Saturday, March 15, 2014

Let the Cutting Begin!

a.k.a. Frequent Flyer Miles

So, a little late here, but in the biggest news since the announcement of Squirt, the Dot is getting her surgery.  After two years, two surgeons, three hospitals, and three insurance companies, our fight for our daughter has an end in sight.  The beloved—who, incidentally, kicks all kinds of awesome—finally got fed up and on the advice from a cranio forum sent the Dot’s CT’s to one Dr. Jeffery Fearon of The Craniofacial Center.

At this point, I would like to point out that the name of the center is quite accurate.  The Craniofacial Center is the be-all, end-all of the craniofacial world.  Dr. Fearon is the only doctor in the US (world?) who does nothing but craniosynostosis.  Pretty much everyone else is at least a plastic surgeon who at least does cleft palate, hare lip, and—in the case of our two previous doctors—boob jobs and tummy tucks.

He also does free e-mail consults with concerned parents, which is flat-out awesome.  I suspect he does it to get weird cases.  He has 300+ publications since 1985, and I doubt you get that many without scoring some out-there case studies.  Speaking of publications, one of his most recent was an August 2013 retroactive study of 34 of the surgery that the Dot will be getting.  The nearest to that is a center in Paris…with five.

Hey, when your kid is having her head split open in two places, might as well get the best.

Dr. Fearon suggested two tests that we can’t get in this state or any of the surrounding ones.  Welcome to the frontier.  He also recommended an MRI, which, luckily, you can get in Billings.  Unfortunately, the reason we had to go Billings it has to be under sedation for a kid that young.  I have anesthesia-phobia.  See earlier post.

At this point, I would like to introduce the second hero of our story, Dr. Janet Armstrong.  Since the surgeon in Billings wouldn't return our phone calls, Dr. Armstrong cut orders for the MRI.
The MRI showed a seriously warped skull (shocker) and slightly restricted CSF flow secondary to a 5-8mm Chiari malformation.  Said malformation is known to cause transient autistic spectrum disorders.  Hmm, I wonder if maybe we’ve been saying that to doctors for two years.  Or maybe even have two years of documentation from various other docs and early interventionists in three cities in two states.

Once that was emailed to Dr. Fearon, he said she needed a suboccipital decompression for the Chiari and a cranial vault restructuring.  Everywhere else would do those separately, but he feels the risks of two trips under anesthesia outweigh the risk of adding extra cutting to one surgery.  I agree (see aforementioned anesthesia-phobia).  And with 34+ under his belt, he has to be getting good at it by now.

So it looks like we will be flying down to Dallas to get our surgery.  If we can’t get an exception, it will be out-of-network and insurance will only pay 60%.  That said, MSHA claims it can do anything, so out-of-network, they only pay 20%.  My math says that paying 40% is twice as good as paying 80%.  Or you could say them paying 60% is three times as good as a place paying 20%.  Either way, [insert rude and anatomically unlikely suggestion here] Crestpoint/MSHA!  You suck.  Not that I’m bitter or anything over about $3,000 in bills any normal insurance would have covered.

It’ll still be a steep hit, but between my 20% pay raise, grants for travel and co-pay, and an absurdly generous church family, we should come out financially intact. Maybe.


The important thing is the Dot finally has a shot at a normal life.  Here’s to awesome doctors and tenacious mothers.

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