It was Monday, August 11, 2014. After packing up books and electronics to occupy ourselves with in the likelihood that our worked in appointment would take several hours to get to, we picked up Girl Child from school and headed to the spine center. We weren’t even sure if we were going to see the same doctor (Dr. C.), but when we arrived, they told us we were still seeing him. We filled out the paperwork and settled in for the anticipated long wait, but they called us back within 5 minutes. We spoke with an assistant first, and when she got a look at the x-ray, it was a repeat of the scene with the front desk nurse; she picked her jaw up off the floor then proceeded through a series of questions. She asked Girl Child if she had any headaches (not unless she needs new glasses), issues with bathroom accidents or difficulty going to the bathroom (none of that), any pain (yes), any numbness or tingling (no). Then she told us Dr. C. would be in momentarily. We again figured we would be in for a long wait, but he came in a minute later.
He stood in the door and took the sight of us in. “You all look nervous.” We told him that looking at the x-ray, we knew we had reason to be. He sat down to start looking through files. “Ah, you’re the folks who came this morning! I glanced at it, but the nurse just told me I’d be seeing you guys today no matter what, and I know better than to argue with her, so I told her to bring me a sandwich for lunch.” We liked him immediately. He called up the x-ray and said, “Yep, she’s the real deal.” He measured her curves–an S-curve–at 84 on top and 91 degrees at the bottom, then he looked at us and said he was probably going to ruin our day in one fell swoop. Don’t read any callousness into that. His demeanor was not remotely callous but rather a magical and difficult-to-describe combination of honesty, kindness, and light-heartedness where he could reasonably inject it. We told him we’re fairly well educated and appreciate candor. He told us there are only three options for scoliosis treatment, the information I already knew.
“We can wait and see,” he said.
I said, “That’s not a wait and see curve.”
“No, it isn’t. We can do a brace, but you know what?”
“That’s not a brace curve, either, is it?”
“No, it isn’t. So we only have one other option: surgery.”
We’d known it since we saw the x-ray the night before, but Girl Child had not really processed this yet. Dr. C. told us we’d need some more x-rays as well as an MRI, because of the speed with which her curves progressed. While most adolescent scoliosis has no known underlying cause, it also typically doesn’t progress from zero to train wreck in the course of a year unless there’s something else going on to cause that. One big thing he was looking for was something called “tethered spinal cord” where the spinal cord gets stuck along the spinal column and tugs as the child grows. There were about three other unpronounceable issues he was looking for as well. On an up note, he told us Girl Child’s case actually isn’t the worst he’s ever seen (127 degrees!!!), which was actually very comforting to me. He also told us a little of his background as a member of the Scoliosis Research Society who studied with the doctor who literally wrote the book on spine surgery.
As soon as he walked out of the room to get the x-ray set up, Girl Child began sobbing, fearing this big unknown of surgery. The radiology tech came in and found her sobbing in my arms, and she talked to her for a bit, telling her it’s understandable to be afraid of the unknown, but that she’d feel so much better once she is fixed up. We took the x-rays that day, and the MRI was scheduled for that Friday, Aug 15 with a follow up at his office on the following Wednesday, Aug 20. She told us she didn’t want to hear the word “surgery” since it was so scary for her. Instead, she decided we should use a euphemism for it: “fluffy ice cream”. We gladly used this euphemism, knowing how hard this all was for us to face much less how much harder it would be to face it at 11. That night when I tucked her in, she told me she wasn’t scared of the word surgery any more, and that she had accepted it. I was floored at how well she was processing through things.
Girl Child did amazingly well with the MRI, never showing fear or nervousness. They scheduled it at the children’s hospital, so the staff were all very kind and very good at explaining what to expect. We joked around about going into Magneto’s Lair and living to tell about it. We got dinner together afterwards and set about having a normal-as-possible weekend not worrying about the results. I’d hoped since she wasn’t having neurological issues that the MRI would show no underlying problems, and I felt strangely calm about the whole thing. Wednesday came and we were back in Dr. C’s office. He gave us the best news possible: no underlying complications. She just has an incredibly rare case of adolescent idiopathic scoliosis that progressed much faster and much further than typical. He got another few x-rays: bending toward each side and an x-ray under traction where she held onto the table and he pulled her ankles. He joked around with her about the lead apron and neck shield he was wearing, asking if she thought it would be the latest fashion, and he promised not to pull her in half for the traction x-ray.
After looking at those x-rays, he said her curves looked fairly flexible, and he figured he could correct at least 50%, which is the typical correction aimed for in surgery. But he also told us that the goal wouldn’t actually be to make her perfectly straight–they actually can’t completely correct curves so large–but rather the goal was to give her a balanced spine. He also wanted her to be able to walk down the street and no one ever notice any difference compared to anyone else. He talked about needing to do the correction as two surgeries: one surgery would go in the front side, remove a rib,remove vertebral discs, and fuse vertebrae; the other surgery would go in through the back to add screws, hooks, and rods and fuse vertebrae on that side as well. He was hoping he could stop the fusions at L3–the third lumbar vertebra–because stopping there meant the least chance for back problems later in life. However, he emphasized how important it is to plan plan plan, and that he would be studying her images a lot in the coming weeks to devise the best plan.
It was a lot to take in, but he gave us ample time and attention for questions. Girl Child asked about pain, and he told her he wasn’t going to lie, removing a rib would especially hurt, as would other things he’d have to do, but that he promised her pain would be controlled with a pain pump when she needed it. At one point, she looked at us and said, “I’m tired” (which she says a lot), and he looked up immediately and asked her very seriously, “What can I do for you today?” Her tiredness had nothing to do with the scoliosis, but his very serious concern for her was comforting, and his recognition of her as someone who should be fully involved in the discussion was exactly what she needed. Throughout everything he and his staff have shown the utmost in caring, concern, and kindness, and it’s really helped us…
(To be continued…)
