I just wanted to give a little history, hopefully provide a little encouragement, and just see if anyone out there has questions during or before this process. I am now 23 years old and have been with Paley since before he was on his own when I was 8 months old. I have unilateral pffd with out a fully formed hip and knee. When I was finished growing I was going to be 22 inches from the ground. I had 6 lengthenings and took a break to finish high school and college. I had my 7th lengthening in Dec.
Has anyone had the Super Hip 2 surgery with Paley? Dr Paley said my daughter needed the Super Hip 2 wich is a little more detailed than the Super Hip 1. I think he has only done around 10 of these. I would greatly appreciate any info anyone can give me on this.
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.
Hello Everyone I would just like to say 1st how excited I am to have come across this website with all this information. I have been on line for about 2 hours reading these stories that I had no idea were even out there! I am completely Amazed. My daughter Brandi is 9 yrs old and was diagnosed with PFFD when she was six months old. I was playing with Brandi on the floor and was looking at legs and discovered that one of her legs were longer then the other..
Just a quick not that the doctors at the International Center for Limb Lengthening are conducting some more online chats. The next one is this week on Thursday Jan 14, with one the following month on Feb 11.
Happy New Year!
Just wanted to remind everyone that we are continuing to conduct our monthly limb length discrepancy chats. The next one is this Thursday Jan 14 at 9:15 PM, and the next one will be the following month February 11th.
I don't know if the new "bone" implanted would "grow" as a person grows. Also there are often also ligament and other issues with PFFD, but it will be interesting to see what will come out of it in 5 years or so which is when they expect human trials.
My son is 20 months old and will be going to get a Super Hip 2 surgery done when he turns 2 years old. Not only does he have PFFD, his femur is growing at a 90 degree angle. So they will need to break his leg to straighten it out and then do the Super Hip 2. Dr. Paley did answer all our questions, so we are sure that he's the doctor to see about our son's condition. I guess we are just nervous about his surgery because he's our only child.
I am happy to find this forum. I am a 43 yr old female with unilateral PFFD. Would love to talk with others about skin breakdown, arthritis etc. Would also be happy to answer any questions for younger folks/parents etc. Just happy to find you all!
draymond
We are home now after our first procedure with Dr. Paley. We went to West Palm Beach Dec. 6 and returned Christmas Eve. Our daughter, now 16 is doing GREAT after this procedure. She required an extra week of rehab stay and we had many frustrations with the communication between Dr. Paley's office and the hospital, but as far as surgery outcomes we are pleased.
If you have an older child that is beginning their journey to correct PFFD/CFD and have specific questions you can email me as well as if you have not been to the new facility at St. Mary's Children's Hospital:
