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Tuesday, December 13, 2016

Jaw Surgery Deliberations

KT & her Christmas dog carrier;
We celebrated early due to surgery.
Let me share with you our path of deliberation over the last several months.  We have been so determined to find a solution to Katie's deteriorating jaw and teeth, that we decided to do a medical "blitz" and see all the very best craniofacial doctors and hospitals in the country last summer.  Of course, we didn't go back to Cincinnati, because our experience with Dr. Chris Gordon there was so catastrophic.  Here's what we have done, however, along with a very brief synopsis of what we've been told:

1. Dr. Nathan Adams (SLC): can't do anything about the jaw because there isn't enough bone at the base of KT's skull to act as a backstop to a jaw joint.  Wanted to try titanium, but decided it wasn't feasible.
2. Dr. Amir Dorafshar, Johns Hopkins (Baltimore): can't do anything about the jaw because there is not enough bone. Anyone who says that CAN fix her jaw is way off base and you should not consider their opinion. He also was considering the titanium route.
3. Dr. Kevin Arce, Mayo Clinic (Minnesota):  not sure if we can do anything, so we'll make a 3D model of her skull and study it. Schedule surgery for 22 Dec and we'll let you know whether or not we feel we can use titanium to build a jaw or not.  He has since stated that he cannot do the surgery right now - he needs more consultation and study with Dr. Matthew Carlson, Neurosurgeon, and Dr. Jonathan Morris, Neuroradiologist.  He will call us on the 15th to discuss his findings.

4. Dr. Matthews (North Carolina): famous for fixing jaws using bone and cartilage from the patient (no titanium); received insurance approval to do jaw surgery on 22 Dec (EXACT same day as Mayo Clinic's "holding" date), to work her jaw with rib grafting.


So you can see our confusion:  from "Can't be done!" versus, "Hey, I'm ready to do it." Katie desperately wants to chew, and we know and trust Dr. Matthews, renowned for his jaw work.  He is also the one who has been so instrumental in relieving her pain through the miHealth machine.  We are concerned, however, about the use of her own bone and cartilage, though we haven't ever tried that route - all of the past attempts have been through trying to grow "new" bone through osteogenesis (which didn't work).  We have decided that titanium,  which the new science generally prefers, probably wouldn't work with her because it might eliminate some of her existing bone, which is very sparse to begin with.  With own-body bone, there's always the problem of resorption, which we have experienced twice during previous jaw distractions, but there is also the issue of ankylosis, which other craniofacial doctors have warned us against, when using the patient's own bone.

Katie has fasted and prayed about it, and since she is almost 21, we have let her make the decision.  She has decided to go ahead with Dr. Matthews in North Carolina on the 22nd of December.  He will take two ribs from a single side of her rib cage, to form into the ramus and condyle missing in her jaw.  Then he'll wire her jaw shut for up to 6 weeks to allow it to heal.  Pam and Katie will be out there in NC for the entire 6 weeks; I'll have to come home on 4 Jan to go back to work.

We are NOT looking forward to this - it is HARD!  But Katie thinks it's the best option.  She has been quite stable lately, since the nerve repair in early October really did help reduce her pain significantly.  We certainly don't want to get her back into a situation where she suffers from nerve pain for another 5 years!  Please pray with us that this will work successfully.  Katie has had a couple of dreams about it, and feels she has received confirmation to go ahead with it, so we're supporting her decision.

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