Rachel:
Hi, everybody. I apologize. The internet is definitely being not as reliable, so I am going to join Dr. Selber back in again, because we really want to get this conversation started, and I had plenty of questions to ask about this, so I apologize. We're back. I'm so sorry.
Dr. Paulo Selber:
Where did we stop? I don't know. I noticed that you were...
Rachel:
So I think... Let's just start... I'm just going to do a little bit of an intro again, because for those of you who are joining us not live, we have Dr. Paulo Selber from the Weinberg Cerebral Palsy Family Center here with us from Columbia University, who is an orthopedic surgeon and absolutely an expert in gait analysis. So we're going to drive straight in and talk about how gait analysis is used and why it's such an important tool for orthopedic surgeons to use when they're thinking about surgery.
Dr. Paulo Selber:
Well, I think gait analysis is crucial when you're treating people to make them walk better, the same way when you have anemia and you have to have a blood test to see what's wrong with your blood. When you have a problem with gait, the best way to exam gait is through three-dimensional gait analysis.
Dr. Paulo Selber:
And what it does, through a series of equipment... These are very specialized cameras and force platforms on the floor, and equipment that can measure how much your muscles are active or not active during gait. You can measure the amount of oxygen that you're using through gait. You can measure the way you put pressure on your feet. So when we put all this information together, it's really when we understand what's wrong, or not wrong, but what are the mechanisms that the patients are using to cope with the issues that they cannot do properly in gait?
Dr. Paulo Selber:
So that's when we can really understand what's happening in gait. And even better than that, we can start designing treatments which are not necessarily always surgeries, but treatments. And very often, with gait analysis, we decide that there is no treatment that should be done at this stage or that stage. So gait analysis is the picture of gait. When you have a hip problem, you take an X-ray. When you a problem with the way you walk, you get a gait analysis. So it's not a treatment. It's a tool that enables us to understand how we walk.
Rachel:
And it sort of, in a way I suppose, almost shows what's going on inside, what's going on with your muscles, which muscles are working, which ones aren't necessarily working, what angles is happening at your hips and your knees and your ankles when you are walking. So it's almost getting all that information so you can put it together to say, "All right. This intervention would help have this outcome with your gait," particularly whatever your goals might be.
Rachel:
But I just wanted to also touch on something. When we're talking about gait analysis, is gait analysis as simple, like if I'm going to my doctor, can I just get them to do gait analysis? Is it just a video? What does gait analysis look like from the technical aspect?
Dr. Paulo Selber:
Yes. There are different levels of gait analyses as much as there are different blood tests that you can request.
Rachel:
Mm-hmm (affirmative).
Dr. Paulo Selber:
Very often, what people use is the dimensional gait analysis, where they have one camera seeing the patient from one side, and the other camera seeing the patient from the front or the back. What we tend to use is what we call three-dimensional gait analysis. So in this model, what we have is, we have special cameras all around the patient, and these cameras can see the patients in three-dimensional. So anytime an arm or a hand for instance is moved in space, the cameras can trace exactly where those parts of the patient's body are and where they are.
Dr. Paulo Selber:
But not only that. In the three-dimensional gait analysis, we have what we call force plates on the ground, and these plates can measure how much force we're applying to the ground and how is the ground reacting to that force. So when we add information from the moving parts with information from this very special scale, let's put it this way, we can calculate the forces that go across the joints.
Dr. Paulo Selber:
And then we... On top of that, we put sensors on the skin that can measure muscle activity. So now we know how the body part is moving, which muscles are active, which ones are not, and what are the stresses or the forces that are going through the joints. So it's pretty incredible, and it gives us a lot of information. And of course, in cerebral palsy, their main issues with gait relates to balance, control, muscle spasticity or, as I call, muscle stubbornness. My children who have CP, I'd never call their limbs spastic. I call them stubborn, and they love that because it gives them a sense of... That they are rebel.
Dr. Paulo Selber:
So we have the muscles that are stubborn. We have sometimes, or very often, the bones that are twisted in one way or the other. And gait analysis helps us understand all of that together. Before gait analysis, people basically had to look at the patients and said, "Okay. That's what I think is happening." Then they did surgery, and they could never measure whether the surgery had improved or not. All they could see was that the patients were walking differently, but not necessarily better.
Rachel:
Sure.
Dr. Paulo Selber:
With three-dimensional gait analysis, we can measure how they are to start with. We can design a plan to treat and to improve them. And just as important, we see them later, at one year, two years, five years, 10 years. In Melbourne, we published a lot of data. Kerr Graham and Pam Thomason have been publishing a lot in that regard. So what are these kids 10 years down the track, 15 years down the track? Are we doing the right thing? And with gait analysis, we can measure all of those things very, very precisely.
Rachel:
So we've got a question that's come in already in relation to, when can gait analysis start? So how young can gait analysis... How young can a child be to start gait analysis? And should everybody have it, or is it something that... Yeah.
Dr. Paulo Selber:
No. No. First of all, I'll emphasize again that gait analysis is not treatment. Gait analysis is an exam. Okay? A tool, a scan of the way you walk. When should we do it? Well, for the first time, when we have doubts about what the child is doing, which is the best treatment possible? If this child is on botulinum toxin regime, is it time to stop? Is it not? Is it time to move on? Is this a good candidate, for instance, for selective dorsal rhizotomy, or is this patient a good candidate for orthopedics or both? Which one comes first?
Dr. Paulo Selber:
So normally, we need to have a child that cooperates because the exam goes on for two or three hours at times. It's very boring for them. It's very tiring at times. And of course, the only person that I know that has collected, has been able to collect data at young ages was Dr. David Sutherland, but he was an angel. He could do wonderful things.
Dr. Paulo Selber:
So nowadays, I think we tend to start thinking about gait analysis if we are in doubt about what comes next. At around the age of six or seven, I'd say... Well, some kids are able to do it at the age of five. I suspect that six years of age is a good timing. But remember, we need to have a question. Do we have... We need to... What we do is we ask gait analysis, should I do this? Is this bone too twisted? Is this muscle too tight? Can we just get by with what we're doing right now?
Dr. Paulo Selber:
So very often, the doctor, the orthopedic surgeon or the rehab physician or the physical therapist, they can do that. They don't need gait analysis. It's when we start thinking about more complex interventions like selective dorsal rhizotomy and multilevel surgeries that we should use gait analysis.
Rachel:
And I think that's a really good point to make out. So gait analysis isn't really a surveillance tool, for example. It's not something that a child, once they start walking at two, you would go get gait analysis every year.
Dr. Paulo Selber:
No. No.
Rachel:
It is really one of those tools to look at when you are looking at a potentially more invasive type intervention.
Dr. Paulo Selber:
Yes. Well, having said that, in Australia, because they have a beautiful medical system and they have more accessibility to gait analysis, often in Melbourne and in Sydney, if we had a child at the age of seven or eight, for instance, and we weren't sure whether that child was ready for this or that intervention, we would send them to the gait lab. And the gait lab is like getting a lot of opinions together, because once we collect the data, then we sit down together and we discuss the data together, usually the orthopedic surgeons, the rehab physicians, the physical therapists who have been dealing with gait analysis and CP for many, many years.
Dr. Paulo Selber:
And then at times, we'd say, "Look, this child is too young. Those muscles are not all that tight. Those bones are not all that twist. Let's see this kid again perhaps in two or three years." So we did a little bit of surveillance, but it's not that you just go and get gait analysis every year-
Rachel:
But you still have the why, for example.
Dr. Paulo Selber:
... to see what's going on. Pardon me?
Rachel:
Yes. You still have the why though. You still have that question that you're taking to, I suppose, gait analysis to go, "All right. What should we be doing here if we're not quite sure these are the answers that we are looking for?" The other sort of question that I had for you: Obviously, 3D gait analysis isn't available all over the country. It is something that is starting to become a little bit more available here in the US. But is 2D gait analysis just as good, or how did... As a parent, for example, how are they going to make those decisions? If you're going into any orthopedic surgery, is your recommendation really that gait analysis is such an important tool that should be done?
Dr. Paulo Selber:
I think so. And that's a very, very good but very tricky question, because one of the reasons I believe gait analysis is not so popular in the United States... And Dr. Jim Gage told me one day, "Even though most of the technology was developed in this country, it's going to be saved by the international community." What happened many years ago is that a paper was published, a scientific paper was published, and this person got a few gait analyses and sent it to different centers where they did gait analysis.
Dr. Paulo Selber:
And sure enough, in each center, everybody came up with a different solution for the problem. And this paper then bashed gait analysis. It said, "See, this is worth nothing." But the same could happen if you sent an X-ray of a child with a hip problem, like DDH or Perthes' disease, which is a very controversial disease. If you send the same X-ray to 10 centers in the United States, they'll come up with probably seven different solutions.
Dr. Paulo Selber:
The problem is not the X-ray. The X-ray is only showing the pathology. It's who interprets the X-ray, and what do they know about that pathology that dictates the treatment. And gait analysis is the same. What this paper proved 20 years ago was that different people saw the data differently and had different solutions for the data, but the data was only one. And within the last 25 years, the reliability of the data collection has improved tremendously, because that was one of the criticisms in the years past.
Rachel:
I think that's the point...
Dr. Paulo Selber:
I think one of our battles, not only mine, but there's a lot of people in this country who are big in gait analysis. Our battle is to show these health insurance companies that there's now hundreds and hundreds of papers showing that if you have gait analysis, you do better than if you don't, not because of gait analysis, but because of the right conclusions that are drawn from gait analysis.
Dr. Paulo Selber:
Gait analysis doesn't change your future. What changes your future, in my opinion, is having someone who understands it. And I'm not trying to brag by myself here, but having someone who understands gait and pathological gait and coping mechanisms, and then base treatment on that amount of understanding. And without gait analysis, you can't do it.
Dr. Paulo Selber:
Unfortunately, in this country and in many countries around the world, most kids with cerebral palsy are operated on based on the eye impression and, "Yeah. I think you're better after the surgery." But what we do know is that we sometimes get to these children who have been operated on without knowledge of pathological gait and normal gait and gait analysis, and they're always worse off.
Dr. Paulo Selber:
And it's even... The saddest part is that this is not going away unfortunately. There's still many children being operated. Nowadays, we have the percutaneous surgery where people put knives through the skin and cut the muscles with no control. Even though they say they have any control, they don't, because we see them five, 10 years down the track when they come to us to try and rescue them, and we can't because they have no muscles left.
Rachel:
And I think that's... I think that though...
Dr. Paulo Selber:
I'm hoping...
Rachel:
Yeah. I was just going to ask you...
Dr. Paulo Selber:
I'm hoping that over time, we're going to change this situation.
Rachel:
Because I think that's the whole point, right? Is that gait analysis can give the surgeon, or whoever is doing that intervention, it's giving you more knowledge. So it allows you to choose potentially the best intervention that will help that individual and that person. And you touched on it a little bit, and I think this is a really sort of important piece to give, is that gait analysis now also has longitudinal data. So we know, particularly with certain interventions, what are the long-term outcomes.
Rachel:
And I think that's really important as well, because obviously, there are some interventions that almost feel like the quick fix, and they almost feel like, "Okay. That's going to lead to an improvement tomorrow." But what we know though is, for some of these, actually 10, even five, 10, 15 years down the track, then you're actually worse off. And so, it's really important to then have gait analysis and use these tools so that what you can find out is go, "Okay, this is what it's looking like. This is almost what's happening inside your body," because that's what... Gait analysis gives you a window almost to what's happening inside.
Rachel:
And then you can go, "Okay. These are the best interventions or not," or "Don't do anything right now," because what we want to do for a goal in 15 to 20 years' time is have independence, is to be able to do these different things long term. So I think for parents who are tossing up between who to listen to, because sometimes there is contradictory information, having that framework put in place to go, "Okay. Would you go for another surgery without doing your blood tests first?" No, you wouldn't. So same sort of principles apply here, is if you're going to do these surgeries, making sure that you have all the information that you can to make the right decision.
Dr. Paulo Selber:
Yes. And that's exactly it. I think, if it's worth nothing, gait analysis at least gives you a picture of how you are today. And in 10 years, when you've had your whatever treatment you chose, if you repeat gait analysis, gait analysis is the only way to measure what's happened in that time.
Rachel:
Sure.
Dr. Paulo Selber:
Did you get better? Did you get worse? And the problem, Rachel, is that unfortunately, we have longitudinal data now, we and many people, but we have never been able to compare our data to the other side because the other side never sends their people to compare. So for 25 years now that I've been in this field, I've been inviting a lot of people around the world saying, "Okay. You operate this way. That's fair enough. But why don't you send your patients to us, we analyze it, we analyze the gait, we keep the data there quiet, and then in five years, we're going to analyze your results and our results? And if you're doing the right thing and we are doing the wrong thing, we're going to publish that and show."
Dr. Paulo Selber:
But of course, nobody has ever agreed to do that because... Yeah. There's a lot to be said here, and this is a long story. There's a lot of stuff that goes on in this area, unfortunately and sadly.
Rachel:
So I think though it comes to that other point though, for parents and even young adults who are trying to make that decision to go, "Okay. I know. There's determined... I need an intervention," or "I think I do," trying to judge what intervention to have. As we say, gait analysis is a wonderful tool to put in your back pocket to go, "Okay. This is what you're looking like. This is what the inside looks like." But then when you're going to make those intervention decisions, can it base, for example... Could you do an intervention now and get that quick fix, and then in 10 years' time, well, we just fix it again? Is that an option, or do you see-
Dr. Paulo Selber:
No. Unfortunately no.
Rachel:
... what happens now and you can't fix it? It's not reversible.
Dr. Paulo Selber:
Yeah. Unfortunately, and I will repeat the word sadly, the current trend is not very good. People have reinvented the wheel. In the '50s and '60s, people tried to get these kids walking better by cutting everything, cutting all the muscles through the skin. And then they abandoned these techniques because they knew that it was a catastrophe. And now, it's become fashion again. People, they have beautiful websites, and what they show is mini-incisions. The child stays in the hospital overnight or goes home the same day. They recover in no time.
Dr. Paulo Selber:
And what the parents see is a good result because the child goes into these techniques, into these surgeries, with the knees bent or walking on their toes, with the hips bent a little bit. And then next day, they're all straight because the muscles were all stretched, but they were all stretched a lot to get to that point. And the children get... They're better for a year, sometimes two years. But we see these children in the long term, because then they come to us sometimes, unfortunately, because we can't rescue them.
Dr. Paulo Selber:
And what's happened is, as you grow... And you don't have those muscles because those muscles have been over-lengthened and you're heavier and you're taller, and you need your muscles to walk. You slow down. You will start having deformities, for instance, knees that go backwards, you have the pelvis tilted forwards, a huge lumbar lordosis, that spine tilted forward because the hamstrings are no longer there. And unfortunately, there's nothing you can do about it because the muscles are no longer there, and we can't rescue them.
Rachel:
So if that's the really important...
Dr. Paulo Selber:
But it's also a very difficult... It's also a very difficult situation because the parents who love, who care, and they all do, and they all want to do the best for their kids, and I know that because I've seen these parents.
Rachel:
Mm-hmm (affirmative).
Dr. Paulo Selber:
I call them all angels. In fact, when I have trainees next to me, I say, "If you don't believe in angels, just stay in a day in a CP clinic with me and you'll find a lot," because these kids are all super cool, and these parents are super cool. They want to do the best. And because the kids got better initially, what they see five, 10 years down the track, we know that it's related to the surgery because that's what we've been studying all along.
Rachel:
Yeah.
Dr. Paulo Selber:
But the parents cannot correlate that. And they will say, "Oh, this is natural history." And those doctors would say, "This is natural history." Okay? This is how the kid is going to be anyway. But what we see is not... It's far from that. The results that we have produced... And I'm not talking about me. I'm talking about a whole bunch of people in the world who follow these pathways. They produce long-term results that are sustained.
Rachel:
And I think that's so important.
Dr. Paulo Selber:
And what we've seen, in fact, is a lot of children that... It is so important because these people come to us without their parents later, and then they say, "Okay. I used to walk independently. Now I had... Then I had to use crutches, and now my back is so tilted forwards. My pelvis is so tilted forwards. And I have so much back pain that I can't walk anymore. What can you do to help me?" And you can't do anything because... You can't do anything. There's no more muscles to help them anymore, and it's pretty sad.
Rachel:
So I think that's why it's so important to find-
Dr. Paulo Selber:
And I've...
Rachel:
... specialists, right? So it's really important. If you're a parent out there to find specialists, not only in CP, but thinking about any sort of orthopedic surgery, because what you're saying is, orthopedic surgeries aren't reversible. It's not like if you cut a muscle, that that muscle is going to be able to be grown back and attached again in a different way, and all those different things. These things are permanent.
Rachel:
And so, anything that you do, you need to think about the trajectory that it's going to have, and you need to find those pieces because there is... Obviously, you are an orthopedic surgeon, so you do do surgery. So there are definitely interventions that have been shown to work and work on those trajectories. But it's really important.
Rachel:
I know that you've said something to me that really has always resonated with me, and that is the fact that as doctors, you share information and you all want to collaborate to do the best interventions. You don't hold on to it. So if there's only one person in the world doing something and the other surgeons, as a collective, haven't taken that on board, there's probably a reason why.
Dr. Paulo Selber:
Oh, yeah. And there is a reason why every time, because... And that's exactly it. Unlike any other profession, whenever we find something that works and we can prove that it works in a scientific way, the first thing a good doctor needs to do and wants to do is to share it, and other doctors will see it and think about it and perhaps repeat the experiment and say, "Yeah, this thing works."
Dr. Paulo Selber:
Whenever somebody sees in medicine that there's this only one person doing a procedure or two, you have to be scared, because think about it. If in medicine, we share, and I live at... I do medicine for two things, and I treat cerebral palsy for two reasons. Firstly, because it's my passion and I love it to bits. And if I had to be born again 10 times, I would do the same thing. But secondly, because I need to pay my bills. I have two daughters. Okay?
Dr. Paulo Selber:
So if someone is doing something better than me and my patients are all going to that person, what do I do? I go there and learn from this person, because I'm going to keep the money the same way as any industry. Okay? So why is it that certain treatments only happen, only take place in one spot or in another spot? Well, because we know, people who understand this stuff and they want to sleep well every night and make sure that they didn't harm because that's the first thing that we swear by when we become doctors, is do no harm.
Rachel:
Mm-hmm (affirmative).
Dr. Paulo Selber:
And we know that that's not good enough. And so, that's what I try to teach my patients and families, say, "Look, please go search on the internet. Now you can find cures for everything." Not really. But think about this, think that when there's only one place doing one treatment, you need to be really, really careful,-
Rachel:
And I think that's unfortunate.
Dr. Paulo Selber:
... because there's something... Like we say in Australia, I don't know if I can say it live, but in Australia, we would say, "There's something dodgy there," or say...
Rachel:
Yeah. No, you can say... And I think that's why... I think anyone watching... Obviously, any resources that you see is part of the Cerebral Palsy Foundation. Anything that we put out there has been vetted by our Scientific Advisory Council, and we are so lucky to have 20 of the best scientists and clinicians from around the world who, as you do, study this every single day. And they know all the latest things that are coming out, because obviously, there's always interventions that are happening, and things are evolving, and it's really important that obviously, things continue to evolve.
Rachel:
But you don't want to be, I suppose, the first person to do it. Now we've got a couple of questions coming in though, and I want to make sure that they get answered. So someone said, "I had a tendon operation for my left leg in 1983. Can my gait change on that?" So I think they're probably asking of these...
Dr. Paulo Selber:
Can my what?
Rachel:
So they had a tendon operation in 1983, so I'm guessing they are an adult now. Can they see changes in gait happening now that were caused by that potential operation in 1983, or... I think it adds to the question, as an adult, you may have already had some of these surgeries. We've learned a lot over the last 20 years, but how can they sort of come back in? Because I know you treat adults as well, which is super amazing.
Rachel:
It's like, you see a child when they're born and you will see them until the last day. And so, I think it's important that we touch base on what adults can do because we know there's limited information about adults, but it doesn't mean that there's not things that can help.
Dr. Paulo Selber:
Yes. I think there are certain patterns that we understand nowadays that are probably due to certain surgeries. But this person, in 1983... And we need to be very careful with these things. In 1983, there was no gait analysis. Gait analysis was just starting. People were starting to understand things. So whatever was done there, I'm sure, was done in the best possible intention.
Dr. Paulo Selber:
The problem is that the treatment of CP, to start with, came a little bit from polio, poliomyelitis. In polio, you get contracted muscles because the spinal cord is sick, and then patients used to get lots of deformities. And they couldn't do anything other than release the muscles or release the tendons or lengthening the tendons or, very often, transfer the tendons. When polio was taken care of by the vaccines, then came the big pool of cerebral palsy patients, and people started thinking about cerebral palsy.
Dr. Paulo Selber:
And there were some fantastic doctors there that they... It's amazing how much they knew already. But they borrowed a lot of the procedures from polio treatments into cerebral palsy, and cerebral palsy is a different disease altogether. And so, over the years, what we've learned is that when you lengthen muscles too much... Well, you just think with me. It's the muscles that move our skeleton. It's not... The spirit helps, but it's actually the muscles which move us.
Dr. Paulo Selber:
If you go there and you cut the muscles and you cut the muscles and you cut the muscles, you may grow up very, very straight but with no power because there's no muscles left. So that's why botulinum toxin came about, selective dorsal rhizotomy came about, the more very conservative ways of lengthening muscles that we now know. And these are not new techniques, but old techniques that had actually been abandoned many years ago, and then gait analysis showed, "No, these are actually the best techniques because they're mild on the muscle. Therefore, the muscle doesn't lose a lot of power."
Dr. Paulo Selber:
And the other thing that gait analysis and Dr. Jim Gage discovered is that it's not only about the muscles. How many people with cerebral palsy, you see them walking with the knees pointing in and the feet pointing out?
Rachel:
Mm-hmm (affirmative).
Dr. Paulo Selber:
So if you give those bones to any normal or typical muscle, the muscle will struggle. Now, if you have a muscle that is stubborn to start with, and you don't have a very good selective motor control, and you're weak, and then your bones are all twisted one way or the other, it's not operating on the muscles that it's going to solve the problem. And that's what gait analysis taught us over the years. And Dr. Jim Gage was, probably the most important person in this field, explaining to the rest of the world, "Look, don't just lengthen muscles. We have to fix the bones as well. We have to fix the fate." But I learned it, and it was not too difficult to learn.
Dr. Paulo Selber:
Unfortunately... I think what keeps feeding this cycle is that the beautiful families who care and love their children, they get into a stage in their lives... And I wrote a little article about this, which is not scientific yet, but we're going to prove it right or wrong.
Rachel:
Mm-hmm (affirmative).
Dr. Paulo Selber:
I think they get to a phase that I call the phase three. Phase three is where families want to cure their kids. And it's absolutely normal and beautiful to be in phase three, because I have two girls. I know that if... When they... They were sick in the past. I wanted to cure them. But there are people out there who know about phase three and they exploit phase three. They exploit this state of desperation. And that's when these kids are put through all these miraculous treatments out there, and that's when they are harmed-
Rachel:
Yeah. Well, I think it goes back to-
Dr. Paulo Selber:
... many times very often.
Rachel:
... do no harm, right? And I think do no harm isn't just doing no harm in the moment. It's also doing no harm in what's going to happen long term. And we've touched on it quickly, because we've also got somebody asking the question, about... Obviously, when we're talking about treatments, there's lots of different treatment options. And you've mentioned SDR, you've mentioned multilevel surgery, you've mentioned some of those different things. Someone's asked, can you just talk a little bit more about SDR, and do you use gait analysis before and after SDRs as well?
Dr. Paulo Selber:
Definitely. How could you tell anyone is better after SDR if you don't have a gait analysis? If you're anemic and-
Rachel:
And actually, before we go in with that, can you describe what...
Dr. Paulo Selber:
... somebody gives you blood, how much...
Rachel:
Sorry. Can you just describe what selective dorsal rhizotomy is for those that don't know? Because I'm just sort of thinking, we're talking in acronyms and...
Dr. Paulo Selber:
Yeah. So as I was saying, how can you tell that you're better after a blood transfusion if you don't have a blood test? What if the blood transfusion wasn't enough, or made you sick because there's incompatibility or something else? So gait analysis just tells you whether you're better or worse, but it also tells you or helps people tell whether you're a good candidate for rhizotomy.
Dr. Paulo Selber:
Rhizotomy is when the neurosurgeons go in the spinal cord and they check every one of the little nerve rootlets that are going into the muscles, and they see the ones that are transmitting, from the brain, abnormal messages to the muscles. And then what they do is they basically divide these rootlets in mini, mini, mini, mini-rootlets and test them all, and then they trim, they clip the ones that are transmitting abnormal messages to the muscles to try and decrease spasticity.
Dr. Paulo Selber:
And pay attention when I'm saying decreased spasticity, because I think if you decrease... I've seen children which had an overdose of rhizotomy, and they were so weak because many children rely on a little bit of spasticity to stand up and walk.
Rachel:
Yeah.
Dr. Paulo Selber:
So there's a dose for every treatment. So that's what rhizotomy does. So who is good for rhizotomy? Well, obviously, those people who have a lot of spasticity, because that's what rhizotomy treats, and those people who are not too weak under the spasticity, those people that can be submitted to a long process of rehabilitation. So there's a lot of indications for rhizotomy.
Rachel:
Yeah.
Dr. Paulo Selber:
And gait analysis not only helps us identify the good cases for rhizotomy, the ideal cases and not so ideal but still good, but it also helps us... When you do it post-rhizotomy, it helps us confirm that we've done the right thing and also helps us to see if there's anything else that needs to be taken care of through orthopedic interventions, for instance.
Rachel:
And I was going to say, and helps devise that intervention plan. My background is as a physical therapist, and I did lots of rehab for children post-selective dorsal rhizotomy, and I know that we use gait analysis to help us work out what were our goals, what were we working on. And I think that comes down to all of these conversations, is that when you are looking at any type of intervention, particularly interventions that are invasive, you want to have as much information as possible. So you want to be able to, as you mentioned, have that window in before to work out exactly how you are right now.
Rachel:
You also potentially want to make sure that the interventions are doing what they say they do. So you spoke about different levels, and I think this is an interesting thing just to touch on...
Dr. Paulo Selber:
And in the long term.
Rachel:
Yeah. And you spoke on sort of different levels just with SDRs just then, is that not all SDRs are the same because we are all different, and it's the same... Not all orthopedic surgery is the same, but what you don't want to do is go in blindly.
Dr. Paulo Selber:
Yeah.
Rachel:
You don't want to go do something and not see what you're doing or not understand, more importantly, why you're doing something.
Dr. Paulo Selber:
And the other thing that it's important and very deliberately misleading, don't think that because you're getting a small incision in your skin, that's a very benign operation, and that's a very minimally invasive operation, because if the knife goes in there and cuts the whole of the muscle, as I usually see these patients later down the track, they don't have the muscle anymore because the muscle is not attached anymore. Don't think this is minimally invasive. Don't think, please, that this is a tiny little surgery because the damage that a tiny little surgery can make for the rest of these kids' life is really important.
Rachel:
And we've got one more question that I also saw that we touched on before we go. And so, Emily... And Emily, thank you for your question. Emily has just asked, and I think it's in relation to selective dorsal rhizotomy. Is that something for certain types of CP or explored for all types of CP?
Dr. Paulo Selber:
Yeah. No. It's a great question, Emily, and you're absolutely right. It's not for everyone. It's usually for the person who has spasticity. It's usually not very good in people who have dystonia. But you would be surprised with how many of my patients never heard about dystonia, and the minute they go into my consulting room, I know that they have dystonia. Dystonia is when you can't fine-tune your movements because there's a part right in the middle of your brain that doesn't control the fine-tuning of your movements very well.
Rachel:
Mm-hmm (affirmative).
Dr. Paulo Selber:
And it's believed that if you have spasticity but if you have dystonia as well, when you have a rhizotomy, the spasticity may go away to a certain degree, but the dystonia tends to exacerbate. And dystonia is really hard to control. Yeah. Rhizotomy, I know that there are centers around the world where all you have to do is to show up and you're going to get a rhizotomy.
Rachel:
Yeah.
Dr. Paulo Selber:
Even you, as a parent, may even get the rhizotomy yourself if you know how to... If you have the condition to pay, everybody gets a rhizotomy, but it's not quite like that. And unfortunately,-
Rachel:
I think it's the way...
Dr. Paulo Selber:
... we'll see these kids as well down the track. Yeah. They always come back to us eventually because... And some of them do well, because if you do the same thing 100 times a day, eventually, you'll get one or two that are right.
Rachel:
Yeah.
Dr. Paulo Selber:
But we see a lot of them down the track, five, 10 years down the track, who really are not doing well, and there isn't much we can do to help them, unfortunately.
Rachel:
And so, I think that... I think if we're going to sort of reiterate some of the things today is... Obviously, gait analysis gives you that... It's that tool that gives you the window into what do you look like right now, what does your child look like right now, what are the different intervention options that would be best to treat you. And thinking about right now, but also then thinking about what will be the long-term outcomes, and what is then that trajectory that can be developed for an intervention plan?
Rachel:
And as you said, sometimes, that's doing nothing. Sometimes, that is doing something a little bit... What would be perceived less invasive, like botulinum toxin. And in other times, it's either orthopedic surgery or potentially something like an SDR as well. But you really... It's not a one-size-fits-all type option, and really needing to work out who those who would get this information.
Dr. Paulo Selber:
Yeah. And I think one of the things that happens in this area very often is that... And I heard it from an English professor many, many years ago. The fate of muscles is that they lie just under the skin, so people just cut them. But the truth is, I learned how to do total hip replacements when I was in training in Brazil between 1990 and '94.
Dr. Paulo Selber:
You really... And since then, I think I've done one total hip replacement in my life. You don't want to have your total hip replacement done by myself. You don't want to have your surgery done by what we call low-volume surgeons, I think. And there are lots of low-volume CP surgeons. And I'm not saying that to criticize them because I think... I believe in people and I believe in people's aim, primarily in doctors, that they want to help.
Dr. Paulo Selber:
But the truth is, the same way, I don't do total hip replacements in anyone because I don't know how to do them and I have never done them. I do CP surgery because that's what I'm trained for. So when you go get treatment for your children or yourselves, if you're going to go to a... If you have a hip problem, then go to a hip surgeon. If you have a skin problem, go to a dermatologist that has seen that. If you have CP, go to a doctor who understands about CP, even though I think after 25 years of treating CP every day, I know less today than I knew in the first year. But search for someone who has experience in that area.
Rachel:
I think that's such incredible advice. And particularly for adults, because I think... For a lot of children and for families, they're potentially in CP clinics, and those CP clinics go up to the age of 18. But for adults, sometimes, they say, "You've got to now transition out into adult services." Now, this is really important, to still find doctors who have that understanding of cerebral palsy, because the outcomes, you need to make sure that they understand what they can be, rather than just saying, "All right. We're going to treat the same as what we would do every other time," which, as you said, disease states and different disabilities are very different. So it's really important.
Rachel:
And so, I think, in that way, I just want to sort of obviously point out to everyone again that the Weinberg Family Cerebral Palsy Center... There is also a few other centers around the country who really focus on adults and focus actually across the whole lifespan. And so, if you are looking at doing any of these different surgeries, if you're looking at doing an intervention, please reach out to either someone like Dr. Selber or reach out to the foundation. We're happy to try to connect you with locations around the country, where you can sort of get some of this advice that you can trust.
Dr. Paulo Selber:
Yes. Yes, exactly. We know that living with a disability is tough and it's hard, but it's a cool life. And I think what we... Our duty here at the Weinberg Center is to make it as easy as possible for these patients. So what the Weinberg Center is trying to compose, and it's doing a terrific job, is to gather all sources of resources so that when patients come here, we don't even use the name transition anymore. Never liked the name transition, because I know that when kids go to another hospital, the other hospital doesn't even know them very well, and it's like a big, big breakage in the process here.
Dr. Paulo Selber:
What we're trying to do, thanks to Dr. David Roye's vision, is to not transition. You'll be stuck with us, and we'll be stuck with you throughout life, and we'll do all we can to help you and assist and walk the pathway together, but really walk the pathway together, and not just transition you to someone else.
Rachel:
No, and I think that's so important, but... Thank you. I know that we've sort of spent a lot of your time today, and just so thankful for how much time that you've given us, because I know you're obviously-
Dr. Paulo Selber:
It's been a pleasure.
Rachel:
... a very, very busy man. But that was such a wonderful conversation. And for everybody, just so you know, we'll be posting all the different resources around gait analysis and obviously how you can get in contact with Dr. Selber, but thank you so much and I hope everyone has a wonderful day.
Dr. Paulo Selber:
Thank you.
Rachel:
And we'll be seeing you next Tuesday.
Dr. Paulo Selber:
Thank you very much.
Rachel:
All right. Bye, everyone.
Dr. Paulo Selber:
Thank you so much.
Rachel:
Thank you.
Dr. Paulo Selber:
Thank you for your attention. Bye-bye.
Rachel:
Bye.
Dr. Paulo Selber:
Bye-bye. Bye-bye.