Treatment for Rory

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To correct the leg discrepancy, she will need several surgeries.  Her first surgery will be in a few months.   There are not many doctors that know how to treat CFD; so we travel to Florida to see Dr. Dror Paley who specializes in her condition.  
The Super-hip surgery will be her first and it will be in a few months.  (there have only been 150 of these surgeries performed 125 have been done by her doctor in Florida.)  I will be down in Florida for at least 3-4 weeks for the surgery and recovery time.  At this time she is going to have several procedures done:


First Surgery: The Super Hip
  Her hip is sitting quite lower on the right side and at a sharp 90 degree angle, unlike a normal hip (or her left hip). They are going to cut the bone in half and rotate the top of the hip bone so it is at the same angle as the other hip bone. This will also add 1 cm of length to her leg. 


While he is in there he is going to snip the muscles to make them more agile for the lengthening surgery. He is going to take the tensor fascia latte and going to split it creating new ligaments for her hip and for her knee.  Currently her knee isn't looking too bad so now they are unsure if she will need the super knee surgical procedure done. They will know more about that when we go into preop next year.


The surgery is a quick recovery so we will only be down there for 3-4  weeks.  She will more than likely be in a spica cast- I am not sure how long she will be in this, every case is different.

A spica cast is a hard covering over the waist, hips, and legs that prevents movement of the hips. A bar between the legs strengthens the cast. An opening in the genital area allows normal urine and bowel elimination. A spica cast may be used to keep the hip joint of a child with developmental dysplasia of the hip (DDH) in the position for normal growth. Spica casts are usually worn for 2 to 3 months 

Second, Third and possibly Fourth Surgery: Limb Lengthening


Her next surgery is where they are going to lengthen her  bone and will be in 2013.  It is a 3-4 month stay in Florida.  

During the surgery, the bone is usually cut through a very small incision to minimize injury to tissue.  
Dr. Paley will lengthen her leg around 5-6 centimeters (again depending on how it grows)
Rory will have to stay in the hospital for at least 1 to 3 days; however, depending on how her leg develops, she could have a more complex procedure and may require a longer inpatient hospital stay.

Rory’s rehabilitation will begin the day after her surgery. We are going to be taught to use a walker, adjust the lengthening device and most importantly we are going to learn how to care for pin sites in cases of external fixation.

The lengthening of the bone will usually begin a few days or a week after surgery. This is when we will have to adjust the screws in her leg.  When Rory’s bone is pulled apart new bone will grow between the bone ends. Her bone will grow around 1 mm per day, give or take.  
Rory is going to need some intense physical therapy to help with her muscles and joints.  She will not be totally off her legs because weight bearing helps stimulate the bone to grow.  She will need to get several x-rays to make sure the bone is growing properly.  The doctors will also need to make sure the pins in her legs are cleaned properly, and that her nerves and muscles are working properly

She will have her fixator on for about 5-6 months, its around 1 month per centimeter- again...depending on how the bone grows.  

When lengthening is performed with external fixation alone, the external device remains in place until the end of the consolidation phase. The average total external fixation treatment time for children is 1 month per centimeter and for adults can be as long as 2 months per centimeter.

When the bone has healed properly the rods of the external fixator can be removed to help reduce tension on the bone.  The rest of the fixator can usually be removed one month later.  Rory will need to have anesthesia when her external fixator is removed.  After she gets it taken off she will have a cast for a short time, about a month or so.   

She should be good till the age of 9.


At 9 she will need her third (and hopefully final) surgery.  We will have 2 options at the time; we can either do a procedure that wills stop the growth of her left leg or do another lengthening procedure.


We would like to do the lengthening surgery because the procedure that will stop the growth in the left leg may leave her shorter than she should be. the great thing about this is that they currently have developed an internal fixture that she will be able to wear rather than the screws and pins.  The internal fixture will be placed inside her on the bone or in the cavity of the bone.

It will be a long road....but we know Rory will do great!




1 comment:

  1. You've done a great job explaining this. I know she will do just fine. It's funny how resilient our kids can be. I wish I could be in FL with you guys but please know we will be thinking about you, praying for you and calling you constantly. :)

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