I'm glad you are making some progress. Do you have any control of your trapezius? They told me that the worse it is the more i would benefit from the EL. In my case they cut the accessory nerve after confirming that the nerve did not function due to a calcified tumor next to the brain stem.

Maybe it's a good thing that we can't find anyone on forums that have had the EL. May indicate the outcome is good and they are getting on with their lives. Trying to think positive.

My recovery from the shoulder surgery is going good. I have a little over a month before I can start lifting heavier items.

Stang1,

I do, but try to limit the use of my arm due to pain and fear of further damage. The Physiatrist has indicated my scapula is significantly protracted and rotated, completely biomechanically unsound and the trapezius is significantly wasted as well as the deltoid.

I hope things aren't to the point that surgically nothing can be done.

Still hard to believe that there are so few that have gone through this.

Well, I hope to have information to share with you next week.

Glad to hear your recovery is going well. Can I ask how old you are?

I'm not sure if mine is protracted or rotated. My Dr and PT don't give me much info. I don't think my deltoid is effected at least I hope not. I just know that my arm/shoulder does not work right. It is very noticeable when I try to pull something apart. Left shoulder seems to float around.

I have heard that a nerve graft is time sensitive but I don't think this is.
Keep me posted. Im 48.

Stang1,

Hopefully, I'll have some positive information to share next week.

Maybe, we can talk by phone sometime. It is comforting to know that there is one other person out there going through the same thing.

We are close in age, I'm 53.

Let's make it a conference call! Seriously....I may be going through the same thing, and I really don't understand it. I was told by one doctor it was the accessory nerve, and another doctor that it was the axillary nerve. Then I'm told that the problems are coming from C5 or C6 or C7. Maybe its a mixture of everything. I'm in my fourth year of pain and I still don't get it. I think I've read all the same stuff as you....

MagicMom,

Sorry to hear you're in pain. Have you had an EMG (nerve conduction study) done?

Welcome MagicMom. It would be nice to talk and compare symptoms and info with both of you. My complaints are: I can't hold a gallon of milk straight out in front of me. Can't raise my arm above my head straight out from my side. External rotation is very weak. All this causes pain in the shoulder area and down my upper arm. The sternocleidomastoid muscle is also effected but I don't really notice it much. You don't realize how much you use the trapezius until it's gone. Are you having neck pain or shoulder pain?

My rotation is weak. I can't hold a coffee cup steady without balancing it with my other hand. Folding laundry and the rotation motion I make when dumping food or water out of a pan flare up my pain. I did have a few months where I couldn't lift my arm, but that only lasted a couple months. I have a deep aching pain. I did have multiple EMG reports, but they all said different things, and the last few tests didn't test the exact same things as the previous emgs.

Stang1,

Just wanted to let you know I met with the surgeon in Chicago and feel comfortable (as much as I can be) with him performing the Eden Lange procedure. I have scheduled for May 5th. They immobilize your arm for 6 weeks in a gunslinger brace. Not sure how I'll manage flying back on a plane, pain wise.. I can follow with my local Orthopedic doctor, but will need to travel back at 6 weeks and again in 3 months. It's going to be costly, but this is the only option. I just hope all goes well and there are no complications.

Still a mystery as to how this happened. He said he has never seen before with the type neck surgery I had.

He recently performed on another patient and is going to check to see if they would be willing to talk with me.

I will keep you posted - sounds like MagicMom might be joining our club.