We tend to short-hand Namine’s orthopedic doctor as primarily caring for their legs, since those are the most obvious things affected by them having caudal regression. The reality is, there are so many bone-related issues which stem from it. When Namine still used a walker and AFOs (ankle-foot orthotics), the focus was on walking. Now, since they no longer use a walker or wear AFOs, the focus has been on the increasing amount of back pain they experience on a daily basis. Today was their annual X-ray and follow-up discussion with their orthopedic doctor.
The first step, of course, is getting the X-ray of Namine’s back. There’s nothing new there for us; we’re old pros, and Namine has no qualms about telling the techs exactly what has to happen. (They have to lay down for the imaging, but at the same time they need to remain somewhat elevated due to how their circulation works post-Fontan.) That said, Namine is always polite but firm — only when staff do not listen do they take on a stern tone (and with our blessing, I might add).
Namine’s current orthopedic doctor is not new to us; they’ve been seeing him for three years now, but we still refer to him with each other as “the new ortho.” We still miss their previous doctor, with whom they had a special bond. He was, after all, one of two doctors who worked tirelessly to save their foot. But I digress.
The doctor brought up the X-ray from last year’s checkup, then today’s for comparison. There is no noticeable change in the curvature of Namine’s scoliosis, and for that we are thankful. An increase in the curvature might mean surgery, and we have enough of that planned for the future as it is. As a matter of fact, the curvature has actually decreased, due to Namine having grown taller in the past year.
As for Namine’s ever-present back pain, he believes it to be purely muscular in nature. Last year, he referred Namine to physical therapy to address it. It did nothing for their back pain, but the PT did at least help with recovery from surgery early last year. With that in mind, this time around he’s going to see if a chiropractor might help them instead.
There was something else we discussed with the doctor as well, and this is an odd one. Namine will occasionally tell us that their leg hurts — it’s usually just one — so much that it feels like it’s broken. (The fact that they bring up pain to us at all tells us it’s bad.) I hesitate to say this happens frequently, but it still happens once or twice a month, so it’s enough that it’s repeating and concerning.
The doctor explained to us that patients who spend most to all of their time in a wheelchair will experience this. Leg bones — really, bones in general — respond to stress. Stress tells the body, “Hey, you need to get stronger.” Because Namine doesn’t use their legs except for transfers, and standing only to climb in and out of the car, this might be a sign that they need further supplements to help increase bone health. Namine already takes vitamin D, but the doctor might have other alternatives in medication.
In the meantime, Namine will be getting a bone density scan. They had one several years ago, but in those days they really were breaking their legs easily. Fortunately, that’s no longer the case, but if we can reduce the amount of daily pain they’re in, that’s worth pursuing.
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