It was a very thorough exam and he took a lot of time with us.
A quick summary is she is looking good but he would like to do 3 additional procedures to help her but none of them are as major as the leg lengthening.
1. Her left foot is C-shaped. So he will go in, cut the bone, add a "wedge" to her foot and hold it in with a pin. This will straighten her foot, make it a little longer and more comfortable in shoes. (I assume it will reduce her shoe size discrepancy which is currently 3 sizes.)
The foot procedure slows you down. It would require 4-6 weeks in a non-weight bearing cast below her knee. A second procedure is required to take the pin out around week 4.
2. She is becoming "knock-knee'd" again. So he will do an "8 plate" which essentially is going in and stopping one side of the knee from growing so as the leg continues to grow the leg will straightening out. This procedure is very common among kids with FH.
An 8 plate is an outpatient procedure that requires 3-4 weeks to get her range of motion back and a second procedure to remove the 8 plate at some point. From what I have seen that is months later. The 8 plate procedure is "easier" than the foot because of mobility and length of time it slows you down.
3. Mary currently has a 12 mm. difference and it is projected to be 14 mm. (It was originally projected to be 7.5 cm. so we did achieve a lot (6cm.) with the leg lengthening.
As a result he will stop the growth on the right side. This procedure we did know would be coming at some point. The first two (foot and 8 plate) were new to us.
His goal is not to make her exactly even but closer to 10 mm because 10 mm seems to be more comfortable in the long run than 14 mm.
Timing: He will see us in 3 months to see how she is doing and take a x-ray of her hand and foot. Since the hand has 30 points, there is a lot of data in one place to determine her "bone age"- meaning how much more growing does she have in her. Is she close to her mature height and the growth plates are closing or are they open because she has a lot more growth ahead of her? He would like to do the procedure on her "normal" leg when her bone age is 12.
He would do the foot and knee procedures at one time - most likely this summer but we will confirm at the next visit in 3 months. These procedures should be done sooner than later.
He would do the procedure on the "normal" leg a year later. The later the better for this procedure.
He will also be considering removing a bunion that has developed on her left foot as a result of the curved foot at the same time as he adds the wedge to the foot to remove the curved shape.
Unfortunately, he said to continue PT (we haven't stopped since June of 2012!!!) and to do what we did when we noticed she was backsliding in October as a result of a growth spurt- increase the PT.
He did say he would throw in fixing some of the deeper scars for "free". You know that means you have paid too much when a surgeon starts throwing things in for free. :-)
The positive of the visit is he did officially say we won't even have to consider a 2nd lengthening. That would have been hard to decide. It was successful but not sure I would sign up to do that again.
Pictures from a CT scan on December 6:
