Well, we finally got a decision on Alex’s selective dorsal
rhizotomy. The Mayo team has decided not to proceed with the SDR at this
time. An SDR will remain “on the table” as an option to consider over
the next year or two, but only if we see significant improvement in the
strength and control of Alex’s torso and head.
Here’s what we understand about the no-SDR decision. Right now, the Mayo team is observing significant weakness in Alex’s torso and neck; they also note that he fatigues very rapidly when he is walking. By relaxing the muscles in his legs and lower torso, an SDR would make it even more difficult for him to maintain an upright posture. He would definitely recover some strength and control over the year following an SDR, but the concern is whether he would be able to recover enough strength and control to be functional. In the words of his doctor, Dr. Brandenburg, his physical medicine and rehabilitation (PM&R) doctor: “The concern is that if we take away the tone in his legs and we don’t have the tone in his head or trunk, he won’t be able to stand in his walker.” In order to be more comfortable that he would function better, not worse, after an SDR, the Mayo team wants to see a higher baseline of torso and neck strength prior to giving an SDR a green light.
Will he ever have an SDR? Maybe; the option will remain on the table over the next year or two, but it is definitely not a sure thing. The feeling is that he would have to demonstrate a lot of improvement. Toward that end, his doctor is suggesting that we really focus on seeing how much stronger he can get in the next year, and especially over the summer. She notes that most kids have more than a year and a half of therapy to build up their strength prior to an SDR; Alex hasn’t had that, nor has he had the benefit of being active when he was younger, so it is possible that with continued intensive therapy over the next year, we will continue to see good improvement. But again, it doesn’t seem “likely” at this point.
Will he ever walk? Based on what we’re seeing from the gait lab analysis, it seems unlikely that he will ever walk without a walker. Even an SDR or other intervention would probably just improve his function in a walker, not get him out of it. Moreover, especially as he gains weight, Alex’s preference is probably going to be to use a wheelchair. As Dr. Brandenburg said, for him, walking uses the same amount of energy as running does for us. (We’re also aware that improvements in robotic prosthesis technology over the next couple of decades will probably see him walking at some point down the road; see this article for where that technology is at now.)
What’s next? The short version is that we will be zeroing in on strengthening the torso and neck muscles. We’re also going to be having conversations with Dr. Brandenburg and his school and Winona Health medical team about how to move forward to improve Alex’s daily functioning, so that he can be “the best Alex he can be,” as his doctor put it. He is going to get back on Botox and phenol (he will probably go for that on May 8), and over the summer we will be ramping up his baclofen. We will be looking at his equipment needs, too. Down the road, we will revisit the possibility of an SDR; other options that Mayo is interested in considering include a tendon release (cutting tendons to reduce scissoring) and a baclofen pump (implanting a pump to deliver baclofen directly to the affected muscles).
I want to say that Susan and I are not disappointed by this outcome. We have known from the beginning that walking independently was not a sure thing for Alex, so this doesn’t come as a surprise. Our goal has always been to help Alex realize his full potential: to participate in the life of community as much as possible, to contribute his gifts to the world, to love and to be loved. That is our focus, and the particular way that happens is less important. One of the chapters in Susan’s new book looks at the theology of disability, the upshot being that even disability can be used by God to disclose the divine. Not that God wants Alex to be disabled, necessarily, but his plan is to take that disability and turn it upside down and inside out, so that something good comes out of it. We are privileged to be able to participate in that plan, and to witness all the “good fruit” coming from Alex’s life.
Here’s what we understand about the no-SDR decision. Right now, the Mayo team is observing significant weakness in Alex’s torso and neck; they also note that he fatigues very rapidly when he is walking. By relaxing the muscles in his legs and lower torso, an SDR would make it even more difficult for him to maintain an upright posture. He would definitely recover some strength and control over the year following an SDR, but the concern is whether he would be able to recover enough strength and control to be functional. In the words of his doctor, Dr. Brandenburg, his physical medicine and rehabilitation (PM&R) doctor: “The concern is that if we take away the tone in his legs and we don’t have the tone in his head or trunk, he won’t be able to stand in his walker.” In order to be more comfortable that he would function better, not worse, after an SDR, the Mayo team wants to see a higher baseline of torso and neck strength prior to giving an SDR a green light.
Will he ever have an SDR? Maybe; the option will remain on the table over the next year or two, but it is definitely not a sure thing. The feeling is that he would have to demonstrate a lot of improvement. Toward that end, his doctor is suggesting that we really focus on seeing how much stronger he can get in the next year, and especially over the summer. She notes that most kids have more than a year and a half of therapy to build up their strength prior to an SDR; Alex hasn’t had that, nor has he had the benefit of being active when he was younger, so it is possible that with continued intensive therapy over the next year, we will continue to see good improvement. But again, it doesn’t seem “likely” at this point.
Will he ever walk? Based on what we’re seeing from the gait lab analysis, it seems unlikely that he will ever walk without a walker. Even an SDR or other intervention would probably just improve his function in a walker, not get him out of it. Moreover, especially as he gains weight, Alex’s preference is probably going to be to use a wheelchair. As Dr. Brandenburg said, for him, walking uses the same amount of energy as running does for us. (We’re also aware that improvements in robotic prosthesis technology over the next couple of decades will probably see him walking at some point down the road; see this article for where that technology is at now.)
What’s next? The short version is that we will be zeroing in on strengthening the torso and neck muscles. We’re also going to be having conversations with Dr. Brandenburg and his school and Winona Health medical team about how to move forward to improve Alex’s daily functioning, so that he can be “the best Alex he can be,” as his doctor put it. He is going to get back on Botox and phenol (he will probably go for that on May 8), and over the summer we will be ramping up his baclofen. We will be looking at his equipment needs, too. Down the road, we will revisit the possibility of an SDR; other options that Mayo is interested in considering include a tendon release (cutting tendons to reduce scissoring) and a baclofen pump (implanting a pump to deliver baclofen directly to the affected muscles).
I want to say that Susan and I are not disappointed by this outcome. We have known from the beginning that walking independently was not a sure thing for Alex, so this doesn’t come as a surprise. Our goal has always been to help Alex realize his full potential: to participate in the life of community as much as possible, to contribute his gifts to the world, to love and to be loved. That is our focus, and the particular way that happens is less important. One of the chapters in Susan’s new book looks at the theology of disability, the upshot being that even disability can be used by God to disclose the divine. Not that God wants Alex to be disabled, necessarily, but his plan is to take that disability and turn it upside down and inside out, so that something good comes out of it. We are privileged to be able to participate in that plan, and to witness all the “good fruit” coming from Alex’s life.
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