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Tuesday, August 2, 2016

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.

3 comments:

  1. Happy you are making progress. We will keep praying

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  2. This is such good news. I've been very worried about Katie and keep her in my prayers regularly. I've been watching for an update and grateful to see this post with such good news. Blessings to you all and especially Katie. Truly a remarkable daughter of God. Love to you all, Robin

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    1. Thanks, Robin. We did this medical "blitz" this summer, because we just HAVE to find some answers! Poor girl cannot even chew anymore, and is losing weight rapidly. Now we'll see what each come up with. Thanks for your prayers!

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