Name :    Tammy Vanderboegh

E-mail :

Adult:     35 years old

Location:  Tulsa, Oklahoma

Area(s) affected:  Right tibia

Personal History:

I was 19 when I was diagnosed. My physician was Dr. Eugene Feild.  My right lower leg was giving me pain. My differential diagnoses included Ewing's Sarcoma and Paget's Disease. I went in for an emergency biopsy because he was positive I had cancer (from x-rays) and he was "pretty sure" that he would have to cut my leg off, which he discussed with me prior to surgery.

I had the biopsy (the tumor came out of the posterior side of my tibia and runs almost to my ankle) and histology came back negative. It was the subject of a tumor board, Dr. George Schnetzer consulted, they did not know what was the problem. Everyone was dumbfounded. Three months later a radiologist in Oklahoma City diagnosed me with melorheostosis.

They told me it was something I would just have to live with.

My leg is very hypersensitive and I get weird pains several times a week, but I will deal with it. This is a lot better than the alternative (going through life without a leg.) I would like to know what happens when it gets to my ankle.  If anyone can give me any more information I would really appreciate it.

I would like to hear from anyone else with this.


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