Hi - We went to see Dr. Paley in October for our son. He is almost 6 months old now and has class D pffd affecting his right leg. Dr. Paley said that lengthening is not an option for him. He said that our best option would be a brown rotationplasty. I was just wondering if anyone has heard of this or has had the surgery. I am trying to get some information on what when well with the surgery as well as what could go wrong. He said that the earliest he would do the surgery would be at age 2, so luckily we have time to do a lot of research. We also went to the shriners for another opinion and they mentioned it is a risky surgery and the leg could rotate back causing additional surgeries and problems. We will also be going back in April to be fit with a prostetic so Sam can start walking. If anyone has any comments on what to expect, any thoughts would be appreciated. Thanks - Debi
Re: Brown Rotationplasty
Hi,
My son, Jonathan, his 7 months old now and he has a class D pffd affecting is left leg. We told us that tree options were possible: rotationplasty, foot amputation, or keeping the foot and use the prothesis without surgery. This was when we had the first appointement when Jonathan was about one month old. We will have more information later when our son will be older. We told us it was to soon to take any decision. Some information will only be available later. We talked with some people that had to take this kind of decision in the past and it seems that it's different from one person to another. What might be good for a child, may not be as good for the other one. Personally, I'm afraid of the rotationplasty risks and I wish Jonathan can get as less surgerys as possible, but I heard that the complications with that particular surgery are rare.
I want to learn more about all this, and, just like you, I will be more than happy to hear about other people experiences.
By the way, we also went to get a second opinion from another doctor (Shriners and Ste-Justine hospital). I think it's important to do so.
Thanks.
Marie-Josée, Jonathan's mother (Montréal Qc)
Rotationplasty
You should contact War Amps and ask them to get you in contact with some families. There are several kids who have had the rotationplasty and are doing very well. Our son had his done 2 1/2 years ago. He plays ice hockey, baseball, rides a bike, and is currently learning how to skateboard. We believe we made the right decision for him but could also say that prior to the surgery Ben was skating, playing baseball and riding a bike. We just wanted him to have a "knee" that bent.
If you would like to chat more, please feel free to email me at nette@quickclic.net
Brown Rotationplasty
My son had the Brown Rotationplasty in 2000, he is now 10 years old. We have never had any problems, except that his leg is so strong that he keeps breaking his prosthesis. I am told that is a good thing. He is very active he plays football, baseball, basketball and is a 2nd degree black belt in tae kwon do. He is actually very good in all of the sports. Did you ask Dr. Paley about the leg de-rotating. He told us that because he has fused the femur to the hip joint that the leg will not dr-rotate. We haven't had any complications and it has been 8 years. My son has only had one surgery and we see Dr. Paley one a year. If you can any other questions please feel free to contact me.
DeNita Dean
Hi DeNita - I was wondering
Hi DeNita -
I was wondering if I could contact you on your email - I would love to hear more about your son's surgery and his experience so far. Dr. Paley wants to do Sam's surgery when he is 2. My email is deb_zurawski@yahoo.com, please send me a note.
Re: Brown Rotionplasty
Debi,
We opted for the extension prosthesis w/out surgery. Its been a great decision for us. Our daughter is now 5 and does Karate, does rock climbing, rides a bike, swims, etc. If you want more information I'd be glad to talk to you- just send me a message here ( http://www.pffd.org/privatemsg/new/1)
Cheers,
rar