My name is Zachery, and I'm almost sixteen years old. I've lenghtened since I was two, but recently, I've run into severe problems. My femur was removed years ago to make room for a prosthetic that didn't work. Paley assumed we would be able to put in another prosthetic, but for that to MAYBE work I'll need bone graphs. I also have a fixator(that's loosening and falling apart) that's been on for over a year, that can't be removed until the prosthetic goes in in at least two months. I wonder, is it worth. I'm considering a whole leg amputation for once in my life. Do you feel much pain in your life, after the procedure. How easily do you move? Can you run, or be athletic very well? Do you have a limp? I'm struggling with a major descision. Any feedback from anyone would be greatly appreciated, especially from amputees.
Comments
Zach, Sorry for the
Zach,
Sorry for the delayed post...These holiday seasons seem to keep us so busy. We were just hoping for an update on how things are going??? Also, you said you have been lengthening since you were 2 years old, just the same as our daughter, and we were wondering what happened that you needed to have your femur removed, and what prosthetic they are putting in to replace that? Also, did you start with Dr. Paley or did you start at another hospital and now you are in Baltimore? Sorry about all the questions, but your story could really be helpful for all the other children who are just starting this whole journey. Our family wishes you all the best, and have a wonderful holidays with your family!!!
Sincerely,
Chuck, Karla, Dylan & McKenna
I'll Be Fine
Hello,
Thank you for showing support. I don't know if you know about me, but i'm sixteen, and have been with Paley since the beginning. To answer your question, I had my femur replaced by an expeimental device called the Phoenix. Five or six of us had it implant, and it failed in almost all of us. It was supposed to be a self-expanding hip, knee, and femur replacement. Mine was put in second, and had the most complications. It popped out of socket five times, and refused to lenghthen. Over two years ago, it began loosening, and Paley was forced to put a fixator on to gain length. He promised to put a permanent device in in august 07(as i am done growing), but it won't be put in until february o8. I was considering amputation, as all other doctors we talked to have basically guaranteed the devices failure. I am reigned to follow Paley to the end, however. He is a brilliant man, and when he presses the issue, I'm loathe to fight it. I would urge you however, to always question him. he's brilliant, but it can't hurt to question his ideas. Just don't question his skill. Stay the course. Experimenting is a true gamble, as i show. Just stay with the norm of lenghtening, and your child will be fine. If you ever have any questions you want ansered, feel free to message me. I don't check my mail often, but i try. Good luck to you and your family and may you have a very merry holiday.
-Zach R.
The phoenix device?
Is it similar to this one http://news.bbc.co.uk/2/hi/health/3917573.stm
Phoenix Device
Yea, the phoenix is quite similar to that. A lot of improvements have been made lately though.