Surgeries and Hospitals

Hello everyone!

I was just wondering if anyone has been treated by Dr. Paley and not had lengthening? Does he also perform amputations and rotations?

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 daughter is 4 years old and her left leg is 10cm shorter than her right. She functions very well with or without her shoe lift. At this time, her doctor suggested it's time for her to have a surgery and recommended Vans Nes Rotation. My husband and I are having a hard time deciding/dealing with her leg being backwards. We thought of lengthening or prosthetic without surgery, Moseley Device, but we don't know if that's a good idea. Please help us! I know a lot of you went through it and we would like some advise on where we should go on this.

My son Peter has PFFD unilateral left leg - we are scheduling surgery with Dr. Paley in Baltimore. We live in Gahanna OH (near Columbus) and are looking for someone who can do the physical therapy here. Dr. Paley indicated he would need very specific therapy and we are looking for someone who has done this locally.
Lynnette

Hi,
First of all let me start by saying that my son is a bilateral arm amputee and has PFFD in his left leg. All the doctors that we have seen told us the only option we have is to amputate his foot. But, my son recently saw Dr. Paley. He has greatly changed our outlook on Landon's future by giving us other options. Landon's has PFFD class C. His hip was not completly formed but Dr. Paley said that he could do a surgerical procedure and fix the hip. Has anyone ever had this. Next Dr. Paley informed us that he could reconstruct his foot and correct it (he is missing the ankle and pinky toe and also missing the fibula). Has anyone ever had this type of surgery done? Even better he can do this all in one surgery.

For people who have been to the Baltimore surgeons...I was wondering if you saw just one doctor on your visits there or are you exposed to multiple ones. I have heard great things about the group there and wondered if they work as a team or if you just stick with one person. Do people have preferences over Dr. Paley or Dr. Herzenberg?

If you could move anywhere to help your child with most sever form of PFFD where would that be and why? Where would you move to get prosthetic services, why? Where would you move to get hip reconstruction why? Were would you move to get Van Ness, why? We have the option of moving just about anywhere. We would like to know your opinion.

Places you would avoid are equally valuable.

Hi there!

I just found this site, and I think it's great!

My husband, who is 31 years old, has PFFD. His foot was amputated at age 2, and his knee joint was fused at age 15. He gets around great with his prosthetic leg, but he has a fairly severe limp because of his missing hip joint.

I worry about possible future effects of his swaying gait on his back and other leg. I've always wondered if a hip replacement would be possible for him.

Has anyone had any experience with this?

Thanks!
rudimae

My son was born in Dec. 2003 and has unilateral PFFD that is of moderate severity. I have been in email contact with Dr. Paley and we will be making a visit to his center soon. We will pursue lengthening. I have contacted the Shriner's hospital and am considering contacting Dr. Mark Dahl at the Minnestoa Center for Limb Lengthening.
Of course, I like the idea of free care at the Shriners Hospital, since I am in Omaha, NE and transportation will be an expense even though insurance will pay for the surgeries.
Does anyone have experience with these Doctors and prefer one over the other?
Your response is greatly appreciated.