Name : Shelbi
E-mail : firstname.lastname@example.org
Adult: 22 years old
Location: Benton, Arkansas
Area(s) affected: Left knee and shin bone. Left foot and three toes. Right side of face and skull base.
I found out that I had melorheostosis when I was 11 years old. I was babysitting & tripped & this huge bump came up on my foot. My parents thought I had broken it & that it was just really swollen. When we got to the ER, they did an X ray & told me they thought that's what it was. I was referred to an orthopedic surgeon who confirmed the diagnosis. I had a doctor already treating me for arteriovenous malformations of my right arm, so they got together & decided the two were connected somehow. A few years later I started having trouble seeing color out of my right eye, & had constant headaches. A CT scan showed I had bone compressing my optic nerve, which was also causing vision loss. I had neuro surgery that year & as of now, it hasn't seemed to grow back like they thought it might. They did a full body scan on me & it showed I also had it in the base of my skull & my face. And this is along with having being diagnosed with fibrous dysplasia too. Basically they explained it to me as wherever I have melorheostosis, if trauma happens there, my bones will stay that way. Well a childhood accident of a broken nose has deformed my face & I finally get to go in next month to see if they can shave the large bone bump down. The doctor said I had to wait til I was done growing before he would attempt it. So far the only pain management has been OT & hydrocodone. I was hoping that it would hurt less as I got older, but for me it seems to be much worse. Also I've had 3 surgeries removing random tumors that have been showing up on X ray, and the biopsies showed that there were pieces of bone inside of them consistent with that of melorheostosis. Hope this helps.
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