We are appling for ssi disability for Isaiah. Is this a waste of time? Is everyone else doing this too? What other sources of supplemental income is there so that we can provide the best possible care for Isaiah? Do most people with PFFD qualify for SSI?
Has anyone ever used Shriners in Chicago for consultation or surgery regaurding pffd. If so how pleased are you with there source of knowlege? Willingness to work with you and for you? I also have been refered to Mary Free Bed. If anyone has anything to say about either of these two hospitals then please comment. Right now i am leaning toward Shriners in Chicago.
My son isaiah was born on April 14th. He was 5 weeks early but he is doing great. He was born with unilateral pffd. He is completely absent his left femur, nor does he have a knee. I don't believe that lengthing in going to be an option. He is going for his evaluation at Shrinners in Chicago on July 13th. My hope is for Van Ness rotation and hip reconstruction. Then amputate the toes making the ankle a knee. Then Isaiah will be able to wear a prothsetic from knee down. I am open to any suggestions, ideas, feedback, ect. Thank you for anything you might have to say.
My daughter, Casey, is two months old and has unilateral PFFD, class D. She has a foot, tibia and fibula. We are just beginning her treatment odyssey and would love to hear physician recommendations. So far our "home" orthopedic surgeon is Dr. Fitch at Duke. He has a wonderful pediatric reputation and is VERY well respected at Duke. In addition, we will be going to Shriners Hospital in Greenville, SC next week. We would like to see two other doctors before we begin her treatment path. I don't believe that lengthening is an option for Casey.
Hi my name is John. I'm 24 years old, married and the father of a beautiful baby girl. I have severe PFFD. I was born with only my tibia and foot. No femur, knee, or fibia, or even a hip joint. Just a tibia connected at my hip with tendons and muscles. My foot was amputated when I was three and my heel turned to the bottom of my tibia. I wear a prosthetic leg, with the C-Leg knee. Growing up I was always as active as any other little boy. My mother helped me stretch my stump every night so my tendons would stay loose.
Hi, I have an 18th month old daughter that was born with Congenital short femur/PFFD with her left leg shorter than her right. Since she was born I have been taking her to the Childrens Hospital in Oakland, but I recently decided to change over to Shriners. Basically my two options are either lengthening or amputation and I don't know what to do. Can anyone who was gone through either one give me any feed back about your experiences. Thank you
so, I don't understand the A, B, C and D classification. Is A like a mild form and D extreme? I asked my parents and they don't know what I am either. So, I'll just explain it... I was born with out the Ball of my hip (I have a socket), my femur was a lot shorter, and my knee was pretty much normal, it's a little smaller and has a tiny knee cap though compared to the other one though. Anyone know what that falls under maybe...I'm just curious because I'm trying to search for people similar to me.
I have had quit a bit of lengthening done and during the last one, my knee dislocated. Has anyone had this happen? The doctors were able to put my knee back into place but over time it's slid backwards again. I'm too old to see my doctor at Shriners that have done all of my surgeries, and every doctor I've gone to since doesn't really know what to do with me. I can't get a knee replacement or anything. Anyone had this problem??
My name's Jessy and I'm 21. I have PFFD in my right leg and I wear a brace, and use crutches. Until I was 7 I wore an extension Prosthesis. Then I had my first lengthening. I just remember my knee being stuck bent for 6 months mostly (because the muscles were so tight), and I spent a lot of the time in the hospital doing physical therapy. I don't remember exactly how much length I got each time I wore the Ilizarov, but my mom told me that altogether I've gotten 13 inches from the 4 lengthenings I've had.
