I am new to this site but have known about our son's unilateral PFFD since an ultrasound at 19 weeks. We are from Pittsburgh and have seen a pediatric orthopedic doctor at Children's Hospital since I was pregnant. Our son is almost 2 now and has been walking since 10 months and his PFFD does not appear to limit him in any way. He is a busy little guy and an absolute joy! My concern is that we are not being proactive enough. We are due back to see the doctor in two months. The doctor has discussed with us the possibilty of both lengthing the effected leg and shortening the other leg but not until he is around 13 years old so they have a better idea of what the discrepncy will be. The doctor's attitude has kind of been "let's wait and see". He currently does not wear a lift in his shoe but I am not sure if that will change after the next appointment. He has no problem getting around but often walks with the unaffected leg slightly bent to accomondate. My question is, should we explore surgery at an earlier age? If so, what would the benefits be?
HI! I just wanted to let you
HI! I just wanted to let you know that we are from Pittsburgh too! I don't really have any advice other than I don't think that the doctors at Children's have as much experience with PFFD as Dr. Paley does. Knowing how different each case is, I think someone who "specializes" in this type of birth defect would have a better idea as to what the benefits of surgery (at an earlier age, etc.) would be. I have tons of respect for the doctors at Children's, but they told us that our sons only option was amputation because he was such a severe case. We felt that there had to be other options out there...his foot was perfect and it was hard to imagine going through that with our son (my father had just had BOTH of his legs amputated right before we met Dr. Paley and I could not go through that process again). I really just needed to know what ALL the options were for him. I think that you would benefit by at least shooting Dr. Paley an e-mail about your son and his case...he is truly the best. My son is actually scheduled to go for his second hip surgery at the end of March. I don't get much time on this site as I would like, but you could message me with your e-mail or phone number and I will try to contact you if you would like. I don't have Dr. Paley's info on hand, but I know you can find it on one of the previous posts, he works out of St. Mary's Hospital in West Palm Beach, FL. Good Luck to you!! Jen
surgeries
I'm originally from the Pittsburgh area, but I am now living in Harrisburg. My two year old daughter has PFFD, and her left leg is 2 1/2 inches shorter than her right. We first went to a doctor in Hershey, who sounds a lot like the doctor you've seen in Pittsburgh. Let's wait and see...not sure what treatment would best, etc. Next we took her to Shriners in Philadelphia, and the doctor there was more helpful. Then we found out about Dr. Paley. At the time he was still in Baltimore. By the time we scheduled an appointment there, he had moved to Florida, but his colleagues who are still in Baltimore were wonderful! Both the doctor at Shiners and in Baltimore recommended the same treatment - hip surgery at age two followed by three lengthenings over the next 10 or so years. She is scheduled to have a superhip surgery in Baltimore (International Center for Limb Lengthening - where Dr. Paley used to work) this June. This surgery will correct the hip as well as the top part of the femur which is improperly angled.
She's been wearing a shoe lift since she was 10 months old. She walks, runs, climbs, and dances well without it though.
Hi, I am also new to the site
Hi, I am also new to the site and my 7 month old son has pffd in his left leg. It is an inch shorter than the other leg. I cant offer an answer to your question about surgery because I have been wondering the same thing about our sons surgery. I do have a question about your son if you dont mind me asking, my son is also going to be walking soon and we think it will be easier for him to walk with a shoe lift (he is on his tiptoe on is shorter leg), but I noticed you said your son does not have one and Im wondering what is the length difference of his legs and also was there any reason in particular that you chose not to use shoelifts? I would appreciate any advice thanks
I am a 50 yr old unilateral
I am a 50 yr old unilateral ppfd that had a Van Nes rotationplasty when I was 8 yrs old. Prior to the surgery, I had a brace/extension and was very, very active with it. Road hockey, running around...being a general terror around the house. You name it. I had no problems getting around at all....the surgery was a big question mark for my parents at the time. I would definitely consult with your orthopaedic surgeon and a specialist in this area about the options available to you and your son. As you know, each case is different and your son's unique situation could indicate a clear path to take.
Speaking from personal experience, Van Nes rotation was definitely not easy. However, after the initial ginormous mountain was overcome, it has been well worth it. I still play tennis, golf, even could skate...a little.
If you need to know any details about what you should expect...ask me. I'll be happy to answer.