You are here

Decision Time

I'm a mum of two beautiful boys the second haven been diagnosed with pffd. I'm struggling with trying to make the right decision for him and I'm very concerned with the extent of the pain and trauma lengthening may cause him. I'd love to hear from people who have gone through this process and the various stages of it. I'd also be very interested to hear from people who opted not to go for lengthening and how that decision has affected their lives both for good and for bad. Perhaps if I had some direct comparisons it would help me make a more informed decision.
Undecided Mum.


I was born in 1967. When I was very young, I had a metal extension brace that looked like a ski on two poles attached to a boot. it was very heavy and before the 4th grade they wanted to do something to prevent me from having a hunchback from swinging that heavy brace around. I'm told that I had no ball in the hip socket, I have no fibula, and my pinky toe never showed up for the party. In one surgery (the first of only two), they did a symes amputation and put a metal plate, sort of L shaped, into my hip. From what I gather doing research, my knee must be a pretty good one because it's still about 98%, just a little unstable. I have a long stump which allows me a lot of control of my below knee prostetic leg. When I was about 13 or 14 they went back in and took out the metal plate, my hip socket had developed enough to support me. Things were a little rough for me when I was a kid. I did the entire 4th grade at home while recovering. Kids are cruel, and there was some teasing, and more than a few fist fights. My parents were compasionate, but not sheltering. If I tried something and failed, the response was always "try again". I'll never forget seeing my step-father cry the day I took my first steps with my new fake leg. It's the only time I ever saw him do that. ::I apologize if I ramble, but I'm 37 now and for some reason it only just recently occured to me that someone else on the internet might be like me.:: That very day, I went home and rode my bycicle without the wooden block he had rigged to the pedal for me for the first time. I began a fairly normal life. I dated. I played football. I marched in the high school marching band. I worked for my father's tree service as a teen, and worked as well as or better than his employees. I went to college. I married, and I now have a son that is 2 1/2 (with NO SIGN of any physical problems). My life is full, and I am a happy man. Some days I'm stiff and achey, some day's I'm not. There are times I take pills to help manage pain, but I do my best to avoid them. I've slowed down a little since my youth, but I still do mostly whatever I please. Technology keeps getting better, and my newest leg allows me more activity than ever before. I can't tell you what to do for your child physically, but more important than that I can tell you what to do for him mentally and emotionally. Dont shelter the boy too much. be wary but not doting. tailor his activities to him, but don't limit him. Push him to try again. always. Listen to him when he fells different, and let him know that he can succeed. Try not to take it personally when he one day says "why couldn't I have been born normal?" because one day he will.
Good Lord, I've written a book! Sorry for the length, I hope it helps, and I'll be checking back.

Hi, Sharri. I'm 28 years old, and I had a tibia lengthening when I was eleven years old. At the time, my parents and I thought it was the best decision, but now I regret it. I was pretty high functioning before the lengthening. However, I walked with what I refer to as a "distinctive" gait and had to wear a lift on my left shoe. I have bilateral PFFD, and I'm pretty short (about 4'5"). While I could never walk far nor fast nor keep up with my peers in gym class, I could ride a bike and play relatively normally.

I had the lengthening done in 1987, and since then, I've had some trouble. I had to have a triple arthrodesis of my left ankle three years after the lengthening, and I've had some knee problems (not that I might not have had those issues without the lengthening). However, I do feel like the procedure actually left my left leg weaker than it was before.

Furthermore, it was a very painful experience. I had the Ilizarov device in my tibia for sixth months, two of which I spent in the Alfred I DuPont Institute in Wilmington, DE for the actual lengthening, which meant two months out of school (I didn't actually miss any curriculum because of the in-hospital school, but social issues developed--it's tough having an erector set in your leg when all you want to do is be like every other girl in your class). I spent a lot of time in recovery; it was about a year after the surgery before I was able to walk without the use of crutches or a cane.

I don't know your son's exact situation, and it may not be all that related to mine, but I thought I'd share my experience with you. Let me know if you'd like to talk more.

Good luck!