Jessy's story...

My name's Jessy and I'm 21. I have PFFD in my right leg and I wear a brace, and use crutches. Until I was 7 I wore an extension Prosthesis. Then I had my first lengthening. I just remember my knee being stuck bent for 6 months mostly (because the muscles were so tight), and I spent a lot of the time in the hospital doing physical therapy. I don't remember exactly how much length I got each time I wore the Ilizarov, but my mom told me that altogether I've gotten 13 inches from the 4 lengthenings I've had.

Anyway, I finally got motion in my knee again and I started walking with a shoe lift. Then I had a series of hip surgeries...3 or 4 I think. There was no success there. They put a pin in my hip, and somehow I broke it (the doctors told me that a grown man trying to snap it with two pairs of pliers wouldn't be able to break it)...so yeah, who knows how I broke it. And then, get this, I eventually broke the plates that were in there too. I was a skinny little 8 year old, how I managed to break a bunch of stainless steal inside my leg I couldn't tell you. They took out the plates though after the bone healed. Then, I had another lengthening when I was 12 and got some more length. The doctors told me the new bone was strong enough to take the Ilizarov off and I had outpatient surgery and went home only to roll over in bed a few hours later, get a sharp pain in my femur, and look down to see that my femur was bent in an L shape with my knee was turned all the way inward.

This pretty much scared the hell out of me. The new bone wasn't strong enough, it was kind of rubbery still is how they explained it, and it broke. They set the bone as best they could and put me in a spika (sp?) cast. I think they should have put the Ilizarov back on, because to this day my femur is still a little crooked. So I lost some of the length and I was really upset. They then took the growth plate out of my left leg so that my right could catch up a little bit. Then, when I was 15 I had another lengthening. This time they lengthened my femur and my tibia at the same time. This was a big mistake and I wish I would have quit while I was ahead. I was walking with a shoe lift...but I WAS WALKING. I just wanted to be able to walk without a lift on my shoe sooo BAD. I wanted another lengthening to hopefully have two even legs. Well I got two even legs out of the lengthening, but now my knee doesn't work. My knee started to get stuck bent just like the first time, but this time it started to look funny. My ankle started to get stuck too...my foot went sideways and I couldn't move it.

I had lots and lots of physical therapy and my knee started to bend a little bit again (But little did I know that it was bending only because it had contracted back...the bottom half of my knee slid behind the top part). Then my hip started bothering me a lot. After my bone was healed they took off the Ilizarov and put me in a cast. My doctor never once took an Xray of my knee or hip. After a few months she took off the cast and told me I was good to go. My knee looked weird though, and I still didn't have normal motion in it, but she told me to set a stack of books on it to weigh it down and eventually I would be able to straighten and bend it all the way again. Oh yeah, and she told me to walk a lot on my leg to get it stronger. Well, I tried and tried...but my hip and knee were in too much pain to ever get off the crutches completely.

So my parents took me to the Shriners in Portland, OR ( I had been going to the one in LA, San Fransisco and Sacramento, CA). I found out that I've got some major hip and knee problems now. Since I walked on my knee while it was contracted, I kind of wore the bottom part of it funny, and now the top part of my knee won't sit properly in the bottom part. I had the Ilizarov put on and they used it to pull my knee back down and put back in place. It stayed in place for a while, but over the last few years it's slowly slid out of place again. I still have hip problems, and my knee is still screwed up...and now I'm too old to go to Shriners. Hopefully the doctors up at the Oregon Health Sciences University can help me. That is were I am going to go next to try and fix my hip and knee.

That's my looong story for ya. Hopefully it's easy to understand...I'm not the best writer and I don't know a lot of the terminology. But, anyway, if you read this and you are about the same age as me send me a message! It would be cool to hear from someone that has gone through stuff similar to what I have.