. Now I don't know if the pain is from the AVN or accessory nerve not working. So the plan is to address the AVN first.

The Dr I am seeing is an Orthopedist. I too have shoulder droop and have visible atrophy in the Trap and Sternocleidomastoid muscles. I found two videos on youtube showing the EL procedure and the patients looked happy afterwords and the range of motion looked normal.