Name : Hannah (child); Eva (mother)
Child: 10 years old
Location: New York
Area(s) affected: Left fingers, hand, forearm, elbow, upper arm, shoulder
At the age of 2, we noticed that my daughter wasn't using her left thumb. We went to the Hospital for Special Surgery and she soon had an opponensplasty (sp?). They said she was missing a muscle from her thumb, so they moved a muscle from the side of her hand to her thumb. The doctor thought she would bounce right back and wouldn't need any therapy. 8 years later we're still in therapy.
About a year after the surgery, I noticed a cottage cheese like texture to the top of her arm. When I pointed it out to the doctor, he diagnosed her with melorheostosis. As the years have gone on, it's progressed tremendously. She barely uses her left hand. She has serious contracture in her index finger (it's completely crooked), she cannot oppose (turn her hand so that the palm is facing down), close to zero range of motion in her wrist and tingling in her fingers. Her therapist says this is because the bone is pushing down on her nerves and she is losing sensation in her fingers. Her elbow is contracted as well and her range of motion in her shoulder is limited. Her hand is somewhat deformed looking. I think the term they've used is flat palmed. Aside from that, her left arm is significantly shorter than the right and the left hand is also much smaller.
Over the years we've done all sorts of splinting, casting, hydrotherapy, p/t, o/t, massage therapy, and hand therapy. We've also done gymnastics, swimming, dance, soccer, anything I can do to keep her moving at the joints.
I saw her surgeon about a year ago, and he basically said there is nothing to do at this point. He suggested considering surgery when she stops growing to position the thumb so that it could be more functional. I'm feeling hopeless in terms of what doctors can offer me. Like I said, I keep her in therapy and physically active in the hope that it will at least slow the process down.
Return to Personal Histories