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Congenital Short Femur/PFFD

My 21 month old granddaughter was recently diagnosed with PFFD. The orthopedic indicated that she will have to have leg lengthening or shortening by the age of 8-12 for a 7 cm discrepency . Everything that I've read indicates that surgery is being performed much earlier than this if lengthening is the chosen procedure. Being totally unfamiliar with this disorder we are not sure where to start to seek the best medical treatment. Can anyone tell me who/where is considered to be the best in this field? Thanks for your help.

The doctor we have used is Dr. Dror Paley. He is located in Baltimore Maryland, and you can reach his staff at 1-800-221-8425. Our little girl McKenna has had 2 lengthenings with him, and so far so good. If you would like more information please email us at, or you can call us collect at 763-494-8823 and we will do our best to help. In our opinion Dr. Paley has seen and treated the most patients who have PFFD and even though we have a local surgeon who can do lengthening here in Minnesota we feel that traveling all the way to the east coast is well worth the effort. Our treatment started when McKenna was 18 months old, and there are some things that need to be looked at before you start lengthening, so if your doctor by you is saying to wait you might want to get a 2nd opinion. Give us a call anytime and we can do our best to answer any quesitons you have.

Chuck, Karla, Dylan & McKenna

I believe that the best thing to do is to get multiple opinions from different surgeons who have done lots of lengthenings. Some surgeons have a reputation for "pushing the envelope" and doing what other well-established lengthening clinics are not willing to do. When it works its great - when it doesn't it can be very disabling. Unfortunately there aren't any good studies that compare results vs doctors. You don't often hear the negative stories published with a specific doctor mentioned - in one case a woman wrote that the US doctor threatened to sue her for posting her negative story about lengthening and, writing that since she is now disabled can't afford to fight... pulled her site.

There are also different styles of lengthening - the literature identifies that the Illiazarov method has a very high incidence of severe pin infections while the orthofix method does not. Which is best for your granddaughter would be best discussed with the different surgeons. You may get vastly different opinions - but then you are, at least, informed about which technique would be best. When to do the lengthening also depends on the amount to be lengthened.

So instead of me recommending one who/where, I suggest you talk to a few different centers where lengthening is common. I've made a list here: Limb Lengthening and Overview and the contact information is in the links. I don't know
anything about the Ukranian site (except they were one of the first one's I found years ago that had a PFFD page), but in regards to the other 4 sites: I have heard enough good vs the bad that I would recommend them (as long as you talk to at least two of them!)

Good Luck!

I agree that everyone should check with several doctors before making a decision. I am just wondering what the date was of the article you mentioned? In the article it referenced Dr. Paley and that appears to be atleast 8-10 years old. I know that the way PFFD patients are being treated have changed. I am just wondering if the informaiton listed in the article still applies now.(I would think a lot has changed since then)
If you chose to visit Dr. Paley or any doctor who performs lengthening I would ask for more recent information/data that they have.
Thanks, Staci

The date the article I referred to was 2004. I'll adjust the page to show that in the references. About two years ago I also spoke to a current patient of Dr. Paley's who was still in the Illiazarov and asked about a high rate of pin infections. They confirmed it and also said that because of the high probability of pin infections they had a standing order for antibiotics and a bottle of it in their fridge, just waiting to be used. If there is an updated article I'd be glad to post it - if there are people with newer first hand experience - feel free to contradict/confirm this. If you'd like to post anonymously, you can send me a private message and I'll anonymize it.

hello, i am jessi and i am 17 years old, i also have PFFD. i just wanted to recomend the shriners hospital for children. They are the best doctors and they are so friendly! i have been going there all my life. it is hard at first but if your child is growing up with this they will be used to it. please reply, thanks

We went once to the Shriners hospital in Chicago and found that to be true also. Which Shriners Hospital did you go to?

Hi Jessi, my name is Verenice I'm 18, and I have a daughter with PFFD. I am resently trying to apply to shriners and I was wondering if you can tell me alittle bit more about them. please reply Thanks.