At Cicily's appointment with her craniofacial plastic surgeon, Dr. S, on Tuesday we learned that the jaw distraction (mandibular distraction osteogenesis) is a go!! Sometimes the jaw bones or joints (temporal mandibular joint) aren't developed enough to distract a jaw. So before they can distract, they need to graft bone and let it heal. Dr. S said Cicily's bones are all very small and underdeveloped (hypoplastic) but that they should be able to withstand a distraction and grow well. YAY!!!
How does jaw distraction work? Here is what I've gathered: There is an initial surgery where the lower jaw (mandible) is cut on each side and the distraction device is put into place, which consists of metal rods and screws. Then the patient goes home and the parents turn the screws on the device typically once a day for 2-3 weeks. This moves the bones out and down, leaving a gap in the bone where it was cut. For the next 2 months the device stays in place so that new bone can grow in and fill in the gap. Thus lengthening and growing the jaw bone. Then 3 months after placing them, another surgery is done to remove the distractors. Distraction is done - Happy Day!
To see an awesome video explanation, go to http://www.pedsent.com/surgery/swfs/distraction/distraction.htm Click on "How distraction works"
So, with Cicily now they send out her CT scan to have a silicone 3D model made of her head (I'm picturing beauty school practice heads). Once Dr. S gets the model, she'll take the distraction device she thinks will work best and actually do a "practice surgery" where she cuts the model and places the distractor rods and pins and then turns the pins to see what kind of movement she can get with that device and a model of Cicily's jaw. Then, if it works out well, we're ready to distract. Surgery will probably be scheduled for April. And the hope for this procedure is that it will make eating easier and create an adequate airway and make the trach unnecessary.
5 comments:
You didn't even mention this tonight when I saw you! Guess I have to check the blog to get the details on Cicily. That seems like good news. Yuck to have another surgery but yea that you can do it.
I am excited that she is a canidate. The sooner the better I think. She won't remember all these surgeries. I am happy for you all. Hope to see you tonight!
Congratulations Cicily! Hopefully everything goes just as well as her cleft surgery went. Good luck.
yea! i'm so happy for you and for cicily. we will pray for your family and i really hope everything goes well for you.
I just wanted to drop a line really quick to let you know I have a little sister with TCS and she too is going in for her second jaw disctraction this coming month. Your daughter is beautiful!
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