So… We’re waiting. 1 to 2 weeks to hear from Shriner’s. But I’ve never been good at waiting with my thumb up my butt. So… Research.
This is going to be a long play. Like, greater than a decade.
So, here we go.
This sucks. A lot. Congenital Pseudarthrosis of the Tibia is regarded as one of the most difficult conditions a pediatric orthopedic surgeon can deal with, which is why her doctor said right away that we were outside his area of expertise.
The primary goal is “union” which means the tibia is one straight bone. We’re very lucky, because she hasn’t fractured her leg yet. YET. She could, any time, because of the pressure she’s putting on it. That is scary as sh*t. Anyway, the difficulty is getting the bone in one straight piece. That’s hard, because on top of the fact that her leg is pretty badly curved, she won’t heal from a fracture. Or a surgery. (Should be called congenital f*cked upness of the tibia.) So bone grafts can help with that, and with reconstruction. There are 3 major surgeries used to treat it. Unfortunately, there is no gold standard, and much disagreement.
Then,
AND THEN…
IF you can get the bone to knit into one piece, then you have to KEEP it in one piece. The rate of refracture is scary high.
Because of so many complications and complexities, many patients are encouraged to amputate.
AMPUTATE.
I do not accept this.
There is this doctor in Florida, Dr. Paley. He’s the best, most experienced orthopedic surgeon in the country when it comes to bone deformities and defects. He’s created this new method, and since 2007 has had a 100% success rate, with 0% refracture.
I wish we could see this guy. But he’s in Florida. So, I don’t know. But if we could get a doctor who trained with him? That would be amazing. He seems dedicated to teaching his method. I’m going to contact his institute today to ask for recommendations out here on the west coast.
The other thing I have learned is that there is some controversy about how to treat a leg that hasn’t fractured yet- like Amy’s. Some did recommend surgery right away. Others, bracing, until a fracture occurs. Many believe that surgery is best after age 3. Others, that age doesn’t matter.
Professional disagreement makes this even harder.
One hard thing though? There is pain in her future. That is heartbreaking to know that it’s looming. 🙁
