United Brachial Plexus Network, Inc.

I have been living with a numb left arm/hand/shoulder/neck for the past year and four months. I lose feeling in my hand and arm 75% of each day. I also have pain and tightness in my neck, peck, shoulder blade and upper arm constantly.

When I was 13 I had a brachial plexus injury from lifting a heavy book bag, it yanked my whole left arm/shoulder down and my arm has been week ever since I partially recovered from that injury. I am now 23. Recently, (Jan 10, 2005) I carried a 24-case of water bottles with my left arm (because my other hand was full) from my car to my house, and since then had tightness and a large amount of pain in the back of my elbow which then radiated down to my fingers and up into my neck and shoulder. I also have alot of trouble sleeping.

I have had MRI's on my neck, spine, brain, arm, brachial plexus, nothing was found. I also had some X-rays on mostly my arm, nothing found. I had an EMG, which the doctor says was inconclusive because during the test the doctor was very rough with me and I almost fainted because it was so painful. Basically I have seen numerous doctors, neurologists, orthopedists, rheumatoid, physiatrist's and pain management doctors and none of them were able to find anything causing my pain. I am to the point where any doctors I see just give me pain killers that seem to help temporarily for around 2 weeks and then I'm back looking for a different pill, no doctors have found a more permanent solution.

I am at a loss....I'm in the same boat as some of you. No doctor has diagnosed me with a brachial plexus injury but they do think it is a possibility. They have found no evidence proving that there is anything causing my pain and agony. I now waiting 2 months for an appt for a Pain Management Neurologist who is the head of the dept. Basically all of the doctors I have seen and all of the PT I have gone to for 6+ months, ends up with me going to a "pain Management" doctor because no one knows what else to tell me what to do.

Any suggestions?

This is the same sort of thing ive been dealing with on a daily basis since birth. The same pain, numbness and with mine I have a large loss of movement from the shoulder seperation. As with you whenever I have gone to the doctors in the recent past they have no answers and seem to be at a complete loss. X-rays and MRIs show nothing except the damage to the bones in my arm from the seperation and supsequent damage to the bones from it growing before any surgerys where done. Anyway, I know exactly how you feel. With so many people having this problem and problems similar to it you would think doctors would know more and have good answers instead of just giving you drugs. Im not a fan of taking medication and thats all that ever comes from going to the doctor. I just wanted to say your not alone.

Hey George,

Sounds like you need a new set of doctors. Can you travel? If so, there are alot of good doctors mentioned in these threads and it my be well worth a drive for some answers. Since your first bpi somewhat healed, hopefully this one will also. Good Luck...

Dick

Eddie from MD
It's sounds like you have a birth injury.
Have you ever seen a Neurologist?
Most people with birth injury to the brachial plexus also have poor shoulder formation.
It has to do with the fact that we do not crawl and do normal weight bearing with our arms and shoulders.

I just recently had a shoulder expert tell me that nothing could be done for my shoulder problems and arm pain... needless to say I realized he knew nothing about bpi injury. He really did not know anything about bpi injuries or the long term problems.
If you live in MD you could look into seeing Dr.Belzberg he is familiar with OBPI as well as TBPI he is affiliated with Johns Hopkins.

Kath (adult/robpi)

This is in reply to the last post of this thread. I posted about this already but no one replied. Here is that post...


My injury... Posted: May 7, 2006 5:01 AM
Reply to this message Reply
Hello, my name is Edward. Im 26 years old and I live in Baltimore, Md. I sustained a injury to my left shoulder/neck area at birth that involved the brachial plexus. I have always been a big guy even at birth weighing in a almost 13 pounds. My mother did not have a "C-section" and because my shoulders where so broad I basically got stuck. To save my life the doctor pulled me with forceps at the shoulder causing a vast ammount of damage. It seperated my shoulder which lead to later problems with bone development. I was in a body cast for the early parts of my life then that changed to a arm support cast untill I was 5 years old. At that time I recieved a shoulder/arm reconstruction surgery. The doctors broke my arm and reconstructed it so that it would grow "normally" and to give me atleast partial use of the arm. They also placed a steele hinge in the shoulder to give me more movement and to allow me to learn how to use this arm. The hinge was removed about a year later. To make a long story a little shorter ill get to the point of why im posting here. Ever since I can remember I have been in pain because of my shoulder. Its only ever gotten worse and recently the pain has spread to my neck which ends up giving me terrible headaches at times. I have had physical therapy several times but it just doesnt seem to do the trick. I have done alot of things on my own to try to help with little or no effect. Over the past few years the pain has gotten so bad that I am very guilty of abusing pain killers which has caused other problems for me. The further my arm is extended the less I turn it over which cause many problems for me at work. I cannot lift my arm very far over my head and when I manage to it only lasts a few seconds because the pain becomes almost overwhelming. I cannot put my behind my back for more than a few seconds. The list of problems I have due to the injury could go on and on. I guess im posting here because I want to see if anyone could give me some advice on what I should do. All the doctors I have spoken to in the recent past seem almost clueless to my condition, or want to do some radical surgery. The pain just gets worse as time goes by and I am honestly afraid of what the future holds. I am getting married in a few months and starting a whole new life. Its become difficult for me work, im a chef and this requires hand dexterity which I have lost much of. I feel so foolish, but I get very upset thinking of a future for my soon to be wife and I where my arm gets bad enough that I cant work. It scares me to death. I actually think I had a panic attack the other day thinking about it to much which is what lead to me look into this on the net. There are so many things I feel like I want to say here just to be able to share them, but this message is long enough. Sorry for the length, and thanks in advance for any help anyone can offer.

It sounds to me as both aerostar and Eddie should seek the advice of a BPI specialist. Don't know where you 2 are located but there are several Drs listed in the threads. Maybe under resources too. They would have the best suggestion for treatment for you.
Sue

I am making an effort to see Dr Wolfe in NYC sometime soon. I e-mailed him basically my whole post and he said he thinks I should re-do the EMG and it will not be "torture" this time.
I did not have aq BPI from birth, it started at 13 from a book bag incident and has been week from there.

I was just telling someone today that I have such a negative attitude towards my pain resolution. I like taking pills that make me feel better but i know its not a perm. solution. I just want some sort of "finding" from my tests and a solution, I would jump at the change for surgery or even some kind of cortozone shot, even if there were only a 50% chance it would help.

Nothing I try works and i'm sick of waiting for it to fix itself. I'm finding as many resources as possible to somehow resolve this, its bad enough being numb and in pain all of the time and its soon to be 2 years...3 years...i need it fixed!!

Don't give up man! Keep hittin up the docs til they get it right habe you had an MRN another theswt the can do so is exploratory surgerery wher thet might find nothin necessarily wrong other than the accumulation of scar tiss which could be causing some of the feelings you are haveing so I wouldn't rule ou exploratory surgery because that allows the to get writ in and see whats the hell is goin on in that arm of your./ goodluck Bra Hit me back if you got any questions
BrandonHubbard_3@msn.com
Anyways Later Bro TRBPI

It has been confirmed, I had an EMG at the hospital for special surgery last monday (which was torture) and they confirmed I had some sort of nerve damage in the bp area. I was unable to see the neurologist because they rescheduled my appt and I am not able to see him (to suit my schedule or his) until July 5th....so now I wait. I an also seeing a pain mgmt neuro on june 22nd. We shall see what either of these doctors have to say. The wait and the anxiety are the worst part about it. And of course I'm still sore from the EMG!

Well, I am sorry you have been injured. But, glad you now know what is wrong. My EMG's were always kind of rough. Once I found someone that knew what they were doing it helped. Good luck and keep us up to date on how you are.