We also saw Dr. Dellon again, a peripheral nerve pain specialist, in his office in Towson, MD. He made a very interesting diagnosis that was quite different than the doctors in Utah, and which I think is more accurate. He found that KT's pain is referred from the zygomaticofacial nerve (cirlced in red), rather than the infraorbital nerve (red X) that everyone else has focused on. He shot her with novocaine there, and it completely took her pain away; however, it also numbed her right lip and affected her smile negatively. Dr. Dellon told us that might happen, because he said with KT's anatomy, some of the motor nerves might be bundled in that same area, which would not be the case where there is a normal cheekbone (KT has NO cheekbone!)
He's obviously much more skilled in nerve issues than anyone we've seen. It was refreshing to know that he could go in there in a relatively simple surgery to actually kill that one nerve that's causing the pain. He assures us he would test each nerve when he got in there to ensure he didn't kill any motor nerve. This test injection in clinic was very generally applied and he'd be much more specific during the actual surgery. He could do the surgery as early as September, if KT decides to go with it. Of course, it is not without risk. But, it also makes sense that the area where this nerve presents is also the exact same area where the big abscess formed in Nov 2011, and coincides with the surgery to fill in the deep clefting she had where her right ear should have been.
Dr. Dorafshar wants to put together a complete craniofacial surgical plan to help KT's jaw, face and teeth. We aren't thinking along those lines right now, though. Our #1 focus is relieving her pain, and then, creating a jaw joint so she can chew. The other incidentals aren't important to her. If the miHealth machine controls her pain without medication or surgery, that still seems like an awesome option.