Step 2: Epiphysiodesis: shorten the long leg

We saw Dr. Scott on Sept. 21. Mary had a standing x-ray to:

• monitor how the 8 plate is doing straightening her left leg, 
• help determine the current discrepancy, and 
• a hand x-ray to calculate how much more growth she has left.

standing x-ray using a 3 cm. block

bone x-ray to determine amount of growth left

close up of 8 plate

The conversation was very similar to the conversation in May. Mary was given 2 choices:

1. epiphysiodesis to shorten her long leg:

• he goes into the distal femur and scrapes the growth plate so it won't grow as long as it would have if it was left alone. 
• The procedure is done on an outpatient basis, it takes 90 minutes of his time, and the recovery is she will be soar for a couple of weeks.
• the femur grows .9 mm a year
• If she has 2 years of growth left she will gain 1.8 cm.
• He believes she is 3.5 cm difference in length so this should get us close to the goal of less than a 2 cm. difference.
• If she wants to go this route he wants to do it sooner rather than later. He does NOT advise waiting until summer.
• Pediatrician believes she will be around 5'4" and I believe she is 5'1" now.
• Bone age shows over 13 but not 14. She will be 13 in February.
• The other growth plates continue to grow it is just the femur that is stopped from growing

2. PRECICE internal leg lengthening:

• rod is put into femur,
• after one week, use magnets 2 times a day to lengthen the bone
• based on her difference she would lengthen for 25 days so it would be over in 32 days
• the rod stays in for one year for the bone to consolidate
• it requires an inpatient surgery with 3-4 days in the hospital
• there are no external pins so infections are not a concern
• it's easier than an external fixator but still more to go thru 
• she will be on crutches and have a knee brace to protect the knee from "sliding" 

Additional info: 

• ankle looks like it is holding up because of her afo's when she was little.
• He no longer wants to remove the 8 plate in December as he planned in May. The growth center is still open and he may over correct because it tends to slide.

So when we left Mary had information to help her decide what she wanted to do and we were to call and let him know. 

In May Dr. Scott focused on the epiphysiodesis that he has been mentioning since she was 5 months old but at the Sept. appt. he did talk about the PRECICE internal lengthening as an option because he just finished a successful one on a girl similar to Mary. 

At first I was leaning toward the internal lengthening because the shortening of the right leg is not an exact science and has always made me nervous. But then I did some research and remembered a lengthening is still a lengthening with pain, spasms, etc. etc. There is a risk that we do the epiphysiodesis which is a much simpler procedure but the guess about the amount of growth she has left is off and we need to do the internal lengthening after all.

The beauty of Mary getting older is she makes the decisions. She has decided to have the epiphysiodesis done on December 10 at our favorite hospital. Once I heard that I felt like it was the right decision. 

We are continually reminded that the treatment for FH isn't an exact science which can be difficult at times but so far we have been lucky with the treatment so far. Wish us luck with this one.