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Nicholas Upcoming Superhip at age 6

Hi Everyone,
We are in Palm Beach under the care of Dr. Dror Paley, at St. Mary's hospital. Nicholas will have his Superhip on Thursday Dec. 10th. We are impressed with the team here, and especially with Dr. Paley and his clear explanations and consulation. We decided to come here and see him after having 2 osteotomies in NC with orthopedic surgeons- which failed to correct the hip. From everything I have learned, it is very important that you have a doctor familiar with PFFD (or congenital short fermur) and everything it involves. Dr. Paley and others have made a number of advances over the last 10-15 years which are critical to proper care and treatment.

I will post again after the surgery. I highly recommend Dr. Paley and his team. They have been professional, clear and easy to work with. Despite the travel almost 12 hours by car, it seems that the gains we will have from the correct treatment will end up saving us much more time and money in the long run (and most of all emotional distress) than just going to closer, more convenient place which lacks adequate knowledge about this rare condition.

Tanya (tmalaci@yahoo.com)

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Hello, I am a new member but I will be joining the Paley Team in West Palm January 5th to remove my "super Hip" The intention at the time was for it not to function as a super hip but the device is very much the same. I have had some complications with my last surgery in March 2005 and I am coming back for the biggest surgery of my life. I am 24 years old and I have been a patient of Paley's since 8 years old. I have had over 20 surgeries. I have gained 9 1/2 inches in Length. I have type A and C PFFD. My knee cap on my right leg is maybe the size of a peach pit and my hip was deformed. After my Lengthening was over, Paley put a metal support rod in my Femur. After it was taken out in November of 2004, the crack he made in my femur never healed. I was walking on a broken leg for 2 months. Jogging, swimming.... I went for a check up in February and my X-Rays looked fine!!! I complained about a sharp pain right under my buttox, towards the outside on my thigh. Paley did a special X-ray and my leg was still broken and I managed to wear down all the cartlidge between my hip and my Pelvis. My hip was even more deformed at that point. Doctor Paley did a hip osteotomy and put in a super hip, but not for that general purpose. I still don't know WHY he put such extensive hardware in but what happened was this.... June 2nd 2009, my first trip to the ER. Horrible pains in both legs. Sciatic nerve issues. After 6 doctors refused to see me because I had had Leg Lengthening, my husband and I went to West Palm to see Doctor Paley. Turns out that "he did his job a little too well and they didn't see complications with that procedure until after 6 months AFTER we did your surgery" My hip is now a perfect shaped hip bone but I also have extra bone growing all over my hip, inside my pelvis and bone 3 inches thick on top of my "super hip" device. I also have a cam impingment which means my bones are locking and I literally can not move my hip certain ways and the muscles are slowly dieing. I also have no feeling in my toes anymore from all the pressure and extra bone on my nerves. My surgery is January 6th 2010. If I wait any longer the damage can not be reversed. I am hoping to tell my story and answer any questions you or any other family has. I am older than most patients and I have given the few families I have met in August some hope that Paley's procedures do work!! It has been such a huge part of my life, I want to share it with others that understand!! My husband didn't full grasp what was wrong until he met Paley and saw my X-Rays and scans. My heart goes out to you and your family.

Hello, I just wanted to clarify that Superhip stands for " Systematic Utilitarian Procedure fo Extremity Reconstruction". Anyone who is interested in more information might want to read about it at www.limblengtheningdoc.org for treatment of the condition being addressed.

How did the surgery go? How is Nicholas doing?

Beth

glad it went well

The surgery in Decem ber 2010 was a complete success for Nicholas. Dr. Paley has celebrated two years in West Palm Beach (St. Mary's) with his PALLI: Paley Advanced Limb Lengthening Institute. We are almost finished with Nicholas's (first) leg lengthening now. Everything has worked out as it should with no complications. If you choose this procedure for your child, I highly recommend PALLI without reservations.
Tanya