Name : Amanda Newkirk (Parents: Randy and Angie)
E-mail : DonaArbola@aol.com
Child: 16 years old
City, State: Little Elm, TX
Area of body affected: Right Tibia
About a year and a half ago I realized that my right shin was slightly different than my left leg. I wasn't concerned about it until my grandma who was nurse came and visited us in July of 2000 and said that I really needed to see a doctor about it. I went to my regular doctor and had an x-ray done and she thought it was just stress fracture and referred me to a doctor who specializes in sports medicine. When we got there we had more x-rays done and he said that there were two aggressive tumors and referred me to yet another doctor. That is when I was referred to Dr. Czitrom who was a wonderful doctor, but unfortunately is now retired. He had more x-rays done, had me have 2 MRI's, a bone scan, a CAT scan, and then a biopsy (August 2000). After the biopsy they found that the tumors were not malignant, and that I had Melorheostosis. I found that there was nothing really that they could do except surgery and he didn't want to do that unless necessary. In January of 2001 I was started having a lot of pain so they decided it was time to have surgery. So February 1, 2001, I had surgery and they removed the tumors and shaved part of my bone and put a gel inside of my leg to help it heal. It took quite awhile for my leg to heal after surgery and I have been going back and forth for follow ups ever since. Then in July we found that they had grown back. I went back to see a new doctor yesterday (1/25/02) and he said they had not grown anymore, but that I am not going to be able run or do anything like that and the pain won't go away unless I do something to control it. Also if I do not control it I will probably wind up having surgery again. So I am now taking Arthotec an anti-inflammatory, the doctor said for me to take them twice a day for a week and a half and if there are any problems such as it making me sick then I will have to try something different. It is pretty much a guessing game until he finds the right medicine for me. He also said I will probably be taking these medicines for a long time, which I am not to thrilled about.
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