Story submitted by Mary on November 27, 1999 at 18:47:42:
Mary is 33, from Arcadia/Indiana/United States.
Family:Husband with BP
Hi! My name is Mary and my husband has Brachial Plexus and we are just finding out. He is 34 and when he was born they say he cried all the time. We do know that the doctor used forceps on him during delivery. Now we know that he must of been in pain and that is why he cried all the time. When he was a toddler his mom took him to a childrens hospital because his arm and hand were growing and becoming deformed. Also, she said he never wanted to use his left arm and hand. At that time, they did not know what was wrong with him and they told her that he had a monkeys arm. They wanted to do some crazy surgery where they said he could be paralyzed from it. They scared her off and she never went back. He would use his arm as much as he could and it really did not seem to bother him to much, but as he got older and the arm and hand grew it became more deformed. He did not have a muscle in this thumb (which they put a tendon in place of a few years ago) and his first finger pulled toward his pinky (as he gets older it still is pulling that way even though he had surgery on it too a few years ago). His middle finger is bent and turns toward his first finger. As he got older it became harder and harder to use his hand. He could not tie his shoe or hold a cup. His arm is shorter and smaller than the other and he does not have any reflex in it. He has had a surgery on his shoulder about 7 years ago because he started having alot of pain when he moved it. Still with all these surgeries they never said anything to us about him having BP. Now he is having terrible pain in his neck and this has been going on for about 3 months. The pain can sometimes be so intense that it goes up his face and down his arm into his fingers. He has alot of numbness in his face, arm and hand. He has had two MRIs and an EMG but the doctors still do not know anything. Also, his arm and hand get cold easily. From the MRI the doctors do know that he has carpel tunnel badly and he has some kind of extra fiber in his neck but they don't know what it is. It seems that that is where all his pain stems from. He tends to tilt his head all the time. At this point he has been to 3 different doctors and this last doctor is the one that said he needed to go to a Brachial Plexus specialist. He doesn't want to go because everytime he goes to a doctor they put him through alot of pain and tell him there is nothing they can do. That definately is not want we want to hear. I hope there is someone that can give us hope and can relate to what he is going through!!
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