I am new to this site and I do not have PFFD. However, I am going to have to choose my form of amputation due to a serious infection and I am looking into the Van Nes procedure. I know that it is generally used to treat PFFD, so here I am. I'm interested in any kind of information anyone can give me on it. I know what it is and how it works, but I am curious about the long term; complications, success stories, anything at all. I appreciate it.
Thanks,
Ivy
Quick reminder - Dr. Standard is hosting an online chat on Thursday June 23 at 8 PM EDT (US). This is on the subject of congenital limb differences, which includes PFFD/CFD as well as fibular hemimelia and some others.
This is a great opportunity to come chat "in person" with one of the surgeons at the International Center for Limb Lengthening, to get some initial information without having to travel. It's also a good way to meet other families with similar concerns. We have had more than a few pregnant moms do this chat too, for fact gathering.
Hi All! It is great to read everyone's experience with PFFD. I am a 27 year old female with unilateral pffd (right leg) and my parents chose lengthening for me along with using shoe lifts for any discrepancy still left. Though doc's have been able to lengthen my leg a total of about 5 inches, I do still have a diff of approx. 4 inches. I have an amazing life w/ amazing family and friends around me who have always encouraged and allowed me to be myself. I define my birth defect, it doesn't define me!
Hi there I am from Edmonton, AB. i am 21 weeks pregnant and just found out our daughter has pffd, I am devastated. The doctor gave us the option of terminating the pregnancy in the next week, but I cannot do that. Her right femur is about half the size of her other one right now in the scans. Her lower leg bones are fine and has 2 feet. I am really sad and scared, will my daughter have a "normal" life with a prosthetic leg? We met with a great lady who works with pffd kids in Edmonton and she gave us some great options.
Just a quick reminder that the Rubin Institute doctors will be doing an online chat on congenital limb differences this Thursday.
This is a great way to get more information and opinions, as well as to meet other families for support.
Please contact icll (at) lifebridgehealth.org for additional information. (Note this chat requires a password, so you will need to contact us ahead of time).
I would like to find out thoughts from other people, whether it be parents and or actual older children or adults living with PFFD on what treatment is the best or why you think it is the best. We were given 3 options and I am noticing from researching allot of people did nothing except get a prosthetic leg over there own leg and foot, I wonder why we weren't given this option, or is it just a given to do nothing?
My name is Christa Clawson and I live in Saint John, NB Canada. My husband John and I had a beautiful baby girl 6 weeks ago who's name is Ella Kathleen and she was born with PFFD in one leg also in that same leg, she has NO fibula either, but has a great working foot.
Hi
My husband and I run an orphanage in southern Mexico. A few months ago we were asked to receive a three month old baby girl who had been abandoned close to the border of Guatemala. We were told she had a handicap and one of her legs was shorter than the other. She has been with us for seven months now and it is clear that she has PFFD.
