My name is Lindsay and i was born with PFFD and it has been the hardest thing on me. I finally want to talk about it. I have had 34 surgeries on my Left femur/hip/knee. I was the first kid to try the new internal lengthening rod which was tough. I just want to know what path everyone else is taking..
Comments
internal rod
ginette mckenzie
hi, my son has pffd ive been trying to find out more about the internal rods, do you mean like a pheonix or an albizzia nail
a friends of mine is trying to chose between fixator lengthening and the albizzia nail, internal rod
id love to talk to you
mckenzie794@hotmail.com
progress with the internal lengthening rod
Hi Lindsay, welcome to the site.
I don't think i've read of anybody on here having the internal lengthening rod, though i remember seeing something about it somewhere online.
How has it gone for you, at 18 have you finished with the lengthening? 34 is a lot of surgeries. I was lucking only ever having 2 relating to this condition. I have bilateral pffd, half my left arm and through knee amp on right side, 24/7 wheelchair user for the last 20 yrs.
Take care,
Dave Bailey
Hi
My name is Sinead, I'm gonna be eighteen in March. I haven't really had any surgeries to my leg. I have it on both legs but my right leg is shorter. Next year, after I graduate I'm gonna finally have my legs lengthened. I'm kinda worried because I heard it really hurts. My doctors say I should just have my foot amputated but I really want my legs to look the same. How was your experience with it? Do you have a myspace? Maybe we could talk.
Yes lengthening hurts, but
Yes lengthening hurts, but it is not unbearable! Thats what medicine is for lol, but seriously I am so thankful that I didnt amputate my leg or foot.What kind of lengthening procedure where you thinking about doing? My leg has been lengthened over 10 inches, not all in the same surgery but I does work and It is well worth it. Any specific questions? I dont mind.
I'm thinking of having the
I'm thinking of having the external lengthen procedure. I don't think I'll get that much length out of my legs because my hip needs to be repaired. My femur isn't attached to my hip. Was it hard to look at the hardware on your leg? I'm kinda scared about looking at that. lol. Oh yeah, how tall are you? I'm only 4'3.