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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