Name :  Sally Hathaway

E-mail : 

Adult:  30 years old

City, State:  Cincinnati, Ohio

Area of body affected:  Right foot and ankle

Personal History:

I was just diagnosed with Melorheostosis yesterday, Oct. 11, 2003. I had increasing pain in my right ankle over the past few years and kept thinking I had injured it somehow and it would go away. At the urging of my husband and family, while I was on maternity leave with my second child, I finally decided to "get something done about it." I went to see my Primary Care Physician who ordered an MRI, thinking it was not bone rather ligament damage or something. The result was immediately "Findings consistent with Melorheostosis affecting several bones of the foot and ankle." My Dr. sent me to a Rheumatologist, who found it very interesting because it is such a rare condition, however he offered no treatment. He couldn't answer any of my questions and said there really was nothing that could be done; I still had the up and down motion used to walk, so just take Advil for the pain. He copied a few pages out of a book for me to read about the condition and said that I may want to see an Orthopedic doctor if it gets worse. My range of motion is so limited I can't exercise like I used to. If I step on the smallest pebble, the pain is so great I almost drop to my knees, which scares me to death because I have a newborn and 2 year old that I carry around all the time.

Would an orthopedic doctor be worth seeing?

Is there any surgery available?

Does the bone keep growing?  Will it just keep getting worse?

If anyone can answer any of my questions or has any advise, please email. I have just begun my search for answers.

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