Name : Brandie Mailand (Carlson)

E-mail :

Adult:  26 years old

City, State:  St. Paul, MN

Areas of body affected: Right leg and foot, left foot, right hip, lower back (possibly more)

Personal History

Soon after my birth my mom noticed that the toes on my right foot looked funny, but when she asked her doctor about it, he said it would get better when I learned to walk. When I reached five and my toes hadn't gotten better, and my ankle now looked deformed as well, she took me to the University of MN Orthopedic department for an assessment, and I was diagnosed almost immediately with melorheostosis. The doctor who made the diagnosis and worked with me for 10 years afterwards was James Ogilvie (SR.).  

By the time I was 7, my right leg was so much shorter than my left that I walked on my tiptoes on the left to favor my right, which shortened the Achilles tendon on that side. I had surgery to lengthen it and physical therapy to re-learn how to walk properly. When I was, ten my doctor and my mom decided that surgery to lengthen my right leg (now two inches shorter than my left) would be beneficial, so I had a series of surgeries that included having surgery on my left knee to inhibit the growth of my left leg.  As part of the process of lengthening my leg, the muscle had to be lengthened along with the bones, and the physical therapy used to achieve that end was the worst pain I have ever had in my life.  My mom was the one who had to do the twice daily routine of bending my leg 90 degrees, which I had to endure by smothering my face in a pillow, because we learned the hard way that people in our apartment building didn't want to hear a child screaming in pain.  I still don't know how my mom managed not to faint during these sessions, because as a mom myself now, I don't know how I could cause my child that much pain without passing out. The unfortunate thing is that the surgery on my left knee didn't work, so now after all that, my legs are back to having a difference of about two inches. Both of my ankles were deformed, and turned out to the side, so I wore braces on both legs to try to straighten them. It worked marginally on the left, so I had surgery on my right ankle when I was 13 to straighten that ankle enough to walk semi-normally. At one point my doctor tried to get me to wear little braces that went inside my shoes to try to "normalize" my feet a little, but they hurt so badly to walk in that I refused to wear them, and my doctor gave up on it. 

The last time I saw my doctor was when I was 14 or 15, when he said there was nothing else that could be done. The state declared me disabled when I was a child so we could get on SSI, because my mom couldn't work (she had her own health problems). I vaguely remember my doctor saying that what I had was so bad that I would probably be in a wheelchair by the time I was 19. That hasn't happened yet, but I can't say that it won't happen in the near future. I can't exercise, and I've never been able to run, not even when I was a child. I have had weight problems because some days I can't move well enough to do housework and take care of my 3 year old.  There is no way that I can do what it takes to lose weight, unless I stop eating! I live with pain everyday now, and frankly haven't even tried to talk to my doctor about it. I haven't seen an orthopedist since I was a teenager, and I thought my disease was so rare that there would be no way anyone else would even be able to find out about it. I don't want to live everyday of my life on painkillers, but I think soon I won't really have a choice. I haven't had X-rays in a long time, and judging by the pain I have, my disease has probably progressed up my back, and maybe in my arms and hands. Part of me doesn't even want to know. What I do know is that it is a relief to know there are people out there who know what I'm going through. My husband lives with me, and it, everyday, but I don't think he could possibly understand the worst of what I go through. Good luck to everyone out there dealing with this, and God Bless!

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