Stand back Robert Downey Jr. – the real Iron Man is laying in a bed in Montreal! Today I wanted to share with you some of the details of our surgery. I was worried to do so before the surgery because so many things could have happened to change our surgical plan. Now that it is behind us, I can show you exactly what happened.
Ben was born with congenital (exists at birth) scoliosis, which basically means his spine was curved. The back is divided into three different segments: the cervical spine (neck), the thoracic spine (chest), and the lumbar spine (lower spine to the bum). Ben’s cervical and upper thoracic spine were deformed at birth. Many of his vertebrae, which should have been shaped like rectangles, were shaped like triangles(ish) and many were fused together. This caused his neck to stand crooked on his spine. The spine generally wants to grow upwards (kind of like a tree – a straight tree – not the crooked ones I referred to earlier in the blog), so Ben’s spine compensated by making his back crooked further down his thoracic spine, creating a new curve. This is where our problems began.
Fixing the cervical spine involves a lot of risk. Most doctors are hesitant to do surgery there because of the specialization required. However, if we only fixed Ben’s lower thoracic curve, the upper curve would look worse and ultimately create its own new set of new problems. We needed to correct the thoracic spine to ensure enough room for his lungs and organs to grow properly, but we also wanted to prevent further bad growth. It was a tricky problem that required a skilled surgeon, which is how we came to be here. Timing was also an important issue because we wanted to do it when he was big enough for the doctor to actually have some fair sized bones to work with, but not so late that the bones became even more rigid and deformed.
Here is an xray of Ben’s spine before his spine surgery. See how the neck is sitting quite crookedly on the spine. Also note the large compensatory curve in the thoracic spine. This xray was taken July 2016.
Then we had our halo traction installed and four anchors were installed in Ben’s lower thoracic spine. These anchors would form the base of our growth rods.
I’ve also included this picture below to show you what the Frankenbolts actually looks like in x-ray There are two coming out of his head (in this picture) and you can see them attaching to the halo. There were six altogether. Does that look like a “pin” to you?
On Monday Ben’s surgery involved removing a wedge of vertebrae and rib out of his lower cervical/upper thoracic spine. Next they took two sliding growth rods and installed them from the bottom of the thoracic spine up to the cervical spine. As Benjamin grows these rods will slide apart and follow his growth. We will continue to monitor them throughout his growing years to make sure they don’t get stuck.
And that is how Iron Man came to be.
Ben had a comfortable night’s sleep. His spine pain was managed well today, but we had a catheter incident this afternoon that caused him considerable pain. As a result, we had to remove his catheter, so now we are trying to wean him off his IV meds and replace them with oral meds. His Frankenbolt holes have been oozing since the surgery, so the doctor has prescribed something to put on those, and I have also prescribed my own coping mechanism (while Jesse is still here). Overall, it was a fairly good day.