United Brachial Plexus Network, Inc.

Hello,
I am 43, and was finally diagnosed yesterday with Klumpke's. I was injured at birth, after an extremely difficult delivery, and my parents were told that my collar bone was broken. There was never a splint, no follow ups, nothing. My parents noticed I held my arm funny, but nothing was ever done. At about 8, I began to have problems in gym class, and when I couldn't do certain activities, pull ups, etc., the teacher suggested my parents have my arm checked. I was taken to the same doctor that delivered me, and they actually laughed at my parents' concern and said, "Oh, she has a crooked arm, she's fine!" Then, they informed my parents that they could send me to an orthopedic surgeon, and have the arm rebroken, but it would be slow and painful, and possibly would not work. So, my parents were discouraged, and did not pursue any further. I have learned to compensate, and even play piano. My family understands that I can't receive things at the drive thru window, or style my hair with both hands But last year, I began to have severe pain. After going to my family doctor, who informed me there was no sign of any broken bones, including collar bone, I was also told that the arm was in perfect shape according to x-ray. He sent me to an orthopedic specialist, who found fluid on the shoulder, but couldn't figure out the reason my arm was crooked, and wouldn't turn over. They thought it was radioulnar synostosis ( think I spelled this correctly), but x-rays proved that wrong. After another hand specialist, and a shoulder specialist, I was told that it was a shoulder injury. At a completely separate Dr. visit, my hbp specialist asked me why I wasn't sleeping well, and I explained. At that point, I was referred to another dr. who did an emg, and mentioned Erb's palsy, and then sent me to a specialist dealing with the spine. I was finally told that it was Klumpke's, and that at this point, there was not much we could do except handle the pain, the paralysis and nerve damage are permanent. He said we could do therapy, but it was possible that it might cause more pain, and possible injury. He did, however, offer his services at any time, and assured me that he would be more than willing to give Cortizone injections, or prescribe creams, since I did not want to take pain medications unless absolutely necessary. Just wondering if there's anyone else out there with this diagnosis, and I guess I'm both satisfied to finally have an answer, and also sad that there is nothing I can do. I have so many questions, I have been told by the other specialists that the pain should never worsen, since it is an old injury. Why the sudden pain? Why can I carry a 5 gallon bucket, but not hold a kindle? Is there anything I can do about my pinky and arm going numb as I sleep? He assured me there is no further loss of movement, so why the pain doing things I used to do? I normally don't complain much about it, and I want to try to maintain a good attitude about my situation, it just felt so good when I accidentally found this forum and saw that others had the same problems, and understood what I was going thru and concerned about. Thanks for any help, and I hope that my story might encourage someone who is going thru this that they are not alone.

Wow
Thanks for sharing,
Many of us do have that bent arm, some call it a waiters arm to
1952 ,My birth erbs came with a broken elbow and scapula, Dam Forceps
You like many of us here posting never got help from a doctor overtime ether.
Many have found a doctor who did help to by many posting here.
Finding the right doctor is a Quest, you like many here still are left in Limbo, without a true direction Pain management has been responded to many times in posts. Some use a pillow to support and reposition the arm and get the gravity off the arm sitting on a chair or laying in bed.
Some post how floating in a pool or a hot tub help to, Me to
Some post they found going to a Chiropractor help.
Deep massages were mention to , me to
Scare tissue happen overtime and mess with the blood flow and increase pain and Numbness, it also cause color change in the arm. I think and others posting here to ,that one of the worse part of these injury is scare tissue ,
Finding a way to get past the pain is more in a muscle relaxes and sometimes pain killers to. But trying to get the scare tissue out is a good try to by others posting here
This will give you a start to find other past post here to.
You are doing great!!! Tenacity to try is us
Just Thinking
Tom

Thank you so much for the response! I wasn't aware that the scar tissue could get worse over time. Can this be improved? I love music, and tried to play the standup bass for awhile, but the pain got so bad, I have had to stop. Just curious, does anyone have any solutions to arm numbness at night? I usually sleep on my side, and either way I turn, my arm has to be tucked against me, hence the numbness. Glad to be able to ask questions to those who actually understand!

Ok,
Night time numbness, and arm falling asleep, me to.
I put a small pillow in my arm pit or I crisis cross my arms when I sleep on my side
Something you may want to try, using a pillow to change the angle of your arm Trial and airer, trying to not cut blood flow off or slowing blood flow
Doing what you want to do is great to get rid of anxiety. being distracted from your limitation and finding your way to adapt is Joy
Side affect in doing so is more pain, Sorry we all do this in adapting with or without a arm.
There got to be something about scare tissue and blood flow , ask your doctor about this. It been sighted far to much in past posts.
When you find things you have adapted to or find something new to try and it Hurts more , then just give yourself more time between trys.
I think the best Therapy comes in things we learn to adapt to in life, Ok that about ever post I read overtime, Blows me away thing others find to adapt to and deal with the extra pain in trying. I am in AWWW. You really are doing Great!!! You try your best To!!!
Tom