Name : Tracy
Adult: 22 years old
Area(s) affected: Left and Right Arms and Hands
I first visited the Shriners Hospital when I was an infant. My left arm is smaller than my right, and my fingers are crooked. I was fitted with braces for my hands to wear at night and my parents did a PT routine at home. I was diagnosed with Melorheostosis when I was around 5. At 5 years old they cut the ligaments in my fingers, and placed pins in them in an attempt to straighten them. My left pointer finger straightened out, my right ring finger became more bent down and to the left- all the rest of my fingers returned to how they were in the beginning. I was fitted with new arm braces each year (to wear at night) and did PT at home and in school. In my early teens they cut my left humerus, turned it, and placed a plate with four screws in my arm. This was done because I previously could get my arm far behind my back but we determined it would be more useful to get it more flat towards my face. The plate was later removed. Around age 15 we met with a Doctor at the University of Minnesota, he discussed some bone lengthening procedures which we opted out of. He basically told us it wasnít genetic, and wasnít going to get worse or better. That was the last I really thought about Melorheostosis until recently.
I was out of school and over 18- there was never any follow-up from any doctors or PT from school. I began researching on my own- found out it is progressive and can be very painful. I have a dull achy pain when I work on something too long, a sharp pain occasionally, and a tingly feeling that happens quite frequently- but thatís it. My hands look about the same, in proportion to my body, as they did when I was younger.
I met with Dr. Moran at the Mayo Clinic in Rochester today. He confirmed without a doubt that it was Melo. He was concerned with some carpal tunnel in my left wrist especially. He also said there were some early signs of arthritis. I am going back in a month to get an EMG done, and possible surgery on my wrist. Iím scared for what the future might bring; itís hard knowing that there is nothing I can do about the progression. Iíve gotten used to doing everything with my hands the way they are, and Iím not ready to be done yet.
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