My daughter is 23 and suffers from PFFD. She was a Shriners patient until the age of 20. She received various suregeries to help with her length and up until a few years ago wore a 1/2 inch built up. For the past year she has began to complain of sever pain in her hip joint (which we were informed by Shriners, would eventually need surgery/replacement).. and has become quite debilitating. We live in Alabama and are searching for a doctor specializing in her condition. We have yet to find anyone. Our experience after visiting many an orthapedic....they cannot help because they do not specialize. Can anyone out there recommend a specialist in our area or surrounding states that could possibly help us? Any assistance would be greatly appreciated.
Comments
doctor
I am so sorry to hear that your daughter is having pain.
Have you contacted Dr. Dror Paley in Florida? He works with adults and children.
Beth
Just wanted to mention that
Just wanted to mention that there is a chat this week on April 26 on the subject of PFFD. Dr Standard and Dr Herzenberg both treat many, many patients with CFD (aka PFFD), both children and young adults. If you are interested in participating in the chat and getting a chance to "talk" to the doctors from the RIAO, please email icll@lifebridgehealth.org for more information.
Adult with PFFD
Did you have any luck? I am interested to share information.
I am an adult with unilateral PFFD, used to call it CFD. I am a graduate of the Shriners program, and also shopping for a surgeon for a hip replacement. As an active person, I am really looking for BMHR. If you are willing to go far and wide, here are some doctors that should have the skills set.
Dr Amstutz in Los Angeles
Dr Thomas Gross in NC
Dr Aaron Hofmann in UT
Dr Douglas Padgett in NY
Dr Derek McMinn in the UK. He invented the Birminham Mid-Head Resection as an alternative to total hip replacement to address the younger population who will eventually need more surgery. He does free phone long distance consults and more importantly, studied with Dr Wagner, the inventor one one of the early fixatore devices used in limb lengthening.
I have not contacted Dr Paley, though he is on my list.
Hip Pain
Please consider seeing Dr. Paley in West Palm Beach, FL for the hip pain.
Where in Bama?
Hey! I am also from AL, Bham area. I am 25, so just a few years older than your daughter. I would love to talk if yall need it. I HIGHLY recommend Paley. I have been with him for 21 years now and done 20 inches of length. We just scheduled my last 4 surgeries that will all happen this year... He is remarkable and knows what he is doing.
Tell us more
I have an appt with Dr Paley next week. He responded to me directly and invited me to to consult with him and Dr Dan Prince in regards to my hip replacement. I finished my lengthening surgeries before he got out of medical school, so I am not familiar with him. I would like to hear about your experiences.
Thank you