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Tuesday, July 12, 2011

Update on Sami's surgery

Sami had her pre-op appointment yesterday. 

Unfortunately there was some type of miss-communication and the spinal surgery we decided was best for her, isn't one her doctor does very often and needs the assistance of another doctor who wasn't scheduled to assist with the surgery:(  So we had to go see him today and we are glad we did.  He was nervous about doing growing rods in a child with EB.  His roommate in collage had EB (small world!)

He recommended we go with a procedure called the Shilla Procedure.  I will explain it below.  But basically it is growing rods that grow WITH her and she won't need surgery every 6 months.  YEA!!!  They aren't permanent and she will still need a complete spinal fusion when she is 12 or so, but this will allow her to keep growing till then!!    They won't know for sure if this will work for her until the open her up and see her spine up close.  The spine has to be able to bend a certain amount for these rods to work.  So we are hoping they can use this procedure on Monday.  If not, then regular growing rods will be placed and she will need surgery every 6 months to lengthen them.    they think surgery will last 4-6 hours as long as no complications arise and a hospital stay of only 3-4 days!!!  Sami is happy about that one:) 

What is the Shilla Procedure?

This a technique used that allows for the natural growth of the spine and correction of the spine at the same time.

The Shilla is similar to a track and trolley system. The rods are placed but are partially fixated to the spine. This allows the system to “grow with the spine”. Rod breakage can occur and this is a normal outcome. When this happens revision surgery is indicated. This is a newer technique being applied at leading centers across the country.
Pedicle Screws are inserted at specific points in the spine. Screws in the center are holding the rods in place. Other screws allow for the spine to move and elongate at either end.

Surgery is Monday the 18th @ 7:30am.  I will post updates on here and on Facebook throughout the day (and week). 

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