United Brachial Plexus Network, Inc.

I am also in alot of pain all the time and have been dealing with this since May 04. The last Dr. I went to at Shands Gainesville, Fl, stated the surgery they do there is a muscle transfer. I dont know if that is the way to go or the decompression surgery. I would love to hear from people who have had both and what their outcome is. I have to make the choice by March 3. I wish this would just go away!! I have heard that it can recover on its own usually in a year. Thank you for any information!!

Hi Mike
I certainly can relate to everything you are saying...
and I feel your pain...so sorry.
As I understand it (after 5 years living with this and studying it), Parsonage-Turner is just the original terminology giving to this condition. It is known by many other names such as brachial neuritis and neuralgic amyothrophy. In my own experience, the severe pain in my scapula and shoulder lessened to a great degree around 18 months after onset. I still have chronic pain in both shoulders and my neck, much of it due to related conditions of osteoarthritis, tendonitis and spinal stenosis, but the pain level is no where near the original intensity. I am, however, managing my pain with Oxycodone (which has brought me much relief). I originally could not raise my arm above waist level, but now can raise it slightly above shoulder level, so there has been some improvement in my 4+years with this. Some specialists will tell you that the nerve will heal completely in 6-12 months. This may be the case with some, but few people I have talked to have ever had the problem completely resolve. I also have never heard of anyone having the tendon transfer surgery to correct scapular winging come out of it with substantial pain relief (although there may be some) and so I would think long and hard before being rushed into surgery (just my opionion, of course). I think your primary focus should be on getting the pain relief you need to be able to cope with this. Until I found something that worked for me (after 3 years of suffering!), I too thought I would lose my mind...but, 5 years later, my mind is in tact and I am coping much better.
If I can be of any help to you, please let me know and I will e-mail you with some information on things I have found help me reduce the pain and get through my day.
Take care
p.s. Here is a short description I found on PTS on the description of the disease

Brachial plexopathy: The brachial plexus is a complicated network of nerves in the shoulder. These are commonly damaged in several settings including birth trauma, severe motor vehicle accidents and penetrating trauma (bullet and stab wounds), and due to lung and breast malignancies. Sometimes these occur without clear reason (idiopathic) and are called idiopathic brachial plexopathy. There are a variety of names for this disorder including neuralgic amyotrophy, Parsonage-Turner syndrome or brachial plexitis. The cause is unknown but may be auto immune or post-viral as this disorder often follows surgery or viral infections. Severe shoulder pain heralds the disease and may last for days to weeks. Following this, people may notice weakness, numbness, or atrophy of their muscles. Usually, there is spontaneous improvement without specific treatment. Some experts recommend a short course of oral steroids if the process is caught early while there is still pain.

The issue of what direction to go with, with this injury is a commonly discussed one, I for one am prepared to give the surgery a go and on the 26Th of Jan I will go under the knife for the muscle transfer op to stabilize the scapula.

I think at the end of the day we all are entitled to our opinions but I think one of the most important things to do is to find a professional whom is familiar with this injury and has experience in both managing this condition and dealing with it.

It has been said that we are all different and we react to drugs in different ways, I just don’t like the thought on being on drugs from the duration of my life, I have read that not all have pain relief after surgical treatment but no one I have spoken with have said it’s worst. I for one have spoken with three people personally whom have the muscle transfer all with good results.

I’ll keep you folks updated on my progress whether it be good or bad!

it sounds like your chiro could have caused compression on the brachial plexus and long thoracic nerve..the LTN orginates from C5-7 and follows a course to your 8th-9ribs..injury could be from anywhere...that is what im trying to figure out..i had a mri done of the cervical spine which revealed bulges at C5 and C6 but my ortho says many people have them and never have any symptoms and he doubts it relates to the winging so today im having NCV's and EMG's on both sides to see where my LTN is damaged. I had a normal cervical spine MRI in 2002 so i believe these bulges are affecting my winging and that the surgery did not cause it. My Story is the car accident/winging scapula thread. one month after my cervical rib removal..i showed no winging until after the wreck so im also trying to find a cause..but even if my vascular surgeon did it I wouldnt sue because they have been so good to me before and after my wreck in managing my pain and now depression. Even the best surgeons make mistakes but in my case i dont think it was him..its not adding up. If you look at my threads go to the links that were given to me..they are very thorough in how winging can present..even palpating the first rib can cause injury esp if your rail thin..I am as well. Im 5'10 and 130 so our nerves are more suseptable to injury..good luck and feel free to contact me..If you do have BPI and need more resources if you are dx with Thoracic Outlet Syndrome there is a great site for resources www.braintalk.org. good luck and hope your healing goes well

i got my emg results the day of the test. my nerves and the LTN are damaged or severed from a few cm or mm from C5-7 i will be seeing a neurosurgeon to do exploratory surgery soon to see what he can fix or graft back together. the neurologist who did the test said there is no question the severe whiplash caused the damage. my thoracic surgeon did not go anywhere near those nerves while removing the cervical rib. thankfully there is still some chance of recovery..thanks for all of your replys..amelia

hey nan...thanks for the info..the pain DOES suck,but the fact that I cant do any sports is even worse. I think im gonna role the dice and get the nerve decompression. (Ive got a 3 yr old id like to play ball with some day) Pray for me. Any info would be great..I listed my e mail.
mike

I'm a 25 year old male. When I move my arm back I can feel it rub aginst my rib cage. I always feel like I have to crack my neck, (I think it makes it worse).
When it first started happening I felt pain on my side. And I thought my heart may have a problem. I went to the local clinic, and the Dr. said I probaly do, but would need to see a cardiologist. Being 22 at the time I was scared and unsure when I may die. Developing an Anxiety Disorder. I found that my happit of smoking pot made it worse. A lot worse. Anxiety sucks. No one knows how you feel. While everyone else is living life and having fun, you can't. I went to the cardiologist and he said my heart was fine. But it was too late for my anxiety was already there.

But the good news is that you can overcome it. I have less and less anxiety problems every year. You need to take deep breaths and tell yourself that everythings okay. Go out and try to have fun. Do a project, one that requires a lot of thought. Just get your head out of the worry mode. But sometimes it will just come back, as it did for me. I went to my new Dr. who told me to take basic meditation and put me on Zoloft.
It worked and over the next few months I would taper down off of it. My anxiety has returned since then, but not as bad, when you feel it coming back just do one thing.
Relax!!! Your not alone friend, even when you think you are, people like me are right here with you!

i used to have aniexty attacks.. i found that a anti histamine .. like benydryl calms you down an d relaxs u.. i used to have a prescription antihistamine forgot what it was called

Well I had the pec transfer, alls well, having the split removed on the 14 th of March!

Wonderful that you could drop in James!
Happy to hear that all went well and you are
back home recuperating... hope you are getting
lots of tender loving care.
Look forward to an update when you have the splint
removed and are up to writing.
Wishing you great success!!!