United Brachial Plexus Network, Inc.

As someone who has been living with bilateral brachial plexus lesions for over a year, but only recently diagnosed, I am looking for ideas for treatment. Over the course of 14 months, I have had both rotator cuffs repaired, the first surgery was the cause of my injury. I have tried rehab over and over again with the same results. I have visible deltoid atrophy in right shoulder and the left shoulder seems to be going the same way. The most basic exercises cause symptoms in shoulders/arms/hands that are so out of proportion to what I am doing that it is ridiculous. I want to maintain my good ROM and flexibility, but I am beginning to feel a little masochistic in continuing to try to strengthen. There are no specialists in my area and my current shoulder surgeon, who has tried so hard to help me, really does not have a lot of experience with this condition. I have been given a prescription for Lyrica which I really do not want to get started on, for many reasons. I can never go back to my physically demanding profession and I am hoping to find something else to do, which will at least provide a distraction. Since it is becoming clear to me that I may be living with this for a long time, or some of it possibly forever, I am looking for ideas of what has worked for others with this condition. My situation may be further complicated by the loss of insurance soon as my employer cannot provide any light duty work and will probably be terminating my employment soon. Ideally, I would like ideas that are not too costly and more in the line of self treatment.

KRae,

Can you seek treatment with better specialists outside of your area before your insurance runs out?

I have learned that it is very important to seek out BP specialists as most surgeons & neurologists are very inexperienced with these injuries and often attempt a "wait and see" approach, which is not good advice. Your left arm isn't in terrible shape from what I've read so you should find an expert right away. See this list for starters, if you haven't already: http://ubpn.org/resources/medical/medical-directory

14 months is a long time, but not necessarily a lost cause, so hurry!

Did you have a EMG?

Good luck.

Fact seeing a Bp doctor is a fact, get a referral from your doctor.
Next see a Social Security disability lawyer you need something coming in and with medicare part B will help in the quest to get medical help to. If you have proof that your BP injury came from a surgery ask the disability lawyer for a referral to a malpractice lawyer and before you see this lawyer get all your medical records together when you see him. Having two mess up arms I know all about by my posts I am PTD wc and been SSD for years now from 2 mess up arms.
There is a fact about SSD and lack of use in both arms, I got mine without a lawyer or having a appeal.
You will find the doctor and treatment over time, so many post underline this fact to. The problem of the quest to find medical care comes from doctors not giving referrals in time.
I know how to self help with limitation in both arms
Improving what you can, comes from finding ways to adapt overtime and the best therapy comes from trying to so. The worse part is lack of direction and the depression that comes with these injuries no matter when they happen
Tell me what can you do and what you cant, I will try to help , from my experience by self help
Tom

Thanks so much for the responses. Lots of questions I will try to answer. Yes, I have had an EMG and that is when the bilateral brachial plexus lesions were finally confirmed. As of now, I have not been able to find any specialists in my area but I have not ruled out traveling to someone once my insurance picture becomes more clear. I am currently on long term disability and the insurance company has tried twice to get me on SSDI but it has been denied. I know there is a hearing scheduled but have been told that it can literally take years. Early on in my adventure, I was only dealing with torn rotator cuffs and had no clue that I would actually end up lacking in function. I have contacted a malpractice attorney who is gathering my medical records to make a determination if my case is valid. My current doctor and neurologist have stated outright that this was a traction injury from the first surgery, but things can get messy when the prospect of malpractice arises.

In terms of what I can or cannot do, it basically comes down to any repetitive motion with my arms causing pain/symptoms from my shoulders to my hands. If my arms are out away from my body or over my head, my arms burn/tingle and my hands go numb. I have raw muscle pain in my arms and a pounding pain in the rear deltoid after even mild weight bearing or resistance. I have tendinitis in my right elbow- probably from compensation for my deltoid while I have tried repeatedly to strengthen. I get cramps in the bicep region, sometimes randomly and sometimes when my arms are bent. My hands get very clumsy - I do not have full feeling in my fingertips and they can go numb or burn with use - also randomly. And there are signs of the beginning of the deltoid atrophy in the left arm. All that being said, I do have good ROM and flexibility and continue to go to PT and perform my ADLS - although with pain/discomfort. I get as much exercise as I can tolerate - I love to walk and it can cause pain- and I eat well. I have never smoked and do not drink. My therapist suggested acupuncture and my shoulder surgeon agreed that it is worth a try. I also think that the current severity of my symptoms could be due to the second recent shoulder surgery on my right arm which clearly irritated my nerves again.

Of course, as you know, the worst part is not knowing how much worse it will get and trying to determine a point of stability so that I can at least try to find a new career and get on with my life. After using my arms excessively in my old occupation, it is a big adjustment to be able to do so little with them now. I can deal with that part of it, I just desperately want to stop feeling so uncomfortable all the time. While it is very frustrating to be told by doctors that it is a matter of time, the literature I have read seems to indicate that at 14 months after the original injury, I may not have a lot of other options. I am glad I found this forum, because I am sure you all know that people may see us and think we look "great" because they really have no idea what it is like to live with this. Looking forward to hearing more from all of you and wishing us all a Happy New Year!

How did you get denied SSDI?? What was the reason given???
I know what being srew up in two arms means, birth erbs in the left and Carpel tunnel , radial nerve injury and a Shredded deltoid that I had surgery on but it failed. The only way is to immobilize my once good arm and but me in a Nursing home for Months. I have no other arm to use, I would be a Invalided. That is no choose, the Arbitrator agreed at trial, Srew you bet.
I am here for you
This is We will help but we might need to move it to a Private board???
Happy new year , Like I say there is hope and there is direction , so we hope by our experience,
You are not alone!!!
We are here,
Tom

hi, i just found this site and thought it would be a good one to join, i suffered a brachial plexus injury back in dec 18 2012, in which c5 c6 c7 nerves were avulsed and potentially the c8 and t 1 nerves is well, my neuro surgeon has said something different to me that what he has said after my first nerve grafting surgery back in feb 2013. and my second nerve surgery was in may 2013 in which he moved two nerves from my intercostel and one from my upper back and put them into my left shoulder arm area. and when i just recently saw him, two days ago that is he said that i would never be able to move my hand, and that was the first i had heard of that, and he said there were no other surgeries in canada that they can perform to fix my left hand, so i thought it would be a good idea to start searching the rest of the world, cause of read how stem cells can potentially work. so what I'm curious about is there anyone out there that knows of possible solutions for this, any help would be greatly appreciated, doctors names, web sites, anything, thank you