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Friday, August 26, 2016

The Mayo Clinic

We were very impressed with the facility, doctors and staff at the Mayo Clinic yesterday.  A Resident Doctor Ettinger first spoke with us; he seemed well prepared, having obviously studied Katie’s CT scan from 2013 very well, thus being aware of her lack of facial bone.  He spoke very intelligently about the challenges of being able to create a ‘fix for her jaw.  He created no false hope, stating from the outset that they would have no immediate answers for us, and would need time to meet with craniofacial, maxillofacial, prothedontists and the company who manufactures the hardware they would have to use. 

Image result for mayo clinic logoThen, Dr. Arce came in.  Originally from Puerto Rico, we really liked him.  He, too, offered no false hope, emphasizing the reality of Katie’s situation.  Their goal is to ensure that whatever they do, they do not make things worse.  He implied that due to her previous surgeries, scar tissue, and other soft tissue limitations (i.e. skin) and the osteomyelitis (bone infection) would significantly restrict anything they could do.  He stated that there was no possibility of getting her front teeth to meet, so he asked Katie what her goal was.  Katie stated that she’d merely like to have a couple of back teeth meet so she can chew again.  She told him she’d lost almost 20 pounds in 4 months because those teeth that used to meet back there no longer met at all, and that her diet had been extremely restricted because of the new situation.

We liked that he asked what her desires were. 

We also learned a few things:  
  • It is likely that the lower jaw distractions previously done (2004 and 2011) have NOT retracted as much as we’d thought; rather, the length gained is still there, it is just that Dr. Gordon’s (Cincinnati) method of trying to “bend” the elongated bone, rotating the lower jaw upward, didn’t hold, and instead, straightened.  Now, it is likely that that lower jaw bone is too long for a rebuilt jaw joint.
  • Building a jaw joint may not be possible, depending on what the skull base surgeon finds.  In other words, the jaw joint is a ball-and-socket joint similar to a hip joint.  The “ball” part of the joint has to have a stopper behind it called a fossa.  Dr. Nathan Adams in SLC did not continue with Katie because he did not think the base of Katie’s skull had enough bone to provide that fossa, and that the ball, or end of the ramus (vertical bone of the jaw) would be able to push beyond the base of the skull into her brain.  That’s why he referred us to the Mayo Clinic, saying that they are the ONLY group that could even potentially perform such a surgery.
  • They would not use bone or cartilage from her own body, if indeed they can do anything.  They would have an artificial jaw manufactured.  Dr. David Matthews (North Carolina) has proposed using rib and leg bone to build the jaw joint.  Such efforts are prone to ankylosis, where bone pieces grow together causing stiffness and ultimate seizure of any movement.  Artificial material has no ability to grow into itself, thus preventing any such complication.  (Though obviously, there are other complications with artificial materials.
  • The condyle is the “ball” part of the joint, which, of course, is completely missing in Katie.
She had a new CT scan at the facility, with the goal of creating a 3D model for the team of doctors to study.  The team meets this Thursday.

We also saw their prosthodontist on the team, named Dr. Salinas.  None of these doctors was convinced that a denture would be able to be devised to help in Katie’s case because of the lack of bone.  We had to inform Dr. Salinas that Dr. Egbert, SLC prosthodontist, was convinced that dental implants were not possible in most areas of Katie’s mouth due to the lack of bone density.  (He once did a bone density measurement and found much of her jaw area to have a negative density reading!)

They sent us up to the medical photographer, who took pictures of her face and inside her mouth.  

They will use those, and the new CT scan, to build a 3D model of her facial anatomy.

They will contact us with a plan when they have time to study it and put a plan together, and then they will notify us of what they think they can and cannot do.  A very worthwhile visit!

1 comment:

  1. It's so wonderful to see the specialists come together for this single cause. I really like how they asked Katie what her goals were engaging her as a member of the care team. It sounds like you have some remarkable experts working for Katie. I'll continue to pray for them and Katie.