Name : Beth B.
E-mail : firstname.lastname@example.org
Adult: 28 years old
Location: Lexington, NC
Areas affected: Right foot and ankle
My name is Beth. I am 28 years old and have been diagnosed with melorheostosis since I was 25. How I found out about this disease was this: It was August of 2001. I had a 5 month old puppy that I was taking out to potty when I slipped on the stairs and fell all the way down. When I hit the floor, I thought I was really in trouble, as I thought I had broken my leg since I couldn't move. As I laid there on the floor, I prayed to God that if he let me get up and move around, I would be more than willing to do anything He wanted. Several minutes later, I got up, and through pain the next day, I went to work with a limp. I was in HUGE pain but didn't know that it would turn into something AWFUL. I was taken to "Medchoice" by a co-worker, where they really couldn't tell me much, except they thought I had bone cancer. At that time I thought, "my life is over, I am 25, I can't have cancer." Later that week, I was referred to Dr. Sims Riggan, an Ortho, here in Lexington. After a puzzled look, he referred me to see Dr. William Ward at Wake Forest University Baptist Medical Center.
Dr. Ward saw me the very next week and said, "you have a rare disease called Melorheostosis." The disease is so rare, that there are only about 1 in a million." So I sat there thinking, "if there is one in a million, how come I am the ONE?" By 2003, the tumor in my foot had tripled in size. There was literally a baseball growing in my right foot where the arch was supposed to be. In late June of 2003, Dr. Ward scheduled me for surgery to remove the extra bone. The surgery went fine, but while in the hospital, I developed an infection called Pseudomonas. Though like a Staff Infection, this one is much worse. My foot was filleted back open in August 2003 and I spent 2 1/2 months flat on my back, receiving 24 hours of antibiotics through a pickline in my left arm. After recovering some what from that experience, in October of 2005, I went back to Dr. Riggan asking him for a referral to Duke Medical Center in Durham, NC for some HELP!
On November 2, 2005, I saw Dr. Brian Brigman who once again told me that I had Melorheostosis and it had grown back, only this time, it is about the size of an egg, and it is in my heel, and one about the size of a golf ball, which is right above my ankle bone. Surgery is risky. If I have the surgery, I am at a greater risk of getting the infection again, so now I will be wearing special shoes for the time being. I will return to Duke the week of November 7th to receive an MRI to see if the Melorheostosis has spread and how much. At this point, there is really nothing that can be done. I am consulting with a doctor at Johns Hopkins in Baltimore, Maryland to see if I may have any other options.
Please feel free to email me, I would love to hear from other people who have the same disease, at least, to say I am not alone.
The doctors at Duke are sending me for a surgery consultation. They have decided to remove the tumor below my ankle bone which they believe will alleviate the pain associated with my foot. Also my knees are starting to give way when I walk so they are thinking if they take out at least one of the tumors, it will help my walking and strengthen my knees again.
Thanks again for a wonderful and informative website. It has helped my doctors at Duke and Boston with my problem.
Return to Personal Histories