My name's Hannah, I'm 20 years old, live in south England and have lived with PFFD all my life. I have a shortened right leg and use a full length prosthesis. I've never really thought about contacting other people with a similar disability to mine but I feel now is the time to maybe talk to people who know what it's like and am interested in your experiences in life.
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.
We found out around 2 months old that one of my twin sons has pffd in his left leg. I have been doing a lot of research on this subject as we left the orthepaedic surgeon in our area with a lot of unanswered questions. We had a lot of questions answered through Dr Paleys website and we plan on seeing him in the future. We are planning on lengthening surgery when he is around 5 years old. We are trying to stay positive about his pffd but of course its a rare surgery and we are still concerned about him having to get the surgery as well.
You can find more details in previous messages, so I won't belabor it. Just wanted to mention that there is an online real-time chat this week on the subject of congenital limb differences, including CFD (pffd) and fibular hemimelia. If you are looking for other opinions, this is a good way to start. The doctor(s) can even review x-rays if you send them for the chat. Any questions or for instructions, email icll (at) lifebridgehealth.org (sooner rather than later because our spam filter occasionally gets carried away!).
Hey everyone, hope your all doing well and happy!
Just to let you know Tom is now nearly nine and is doing ever so well on his prosthetic leg!
He does everything all the other children do and describes himself as a normal child!
He is cheeky, a pain in the ass, plays footie , has many many friends, swims play mates, and has even managed to just about ride a bike!
We are all very happy for him aswell as his doctor Mr Monsell who is very pleased with Toms prognosis.
I am new to this site but have known about our son's unilateral PFFD since an ultrasound at 19 weeks. We are from Pittsburgh and have seen a pediatric orthopedic doctor at Children's Hospital since I was pregnant. Our son is almost 2 now and has been walking since 10 months and his PFFD does not appear to limit him in any way. He is a busy little guy and an absolute joy! My concern is that we are not being proactive enough. We are due back to see the doctor in two months.
Just a quick reminder that you can chat online with Drs Standard and Herzenberg this Thursday evening to ask about CFD. You don't need to be their patient to participate.
For additional info, email icll (at) lifebridgehealth.org and mention that you heard about the chat on this forum (we've had a few very strange requests lately and just want to make sure the people we give passwords to are legit).
Hi, I was searching online for answers about PFFD and came across this discussion group. I have had 2 ultrasounds this week both showing that my little girl's right femur is shorter that her left, about 2/3 the length. I have not met with the orthopedic Dr. yet so I'm not sure if this is even the diagnosis yet. Just wondering, because of the grueling waiting game, if this is what was seen on ultrasounds of people using this site and were there any other things that the doctors thought it might be besides PFFD. I'm feeling really horrible right now.
