Selective Dorsal Rhizotomy: Making Bigger Strides in Spastic Cerebral Palsy

00:00:00 Music 00:00:03 Host: Hello and welcome to this edition of Cook Children's Doc Talk Podcast. Today we're talking with Dr. Stephanie Acord about selective dorsal rhizotomy. Dr. Acord is the medical director of movement disorders and neuro rehabilitation at the Jane and John Justin Institute for Mind Health at Cook Children's. She received her medical degree from the University of Kentucky, College of Medicine, and completed her residency in child neurology at Children's Hospital of Pittsburgh, of UPMC. Today, Dr. Acord is a highly respected pediatric neurologist specializing in children, teens and young adults with neurological conditions. And she has a special interest in advancing the care options and outcomes for patients with movement disorders, including cerebral palsy. Welcome Dr. Acord. 00:00:50 Stephanie Acord: Thank you. I'm so glad to be here today. 00:00:53 Host: Dr. Acord, can you start us off by giving us a brief overview of the SDR program here at Cook Children's? 00:00:59 Stephanie Acord: Our selective dorsal rhizotomy program started in 2016, and the team that we have in place has essentially been the team that we started with. And selective dorsal rhizotomy, or what we refer to as SDR, is a very specific surgery that, usually, a neurosurgeon completes with the assistance of a physician that's doing the addition of monitoring within the operating room, in which we essentially dissect out different roots into what we call rootlets, so different levels within the spinal cord, and we separate out and test each individual nerve. And what we're doing is we're looking at the sensory nerves, because essentially, there's almost like a sensor in the muscle that feeds back to the brain and spinal cord to talk to the brain and spinal cord to tell them how tight the muscle is pulled. 00:01:47 Stephanie Acord: And so essentially, there's a disruption within that pathway, and as a result, the muscle keeps getting told to pull tighter. So as a result, what we're doing is we're looking into which nerves are communicating properly with the brain and spinal cord, and which ones seem to be giving abnormal signals. And then once we identify the abnormal nerves, then we end up talking with the surgeon about which ones to cut. And we'll talk a little bit later about what are the some of the differences of how much percentage-wise, we cut within different institutions, of why you may want to select one institution versus another. 00:02:23 Stephanie Acord: The best candidates, from a population perspective, are kiddos that have cerebral palsy, and in some cases, some patients that have a progressive neurologic condition. And there's two, almost a thought, if you will, in terms of what's the goals? And I think we need to keep that in mind as we move through this podcast of why are we choosing certain patients and which options may be the best for them in terms of treatment options, because we kind of look at it as, there's kids that are more ambulatory, and the goal long term is to keep them ambulatory versus there are some kids that are dependent on a wheelchair, and they are kiddos that, for instance, may have challenges in terms of pain and discomfort and challenges with daily cares from a caregiver's perspective. And so those pathways of what the options are and how aggressive we are are potentially different depending on what those goals and opportunities are for those individual patients. 00:03:19 Host: So, you're a specialist who works with movement disorders, conditions like cerebral palsy. What are some of the typical treatments that have historically been available for these types of diagnoses? 00:03:28 Stephanie Acord: So when we think about treatment options, I like to think about things of least invasive to most invasive. So least invasive would be things such as physical therapy, potentially occupational therapy, you can kind of add in orthotics in terms of bracing that may help keep a kiddo in a particular position or prevent weakness in terms of toe dragging. And then you kind of move up into your oral medication, such as baclofen, for instance, is probably the one most widely used. And then, you know, being a little bit more invasive would be chemo denervation with certain injections such as Botox or Dysport. And then, you know, after that, then you kind of start moving into the surgical approach, which is near more invasive measures. And so those can be things such as baclofen pump. It can be things such as orthopedic surgery or, in this case, an SDR. And so the big thing always to think about is, where within the nervous system are you trying to intervene? Are you trying to intervene as far as possible upstream, or are you kind of as downstream as possible? So from the SDR standpoint, that's kind of about as upstream as you can get to try and kind of get to the root of the problem without actually doing brain surgery. And then things like orthopedic surgery are going to be kind of more downstream in terms of your affecting soft tissue, bone, that type of thing, but you're not affecting kind of the interactions and pathways in between. And so yes, you might do something like orthopedic surgery, but we always try and teach our orthopedic docs tone before bones, because things don't hold long term if you're not addressing the underlying tone and the miscommunication that's going on from the brain down to the muscles and nerves. 00:05:07 Host: So what treatments has a patient typically gone through before being considered for SDR? Stephanie Acord 05:13 So, SDR is not usually the first thing that we're talking about when we're discussing options with families, unless they have been specifically referred for an SDR. So I kind of think about it in terms of it's similar to an intractable process of kiddos that have tried multiple medications for epilepsy, or tried multiple medications for headaches and migraines, that we have tried multiple different options that have either been effective at one time, maybe they were not effective at all, or maybe over time as the child has grown, that effectiveness has declined over time. And my personal opinion is that things like chemodenervation is not a long term solution. It's a bridge to get them through growth. For instance, it's a bridge to get them to orthopedic surgeries, or potentially, in the case of SDR, it's to get them through growth for a few years until we figure out if they're an appropriate candidate for something like SDR, which is more long term kind of permanent improvement for these patients. 00:06:12 Host: So, what does a workup look like at Cook Children's, and how is it different than other facilities? 00:06:16 Stephanie Acord: So our workup here at Cook Children's is a little bit of a lengthy process. We want to make sure that when we select a patient, that we make sure that this is the correct and best option for them. And so our workup, to be quite honest, sometimes it can last up to a year. And that has to do with the fact of if, for instance, a patient is getting something like chemodenervation injections, then we like to make sure that that medication completely wears off to get an unbiased, unmedicated picture in terms of what they look like at baseline. So usually we like to, if they'd gotten injections, whether it's at our facility or somewhere else, and we usually like to allow for that to wear off for six months or so, and then we start the process. Now, we know that things can potentially get worse a little bit in between, but we feel like that's most beneficial for the patient. So once the workup has started, depending on whether or not the family lives local, if they live far, is whether or not we kind of combine everything within a one week period, or we can kind of separate and space things out. But the first thing that usually happens is that we do an evaluation in our motion analysis lab. If they're an ambulatory patient, to capture what their gait pattern looks like before surgery. And there's a lot of analysis that we can do for these patients. And then usually when we review these studies, neurology as well as orthopedic surgery is there, as well as physical therapy, to do further analysis. 00:07:44 Stephanie Acord: So that's step one. And then if we figure out that they're a good candidate based on the motion analysis lab, then we move on to what we call an intrathecal baclofen trial. And this isn't a true correlation on how we feel like these kiddos will do after surgery, but it really gives us a good idea in terms of a lot of these kids rely a lot on their tone, and when you abruptly take that tone away, you want to see underneath ... when you expose their underlying weakness ... because we know these kids have underlying weakness, how much is the tone really affecting kind of their daily independence, right? If you take a kid that's walking even with an assisted device such as a gait trainer, and then all of a sudden, you abruptly take their tone away, which is what you would do in an SDR, if now they're not able to bear much weight on their own, or, you know, take steps independently, you have completely changed their daily kind of life. And not to say that they wouldn't necessarily gain some of that back, but it's ... it's something that we really take into consideration on how well are these kids gonna do? 00:08:44 Stephanie Acord: So we do an intrathecal baclofen trial. So I like to think that they, you know, are almost like Cinderella, that the medication wears off. So kind of ... you go to sleep at night, the following morning you wake up and the medication has kind of worn off, and they go back to how their tone was before. And we usually do some physical therapy assessments during that intrathecal baclofen trial right before they get the medication, and then two hours, and then four hours, usually is around lunchtime, and most of the time, the neurologist that's evaluating the patient will then go down to the area where they're recovering. And then, in addition to physical therapy, we get them up. We get them walking to see okay, when you take away some of their tone, how do they look? Now if, for instance, the kids are really sensitive to anesthesia, or they just are not cooperative, or chance that you're kind of on that fence of, "I don't know, maybe they could do okay. Maybe it's just that they're not quite used to this different feeling of their legs." 00:09:40 Stephanie Acord: And sometimes we will opt, with the family, to do what we call a three day catheter trial, where they end up getting a catheter placed with the neurosurgery team, and then they come up to our rehab unit, and they usually stay for about three days, and they're getting pretty intensive physical therapy during that time to get a better idea, because again, moving forward with an SDR is a permanent surgery. So we want to make sure that we've dotted our I's, crossed our T's, to make sure that we really feel like this is a good candidate for the surgery. And then throughout, if we feel like after we do that portion of the assessment, again, they're getting constant PT assessments throughout this whole process. But then we would obtain new imaging of the brain and spine prior to surgery. They would meet with our neurosurgeon, Dr. Roberts, who's completed all of our surgery since 2016. And then, usually at the end, we would kind of circle back within the neurology clinic to discuss all of the different findings, go back through the whole process with the family and make sure that they feel comfortable with the decision and the recommendations of the team. And then, if we decide to move forward with rhizotomy, then the family has the option to be able to come and tour the rehab unit to kind of get a better idea of where they're going to be spending a fair amount of their time after the surgery. 00:10:54 Host: You mentioned motion analysis. So what role does that play in the workup? 00:10:59 Stephanie Acord: So for our patients, if they are undergoing kind of more of the ambulatory pathway, then all of our patients do get motion analysis in the Gait Lab. And so that is detailed in terms of when a physical therapist, who's been in the lab for at least 10 years now, she will go and put in markers that go on different parts of the joints that reflect, they will bring their adaptive equipment, such as a walker or gait trainer. A lot of times they have to tape it up, because from a reflection standpoint, it can cause problems with the cameras. And then she does some different kind of stretches for them prior to, and then we watch them walk. So we have videos to be able to review later on, we have what we call force plates in the ground to be able to see how their weight shifts in terms of: as they walk from one foot to the other, do they have weight distributed consistently on a small portion of their foot? 00:11:54 Stephanie Acord: And then a lot of times, we will also study them when they have the orthotics in place as well, to see whether or not that changes their pattern at all. And then we review those studies as a team, and then we kind of determine whether or not we feel like, "Is there enough tone that we have picked up on within the study that we feel like that needs to be addressed? Or do we feel like an orthopedic intervention is best and things like SDR are lower on the list in terms of intervention?" I would like to mention that we usually … if we feel like kiddos are potentially leaning towards an SDR, we prefer, usually, that they don't undergo orthopedic intervention prior to SDR, just because sometimes that can kind of over weaken those muscles. And then sometimes the families aren't as happy with some of the results that they get afterwards because of the over weakening, because again, when we take away that tone, we know that we're going to expose underlying weakness. And then if you had already prior affected the integrity of the muscle so that it was weakened from an orthopedic surgery, then it's kind of almost like this double hit. And not to say that kids aren't going to need orthopedic surgery after the SDR, but sometimes you can delay it longer, or you can make it so that maybe they don't have to have such a complicated surgical intervention afterwards. 00:13:13 Host: So what is the significance of having a motion lab, and what role does it play in the diagnosis, surgical planning and recovery of SDR candidates. 00:13:22 Stephanie Acord: Well, luckily here at Cook Children's, we do have a motion lab in which we can attack things from a multidisciplinary approach. Not all institutions that have SDR programs do have the capabilities to have motion lab within their diagnostic workup. Luckily for us with the multidisciplinary approach, this allows multiple different specialties to review these videos and the gait patterns to determine whether or not, from a surgery intervention standpoint, which pathway is the best for each individual patient. The other thing that I would say, from a motion lab standpoint, is that a lot of times it can help us to tease out which different kind of dynamics of their gait, pattern of whether or not things look more like truly from spasticity, or whether or not it looks like there's dystonia, or there's a combination. It seems like, very rarely, are there patients that have pure spasticity. And so you have some patients, for instance, that spasticity might be the major symptom. However, they might also have a little bit of dystonia. And in cases of patients that have mild dystonia, we don't necessarily exclude them from being an SDR candidate. However, we do like to have conversations with the families that the dystonia sometimes can be a little bit unmasked during the surgeries or afterwards, as we make the spasticity better, but don't necessarily affect the dystonia. And so the motion analysis sometimes can help us tease out, "How much do we feel like is spasticity? How much is dystonia? How much is there overlay between the two?" 00:14:57 Host: So, how many specialists are involved in the diagnosis, planning, surgery, and follow up care? 00:15:02 Stephanie Acord: So, I would say this is definitely one of the things that vary within different institutions. Here at Cook Children's, the major team members for SDRs are the neurosurgeon, which is Dr. Roberts, who, like I mentioned, has been the one who's done every surgery here at Cook so far, since 2016. We have a few neurologists that specialize in SDR, the orthopedics team, physical therapy, orthotics and Child Life. And then, in terms of who's actually in the operating room with the patient during the surgery itself, usually the two that are in the OR are the neurosurgeon and the neurology team. 00:15:42 Stephanie Acord: So the neurosurgeon is the one kind of doing the surgical slash technical components, and the neurologist is the one in there doing the intraoperative monitoring of the different muscles and nerves and looking at the patient, both clinically kind of down at the feet as well as monitoring on the computer screen to be able to determine whether or not the nerves that we're stimulating are normally responding or are they abnormal? And then we usually will tell the surgeon to cut or save the different rootlets. And then we're also kind of doing a running tab to be able to see, percentage wise, what do we feel like, where are we at? So different institutions have different levels of aggressiveness, not only in terms of what the goal is for surgery. If they're an ambulatory kiddo, we usually are a little bit more on the conservative side. And a lot of times we'll cut maybe between like 45 to 55% of the rootlet. Give or take, each level could be a little bit different. But we aim for 45 to 55% on average, and then in the more limited goal patients, then we are more aggressive with those kiddos, and a lot of times we'll cut more like 60 to 70% so that's definitely one of the things that different institutions have different goals in mind in terms of for individual patients, of how much they're potentially going to cut. But one of the things the patients will always know is that the neurologist that usually has been following this patient for a while and going through this whole workup with the patient is the one that's specifically In the operating room talking with the surgeon, directly, telling them which ones to save, which ones to cut. Sometimes, for instance, if there's a kiddo that has a little bit more tightness and or weakness on one side, we usually can also tell that within the operating room, in terms of one side seems to be more abnormal than the other. 00:17:38 Host: So what determines if a patient is a good candidate for SDR, and what type of SDR procedure they'll have. 00:17:45 Stephanie Acord: Again, if we break things into ambulatory versus limited goal, and we said mainly from a spasticity standpoint, these are going to be your kiddos that are going to be the optimal patients for SDR. And again, from a dystonia standpoint, it doesn't mean that they can't, but just having these discussions with the families in terms of if there are concerns. Sometimes, for instance, one of the more common things we see in some of these cerebral palsy patients that are ambulatory is that they have what they call scissoring, where, when they take steps, their legs kind of draw in. They have a narrow base gait. And sometimes they actually essentially cross one leg over the other, which can be challenging. And so a lot of times, from an SDR standpoint, we don't fix that, because that's most of the time, more dystonia, in most cases, than spasticity. And so just being upfront with the family, so it's not after surgery the patients when they start walking and that the family says, Well, that didn't help that, and just being upfront with that is really important. And then the other thing for some of our limited goal patients is that we do offer, in addition to a selective dorsal rhizotomy, we do have the option to do what we call a ventral rhizotomy, which is a lot of times a much smaller population in which they may benefit if they're having very significant pain and or discomfort in challenges with daily cares, that a ventral rhizotomy, in addition to the SDR, may be an option, but the big thing with a ventral rhizotomy is that that leads to more permanent decrease in movement of the legs. And so that's where a lot of times these kids originally are very stiff prior to surgery, and then the families have to relearn how to take care of them afterwards, because then they're essentially limp from the waist down. And so that's one important thing that families come in. They're like, Well, I've been taking care of them for 15 years. I know how to take care of them, but it looks different after the surgery, sometimes and again with the ventral rhizotomy. So dorsal rhizotomy is you're cutting sensory nerves. Ventral rhizotomy is you're cutting motor nerves. So you have to make sure that they understand that that once you cut, you can't sew the nerves back together so that movement is gone. Yeah, but some of the patients that we have done it for, they have had great results. But it's like I said, a much smaller percentage of the population compared to just the selective dorsal rhizotomy alone. 00:20:11 Host: Are there certain age groups that benefit more from SDR? 00:20:15 Stephanie Acord I mean, you can technically do SDRs as young as three, sometimes four. In my opinion, the sweet spot is really kind of like five, six up to really eight, sometimes 10. What you really want is you want them social maturity wise, to be able, to be able to listen to the directions, to be able to understand that even though they used to be able to twist and turn and, you know, pop up and wiggle and squirm prior to surgery, after surgery they have very strict precautions to prevent them from opening up the surgical site. And so sometimes those younger kids aren't the most cooperative in that. They're also, how well they respond to pain and discomfort can be challenging. And in addition, how well are they willing to work from a therapy standpoint afterwards, right? Trying to tell a three year old that they need to do several hours of therapy a day, six days a week, not so fun, right? For most of us that have kids, and so those are all the things that kind of go into our selection of patients. And you know, we might not do as many surgeries as some other institutions across the country, because we are a little bit more selective with our patient population to make sure that the goals that the families are seeking are the goals that we can realistically achieve. Sometimes, on the opposite end, if you wait too long for the patient to become older, then sometimes they don't get as good of results as the family and or the patient want. In terms of the brain and the patterns and connections that reinforce kind of a gait pattern, the longer that you do that particular pattern, the harder it is to break. And a lot of these kids, when they come in, they're in orthotics. They've got toe walking, they are walking with walkers, and they've got a lot of momentum that they've got their upper body, that you know, essentially just kind of guides them along, and they're almost kind of running along and just pulling their walk or gait trainer behind them. But it takes a lot to kind of break all of those patterns, and if you try and do it on a 12 or 14 year old walking kid, those patterns and connections that have been reinforced for so many years are so much more challenging to go back and reset. It's just harder in that process to be able to do that. 00:22:28 Host: Is that what they mean when they talk about muscle memory or ...? 00:22:31 Stephanie Acord: Exactly, exactly, 00:22:33 Host: And is there a severity level as well that is used to consider SDR? 00:22:37 Stephanie Acord: So most of the time, kiddos that are considered for SDR, from an ambulatory standpoint, a lot of them have some degree of an assistive device, at least out in the community. Now, some of them might be walking within household ambulation, maybe holding on to furniture, but usually they're going to have some type of assistive device within the community at the least. Some of them are walker all the time, and for community based distances, they're more in their wheelchair. And then in the limited goal patient population, those are going to be the kiddos that are wheelchair dependent. But the goals, again, are going to be more limited for ease of comfort, ease of care, decrease pain and increase just kind of like tolerance of daily cares. 00:23:24 Host: So what is the difference between a single level versus multi level approach for an SDR? And how do you determine which procedure is needed for each patient? 00:23:33 Stephanie Acord: So here at Cook Children's, we do technically have the capabilities to do either the single level or the multi level approach for an SDR. However, we almost exclusively do multi level approach. And the reason why is that we have realized over the years that no two kids anatomy looks the same, right? You get in there, you think that this is what it looks like, and then it turns out that you might have a big blood vessel in one part of the anatomy that you say it's not worth the risk of potentially injuring a blood vessel. Or a lot of times we get in there and the dorsal and ventral roots merge together, and especially as you get lower within the spinal cord, and you start getting towards bowel and bladder as well, then you worry, "Can you potentially do more harm than good?" And so for those who've never met, Dr. Roberts, he's very conservative. And so our thought process always is, if there's a question, we leave it alone. And we usually are very upfront with the families afterwards and letting them know, "Hey, you know, we were not quite sure. We teased out things as much as we possibly could. However, we didn't feel comfortable cutting something that could potentially either be motor that would lead to permanent motor and movement loss, versus something of which, if we cut any of the nerve that went down to the bowel and bladder." The last thing we want is for kiddos to have constant enuresis and having accidents constantly when they didn't before. So from a multi level versus single level, yes, in theory, the scar size is smaller for the single level versus a multi level. There's some data out there that might suggest that, from a scoliosis standpoint, that maybe scoliosis could be a little bit worse in the multi level approach versus single level, but we haven't had that experience, and we just feel like from a visualization standpoint, and to really make sure that we're getting exactly what we want and exactly the levels that we want, we have stayed with the multi level approach. 00:25:36 Host: Based on the severity, what are the expected outcomes? How much do they vary? Full mobility, limited mobility? And how are those expected outcomes determined based on the original diagnosis? 00:25:48 Stephanie Acord: So most of these kiddos are going to be kiddos that have cerebral palsy. So by definition, cerebral palsy is delays in motor milestones, tone and or posture. So, if we just talk about the cerebral palsy population, that is not a progressive process, meaning that if they had a perinatal insult, or they have a genetic condition, of which has led to the spasticity in their arms and or legs, then it doesn't get worse with time, meaning that decreased oxygen or blood flow that they got to the brain, or the stroke that they had in utero, is not continuing to get worse. However, the caveat being patients grow, and when patients grow, the muscles get stretched, and when those muscles are already tight, when they go through growth spurts, the bone grows, and then that makes that muscle tighter. And so that's one of the things that we have to just kind of keep in mind, is that they're not necessarily, quote, unquote, getting worse in terms of the disease process isn't getting worse. However, they're growing. They're doing normal things that we want them to do. And so from a diagnosis standpoint, it goes back to what are the goals? Where did they start off at the beginning? And where are we wanting them to get to? Doing more invasive surgical intervention like these are to try and get these kids, especially the kids that are ambulatory, continuing to walk into adulthood. Now, depending on how severe they were when they started, is the reality of how good can we get them, right? 00:27:21 Stephanie Acord: We have to be realistic, and say, a kiddo that used a walker for even short distances in the community, or especially kids that use the walker for short distances and a wheelchair for community, to sit there and have a goal that they're not going to need any assistive device, if they exceed our expectations, we will celebrate those victories with them and the families. But I think we need to also not set the patient and the families up for unrealistic expectations and almost failures, right? Because then they have this thought that they're going through this big surgery and it's going to be this miraculous thing. And yes, we do have patients that used to use walkers, and they are either using forearm crutches or they're walking short distances, whether it's in the classroom without needing a device, or maybe the degree of bracing is a little bit less. But these kids want to fit in, and they want to be like all the other kids. And so trying to figure out what is a happy medium for some of these kids, and how do we make them the best versions of themselves, and how do we make them as independent as they possibly can be for as long as they can. 00:28:33 Host: That's just amazing. So how long is a typical hospital stay? 00:28:37 Stephanie Acord: Here at Cook Children's, we do more of an inpatient stay after the surgery, and so usually we anticipate four to six weeks from the surgery date until time to go home. The first few days are spent in the ICU, recovering, making sure pain is under good control, before coming up to the rehab unit. And then usually on post op day number two or day number three is when they usually come up to the rehab unit, and then they start their therapies. And we have a well seasoned team that's responsible for taking care of these kiddos when they're on the unit, and they will get intensive therapy six days a week, and family is able to stay overnight with their kiddos. Younger children are not allowed to stay. But different institutions have different therapy models. There are some institutions out there that do more of an outpatient only basis, and sometimes they'll do it five to six days a week for six months. We just have more challenges with insurance coverage, and really kind of want to hit things hard at the very beginning, and also have families learn a little bit of different way to be able to care for their child initially after the surgery, because it is different when they go home compared to what they were experiencing before they came in for the surgery. And we feel like kids have done really well with that. They're ready to go home after the four to six weeks, as are their parents, but they usually do really well. 00:29:58 Host: What are some of the differences in that parents would experience from like before they came in to when they go home? 00:30:04 Stephanie Acord: So, one of the big things would be the surgical scar. So they can't do as much twisting and turning. They also have to wear what they call knee immobilizers at night for the first year after surgery, in which they're things that kind of start at mid-thigh region all the way down to kind of mid-calf region, and it prevents them from being able to bend their knees. So, it's a little bit challenging for kiddos to be able to tolerate that, and sometimes they can kind of wiggle and squirm a little bit out of them. But we really kind of try and push that to try and allow for the decrease in the risk of contracture development, and to really allow for the best possible outcome for these patients after they go home. 00:30:46 Host: And what follow up care is required, like, how critical is post surgical rehabilitation to the SDR outcome? 00:30:53 Stephanie Acord: It's very critically important. I think that's what sometimes families have a misconception about, that once they're done with the inpatient therapy, that once they go home, then they should be good to go, but this is really more of a marathon, not a sprint. And you know, these kids, years down the road, are still making some progress after this surgery. And so it's really important, and that's what I always reiterate to the families when we're having these discussions, it's a huge surgery that we're asking the child and the family to undergo, but the goals and the expectations and the outcomes are really dependent on how much the kid participates after the surgery with rehab. That's why, I think, from an age perspective, that sometimes younger kids that may be a good candidate in terms of, from the surgery perspective, but might not necessarily be a good candidate from a social maturity standpoint, and kind of understanding the importance of rehabilitation and participation. That's why I feel like sometimes we kind of hold off to the little bit older and really are willing and able to kind of participate like we want them to, to be able to get the best outcomes that they can. But it's also important for the families to understand that they're the ones that are having to take their children to therapy, making sure that the therapy center that they're taking their child to either has taken care of other patients that have had an SDR, or they're willing to collaborate with our therapist afterwards to be able to make sure that we're doing all of the correct things, and making sure that we're kind of pushing forward in the best possible way for the patients to get that outcome that they're looking for. 00:32:32 Host: You mentioned years down the road to recovery. So what kind of timeline are we looking at? 00: 32:38 Stephanie Acord: So some of it will depend on how old the kiddo is when they first undergo the surgery. From a timing perspective, younger kids, usually, a lot of times, will have a better recovery, more quickly relearn kind of an appropriate walking pattern. But some of it also depends on their severity of when they started, if they were a kiddo that used an assistive device to walk in communities, but maybe walking at home, they could either walk independently short distances or just maybe cruise along furniture or along walls. Their recovery process is usually going to be shorter than those kiddos that need an assistive device, such as a walker or gait trainer, for all types of ambulation and for longer distances, may need more of a wheelchair to be able to go longer distances. So it's setting up those expectations, the reality of, if they do more than we are anticipating and expecting, we're so thrilled to be able to celebrate those joys with them, but also being honest about what is the likelihood of what we're going to attain with the surgery. And then also afterwards, in addition to getting therapies still ongoing once they go home, then they'll still need follow up with the neurosurgery team. Obviously still follow with neurology, orthopedics is still going to be an important player. And then, also, we usually will still do follow up gait analyses in the motion lab. We usually do that once a year after surgery, just to kind of see the progress that they're making, see if their gait pattern is changing. Are there certain muscles that are turning on or turning off more appropriately than they used to be prior to other things that we're worried about that the orthopedic surgeons need to take a look at a little bit more closely or a little bit sooner than they would otherwise. 00:34:23 Host: So what involvement or participation does the family have in terms of preparing the child for surgery and in the recovery and rehabilitation? 00:34:33 Stephanie Acord: It's a long process. I would say, realistically, from beginning until surgery is complete and they're out of the rehab unit, is about a year. And, you know, kind of going through the workup, if they were, for instance, getting Botox injections, allowing that medication to wear off, to be able to get a true baseline with no medications or treatments on board. And then after that, then you have to go through the workup, which again, includes starting with motion lab, followed by the intrathecal baclofen bolus trial, getting to meet our neurosurgery team, getting images to make sure that we know the exact anatomy prior to getting in there for the surgery. And then, most of the time, we'll take a tour of the rehab unit, just to kind of see where they're going to be for four to six weeks. You know, when you first talk … start talking … with a family about it, it's not like, "Hey, we want to move forward," unless they've been doing a bunch of research and they have sought us out, which we do see that most of the time. It's just kind of initially planting a seed and saying, "You know what, this might be a good option for your child in the future. Just start looking into it. Start doing some research," so it's not a foreign concept when we really start talking about it in depth a little bit. And then, Child Life is an integral part of our clinic, especially our complex care clinic, in terms of our movement disorders and cerebral palsy patients. And they're fantastic in terms of being able to show them pictures or stories, to be able to get them prepared for what they may expect, because it is a scary time for them, and so being able to at least know some of the unknown helps in process and potentially decreases some of that anxiety. 00:36:07 Host: Where do you see SDR in the future? What advancements can we look forward to, and how will they continue to improve the lives of children and even adults? 00:36:14 Stephanie Acord: I think the way that surgery is moving, there's definitely a push towards more surgical interventions that are less invasive, which, you know, have their pros and cons. Again, there is the ability to have a smaller incision but less visualization, from an SDR standpoint. Medicine and treatments are always constantly evolving and changing, and so there might be different kinds of approaches to the surgery. But, I think that when things have been tried and true in terms of the improvements that we're seeing with these interventions, sometimes the thing, "If it ain't broke, don't fix it," type of thing kind of holds true from a medicine and from a treatment standpoint, that we're selecting the right patients. This isn't the surgery for everybody, but we're selecting the right patients to be able to have a meaningful improvement in their independence and life moving forward. 00:37:08 Host: Fantastic. Dr. accord, thank you so much for joining us today and sharing this fantastic information. I really appreciate you taking time out of your really, really busy schedule. 00:37:18 Stephanie Acord Thank you so much. I appreciate being here. [music under] 00:37:21 Host: And for our listeners, you will find more information about SDR, movement disorders and neurology on our website, at Cook childrens.org. You can also access clinical pathways on the health professionals section of the website. And while you're there, sign up for our Doc Talk newsletter. Want more Doc Talk? Get our latest episodes delivered directly to your inbox when you subscribe to our Cook Children's Doc Talk podcast from your favorite podcast provider. And thank you for listening.