I decided to write down a question message because of my dilemma a treatment of PFFD.
We live in United Kingdom and have little boy. Eric was born in August 2011 with PFFD.
English doctors in Sheffield think Syme amputating or Van Nes Rotationplasty would be the way to
do. Which we were told this before so it wasn't a shock.
We've send a email to Dr Dror Paley in Florida and he said, that the best option will be Paley-Brown Rotationplasty but unfortunately for us, this option is too expensive. So question I have of parents who went with Rotationplasty what's the difference between Van Nes and Paley-Brown Ratationplasty.
Anyone who has Van Nes done in England? I would like to know what's functionality (at every time) of people with
amputation of the food and Ratationplasty. So much to think about just wanted to hear a little from parents who have already done it..
Sorry it's so long!
betty.ciebien@gmail.com
Re: Amputation of the foot or Rotionplasty??
Some people talked about it here http://www.pffd.org/node/486 too so you might try reaching out to them.
There are different types of rotationplasties (you can read about it here: http://www.pffd.org/Rotationplasty ) and the determination is where they rotate the leg. In the standard rotationplasty the cut was in the femur, and it was invented because of cancer in fully formed femurs where they tried to save the leg. In PFFD it is difficult to access the femur above the knee (especially with kids and small legs) and so many doctors, did the rotation at the knee or slightly above it and twisted the muscles the powered the ankle around 180 degrees. This often led to de-rotation, pain, and as many as 4 additional surgeries to re-rotate. Long term studies on PFFD and this kind of surgery weren't done - many doctors for decades did the standard rotationplasty and recommended it anyway. Over time - patients with access to the internet learned about de-rotation issues and standard rotationplasty for PFFD was less well received when recommended.
The theory behind the Brown rotationplasty is that the rotation is now done at the hip and the hip is **fused** to the femur so you don't get rotationplasty at the expense of a fused hip. What are the long term studies for the Brown method vs patient quality of life? This was started by Dr. Brown in 2008 so we only have 5 years of results.
Amputation in kids is a known issue as kids keep growing. Sometimes there are bone spurs, skin breaks, and depending on where you amputate you have to deal with shaving issues. There are lots of PFFDers on the site who have had amputation done hopefully you can connect with some.
There is another option too, but requires a fully functional foot and ankle .... that is a prosthosis ( http://www.pffd.org/extension_prothosis ) which involves no surgery. We opted for this with a class C to class D PFFD kid and it's been great
but each kid is different. What works for us might not work for you with a different kid. You have to make the best decision with what you have and know at the time. Let me know if you have questions about prosthoses.