Neavey’s Spine Saga: Part 2

Now fast forward another seven months or so to March, 2012. It is time for Neavey’s next check-up with the orthopod. I (Keith) opt not to miss work for the appointment since we’re anticipating a routine visit, and Neavey’s dad will be there with Kelly to help lift and transfer Neavey for xrays, etc. When the doc comes in, he asks if we ever met with the spine surgeon he recommended. (He never received information about the appointment, even though he should have since he had referred us and even though we'd confirmed with the surgeon's office when we were there that they would send information to the orthopod.) We (Neavey’s dad and Kelly) reported what we heard from the surgeon, that Neavey wasn’t a candidate for surgery and that the surgeon suspected her scoliosis and kyphosis probably wouldn’t get too much worse anyway.  



The orthopod responded with clear frustration and a little anger about the fact that he hadn’t heard about this appointment and that we hadn’t followed up sooner. He felt we really needed to get a second opinion. He was quite concerned about how much the curves in Neavey’s spine were continuing to progress, and he worried that, without surgery, the curves could get so bad that they would threaten the functioning of Neavey’s vital organs (heart and lungs in particular), and would almost certainly be debilitating enough for her that we would no longer be able to care for her at home. The timing of the surgery, the orthopod indicated, would be tricky. The surgery might or might not be urgent, but if the curves progressed too far surgery might no longer be an option. Harder still was the likely scenario he described that by the time Neavey’s curves had progressed so far that we’d be certain surgery was necessary, it might already be too late for the surgery to be undertaken.

The orthopod referred us to what he felt was our only alternative for a second opinion: Scottish Rite hospital in Dallas. He explained that Scottish Rite specialized in more unusual pediatric bone cases, and told us that the surgeons there would have much more experience than anyone in Houston doing spinal surgery with a kid like Neavey.  (This was consistent with what the Houston spinal surgeon had told us as well.)  Because the wait for an appointment at Scottish Rite might be months, the orthopod wanted us to set-up an appointment immediately.

And so, the prospect of spinal surgery loomed again. Kelly and I both dreaded our next appointment, and expected to face at least a pair of difficult and unclear choices. What we anticipated hearing went something like this. One choice would be to subject Neavey to a major and life threatening surgery that would attempt to straighten her spine. Even if she survived it, the surgery could be unsuccessful (a likely outcome, according to the surgeon in Houston), leading to further surgeries, possible infection, additional complications, and the prospect at best of a long and difficult recovery and rehabilitation. Or, on the other hand, we could choose not to do the surgery, and risk watching Neavey’s body, over the course of her teenage years, gradually contort until it almost literally squeezed the life out of her. She might suffer months or years of even more limited mobility, and even more intense and difficult care, and her decline could be long, slow and painful.

Of course, each choice could turn out ok too. The surgery could go smoothly and might help Neavey. Or, the curves in Neavey’s spine might not progress so radically. Kelly and I figured we'd want not to subject Neavey to surgery, but mostly we tried, simply, to just focus on the next appointment, and attempted not to think too much about Neavey’s spine until we had more information about the choices we faced.

Fortunately, Neavey helped us by being mostly happy and strong, and by serving, as she does, as a compelling reminder for us that at most moments all that matters is the present, and that the future will work itself out without us trying, in vain, to foretell or control it.