Juliemn's blog

My first surgery to correct my hip & knee was in Feb 2010. (Sorry it's taken so long to update!) The surgery lasted nearly 15 hours. I was in the hospital for 9 days & I had so many plugs and drains in me that I lost count. I was in ICU the first 3 days. My incision starts at the top of my hip and goes down the side of my leg wrapping around my knee. I had to be lifted from my bed to a stretcher twice a day to lay in an oxygen chamber. The first 3 tries didn't work because the pressure in my ears caused too much pain.

Update: My super-hip and knee surgery with Dr. Paley had to be rescheduled because I came down with bronchitis. My NEW surgery date is going to be Feb-18th. I was in Florida last week because a media crew was interested in hearing my story. I did some filming while I was there...big step for me considering my condition is something I really just now started talking about openly. I don't know when or where the video will end up but it's out there. For those of you that don't know, I was born with PFFD and at 23 yrs old have a length difference of 10 inches.

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.

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

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.