Last night we learned that Taylor appears to be a good candidate for the facial reanimation surgery.
While I was driving back from Tampa, Suzie was at home and Taylor at a friend's house, the Surgeon conferenced us all together and explained the 3 options available.
One involves cross matching nerves from the unaffected side of his face to the paralyzed side. But, since testing at Shands showed the nerves on the paralyzed side are essentially dead, that procedure isn't an option. The second one is to harvest a muscle from the leg and attach it to nerves and tendons in the face. Although it tends to create a bigger smile, it takes up to a year for it to start working. Because of the size of the muscle, there would likely be a bulge in his cheek. His hospital stay would be about a week, and it's about an 8 hour surgery.
The last option is the one we had heard about from the Doctor at Shands in Gainesville. The surgery is a couple of hours and he'd be in the hospital overnight. The smile is about 1/2 the size of that created with the leg muscle, but it's a lot less invasive. Once completed, the results are immediate. The smile won't be automatic. He will have to learn how to "train" the muscle to smile by gritting his back teeth together, which will trigger the muscle to activate the paralyzed side of his mouth. Initially, when he deliberately wants to smile, he'll have to remember to trigger the muscle. But the Doctor said over time the brain will eventually know that when it's time to smile it will signal him to grit his back teeth and cause him to smile.
He said most patients choose the third option, and all have been very pleased with the results. There have been no bad outcomes, and all have worked. Only two patients have had any complications, and they've done about 30 of the procedures so far.
This Doctor reminded us what the Doctor in Shands told us - that Taylor will have other surgical procedures in the years ahead as he ages. The biggest concern will be just below his eye. That will begin to droop causing his eye to dry out while sleeping that can lead to scratching of the cornea of the eye. For the rest of his life, he will continue to see a Surgeon who will monitor changes in his facial tone in order to make adjustments.
We don't know the insurance future with regard to those procedures. On his birthday later this year, he'll no longer be on our insurance policy. When he gets his own policy and they find out what happens, there may be some real issues getting him insured. For now, we're concentrating on getting everything done while the insurance holds out.
If he gets the final approval from Johns Hopkins, he'll be in a very small fraternity of people with facial paralysis who have been given back the ability to smile. We've really missed seeing Taylor's full smile and pray that he'll get the final approval for the surgery and it will be a success.
Taylor will have to go to Baltimore to be examined in person before they make a final decision, but so far it looks really good for him. He's very excited about the prospect of getting back some of the smile that he's lost.
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