We participated in an online chat with Dr. Standard, one of the docs in Baltimore, and learned some things about the super ankle/lengthening process. The earlier the better for the super ankle. It's recommended to be done between 18 and 24 months of age and the first lengthening is done at the same time if it's right for the patient. If lengthening is done, "frame-time" or the time spent in an external fixator is about 5-6 months. The frame-time is then followed by a cast for 4-6 weeks while the bone heals and remodels. At a rate of .75 mm/day for tibial lengthening, the first time around can give you up to 5 cm of new bone.
Therapy and monitoring are crucial to keep the lengthening safe and prevent soft tissue problems. Usually therapy is done there for about a month and then depending on the therapy available locally, they let you transition to somewhere closer to home. Dr. Standard says you don't want to go to somewhere that only does 4-5 lengthenings a year, compared to their 100-300 a year. The monitoring consists of a return trip to the clinic every 2 weeks while the fixator is on. (Lauren will be raking in the frequent flyer miles!)
The LLD or difference between the two legs usually follows a linear pattern, meaning the FH leg will usually stay the same percentage different from the normal leg as Lauren grows. Although she will gain a little length just from having her ankle reconstructed and tibia straightened. Depending on her LLD, which I think we will find out at our appointment with Dr. Paley, she may only need two lengthenings in her lifetime. We can only hope.
Therapy and monitoring are crucial to keep the lengthening safe and prevent soft tissue problems. Usually therapy is done there for about a month and then depending on the therapy available locally, they let you transition to somewhere closer to home. Dr. Standard says you don't want to go to somewhere that only does 4-5 lengthenings a year, compared to their 100-300 a year. The monitoring consists of a return trip to the clinic every 2 weeks while the fixator is on. (Lauren will be raking in the frequent flyer miles!)
The LLD or difference between the two legs usually follows a linear pattern, meaning the FH leg will usually stay the same percentage different from the normal leg as Lauren grows. Although she will gain a little length just from having her ankle reconstructed and tibia straightened. Depending on her LLD, which I think we will find out at our appointment with Dr. Paley, she may only need two lengthenings in her lifetime. We can only hope.
Hi Heather, Steve, Lauren and Sue: Great to see you all electronically! I read it all so far. What a beautiful kid! Jared
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