What is Rotationplasty?
And why it is the right choice for Knox
Simplistically explained, rotationplasty is a surgery in which the leg is rotated 180 degrees, resulting in the foot pointing backward. (When describing it to people, the look of shock on their faces is nearly universal, but we’ve had a long time to get used to the idea).
This new structure of the leg allows the backwards ankle to function as a knee. The foot slides into a prosthesis and is angled down, essentially acting like part of a lower leg and controlling the prosthesis. Rotationplasty allows people to function similarly to a below-knee amputee.
Rotationplasty is most often performed on people (many times children) who have cancer in the knee. During this surgery, doctors remove the cancerous part of the leg and then rejoin the lower leg facing backwards to the upper leg. The video on this page explains how this works really well.
However, Knox’s surgery will be much more complex than the one shown in the video. In addition to turning his leg backwards, Knox’s surgeon will perform a pelvic osteotomy — a complex procedure that will create a hip out of Knox’s knee joint.
There are very few surgeons with experience doing this, which is why we having the surgery with Dr. Dror Paley in Florida. Dr. Paley is one of the world’s leading experts on congenital limb deficiencies and is one of only a handful of surgeons in the country with extensive experience performing the type of rotationplasty Knox needs.
Why can’t he stay the way the is now without surgery?
For those of you who know Knox and well he gets around, you might wonder (and many have asked) why he has to have surgery at all. One reason is due to his unstable hip. He now weighs a little more than 40 lbs. When he is a full-grown adult, he will not have the structural stability to maintain the amount of mobility he currently has, and certainly not pain-free.
Additionally, if he had no surgery, he would have to operate a prosthetic knee underneath his foot. That would be very difficult to do and would not give him optimal mobility. Also, although this isn’t as much of an issue, we are already having trouble fitting pants over his foot (which is at knee-height of his other leg). Imagine having a size 11 or 12 foot sticking out mid-leg as an adult.
Trust me, if there was any possible way we could avoid surgery for Knox, we would. But we want him to have the best mobility possible, and unfortunately that means we have to travel this path.
Did you have any other options?
The answer is…kind of. Two potential options could have been amputation or leg lengthening. We have known many other families who have chosen one of these options, and there is nothing wrong with either one. It’s very important to note that every single case of PFFD/CFD is unique, and therefore the right answer is different for everyone.
With amputation, we would be amputating a good, naturally weight-bearing foot while still being left with the issue of a bad hip. Amputation would have made him an above-knee (AK) amputee, while rotationplasty makes him the equivalent of a below-knee (BK) amputee. The latter is a much preferred scenario for mobility.
Limb lengthening was never really presented as a solution for us because Knox’s femur is so very short. Even if it was possible, lengthening would have required many, many surgeries. If all goes as planned, his rotationplasty will be his only surgery.
Before Knox was born, we committed ourselves to finding a treatment for him that would give him the most mobility with the least amount of pain and suffering. Given that, every single orthopedic surgeon, doctor and prosthetist we have ever seen has agreed that rotationplasty is the best choice for Knox. We are grateful to be in that position. Many parents find themselves torn between choices, and I do not envy them.
Also, when we start to feel sad that Knox has to undergo this surgery and deal with a different-looking leg his whole life, we try to remember that most kids who have rotationplasty have cancer. These kids are often having the surgery after going through chemotherapy, and not all of them beat the cancer. We have to take comfort in the fact that Knox is not sick. He is healthy and strong and has a bright future ahead of him.