Here we go again (Internal Leg Lengthening)

Mary has had:

1. an external leg lengthening at age 9,
2. an 8 plate in her knee on her shorter side and an attempt at a foot straightening at age 11, and 
3. an epiphysiodesis (stop her longer leg from growing the height it would have without the procedure) at age 12.

Then I assumed we were done (and honestly I was a little burned out and needed a break) so I was very surprised at a doctors appointment at age 15 that they were excited about doing an internal leg lengthening on her femur. 

I needed time to process- I guess I should have seen this in our future because it was casually mentioned as an option but I dismissed it every time because Mary was very mobile had had minimal complaints.

I had a good conversation with the PA that helped me:

What do we hope to achieve?

• Minimize leg length difference to improve gate,
• minimize toeing down and landing on outside of foot, looks like there will be a foot surgery at some point and the lengthening will make the foot surgery more simple,
• have found when length is 2cm + different there are more problems down the road- as an adult with back, etc.

What happens if she doesn't do it?

• More complex foot surgery when she has it (2 phase vs. 1)
• Leg length difference will remain and the older you get the tighter everything becomes

What changed from 2017 to move this from a maybe to a "need to"?

• Medical technology is better: patients tolerate it so much better, and is more straight forward
• The difference is still big and in the past without the magnet would have just tolerated but now can make it better

Range for the Ex-fix that was "easy", or most kids got, and a range where it got more difficult..

• at 3 cm, more in the "easy" range
• at 5 cm nerves start getting tight

Are issues with nerve pain common at 3 cm?

• No since well under 5 cm, will be watching Mary’s knee, that’s why she will use a knee brace

With the Ex-fix there is a specific ratio of lengthening to consolidating - is there a similar ratio? If we did the Surgery on June 1, and lengthened for 30 days (plus first 7), when would you expect the patient to be fully weight-bearing?

• No specific ratio because everyone heals differently but ETA is 7 days after surgery, start lengthening for 30 days,
• At 4-6 weeks on one crutch, slowly become more weight bearing
• 3 months after lengthening, should be walking with a good gate again
• Teens consolidate slower but they can use a bone simulator if necessary
• So plan for the whole process to take 4 months

How long is the surgery?

• 2.5 hours of his time to put it in
• Less than an hour to take out

How often will we see him post op?

• Just like last time, weekly for the lengthening, then if consolidation is going well can start to push out

How often will we see PT post op?

• Initially all range of motion with hip, (1x a week)
• then strength training and gate therapy (2x a week)

When does he remove it?

• No sooner than 6 months but typically 8-12 months

Do you have to cut the bone to put the rod in?

• No, they make a 2 inch incision at the hip and tap it in the hollow section, then they advance it down, then they cut the bone in one place for the lengthening, put three screws in knee (2 screws at hip) to hold the rod

How do you take it out?

• Threads into the rod and pulls it out back thru the hip

How often do you wear the knee brace?

• Take it off to shower and sleep (on when moving around- he may have her sleep in it initially

Can you bend knee in brace?

• Some but the whole point is not to so the tibia doesn’t rub on the femur

I talked to two mothers that have gone thru both an internal and external lengthening and they described it as "a dream" and "a breeze" compared to the external lengthening we have been thru so we set the date for June 4.