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Old 02-18-2011, 09:18 AM #1
clncolt clncolt is offline
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Confused Spinal Accessory Nerve Damage/Trapeze Muscle gone

Hi

I have damage to my spinal accessory nerve caused by a surgical error during cervical lymph node biopsy. It has been 20 months since onset. I have severe muscle atrophy in my right shoulder. Pain limits my abilities, but with the meds I am coping. I am told that the Eden Lange Procedure is the BIG FIx. I am terrified of this surgery, but I know it is my only option unless I want to permanently live this way. Please if anyone out there has had this procedure I would appreciate your feedback. Did it really help, how long in rehab, etc.,...Thank you.
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Old 05-21-2011, 08:13 AM #2
leeangelau leeangelau is offline
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Hi Clnolt. I was just reading through this site looking to see if anyone had Accessory Nerve damage like myself and came across your post. I had my AN severed during a surgical procedure years ago, been to hell and back x100 since. Many years spent in court as well.
My right shoulder/trapezius completely atrophied within 5 months of it happening, noone wanted to admit there was a terrible problem and each Dr kept fobbing me off once after another. I had Scapula winging as well withing the first 6 months. Chronic pain like I could never ever describe. Loss of function, loss of quailty of life.
Take care
Unfortunately for me I was told by a Right Shoulder Specialist here in Sydney that I was not a candidate for the Eden Lange Procedure as there was too much other damage but I would like to wish you luck in any treatment you mind be able to have. Do what you can and fight to feel better again, you don't want to be stuck with this years down the track. I am 37 now and my entire Adult life has been an uphill battle cause of the pain and suffering of this darn injury, do EVERYTHING you can. Take care
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Old 07-25-2011, 08:54 PM #3
mysticalh2o mysticalh2o is offline
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Confused Eden Lange

My accessory nerve was damaged as a child as a complication from a Tortecollis surgery. However, the symptoms did not reveal themselves until 30 years later. I now have a Trapezius muscle that has atrophied, died and was reabsorbed by my body within 6 months of onset. Drs cant explain it. Scapular winging and pain that just doesnt seem to quit. I have been waiting 3 months to see the only dr in our area with any expertise with this surgery. I too have been advised this is my big fix. And our last resort. I am quite dismayed that with the power of the internet there is not more information regarding this surgery. And the outcome.

I did find an article. But because I am new to this forum, it will not allow me to post it. And again, there is no one to talk to who has actually gone through it.

Sending you happy thoughts,
Myst
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Old 02-25-2012, 12:48 AM #4
dragonflyspirit dragonflyspirit is offline
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Default Same story

Hello,
I also have accessory nerve damage from a severed nerve during a lymph node biopsy. After months of nerve testing and physical therapy, I was able to have a reattachment surgery that does not appear to be successful. Although I had very intense pain during the first year, it has lessoned over time. I have heard of the Eden Lange procedure, but to be honest, my pain would have to greatly intensify for me to consider it. I have already lost mobility and to some extent health. I am fortunate to have access to weekly physical therapy that has greatly reduced the pain and has increased my range of motion.
Hope you find an answer to your question and find peace with whatever you decide.
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Old 03-11-2012, 07:48 PM #5
attipay attipay is offline
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Default Me too.....

Quote:
Originally Posted by clncolt View Post
Hi

I have damage to my spinal accessory nerve caused by a surgical error during cervical lymph node biopsy. It has been 20 months since onset. I have severe muscle atrophy in my right shoulder. Pain limits my abilities, but with the meds I am coping. I am told that the Eden Lange Procedure is the BIG FIx. I am terrified of this surgery, but I know it is my only option unless I want to permanently live this way. Please if anyone out there has had this procedure I would appreciate your feedback. Did it really help, how long in rehab, etc.,...Thank you.
I had a lymph node removed from my neck in July of last year. After 4 MRI's 3 Nerve conduction tests....my Neuros and Orthos sent me to Stanford University. It was there that they knew exactly what had happened. I was elated to know that there IS a new cutting edge procedure where they take a nerve that is not so important and put it through the tunnel where the damaged nerve was. Nerves grow 1 inch per month (If I remember correctly). My surgery is scheduled for April 30th but I am on a waiting list. My shoulder will only have to be stabilized for 2 1/2 weeks and then I resume my normal activities. Will probably have physical therapy.
I believe the person that invented this procedure was Susan E Mackinnon in St. Louis. She may be able to tell you who to go to in your area. I live in Ca. and Stanford was well aware of this surgery. The surgeon that did the damage was a general surgeon and my trapezius and sternocliomastoid (sp) muscle/nerves were BOTH injured along with a rotator cuff tear from the way I was positioned in the hospital.
I hope this is something that will help all of you......I have found a plethora of information on Google about this nasty problem that ALL surgeons should be aware of....
Google "Malpractice Litigation After Surgical Injury
of the Spinal Accessory Nerve" You will learn a LOT! This should NOT be happening to anyone!
Godspeed to all of you....I KNOW your pain.
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Old 04-04-2012, 03:10 AM #6
mwm121999 mwm121999 is offline
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Default Have same problem

First I would like to say you are not alone. You are correct about Dr.Mackinnon. I to went to Stanford. Dr.Curtin was my surgeon and she is phenomenal. However, I still have problems. The surgery was not a guarentee, but I was willing to take the chance. Contact Aitken,Aitken,Cohn. Mr.Cohn is my attorney and has delt with cases like this and won. He is located in Santa Ana. 714-434-1422. Contact immediately. Staue of limitation is limited to 1yr. from the date of injury. Hope it's not too late.. Please contact him. I as well don;t want anyone to ever ave this type of injury to happen to them, if it does, I hope they seek his help. I researched attorneys and he is the only only that has experience in this type of case. Al other attorneys will not take case. trust me. I called every attorney and they all turned me away. He didn;t. He is incredible. Please call immediately.
Quote:
Originally Posted by attipay View Post
I had a lymph node removed from my neck in July of last year. After 4 MRI's 3 Nerve conduction tests....my Neuros and Orthos sent me to Stanford University. It was there that they knew exactly what had happened. I was elated to know that there IS a new cutting edge procedure where they take a nerve that is not so important and put it through the tunnel where the damaged nerve was. Nerves grow 1 inch per month (If I remember correctly). My surgery is scheduled for April 30th but I am on a waiting list. My shoulder will only have to be stabilized for 2 1/2 weeks and then I resume my normal activities. Will probably have physical therapy.
I believe the person that invented this procedure was Susan E Mackinnon in St. Louis. She may be able to tell you who to go to in your area. I live in Ca. and Stanford was well aware of this surgery. The surgeon that did the damage was a general surgeon and my trapezius and sternocliomastoid (sp) muscle/nerves were BOTH injured along with a rotator cuff tear from the way I was positioned in the hospital.
I hope this is something that will help all of you......I have found a plethora of information on Google about this nasty problem that ALL surgeons should be aware of....
Google "Malpractice Litigation After Surgical Injury
of the Spinal Accessory Nerve" You will learn a LOT! This should NOT be happening to anyone!
Godspeed to all of you....I KNOW your pain.
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Old 05-08-2012, 03:12 PM #7
attipay attipay is offline
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Default Accessory Nerve Damage

Thank you so much for your attorney's number! I live in Porterville and I think I have an attorney in Fresno..I'm going to call your guy "Just in case" I TOO tried everyone attorney that did malpractice. I think the problem is that in Ca. there is a med-mal cap of 250K, the experts are crazy expensive for a small firm and a large firm want the bigger payoffs.

Dr. Curtin was and is a wonderful doctor. I had my surgery on March 29th. Minimal pain. I cannot tolerate the side effects of Neurontin, Lyrica or any of those meds....So I'm just toughing it out and the pain is not bad. I have not been to Physical Therapy yet. I'm waiting to get approved to have it at home. Meds make me to messed up to drive, plus I have fibromyalgia and never know when will be a good enough day for me to get out. I hate cancelling on them.

I have gained back approx 80%-85% of my range of motion, but my trapezius muscle still looks like a razor blade.

Thank you AGAIN for the number of your attorney.....I'm going to give him a call this week. I have ALL the paperwork from my neuros, ortho's, Stanford saying the AN WAS cut during my lymph node biopsy.

Oh, one more thing....my Primary care physician apparently saw the Dr. that did the lymph node biopsy and said something to him. The Dr. called "to see how I was" that evening. I was taking a nap and my husband said "you will have to ask her and she is sleeping"....he was going to call back but as of today haven't heard a thing. I am not mentioning anything about litigation to him.
Have you started your case? Does your attorney think it will go to trial? One think I do have on my side is that I went back to him and showed him my wingged scapula, frozen shoulder, etc. He did NOT send me for further testing at his expense which is clear Negligence.
Do you live in Ca?
Thanks again!
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Old 03-13-2013, 03:24 PM #8
jetset jetset is offline
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Default More information about this new procedure

Quote:
Originally Posted by attipay View Post
I was elated to know that there IS a new cutting edge procedure where they take a nerve that is not so important and put it through the tunnel where the damaged nerve was.
Thank you for this information. Recently, I was attacked and stabbed in the neck which killed the upper half of my trapeze muscle. Can you please tell me where this procedure can be carried out or the name of the procedure so that I can research it. I tried Google and I couldn't find anything about it. I am having a terrible time right now. Any help would be appreciated.
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Old 12-06-2013, 08:40 PM #9
Princessmorticia Princessmorticia is offline
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Heart S.A.N. injury - advice please!



Hello everyone,
Firstly can I tell you all or excited I am to have found this support group!
I am 39 & live in NSW, Australia.
In October 2012 I had a lymph node biopsy which went horribly wrong. The Dr severed my spinal accessory nerve & I now have all the things you are describing - it is my left side.
Left scapula winging, incredible nerve pain in my head and neck and shoulder, CRPS (chronic regional pain syndrome) in my left side, and only 30 degree or less abduction from the left arm.
My pain medication list is enormous & rather ineffective - I am taking lyrica day & night, tramadol morning & night, oxynorm up to 4 times per day, Targin twice a day & paracetamol twice a day.
My mental health is in a bad state and have been referred to a psychologist for help.
I had a repair done surgically in January 2013 which was unsuccessful.
I have since been back to my surgeon in the hope that he could do a nerve/muscle graft, but my injury was right at the branch & is apparently too risky.
I have a lawyer who is currently working hard on my case but I feel as though my whole life has been ruined by this injury.
I have 2 young sons & am a celebrant - my working abilities have reduced dramatically and my financial situation is dire - the medication is costing me more than I'm making and I can't get access to physiotherapy anymore due to the cost - he won't bulk bill me. I was having acupuncture and gentle exercises with him but neither of those things improved my situation much anyway.
Until last night I felt like I was alone in the world having no one to understand the pain and disability I've been left with after what was supposed to be a "routine procedure".
I am really keen to hear from any Australians who have been injured like this to see if I can get some contacts for a second opinion on the surgical front.
Thank you all so much - I'm really sorry you are all going through this as well.
My apologies for taking up so much of this thread I am new and not sure where to post!!
Sarah x x
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Old 12-07-2013, 12:29 AM #10
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Default

Hi Princessmorticia, welcome.

Most of the posts in this thread are quite old, and most of the posters only stuck around for a short while.

I searched for "spinal accessory nerve" in the archives, and found many posts/threads—all over the place—but mostly in the Thoracic Outlet Syndrome forum.

You might try asking in that forum, and/or do the same search in the archives (Search function along the top bar of any forum page) for other discussions relating to this.

Wishing you the best; I don't understand how so many are being injured by surgeons in this way.

Doc
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All opinions expressed are my own. For medical advice/opinion, consult your doctor.
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