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Adult treatment


I'm interested in finding anyone with any experience dealing with adults with pffd. I am a unilateral, treated with Symes, fusion and left AK. I have no idea what Aitkens rating I am. My left hip was a mass of fused cartilage when I was born. I was treated at Mary Free Bed Clinic/Blodgett Memorial Hospital in Grand Rapids MI, now known as the Center for Limb Deficiencies. At age 7, I underwent 2 surgeries; the first, Dr. Charles Frantz literally sculpted a femur head and a hip socket out of the cartilage, in the second he fused the femur and tib/fib together with a plate. (I had many other reconstructive surgeries, but these are the pertinent ones)

Long story short, I recently injured that left hip created so many years ago, displacing the femur head in the socket. 4 months later I still have significant pain and edema in the joint. My prosthetic doesn't fit properly. I am desperate to find a doctor willing to treat my condition so I can get back to my usually active life of bicycling, skiing, kayaking, hiking, etc.

I live in Massachusetts but am willing to travel for treatment. Most of the physicians and surgeons with experience in the condition treat children exclusively, other orthopedic surgeons are afraid to treat the injury because it isn't a "normal" (it is to me!!) hip.I am stuck - please reply with any suggestions.


Hi Cindy,

Have you contacted Dr. Paley in Baltimore yet? He is the doctor we have chosen for our daughter, but he treats adults also. Here is a link to the institute where he is co-director.



I knew of two really good doctors in the Kansas and Nebraska areas. Dr. Donald Spencer was in Kansas City and Dr. Neff was at the University of Nebraska. Unfortunately, both have passed. I'm currently going to one of Dr. Spencer's parteners in Kansas City.

I saw Dr. D. Paley in Baltimore about 10 years ago.

New member---Carmen


My son is 2 w/ PFFD in left leg. We are currently having him treated at Shriners in St. Louis. He will most likely undergo the Van Ness rotation in a couple of years. We live in Kansas City and I was curious what dr. you are seeing. I've also been concerned once he is an adult (and out of the Shriners sytem) how diffuicult it will be finding prothestists with experience fitting legs for people with the Van Ness - has that been an issue for you?

Any info/insight is appreciated!

Hi Cindy

I'm in my 40's & the doctors have never been able to decide whether I had severe CDH or PFFD - from what I've seen of the Aitken's classification I probably have a class C. I was also missing a tibia on that side and part of my tibia on the other side. I had a through knee disrticulation on the 'hip' side and a Symes amputation on the other.

The surgeons created a hip joint for me & the head of femur ended up looking like one a child could have made from clay and the acetabulum was very narrow and elongated. But, it worked - sort of! :-)

In 1999, I fell at work and I subluxed (partially dislocated) my 'hip'. I refused to go to a doctor because I knew that the hip was damaged. I lasted for nine months before I saw a doctor - I only went because my back was hurting. A year after the fall, I saw an orthopaedic surgeon & he diagnosed the subluxation. The only treatment was a total hip replacement - I delayed the op. two more years & had the op. when I was 41.

I couldn't have waited much longer as the pain was intense! I had the swelling you are getting at the moment. It wasn't much fun, at all!

As my femoral shaft was narrow, they had to use a small hip implant. The surgeon used an 'Exeter Hip' replacement. You can see their site at [url][/url].

I live in the UK, so there was no problem using that implant. However, from talking to the people at HipUniverse (a US support group) there would be problems for you as you live in the US and the US has different implant standards than Europe.

Having said that, my op. was very successful. Please get in contact if you need to, at:

Take care