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.
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.
