General Health Conditions & Rare Disorders Discussions about general health conditions and undiagnosed conditions, including any disorders that may not be separately listed below.


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Old 05-20-2014, 10:30 AM #11
Princessmorticia Princessmorticia is offline
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Default Thank you Doc!

Thanks so much Dr. Smith,
It's such a shame that there aren't any recent posts regarding this injury and procedure - am desperate to find someone who has had or is having the Eden-Lange Procedure!!
Any help is greatly appreciated!
I was informed today that I have a permanent disability with no chance of recovery - all from a "routine procedure"... Not good!!!
If there is any chance you have any contacts that would be willing to give me a second opinion I would be so grateful - I have had a surgical repair with no success.
I am in New South Wales, Australia!
thank you so much for taking the time to reply to me even though this thread is relatively inactive [such a shame!!!].
Sarah [Princessmorticia]
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Old 05-20-2014, 11:17 AM #12
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Quote:
Originally Posted by Princessmorticia View Post
If there is any chance you have any contacts that would be willing to give me a second opinion I would be so grateful ...
Sorry, I don't; I'm not a medical doctor, and I'm halfway around the globe.

I would ask in the Thoracic Outlet Syndrome forum, as that's where many of the threads discussing it were.

Your lawyer would also be a better person to ask.

Best wishes,

Doc
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Old 04-19-2015, 10:58 AM #13
leeangelau leeangelau is offline
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Default Hi.

Hi Sarah.
Send me an Add on to Leesey Salvatore on FB if you like and we can catch up. I have Accessory nerve Injury due to Malpractice and I took it all the way to the Supreme court in Sydney. I was the first successful client to win a case based on this type of injury to the extent it was awarded. I was in similar situation to you, 2 young boys, unrelenting pain. It completely took over my life.
More than happy to talk with you.
Regards
Leese





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Originally Posted by Princessmorticia View Post

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 10-15-2015, 12:19 PM #14
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Default Trapezius palsy and Eden-Lange procedure

Anyone, who had this surgery? I could not find any reference at all. I am planning to undergo one unfortunately, due to my n. accessorius damage. I am 20 y old and still want to do sports etc... this damage makes a lot of things impossible for me.

How's your recovery?
After months of the surgery is there any pain?
How strong the muscles are?
Is there any disadvantage?

Sorry for my bad English and thank you very much for your help.
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Old 10-15-2015, 02:53 PM #15
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Default Eden Lange and trapezius palsy

Hello and welcome to NeuroTalk,

You could try asking or reposting on the

Thoracic Outlet Syndrome Forum

or you could use the

Forum Search Feature

for specific keywords e.g. Eden Lange
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Old 09-17-2017, 08:27 PM #16
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Im hoping to find someone in this post who has had a successful outcome. Finding others with an SAN injury seems impossible.
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Old 10-20-2017, 01:46 AM #17
K R Kirk K R Kirk is offline
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Hi my nerve was removed during a Cancer surgery it was unavoidable just trying to cope with it. I am/was a carpenter range of motion is not the bad part but the pain as a consequence of doing to much. 3 hours light activity then days to recover. Not using much for pain pills 60 Phone pills in 45 days average but to much inactivity I go stir crazy until I do anything then sit to recover. The US government says Disabilaty is ending yet I donít know how to function 40 hours. I have steady pain then shooting pains the pills help with the steady but the sudden shooting pain I have no answer for. Has things improved other then learning to live with it.
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Old 05-25-2019, 03:32 PM #18
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Default Hoping to revive this thread - lots of questions!

I've been dealing with a very poor recovery from shoulder replacement surgery for nearly 3 years and only just learned last month that I had a SAN injury resulting in trapezius palsy that has been my main problem all this time. Just a complete failure to diagnose by the entire medical community, despite my continuous engagement and dedication to follow up care and all the various physical therapy protocols.

I am really hoping I can revive this thread and in particular I would like to make contact with you, mwm121999, if there's any chance you see this message.


Quote:
Originally Posted by mwm121999 View Post
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.
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Old 04-06-2021, 07:32 PM #19
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I have been researching and I believe this SAN is also my problem. I started with rotary cuff injury due to my right arm getting twisted up over my head with a foot on my back. I felt tearing the tearing occur. A few months later my neck really started bothering me more and more. Ended up having 4 damaged cervical disc right side of my neck which was not a huge surprise. Had C5-C7 fused. Still alot of shoulder , head and neck pain. Year later CT scan showing C5/C6 had failed. Had second surgery from back to redo C5/C6 using rods and screws. My shoulders were killing me after the surgery. I could hardly lift my arms. Started PT about six weeks later. Thought things were looking up then noticed that I could not lift/shrug my left shoulder well. The shoulder pain just keeps increasing and if it were not for the gabapentin and tylenol every couple of hours I wouldn't move. At this point I can't shrug my left shoulder at all. I although have not arm pain in both arms. Can't tilt head toward shoulders. I can't rotate head to right without pain very far. Rotating to left is now worse since the shoulder pain has increased more. The funny thing is I had no issues at all with my left shoulder prior to the last redo surgery. Now it doesn't lift and this shoulder is more painful than my right. It feels like I have a 1000 pounds sitting in my shoulders. It seems like the more I exercise the worse I get.
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