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.

That's awesome! I'm very excited for you. So after the 6 weeks do you have to do PT? If you do get to talk with someone can you ask if you loose any function after the procedure?

I never did ask if insurance would cover such a procedure. Hopefully it does as I have almost met my deductible for the year again. Thanks for keeping us posted.

Yes, PT is started after the brace is removed at 6 weeks. This continues for 2-3 days/week for 3-4 months. They did not mention any reduction in function other than having permanent weight restrictions. I hope I can speak with a patient that will give us a better idea what is involved.

They handlie the pre-authorization through your insurance.

Possible SAN injury...
 

I was so happy to find this sight, but this thread in particular. I think I may have an accessory nerve injury. I have the three classics signs (at least from what I've read so far). I have the drooping shoulder, atrophied trapezius, and winging scapula. And a lot of pain. For me, however, the injury occurred from a fall rather then a surgical procedure. I have read that it can happen this way, a kind of whiplash effect perhaps, not quite sure. In the beginning I thought the pain was from my rotator cuff but the MRI didn't show any tear. When these other symptoms became noticeable I did research and SAN was what I found. I see my orthopedic surgeon on the 30th and I am going to ask what he thinks and have him send me for an EMG.
Thanks for letting me chime in, there is NO place else to talk about this.

JF77,

Welcome - apparently, SAN injuries are somewhat rare so it has been good to talk with other people through this forum.

Let us know what is determined with your EMG. The EMG is what confirmed the diagnosis in my case.

Hang in there.

Welcome JF77. :Wave-Hello:

yes welcome JF77.

How did your appointment go? Did you find out if you have an accessory nerve issue?

Haven't had the appointment yet with the neurologist. Have to call him Monday to set it up. My Orthopedic Surgeon thinks it's kind of rare but I feel it explains my symptoms and pain.


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Just checking in...
 

I have an appointment for an EMG and nerve conduction study on the 15th. Should be interesting. Hopefully it won't take long to get the results.
Can't say I'm looking forward to it though I understand it's more uncomfortable then painful.
Will post results.

Hope your EMG study went good. Hopefully get some answers to your questions.

Cattle Dog,
a week to go before your surgery day. Hope things are going well.

My Orthopedist wants me to have another EMG done on May 6th since the other one was inconclusive. He also wants me to see a specialist about a possible nerve graft. He wants to have all bases covered before he does the EL procedure.

Keep us posted on you progress.

Stang1,

I was advised one week prior to my surgery that my health insurance denied. They have indicated I need to treat conservatively for a minimum of 12 months. The surgeon plans to file an appeal, but they are not hopeful. There is no other treatment for me besides this procedure.

I had everything ready to go - pre-op testing, fitted with brace, purchased a recliner to sleep after surgery, made travel arrangements. I'm very disappointed knowing I have at least 4 more months of this chronic pain.

Hope all goes well with your EMG today. I talked with a patient that had the EL procedure in February. She had previously undergone a nerve graft that was unsuccessful.

Let me know when you get your EMG results.

Oh no. I'm sorry to hear that. That's great that your Dr is standing behind you. Do they want you to do more PT? I tried that and it did not help at all.

I had my second EMG yesterday and they concluded that I have some (very little) electrical activity to the trapezius and it also showed extensive nerve damage. None of the other muscles in that shoulder are effected.

Today I had a consult with a specialist about a nerve graft. After discussing my history that my shoulder problem began months before my Craniotomy when they severed the nerve he informed me that I would not be a good candidate to have this procedure done. I was told that if you wait over a year that it would not take. Now with this information I wonder why my Neurosurgeon didn't inform me of this so that I would have had that option back then. So now back to my Orthopedist. Very frustrating. Have you discussed a nerve graft with your Dr?

Yes, I did PT for 3 months and the therapist indicated there was no rehabilitating this injury. Conservative treatment will consist of painkillers. The surgeon is very supportive and doesn't understand why the insurance is making me wait 4 months, when they ultimately will approve. It is extremely frustrating when I am on COBRA paying for coverage.

I asked about the nerve graft and they indicated they don't have a very high success rate. I also have had back and forth with the Neurosurgeon and Orthopedist, I relate to your frustration.

I'll let you know what goes on with the appeal and let me know how things go with the Orthopedist.

There has to be better days ahead!

Hey everyone. I was wondering was all of your symptoms were. I am 29 years old. I am a fire fighter in Charlotte nc. On December 1st I feel out of an attic while fighting fire. I caught myself and hung by my right arm. I dislocated my shoulder and basically hung by the nerves and muscles. The shoulder popped back in and I was talked into going to the er. Xray showed nothing so a shot and I went home. I was assigned to light duty and over the next week started developing numbness and tingling in my hand along with severe pain in in the shoulder. I had a mri two weeks later showed a small tear in the labrum and rotator. I did therapy for two months. The pain was now going from the top of my neck to outside of my shoulder. Along with the numbness all 90 percent of the time and nothing made any of it better.

I switched doctors in February of 14. He was an ortho The first as appointment he said it was nerve damage and order emg. It showed damage but they never told me what was. He did surgery in march. He cut my shoulder blade, repaired labrum, and cleaned rotator. That didn't help and he sent me to a neurologist. In September I saw a doctor at wake forest Baptist who wrote studies on brachial plexus injuries. He ordered another emg. Results showed no damage but they didn't do all of the nerves.

Also by this time I had severe drooping in my shoulder. I had been doing therapy for 6 months and was so unable to lift one lb and hardly any Rom. He did another surgery for brachial plexus neuropathy. He found tendons really tight on the nerves so he stretched them. It was a two hour surgery.

That was in October since the surgery I have had no improvement with 7 months of therapy, I have no Rom, in front or to the side, no lifting at all. I have developed migraines only on the right side of my head. I saw a neurologist in January did an mri of my neck which didn't show anything. He said they were coming from the injury. I just saw my surgeon again and he says her is nothing else they can do. That I well never be able to work again.

I have researched the eden Lange surgery in hopes of pulling my shoulder back into place. He did say that along with the brachial plexus neuropathy that I also have spinal accessory neuropathy. I feel that if my shoulder lifted back into place the brachial nerves would heal from the stretch of the shoulder droop. He said it wouldn't work because I didn't have bad enough scapular winging.

I'm 29 and hate the thought of losing my career of 10 years and not being able to have a normal lift. I have 3 small kids that I can't lift. So I'm considering driving to see the Dr Hawkins who does the youtube of eden Lange. I just was hoping to see if my issues with the dripping and pain may relate to yall before going.

Thanks for reading and any advise would be appreciated. Stike

Hi Stike,

I cannot give you any advice, but I just wanted to say Welcome, and that I'm sorry you got injured doing such a dangerous yet vital job. I do hope someone will come along to give you the advice you are seeking.

Dave.

Eden Lange Procedure
 

Stike,

I am very sorry to hear about all that you have been going through. If you do plan to move forward with the Eden Lange Procedure, I would highly recommend Dr. Anthony Romeo in Chicago. He is one of the top shoulder surgeons in the Country.

I plan to undergo the surgery with Dr. Romeo once my health insurance approves the procedure. Apparently, they want you to treat conservatively for a year first. September will be one year since I had cervical spine surgery that permanently damaged my spinal accessory nerve.

I would be glad to provide more information if you are interested - I live in Pittsburgh, PA.

Cattle dog, Thanks for responding. Yes i am interested in how your shoulder looks and act. Do you have droop in your shoulder? Does it cause neck pain from stretching the nerves out because of the hang. My first surgeon told me that the eden lange would not work because i dont have severe winging. I am going to be see Dr Richard Hawkins, sometime soon. The one who has the youtube video. Also i think i saw on here that someone said that there is a permanent weight restriction. Have you heard that from your doctor and if so what is it. Thanks for the help

Yes, my shoulder does droop due to the trapezius palsy. I have some muscle atrophy underneath my arm. I have pain that runs along my neck and shoulder area when I use my arm. Scapula winging was not discussed during my consultation. Measurements were taken as to how far I can stretch & lift my arm. Following the surgery, I do believe there will be permanent weight limitations with this arm. Good luck with your appointment with Dr. Richard Hawkins - I'll be interested to hear how it goes.

Hi, what PT did you do? Perhaps this may help..
https://thesportsphysio.wordpress.co...misunderstood/

Just wanting to see if anyone has had the EL procedure. I have an SAN injury from a lymph node biopsy.

so I know this is old post but did anyone actually have this done please share