Name : Jennifer Gordy
E-mail : gordyjm@yahoo.com
Adult: 27 years old
Location: Parker, Colorado
Areas affected: Left ankle, both feet, hip and arm
Personal History:
I was diagnosed with Melorheostosis at the age of 2 (1980) by Dr. Eilert at the Children's Hospital in Denver, Colorado. My parents had noticed that I was walking with a limp and could not put my left heel down. After several doctors and several failed tests, I was diagnosed. The disease affects my left ankle and both feet (mainly my toes). While the disease is most predominant in my left leg and both feet, I do have it in one of my hips and one arm as well. Since the diagnosis, I have undergone 6 surgeries total. Two different doctors (Dr. Strasburger and Dr. Eilert) attempted three heel cord lengthening surgeries; one when I was 2 years old, one when I was 6 years old and one when I was 15 years old. They hoped that since I had stopped growing at 15, the lengthening would not reverse (as it had done the previous two times). Unfortunately, they were incorrect and finally ended up taking 2 1/2 inches of bone out of my left leg when I was 18 years old which seems to have worked very well. (My left leg was longer than my right so it evened me out).
I also have four toes that are bent (hammer and claw toes) due to the disease and an attempt to surgically straighten them also failed. BTW - my experience with pins in toes is that they DON'T pull out very easily like pulling out a hair - I had to find that one out the hard way (pliers tugging on my newly operated-on toe), they had to take them out in day surgery. My doctor said it had something to do with my bones being denser, probably due to the disease. If you have the option - I recommend day surgery. My toes have gone back to the way they were and I have trouble wearing heels and walking/standing for long periods of time. My feet swell very easily and I am just recently experiencing some numbness on the left side of my left foot. I do still have chronic pain and extreme stiffness in my feet and legs. I have to hobble around for a bit to loosen up in the morning when I get up or when I have been sitting for a long period of time.
However, it has been 10 years since my last surgery and I am able to walk normally, run, play sports, etc. I feel very fortunate to be diagnosed at such a young age and believe staying active has helped the stiffness in my legs to decrease (even a little bit).