PFFD VSG2

My son is 20 months old and will be going to get a Super Hip 2 surgery done when he turns 2 years old. Not only does he have PFFD, his femur is growing at a 90 degree angle. So they will need to break his leg to straighten it out and then do the Super Hip 2. Dr. Paley did answer all our questions, so we are sure that he's the doctor to see about our son's condition. I guess we are just nervous about his surgery because he's our only child.

and is a busy boy. Nothing seems to deter him until his mommy tells him no.

I am happy to find this forum. I am a 43 yr old female with unilateral PFFD. Would love to talk with others about skin breakdown, arthritis etc. Would also be happy to answer any questions for younger folks/parents etc. Just happy to find you all!
draymond

We are home now after our first procedure with Dr. Paley. We went to West Palm Beach Dec. 6 and returned Christmas Eve. Our daughter, now 16 is doing GREAT after this procedure. She required an extra week of rehab stay and we had many frustrations with the communication between Dr. Paley's office and the hospital, but as far as surgery outcomes we are pleased.
If you have an older child that is beginning their journey to correct PFFD/CFD and have specific questions you can email me as well as if you have not been to the new facility at St. Mary's Children's Hospital:

My son Robert has recently went through 2nd lengthening process , we are in bone consolidation phase at present. Last week we went for xray on femur to get date for removal of frame only to discover that one of the pins had snapped . This isnt the first time this has happened , a pin broke on removal of last frame. Just wondering if other people experiencing this ? Is it normal?

Hi Everyone,

Just wanted to let people know that our surgeons have set the dates for the next few monthly chats. These dates are December 10, January 14 and February 11. All chats are at 9:15PM EST.

Please contact vbrady AT lifebridgehealth.org for additional details.

Lee

I am 54 and found out 2 weeks ago that what I have had all my life is actually called PFFD. I was hospitalised at 15months old for 7 years at Chailey Heritage in Sussex. I had a bone graft at 3years old ( which I understood later had not worked). I was allowed to get a contraption strapped to me that let me walk at the age of 7 or so.
Once freed from a bed I was very active. I went through various types of supports. My PFFD, (I am not up to speed on all the terminology yet) is on my right leg with a femur length of maybe 2'' , its a guess because I have never been shown an x-ray. I had a Symes amputation when I was 16. The foot was perfectly formed and was actually quite an aid to walking as it gave a more positive feel to the direction my artificial foot was pointing in.
I played a lot of sport (that didn't need running over long distance) and could hold my own in a fierce game of volleyball.

Hey everyone,

I just found this site, and it looks like a great source of info. I've been lucky enough to know a thirteen year old boy with a congenital shortened femur. He had a symes amputation at a young age, and has used an extra long below knee conventional prosthetic since then. He is a very active boy. He plays basketball and ran track last year.

I'm posting because myself, four other Purdue engineering students, and a prosthetist from Indianapolis designed and built a new prosthetic device for him last year. It is described at our wiki page located here:

I hope the offensive posts are removed....knowing it is likely spam and perhaps has a virus, I hope no one clicks on it.....Not sure how to requesst removal...if anyone knows, please request moderator to delete it asap. Thanks.