Accessory Nerve trapezius palsy
 

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. :Wave-Hello:

Trapezius Palsy
 

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.

Trapezius Palsy
 

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.

Trapezius Palsy
 

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.

What is AVN?

Avascular Necrosis.

Trapezius Palsy
 

Did they indicate why you developed Avascular Necrosis? How do they plan to treat?

Not like you needed something else going on.

They said that somehow the blood supply is cut off. I asked if it had anything to do with the accessory nerve thing and he said no. They are going to do a procedure called core decompression where they drill a few holes into the bone in hopes that when it repairs itself it will establish new blood supply to the dying bone. I am at stage 2 AVN which means it does not show up on an x-ray. The MRI clearly shows a density change at the humeral head. (shoulder)
The sooner you have it done the better. Getting old sucks!

I hope the procedure goes well, not like you needed anything else to deal with!

I meet with the Physiatrist this week, so I'm hoping they schedule the EMG soon so I know what the plans will be for treatment.

Also, they prescribed a topical cream that consists of Ketamine, Cyclobenzaprine, Diclofenac, Gabapentin, Orphenadrine & Tetracaine. It's mixed by a compounding Pharmacy and does seem to help with the pain. Not sure if you have already tried something like this?

Yeah, it's hell to get old!

Thanks Cattle Dog. Any luck on your appointment? I have my surgery (procedure) date set Jan 23 for the core decompression. I am planning on having the Eden Lange procedure done a couple months after that. I haven't tried anything but Ibuprofin for the pain but it does get me by.

Stang1,

My appointment is tomorrow, I'll let know you know how it goes.

Unrelated to this issue, I found out today I have a torn meniscus in my knee that will require surgery. Not sure how this will work into everything else going on.

Stang1,

I met with the Physiatrist and given how much my shoulder has deteriorated since November he is sure the nerve will not recover. He is not going to do another EMG as he feels the results will be the same. Surgery is my only option to improve any function in my arm. I asked if it will be the Eden Lange procedure and he wasn't sure. He is going to talk with an Orthopedic Surgeon in his group and call me next week. He did say whatever the surgery will be it is complex and would involve a long recovery. He recommended I meet with several surgeons to find someone who has the most experience with this type issue.

I guess it's one thing to head into major surgery knowing your surgeon has performed your procedure successfully numerous times, but I don't feel confident anyone even knows how to do thiis.

I have an appointment with an Orthopedic surgeon on 1/6 for my knee and I plan to discuss my arm also. This is the same Orthopedic that I saw initially regarding my arm.

I'll let you know how it goes...think I just want a new arm for Christmas!

Good to hear you made some progress. Since you get to skip the EMG that equals less waiting. You may beat me to the EL procedure provided you are comfortable with your Dr. My shoulder pain is getting worse so I'm anxious to get something done. Keep us posted and I will do the same.

Will do - at least we know there is one other person facing the same procedure.

If we don't talk, have a good holiday.

Good luck with your core compression this week. I have my knee surgery on 1/21. I plan to tackle my shoulder surgery after that.

Thanks Cattle Dog. Im actually stressing about this surgery but am anxious to get it over with. Let me know how your knee surgery goes. I am going to talk to the Dr more about the Eden Lange procedure also. Have you received anymore info on it?

My knee surgery went well just sore and tired - I start PT tomorrow.

The surgeon that operated on my knee does not feel there is a surgeon in Pittsburgh that has performed the Eden Lange procedure. He gave me the names of several surgeons who may have some experience in Chicago, Boston, NY and the Cleveland Clinic in Ohio.

I'm very apprehensive about having such a rare procedure done, but don't want to live the rest of my with pain and limited function of my arm.

Once I'm moving again with my knee, I plan to begin contacting these surgeons. I'll let you know what I find and would be glad to give you the surgeon names.

I'll also need to check with my health insurance regarding out of State coverage, that may make my decision.

Best of luck with your surgery, I'll be thinking good thoughts for you.

Thanks Cattle Dog. Glad to hear everything went good. Hopefully you find someone nearby that has done the EL. I was worried about insurance also until I found this Ortho. Outside of Oregon and my deductible was a lot more.

My surgery went good also but lots of pain in both the soft tissue and the bone. Should get better soon though. I did not get to see the my Ortho Dr while I was awake so was not able to ask more questions. I saw the resident but he was unable to answer any questions. Keep us posted on your progress.

Glad your surgery went well, I'm sure that is a relief to have that behind you. Hopefully, you have a quick recovery.

I hope to start making some phone calls next week and will let you know what I find.

Hope your recovery is going well. I've decided to move forward with surgery. After conversation with my Orthopedic doctor here, I've narrowed it down to either Chicago or New York.

I am traveling to Chicago mid-March for a consultation. I was amazed that the surgeon in New York personally called me. He indicated there were very few surgeons in the Country that perform the EL procedure (nothing we didn't know) and that he does 5-6 per year, which I thought was pretty impressive.

My orthopedic doctor here is interested in possibly traveling to observe my surgery once I get scheduled.

I'll keep you posted.

Thanks Cattle Dog. Recovery is slow. I still have that same pain in my shoulder and upper arm. I suspect its from the accessory nerve issue and not the AVN. I'm not suppose to lift more than 2-3lbs for 3 months after that core decompression procedure but they told me to keep it moving with range of motion exercises.

That's great you are making progress. Wow 5-6 per year is good experience. You would think someone would chime in by now that has had this done. Thanks for the update and keep us posted on the progress.

I would have thought also. I'm going to ask when I go for the consultation if it is possible to speak with a patient that has had this done. Hopefully, someone will be willing to talk about their experience.

Hi Cattle Dog. Any luck on speaking with anyone that has had this done or do you have a date set? I have a post op appointment at the end of March to see if the core decompression has been successful. I will probably let him know that I want to proceed with the Eden Lange. I am still having that same shoulder pain which I'm pretty sure is from the trapezius palsy. Hope things are going well.

Stang1,

We're meeting with the surgeon on March 16th in Chicago. I Plan to ask if I can talk with a patient who has had the EL procedure performed. Hopefully, I'll have more information I can share with you after the consultation.

I hope that I'm a candidate for the surgery and can get it scheduled quickly. My pain is getting worse and my current medications do not seem to do anything for it.

How's your recovery going?

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....

Spinal Accessory Injury
 

MagicMom,

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