Personal Stories

Hey everyone its been awhile since I've been on the website, anyways let me tell you alittle bit about my self I am a 22 years old female with my left leg amputeed. When I was 1 year old I was I got my first surgery. and after that I was told that nothing else could be done to make me walk better, well that was what my parents said. All doctors always said to me and my parents that my condition is so rare that alot of the doctors didn't want to miss with it. I finally found out about Dr. Paley that he was moving right around the corner from me. I called and set an appointment.

Hello all and just a quick note to say that I have been so busy with all the kids home for the summer I have had no time to sit down and relax....THANK GOD school started today. All but one and he starts tomorrow. I will be glad to get back to a "normal" day if that possible. Well I have missed talking to some of you. Take care and chat please.
Barbara

Hey everyone, just wanted to update on my visit with Dr. Paley. In case anyone hasn't read my story here's a little summary. I'm 22, have PFFD of one leg and have never had any surgeries whatsoever. I have wore a long prosthetic my entire life. My length difference (more than I thought it was when I first started writing on here) is 10 inches. I did a little research a couple of months ago on treatment and options when I discovered Dr. Paley for the first time. Most of you have probably heard of him but he does lengthening AND the hip and knee corrections that come along with having PFFD.

On August 6, 2009 Justin had his Super hip/knee surgery.
It went longer than we or the Dr. Expected as there was more that need to be done. Justin is recovering. He still says this is the way to go!!!

Hi! I posted the blog a month ago "Summary of my story." I just wanted to update everyone on what's going on with me. Since doing my research a month ago & joining this site I have decided to make an appointment with Dr. Paley to see about leg lengthening. I haven't had any prior surgeries, I just wear a prosthetic now and I get along well, but since hearing about Dr. Paley I wanted to see if lengthening was an option for me. I have made my appointment for August 7th. I will update after my appointment once I know more about my options.

God Bless
-Julie

Hi,

julian is now 1 years old, we went to see dr.davidson @ chop in philly. what a long visit. i just get so frustrated with everything. now they gave me a script for him to try a shoe lift with a wedge or pipe in foot im not sure what that means. his leg is now about 4 inches shorter than the left. he wants to walk so bad but cant. im getting so frustrated. 1st the drive there is 2 hours, we wait for about 1 hr ,1 1/2 hr for the dr to be in the room maybe 10 minutes and say we'll see u back in 6 months & do xrays. he wants to see if julians hip will form any more.

I was born with PFFD in 1986. My parents discovered the Shriners Hospital in South Carolina when I was 6 years old. Until the age of 18 that had been been my place of treatment. We had been encouraged to go with amputation. My parents felt even at the age of 6 it was my decision. Of course, at age 6, 7, 8 (every time it was brought up by any doctor) I opted out. The decision to keep my leg wasn't even a question and at age 22 I am still happy with my decision not to go with amputation. I think it was the best decision for me personally, although I know that it may not be for others.

Hi everyone,

My son Zach has pffd on his right leg. We met with Dr. Davidson on 5/6 and we now have a timeline for his first surgery. Zach needs an inch orthodic list (which i am attempting to accomplish) and he will have two surgeries. The first surgery is to be when he is between 4 -5 years old. Its definately different. i see my little man walking on one set of tippy toes but boy does he move. i really want to get him sandals for the summer but really dont know if i can being he needs a lift. I'm going to try. can anyone share as to what i can expect now that he is moving?