Well, we are back on the roller coaster again with the exception being, I am used to it now. We went back to Dallas for a second consult with Dr. B at the International Craniofacial Institute. I had some questions about the first procedure he recommended (forcing the jaw open while under anesthesia) and the extra bone growth. Apparently, the Dr. had re examined Lucy’s CT scan and enhanced it and came to the same conclusion as I had: question the effectiveness/safety of forcing the jaw open blindly and the extra bone growth. We met and went over the CT scan. You can see in the photo above her right joint is significantly larger than the normal one on her left, your right.
The prognosis is that Lucy will in fact need a more extensive surgery. He will have to cut her open just in front of the ear and remove the part of the jaw that is all fibroses tissue and extra bone. It is his opinion that there will be no TMJ joint left underneath this mass so she will be left with an open joint or no TMJ joint on that side. They will then take part of the muscle just above the TMJ area from the skull and fold it under the skull, creating a space between the two bones to help prevent re fusion of the bones. They will also have to sever a muscle down on the lower jaw so that it won’t contract and pull the two pieces right back together creating the same problem. They will then attach a TMJ distractor. Essentially, this will be pins stuck in her skull and lower jaw coming out of her head with bars and a hinge so it will be able to move with the opening and closing of her mouth. Apparently, we will have to turn something on this contraption daily. The good news is she will be able to open her mouth immediately after surgery. The bad news is everything else. The distractor will be on for at least a month. When he told me I was thinking a year so a month sounded great! During this month she will still have to use the stretching appliance for her mouth and therapy.
Once it is determined that the space between the jaw and skull is stable she will go back in for surgery to have the distractor removed. She will then continue with the stretching and therapy for an undetermined amount of time. The doctor still thinks it is unlikely her jaw will ever grow and that she will probably need jaw distraction surgery when she is 5 or so. Of course, I always have hope that her body will adapt. I think once she is able to open and move the muscle and the whole area is functioning better her growth receptors in the lower jaw may kick in. She will also most likely need major orthodontics and final surgery as a young adult when she is done growing.
You can see in this photo how much smaller her jaw on the right is compared to the left. To me it actually looks like it has been growing still but bunching up instead of elongating like it should. I would think this would be from the restricted movement and the muscles binding everything in place. If you look closely at her teeth you can see the center line of the bottom two teeth are way over to her right side compared to the top teeth.
For now, we are glad Lucy is stable. Dr. B. told us we could take our time to decide on our path and get another opinion if we wanted. That is what we are doing. Right now I am trying to find someone else to get another opinion with. Please pray for wisdom and discernment for us as we go about this process. I know your prayers are working as I have much more peace about all of this compared to how I felt months ago when we got the diagnosis and initial recommendation of the rib graft. We are eternally grateful.