PFFD VSG2

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.

Neat news story out of Oklahoma.

http://www.newson6.com/story/17160467/prosthetist-draws-inspiration-from...

I am an HR professional searching for solutions for one of my employees whose dependent child has PFFD. The health insurance carrier has denied the shoe lifts for the patient. We are going to start the appeals process since the insurance company policy wording states that, for reasons that are totally beyond me, only patients with a diagnosis of diabetes qualify for shoe lifts, even those who have PFFD. Go figure.

My daughter is 23 and suffers from PFFD. She was a Shriners patient until the age of 20. She received various suregeries to help with her length and up until a few years ago wore a 1/2 inch built up. For the past year she has began to complain of sever pain in her hip joint (which we were informed by Shriners, would eventually need surgery/replacement).. and has become quite debilitating. We live in Alabama and are searching for a doctor specializing in her condition. We have yet to find anyone.

I am currently 6 months pregnant with a boy. His right femur is half the length of his left femur. He only has one bone in his lower leg, and club foot on both feet. My doctor here in Tulsa has never seen anything like this and doesn't know what to say but "let's wait and see". I have two other children (age seven and four), and every time I see them running, jumping, or climbing, I wonder if my youngest will ever do those things. I haven't told anyone about his condition except my husband. I don't think either of my parents will handle it well.

Quick reminder - the monthly chat is Thursday March 15 at 8 PM. This chat is specifically for conditions such as Congenital Femoral Deficiency (aka pffd) and Fibular Hemimelia.

For more info, or for the password, please contact icll (at) lifebridgehealth.org . PLEASE be sure to give a brief description of your child (age, diagnosis and treatment type thing) so that we know you aren't one of the spam emails we have been getting lately.

Lee

I am interested in finding out if anyone that has had the Van Ness Rotation surgery has problems with thier leg toeing-in while walking. I have always heard that the Van Ness Rotation de-rotates, but today a doctor told me that my toeing-in is at my hip and my hip has arthritis. I am not convienced. I get so frustated when you go to the doctors and they don't touch you, watch you walk maybe 12 feet, and look at a couple x-ray. Which I might add were taken while I was weight bearing, completely different from other x-rays in the past.

Quick reminder - the monthly chat is Thursday Feb 16 at 8 PM.

For more info, or for the password, please contact icll (at) lifebridgehealth.org .

Dr Herzenberg and Standard should both be there.

My 17 month old boy, Isaac, has a 1 inch shoe lift. Just wondering if anyone who has used shoelifts goes to a specialist that makes lifts specifically for people with pffd? The man we have gone to for lifts has never made one for a child before and also, he only makes them typically for people with very minor discrepencies. Any advice on this subject would be appreciated , thanks, Katie

Hey, My name is Megan Miner....I wrote my story about 3 years ago when I joined and decided it was time to re visit this site and update yall on all the exciting stuff thats happened to me since i left yall for about 2 years. For those who don't know my story, I'll give you the cliff notes version. I am bilateral, class D. When I was a little, the doctors wanted to amputate both of my feet and one doctor Dr. Tosi refused. She said she had a gut feeling that if she moved the mucsles around in my feet that maybe something extrodinary could come out of it.