If you are new to PFFD - I recommend starting with the PFFD book

DR. Paley or Shriners?

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.

Need a Doctor in Ca.

My mother was born in 1952 and untill today we did not know there was a name for her birth defect. She is a bil-pffd that has had the van nes procedure. She has injured her tendons in her right leg and the muscles are not attached to her hip and back muscles anymore. For two years we have been tossed around and no one knows what to do. Are there any doctors who know where her muscles are and where they go so we can fix them???

Bilateral Debate on treatment, looking for any opinions

My daughter Faith was diagnosed with Bilateral PFFD when she was born in Dec 2004. She is 6 months old has had two appointments, one with Shriners in Chicago and one in Baltimore with Dr Paley. The doctor in Chicago recommended not to do anything. Dr Paley recommended to first surgically 'relax' the muscles, ligaments and tendons in her hips and knees. Then lengthen the shorter of her two legs to make them equal.

My wife and I are very divided on the treatment options. I am trying to keep a very open mind and I am looking for any assistence anyone can provide that would help us. The arguments are as follows:

Our Beautiful Olivia

Olivia was born on June 11, 2004. We learned at my routine ultrasound while I was pregnant with Olivia that she would be born with a short left leg. Her left leg is about half the length of her right. Her left foot is at about the same level as her right knee. I don’t know the classification yet, but she has a short femur and fibular hemimelia.

We met with 3 pediatric orthopedic surgeons before choosing Dr. Herzenberg and Dr. Paley in Baltimore.

McKenna's progress during limb lengthening...

Hello Everyone!!

Our little girl McKenna was born on July 7th, 1997, and was diagnosed with PFFD, class "B", right leg only. Just about 2 months before she was born we were in for a checkup and they did an ultra sound to detect her size as her older brother was over 10 lbs at birth. Everything looked fine, but then the nurse doing the exam noticed something and called in a doctor to confirm her findings. That is when we were thrown into the world of PFFD.

We were shown old black and white photos of children with varying classes of PFFD, and most of those photos also showed other birth issues not related to PFFD. We were shocked, scared, and confused about why this happened to our little girl. One doctor at the hospital did hand us a card for a limb lengthening hospital in St. Paul, MN. and said to contact them once our little girl arrived. We did, and once she was around 3 months old we brought her in for an evaluation.

Johanna - our daughter with bilateral PFFD

Hi! Johanna is now 5 years old. She has bilateral PFFD, also complicated by a foot which turns outwards and no right hand. Johanna is not walking. We are very keen to hear from any and every other children or adults with bilateral PFFD. We have lots of questions about treatments, what we can expect etc.
Please get in touch!

lewang@nznet.gen.nz

What to do next?

Hi I am a father of two beautiful boys the youngest one born in July 2003 with pffd.He is a dream come true. He can probably climb better than any kids without this condition and along with his older brother light up our lives. He is penned in for lenghtening in September this year. The problem is that it is very diffucult to make a final decision to go ahead with this operation. The difference to date is approx 6cm. At full growth it will be 20+ cm. Does the end justify the means? Each time we speak to our surgeon the future looks bleaker, and living in Ireland there are not many people with this condition and therefore no support groups .

Adult with PFFD

I am a twenty eight year old female with bilateral PFFD. I'm interested in hearing from other adults with this condition.

a good prostheticist is worth his weight in gold

I've probably had 8 to 10 legs over the years, and I have to say it's all about the person making the limb. I've had good and bad legs, and it always boiled down to how well the person listened to me, and followed my directions. I've had those with the "I know what I'm doing" attitude and it's never failed to be a miserable experience. If you're getting a lot of resistance from your supplier, find a new one that cares about YOU. It can mean the difference between everyday comfort and everyday pain.

One Opinion After Another

My daughter was born in October 2004. She is beautiful and already very determined. She has unilateral PFFD, Akins class D (no femur or hip socket). We have already been able to find out so much about treatment options. Thank goodness for the internet. We have researched all the possible options from no treatment (prosthesis alone), to foot ablasion, and Van ness. We have seen 3 different surgeons. All of which give a different opinion on which surgery would be best. I have seen two different prosthesist which both advise leaving the foot intact but one says to do Van ness and the other says leave the foot as is.

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