To
Our Brothers and Sisters,
Today
we took Diona to a Neurological/Spinal surgeon for evaluation.
This
was a follow-up referral from an orthopedist who had seen her to
determine if would be safe for her to participate in hippotherapy, as
required by the sponsoring organization. During that visit, the
orthopedist had discovered (thru MRI) what appeared to be an
excessive gap (10mm instead of 3mm) in the joint where her skull
meets her spine.
Today,
the N/S surgeon ordered a thin-slice CT scan to 3D model her actual
cervical spine and spine to skull joint. This scan revealed a
malformation of the 1st vertebra and subsequent erosion, resulting in
the gap that the orthopedist had seen...And more.
For
a simple explanation: The skull to spine joint is supposed to be like
a "ball-and-socket" joint- The top of the 1st vertebra
should be "bowl" shaped, to receive and retain the "ball"
shaped bottom of the skull, allowing it to turn and pivot. However,
the top of Diona's 1st vertebra is flat- allowing the skull to slide
fore and aft, as well as side-to-side. Picture a ball on a flat
surface, rather than in a containing cup. Only her muscles and
ligaments have prevented extreme movement or dislocation.
The
opening in her vertebrae that the spinal cord passes through is appx.
20mm in diameter. Her fore-and-aft movement of her skull can be about
12mm. Side-to-side movement is nearly 7mm left and 4mm right. Already
an hourglass shaped indentation is visible in her spinal cord, from
the pressure applied to it through this excessive/unrestrained skull
movement.
Some
of you may have noticed Diona carrying her head with her chin
lowered. This apparently is the result of the weakening of the
ligaments in the skull-to-spine juncture, due to the stress of the
excessive skull movement.
Currently,
there is a very real danger of severe spinal cord injury or death
from an impact to or severe force against Diona's head.
Therefore,
the surgeon has proposed to fuse Diona's skull and vertebrae (3pcs,
if I recall) together with a stainless steel pin and thin cable to
limit the excess movement. I'm getting more details on and the name
of the procedure- It doesn't involve screws or plates and allows for
more flexibility and growth. Following surgery, Diona would lose
appx. 50% rotational (L-R) motion and 20% up-and-down movement of her
head & neck.
The
surgeon has already successfully performed this procedure on several
children. Its not without risk, as is expected with any spinal-area
surgery.
To
reduce the risk of injury to Diona until surgery, (and likely for
some time afterward) she has been fitted with a cervical support
collar that she will wear whenever she's not sleeping.
As
expected, she really didn't like us making her wear the collar, but
she already seems to have adapted at least partially to it- She
dragged Tehom all over Bass Pro Shops today, at a pace much faster
than normal, wearing both of them out! (She's wasn't walking looking
downward, like she's grown accustomed to.)
Looking
towards that surgery, we've scheduled an appointment with Diona's
cardiologist, for December 3rd, to ensure that he has no objection or
reservations about anesthesia and surgery, (due to her heart murmur).
If not, surgery is tentatively scheduled for the first Monday in
January.
We're
very grateful to our Father God for keeping watch over Diona and
protecting her thus far. We're equally grateful that He directed the
course of her life to reveal this grave situation to us. We're
thankful to God for His mercy and lovingkindness and we're praying
for His wisdom and direction in this matter. We would really
appreciate your prayers on her behalf as well.
Thank
you
Mitch
& Tehom
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