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. 

Then, 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!

Prosthodontist & MRI

We sure enjoyed staying with our friends, the Lawvers, in Dale City VA Thu & Fri nights.  They are so gracious  to make us so comfortable!

Friday was a real adventure.  Dr. Dorafshar, the craniofacial surgeon, wanted us to see the proshtodontist he works with before we left, so we went directly to the office of Dr. Sinadi for a quick visit.  He was awesome! We really liked him, and we liked the fact that these guys want to work as a team (surgeon and prosthodontist). We again got great reviews about Dr. Dorafshar.  We thought we'd have a team approach at Cincinatti Children's Hospital in 2011, but Dr. Gordon instead worked alone, and thus, it was impossible for him to accomplish the overall goal.

This is actually Drs. Dellon & Swanson from Thursdays nerve exam

Next, we went to get the "Tesla" MRI, which is supposed to be 3X the resolution of a regular MRI. We ran into some difficulties when we couldn't get the steel caps off of KT's ear implants - which MUST be removed before any MRI can happen!  The implanted part of her hardware is all titanium, and is MRI compatible, but those caps are steel, so they can connect to the magnets that hold on her prosthetic ears. Luckily, Paul Tanner, the guy who made her ears, has a colleague RIGHT THERE at Johns Hopkins, who does the exact same type of work he does. So, while waiting for the MRI (they were way behind schedule), we ran over to Juan Garcia's office, and he removed those steel caps. He had real trouble with one of them, it was on so tight. So even if we had the right tool, if we'd have tried to remove the caps, we'd have ended up removing the entire abutment, which would have immediately closed over and been impossible to get back on.

Unfortunately, after all the hoopla of getting insurance approval on time to be able to get this special MRI while we're still in town, the hardware in her head made it impossible for them to get the 3X images, and instead, were only able to get 1.5X the normal resolution.  Oh, well - we did what was humanely possible.

Because we had to delay the MRI until Friday, we didn't get back to see Dr. Matthews in NC for one last pain treatment, so KT's pain skyrocketed yesterday on our drive from VA to NC, and she's quite miserable as we prepare to fly home today (Sunday).

I purchased our tickets to Minneapolis for later this month, so we'll continue our medical blitz so we have all options in front of us for KT to make a well-informed decision as to which way to go.  

Dr. Dellon & Johns Hopkins Medical Center

Facial Nerves

Thursday we saw a completely new Dr. Amir Dorafshar at Johns Hopkins.  He seemed quite overwhelmed by all the issues that Katie presents, and wants time to study the CT scan and come up with a coordinated plan.  We were sent to him by Dr. Dellon, whom we saw once before almost 2 years ago, as he visits Las Vegas every other month.

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.

New Efforts - East Coast USA, Summer 2016

Dr. Matthews working his magic on Katie

Pam and I arrived in Charlotte NC on Wed, 27 July, and Katie met us the next day, as she flew in from Houston after having visited her twin sisters' families for a week. We saw Dr. David Matthews Friday, and he was once again very successful at immediately reducing her facial pain from a level 8 to a level 2, using his miHealth machine (previously mentioned in our 2012 visit on this blog).  It is just amazing to me that this thing works so well!  But it really lifted Katie's spirits, and we're working to purchase a machine for her to get trained on for self-treatment.

Dr. Matthews also reviewed KT's CT scan to see what was done during the 2011 surgeries.  He is a bit mystified as to what Dr. Stephen Baker (Fairfax VA, 2004) and Dr. Chris Gordon (Cincinnati, 2011) thought they could accomplish by merely stretching her bottom jaw bone since she doesn't even have a jaw joint to hold any new structure in place.  The left jaw bone is a full 1" short of meeting the base of the skull in the back, and therefore, any lengthening of that bone still would not have possibly provided any type of mechanical stability.

So, he is going to proceed on these three tracks to help Katie:

1. Facilitate our purchase of the miHealth device and get KT to use magnesium internally and externally to help control her pain (and tapping the distressed spot on her cheek with her finger)
2. Get a release from Katie to allow him to get all jaw distraction records from Cincinnati and Fairfax, so he can study exactly what they did during those original two distractions
3. Study how he can build her a jaw joint, possibly in December, using her own rib and hip bone; he needs the new MRI we'll be getting this Thursday at Johns Hopkins to ensure there is not soft tissue in the way of his building that needed jaw joint.

Dr. Nathan Adams in SLC was going to try to build a titanium jaw for KT a couple of years ago, but he didn't think there was enough bone at the base of her skull for the new joint to pivot upon.  I asked Dr. Matthews about that, and he said he saw a good spot on each side (though the right side is MUCH more bone deficient than the left side), though he cannot see how thick that bone is and needs to do some more studying.  

Katie had a dream a couple of nights ago that her jaw joint actually worked, and she was enjoying a big steak!  So I'm hoping she's receiving actual inspiration as to what can be.  Dr. Matthews convinced her that she really needs to do something, because she can't live the rest of her life with the dysfunction of her jaw that has continued to diminish significantly over the last several months.

Insurance-wise, we need to get this surgery done before she turns 21 in January, as her military health coverage ends on her birthday, UNLESS we can get her enrolled full-time in school.  As a FT student, her coverage will continue until she's 23.  So that's our plan.

We had another visit with Dr. Matthews today, after driving back down from Northern Virginia, where we spent the weekend with old friends from Dale City.  We also had the chance to visit the Pentagon 9/11 Memorial, the Air Force Memorial, and the International Spy Museum.  Again, today, Dr. Matthews was able to get KT's pain way down, even to a Level 1, using the device.  It's so amazing!  I really relaxes her, and she says it feels like a soft cool breeze, kind of like "dog's breath!"  Funny!!!  She loves dogs so much, that having a dog breathe on you is very comforting to her!

Tomorrow, we drive all the way back up to Baltimore, MD, (8 hours), to position ourselves for a Thursday morning meeting with Dr. Dellon (Peripheral Nerve Surgeon), and/or his partner, Dr. Dorafshar, to get a Tesla MRI, which is supposed to be a more advanced type of high-resolution image.  Originally, the idea was for this imaging to pin-point the nerve creating KT's pain, but it will also be very useful in Dr. Matthews' study of how to get her a proper jaw joint.

Thanks for your continued prayers in her behalf. It feels like we're making progress.