Name : Heather Deanna Oltmanns

E-mail :

Adult:  29 years old

City, State:  Roanoke, VA

Areas affected:  Left arm

Personal History:

Hi, my name is Heather and I am 29 years old. I was diagnosed with melorheostosis just this month, Dec. 2004 and I live in Roanoke, VA. The only area that is affected that I know of is my left arm. At the beginning of Nov. 2004 I noticed that the underside of my left arm was sore, near my elbow, but I knew that I did not injure it. When I looked at it I realized that there was a large lump there. I don't know how long this had been there but now it was hurting. I went to my family doctor to get a flu shot and showed them my arm so they took an x-ray. They could definitely tell that something was there and that there was a smaller lump near my wrist, but they didn't know what it was so they referred me to an orthopedic doctor. My family doctor thought that it might be a cyst since I have had several that have had to be removed, from my stomach(2), face, and left finger. So the orthopedic doctor sent me for an MRI and a CT Scan.

He told me that they thought it was either a tumor or melorheostosis and that I would have to have surgery. He said that no one in my area does this kind of surgery and that I would have to go to the University of Virginia in Charlottesville, VA or to North Carolina. I went to see an orthopedic doctor at UVA and they confirmed that it was melorheostosis and that I would need to decide if I wanted to have surgery or not. In just the month and a half that it has been hurting, the pain has gotten much worse. At first it only hurt if I rested my arm on something, like a tabletop. But now it hurts every day even if it is not touching anything and it is making my elbow hurt. I am scheduled to have surgery in Jan. to shave the bone down. I don't know what else to do. I don't want to have to rely on pain medicine and I don't know how much worse the pain is going to get. The doctor at UVA said you just can never tell what it is going to do. He also said that the radiologist said that there would be no point in doing a total body bone scan because they only treat the lumps as they cause problems so I do not know if it is anywhere else. I have to wonder if it is though because as I child I would always complain about my legs hurting.  I would be in so much pain that I was in tears and wouldn't want to move around. I also had a "cyst" removed from the base of my left middle finger several years ago and this is the same arm. Plus, I have had carpel tunnel surgery on both hands. Any information would be much appreciated, all of this is new to me. I hate to think that surgery would make it worse but I don't want to depend on meds either. It's like a gamble either way. Does anyone know if there are doctors's that specialize in only this? Are they working on trying to find out more info about this disease? My doctor said that this is not something that I can pass on to my children but my oldest son, age 6, is now having the kind of leg pains that I had as a child.

Thank You


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