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Surgeries and Hospitals

Discussion about hospitals around the world for PFFD. Not just the surgeon, but the followup care, insurance issues, administrative care, etc.

Hip and knee replacement and quadroplasti in one???

Had anyone had all 3 in 1 or atleast 2 in 1?!?! I am scheduled to do all three in June and need to talk with some people first!

dealing with pffd.

Hi my name is shannon. I am 21 years old and I have pffd. we I was 7 I had my first lengthing surgery and of course it was scary. there was a problem with my bone harding to fast so that surgery didnt work very well. the doctors than had decided to amputate and the day before my surgery my doctor came in and had said I am so sorry I cant take this girls leg. He said I have another idea and he procedded to say that no matter what my knees would never be in the same place whih is true if he amputted my leg. He than said how about we lengthing the tibia since it didnt work on the femur.

Limb Reconstruction in the UK?

I was wondering if there is anyone in the UK has had experience with the Nuffield Orthopaedic Hospital in Oxford? It looks quite good in terms of limb reconstruction and prosthetics for PFFD. I need to be transferred from Scotland down to England for specialist help. I'm wondering if it's the next best thing after Dr Paley, especially for those of us who can't afford the surgery in the USA.

Help..bilateral above knee amputation outcomes?

My five year old son, Cai, had bacterial menegitis as a baby and it caused a lot of tissue damage in his legs. We had multiple skin grafts and a muscle removed from his lower leg when he was recovered from his illness at Shriners Hospital in Cincinnatti. Since then he has been seen regularly at Shriner's in Lexington to monitor the development of his legs. X-rays from early on showed that his bone growth plates in both legs were severly affected by the menegitis and the head of his femur bones have failed to form correctly.

Hip Replacement Surgery

I'm 29, in Phoenix AZ and have PFFD. I have been looking for a doctor to start my procedures, and I've done a bit of research. I have looked on the internet ( ) and found a doctor who looks to be excellent. Dr. Kozinn with Scottsdale Joint Center ( has excellent reviews and new technology.


My daughter will have to have another surgery this year to fuse her knee to the bones in her lower leg and try to stablize her hip. I am just wondering if anyone else has had this done and if it has helped. I do not want to put her through the surgery if it is not going to help. She is 5 so it will be different than when she was 15 months and had surgery. I would appreciate any advice you all can offer.

what to expect after super hip super knee surgery

Our five year old will be having her first surgery this upcoming January. We weren't expecting it until much later. In fact the last doctor she was seeing took a "wait and see" approach and didn't recommend it until she was ten years old. We just met with a new orthopedic surgeon who is familiar with her condition. He recommended the super hip/knee in January followed by a lengthening at about age six.

Looking for Medical advise & Help

I gave a birth to little cute boy last july 2010 with PFFD and FH. I consulted many Doctors here in my region and see what could be done for him..... each one is telling something different than the other ....... I found very nice ortho-pediatre "Prof" here in Dubai but the cost is very very high and medical insurance doen't cover the birth defect.....

Please help me to find some insurances that cover the case or hospitals that can do it for free or a partial payment. I don't mind to travel anywhere


To Syme's or Not to Syme's...

Hello everyone! My name is Megan and I'm a 20 year old university student from Iowa. Currently, I have a big decision to make and was wondering if any of you could give me some input. I have never had to have surgery to correct any aspect of my affected leg. I currently wear what is described by my prostheticist as a "clam shell" prosthesis-fiberglass, with a door fastened by velcro- and it had been working quite well for the first 18 years of my life.


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