Transcript: The Journey of Cerebral Palsy and Orthopaedic Surgery

Rachel Byrne (00:00:00):

Welcome to all of you and thank you again for taking the time on a Friday afternoon to come join us. If anyone doesn't know me, my name's Rachel Byrne. I'm the executive director of the Cerebral Palsy Foundation.

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But today I'm thrilled to actually welcome Dr. Hank Chambers, who is joining us from Rady Children's Hospital in San Diego. Hank has also been a long-term member of the Scientific Advisory Council of the foundation, former president of AACPDM. Any other title that you can imagine? Hank's probably done it over his time. And so thrilled to have his join us this afternoon to really talk about orthopedics and musculoskeletal care and what can work really well and also what we're hoping to achieve here in Ireland over the next three years.

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We've also got Dr. Enda Kelly who's joining us and some of you may already know him as well, depending on if you've seen him potentially in the gait lab or if not in surgery and who is really helping lead and develop this set call for our program. So just want to welcome both of those and thank you, Hank.

Hank Chambers (00:01:29):

All right. Ready to go. Thanks for having me. It's been wonderful. I've only been here for a couple of days, but it's been great. So what is orthopedic surgery? Orthopedic, the Greek word, it means straight child. So from the very beginning, that's part of our goal is to take care of children and make people straight. But it's surgery that's done on the muscles, the bones, the joints to get you to walk better, sit better and decrease pain. And that's really what we do. That's the point of it. And what can we do as orthopedic surgeons? It's pretty limited as far as taking care of cerebral palsy. We can't solve cerebral palsy. That's a problem of the brain. But what we can do is if you have a fixed contracture, meaning the muscle doesn't straighten out, it doesn't get bent. Those of you who have children with cerebral palsy, you know what I'm talking about.

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If your joint starts coming out of dislocating or if it's only partially out, that's called subluxation comes out. Sometimes we do surgery just so you can wear shoes or braces. And it seems kind of counterintuitive that someone that doesn't walk, for example, that will do a major foot operation, but that's so they can have comfortable shoes. And particularly in cold climbs, for example, you don't particularly have to have them in San Diego, but here I'm sure you'd want to have shoes as much as possible. To alleviate pain and prevent pain, that's one of the goals of orthopedic surgery. So if a joint comes out, you can imagine if you had a dislocated joint, eventually it would be painful. Now it's not always painful at first. Sometimes you can have a dislocated joint for years and not have any pain. But then when you become a young adult and I take care of adults with cerebral palsy, I have for about almost 30 years, I see this as you get older that it does become painful.

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And then sometimes we do surgery, simple surgery to lengthen the muscles in the groin because you can't change the diaper or you can't go to the bathroom. I mean, those are things that we do that for. So what are the things that we can do? What does orthopedic surgery do? There's really, once again, not very many things. We can lengthen tendons. We can take a tendon that's doing this, transfer it with surgery and make the tendon do this. So we have one function, do another function. We can put the joints back into place, particularly the hip joint. Some children walk with their legs turned inward and we cut the bones and turn them out so they're walking in a typical position. If you think about it, your muscles are, the way that we are all set up is in a typical way. So if you all stood up or even just looked down at your feet, you're turned outward about seven or eight, 10 degrees.

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If your foot's turned in like that, your muscles don't work as well. If your muscles are turned in, your bones turned in this far, your muscles don't do anything. If I were going to ask you, what does this muscle do if I'm walking that way? Nothing. It's completely going the wrong way. So we do things where we cut the bones and move them so they go in the right direction. So you could do the best therapy, the best botulinum toxin, the best strengthening, but if your bones aren't going the right direction, you'll never get those muscles to work well. Sometimes we fuse joints. If they're dislocated, there's a couple joints that we'll fuse. For example, if you have a really severe bunion deformity on your foot, we'll fuse that joint and you don't lose any function with someone with cerebral palsy. Occasionally we'll cut nerves.

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Some people would think that's a really good idea if you just cut the nerve, the muscle is not spastic anymore, but then you lose all kinds of function when you do that, including sensation. So there's only a couple of nerves that we cut when we do this.

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You were talking about one of the questions was asked about how do I avoid surgery? How do we delay surgery? And so how does surgery fit in with the life of a person with cerebral palsy? And this is a paradigm that we use in managing everything, but we're talking about particularly about disabilities is what's your condition at the top? So in this case we're talking about cerebral palsy, but we could also be talking about hip arthritis in an old person. And so we know that's a health condition. The body function and structures in cerebral palsy, we know that it's a brain problem. And unfortunately we don't have any solutions for brain problems right now. There's nothing we can do to make the brain better. But what does the brain cause? It causes the muscles to be spastic, to be tight, to not work as well, to lose balance.

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And so this is the area called of impairments and this is where we do things medically, once again, where that's therapy and orthopedic surgery fits in this. So sometimes you have to do that. But our goal of all this is for everybody to have activities, to be able to do what you want to do to play sports. And our real goal is participation, is to be, you want to be in the community, you want to be with your family, you want to be with your friends. I could do a perfect operation, but if I don't get to hear, what's the point of doing that? So that's our goal and it's always in the back of our minds. These things are also important, but I'm not going to talk about them. So when we sit down and talk about orthopedic surgery, we realize there's several important parts.

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So one of them is setting a goal and the goal has to be realistic and consensus. So if you think that we're doing orthopedic surgery and we're going to cure cerebral palsy, that's not a very good goal. But if the goal is that you're going to be able to walk 50 meters without pain, or if the goal was that you're able to sit in your chair comfortably for the rest of your life, if your goal is to transfer, and those are goals that we sit down when we talk about doing surgery with all of our patients, this is why we're doing this. This is a total team sport. This is not like if you tear, I'm a sports doctor as well. If you tear your meniscus, I don't have to ask anybody else, should I fix that meniscus? But if we're talking about doing surgery on someone with cerebral palsy, I want to talk to the primary, I want to talk to the parents, of course, the child.

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I want to talk to the therapist. I want to talk to the neurologist and whoever else takes care of that child of whether that's the good thing to do. So it's a total team approach.

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The other things that kids with cerebral palsy have is not the musculoskeletal problems, but the things that come from the brain like spasticity, thing called dystonia, which is the posturing that people get when they're really, really upset or just sometimes any movement disorder. Some people have what's called ataxia where every step is different from the one before. They have balance problems. So no matter what we do with orthopedic surgery, we still have to manage those movement disorders. There's a lot of different physical therapies that are important after surgery. And I think someone asked about rehab after surgery. We'll talk a little bit more about that. But the surgery, once again, we can do a perfect surgery, but if you don't have really good rehabilitation, it's almost not worth doing the surgery. And I know, as I found out the last couple of days, that might be a real challenge here in Ireland is getting appropriate rehabilitation.

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And that's something that we're working on here. And then what's the role of technology? Whether that is you working on your iPad and using some people can use that as a communication board, whether it's having an electric wheelchair that can let you get from point A to point B, maybe even have you stand up, do those kind of things. So technology is a big role. And then I'm going to talk about the timing of orthopedic surgery and I'm going to show you some examples of some of the surgery that we do. So once we need to do is set goals, a study was done about, it was probably about 30 years now, where they asked a bunch of young adults with cerebral palsy, "What's the most important thing in your life?" And the very first thing they said was independence. And I think you'd probably all say that too.That's most important that you don't want to be living with your parents when you're 40 years old.

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The next one is having a job. In the United States, at least 75% of people with cerebral palsy are unemployed. No matter what they went to college or whatever, they have a hard time getting a job. Communication, just doing what we're doing now, exchanging ideas, telling what our wants and needs are is very high on this list. Activity of daily living, just being able to brush your teeth, comb your hair, go to the bathroom by yourself. This was important to them. Mobility just means getting from point A to point B, and it's obviously very important. You want to get to school, you want to get to see your friends, you want to go to a sporting event. And the very last thing that adults were concerned about was walking. And that's what we're talking about today is what we do to help kids walk better.

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So adults realize that all these other things are much more important. We're doing a study right now in three institutions and asking very similar questions to parents. And I'm pretty sure the results are going to be the exact opposite of this, that walking is the most important one. And the last thing you think about in your five year old child is independence, what's going to happen to them when they're adults, but that's certainly a possibility. So we talked about spasticity and what spasticity is. Those of you who have children with cerebral palsy will know what that is. The muscles are really tight. If you move them really fast, they pull back really fast. You've gone to the doctor's office and they use the reflex hammer and the legs go kicking out. That's what spasticity is. And what are the things we can do to treat that?

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Well, if you've ever had a massage, you'll know how good you feel after you have the massage. You're nice and relaxed and all that kind of stuff. So physical therapy helps a little bit for spasticity, but it's almost all short term. Now physical therapy does tons of other things, but as far as decreasing spasticity, it's not one of the best things you can do. And there are some programs, you might've heard about it, NDT and all these other programs that are available, but they're not long-term improvement in spasticity. We can do anesthetics where we put local anesthetic, the things that you would get if you got your teeth pulled, we can put those on the nerves and you will decrease the spasticity for about four hours. So you can kind of tell that that's what the problem is. You can also use a thing called phenol, which is, it's like alcohol, but what you do is you put it on the nerve and it dissolves the lining of the nerve.

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It doesn't kill the nerve, just dissolves the lining. So the signal that comes from your knee, for example, back to your spinal cord is gone for six months. And so that decreases the spasticity. And that's something that physical medicine and rehabilitation doctors do. And it's actually a very successful treatment, but it takes someone with skill to be able to do that. So for the muscles that we use that for, particularly the groin muscles, so we may not have to do surgery. We can delay surgery on those kids that using phenol.

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Chemo denervation injections, and those of you who've heard of Botox or any of the other botulinum toxins, there's several on the market, does the same thing. You put it into the muscle and it stops that reflex arc going back and forth. So you decrease spasticity. There's some controversy about Botox. Sometimes it's overused. People keep doing it over and over and over again. Did you have a question?

Audience Member (00:14:19):

Yeah. Botox.

Hank Chambers (00:14:26):

You just had it?

Rachel Byrne (00:14:30):

It just stopped working? No,

Audience Member (00:14:32):

They stopped

Rachel Byrne (00:14:32):

It. Oh, they just stopped

Hank Chambers (00:14:33):

It. They

Rachel Byrne (00:14:33):

Said

Audience Member (00:14:34):

It was a poison.

Hank Chambers (00:14:35):

Because what?

Audience Member (00:14:36):

They said it was a poison.

Hank Chambers (00:14:37):

The doctor said it was a poison?

Audience Member (00:14:39):

Yeah.

Hank Chambers (00:14:39):

Yeah. Well, as it turns out all medicines are poisons, particularly all antibiotics are poisons. So there's a lot of controversy about this. Botulinum toxin is a poison, but it's reversible. It goes away. It's like, once again, penicillin is a poison and it goes away. So there's a role for botulinum toxin and I'll explain that in another slide. The problem is when people just use it over and over and over again for their whole life, we don't know what it does in the long term that maybe makes the muscle makes it stiffer and then it's hard. So that's where there's controversy about it. But I wouldn't say just because it's a poison, you shouldn't use it if it's working. If it's not working, don't do it.

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Well, okay. You think about that. Systemic drugs are drugs like Valium or baclofen. It's a medication that you take that makes the spasticity lower, works at the brain and at the spinal cord. So those are drugs that are work. There's a thing called intrathecal baclofen, and I'm going to talk about that in a bit. And then I'll talk about some of these other methods as well. So somehow that moved up on there, but sometimes there's other medications that you take such as anti-seizure medications because a lot of people with cerebral. Anybody have epilepsy or seizures here? Yeah. So sometimes those seizure medications can also decrease your spasticity and help with that, but many of times they have side effects. We also give pain medication, especially as you get older. In adults, pain is one of the biggest problems that people come to see me in my clinic for is pain.

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And it's not like they have arthritis, they're just muscles just hurt everywhere. And so we give pain medication. Try not to give opioids or things like that, but non-steroidal anti-inflammatories like Motrin and things. So botulinum toxin, you've heard some of the controversy about it, but it works at the neuromuscular junction where the nerve comes to the muscle and it stops the release of a neurotransmitter, which makes the signal go through. And so it stops the muscle from working temporarily. And like I said, we've been using it successfully from the late 80s. I was one of the original researchers on using botulinum toxin in children. And so I've been part of all the safety studies and all of the, and I've published a lot of papers on the effect on muscle. And so I think it's something, I know it's controversial. I have a new partner who actually was Dr.

(00:17:49):

Kelly's mentor who's totally against it, but I'm not. And so I think you should use it appropriately, that's all. Just don't use it too much. So when we were talking about a reflex, and this is kind of an important slide. So this is the spinal cord here.

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Here's the knee joint. And when you hit this with the hammer, there's receptors in the tendon and in the muscle, and this reflex goes right back to the spinal cord and it comes right back out. And if I cut your head off and you let you walk, you would just be a reflex. So that's why children who have brain problems when they're walking up on their toes, they stay up on their toes because that reflex is going back and forth. What the brain does is inhibit or modulate that reflex. So there's a neurotransmitter that comes out, it decreases this reflex. So whether you take Valium or Baclofen, one of those medications, that stops this reflex arc. If you put Botox in the muscle, it stops the reflex arc. So that's how that works. So there's an operation called a selective dorsal rhizotomy, which your son had.

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And what you do is you think you'd cut the motor nerves to stop the muscles from working, but you actually cut the sensory nerves. And it's called selective because you cut about 20 to 30% of the nerves that come back. So you have this really spastic muscle that comes out here. It doesn't go through, so it doesn't come back out. So there's still spasticity. There's not less spasticity at this point because you've done the selective rhizotomy. And you do that at many levels. What levels, do you remember what levels your child had? L1, L1 through S1 or something. Do you remember? Okay. Yeah. So you do it in the lower spine. So it works that way. And so it's best done in children who were born prematurely, who have fairly good trunk support and have pure spasticity. That's the best outcomes for that. I don't know if your son had that.

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Yeah. Yeah. So yeah. So the problem is it doesn't work for every type of cerebral palsy. So if you have dystonia, if you have ataxia, the uneven balance and stuff, it doesn't work or it can make things worse. Now we didn't start off and talk, I didn't bring this up, but I have a 42 year old son with cerebral palsy and he had a rhizotomy when he was six because that's when you're supposed to have it. We didn't know until a couple years later that he had dystonia and it was probably the worst thing we could have possibly done for him. He can't move his legs at all now. He lost all that function because we did the wrong operation. So even doctors can choose the wrong operation. So I take responsibility, but we didn't know that at the point. We didn't know that you shouldn't do this with dystonia, mainly because we didn't know what dystonia was until probably 10 or 15 years ago.

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And I told you that dystonia is that posturing you've probably seen and kids have a typical speech pattern from that. So that's how selective dorsal rhizotomy works. And so it's a good operation done for the right reasons.

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Oops. And this is just to show what that is, a small incision. You find all those little nerve roots back there and all you do is cut them. It's a really simple operation. I could teach anybody in the room to do it in about two minutes.

Audience Member (00:21:45):

To cut.

Hank Chambers (00:21:47):

That's a really good question. I'll go. Yeah. Okay. So what they do is they put needles in the muscles of the legs. And so it's called an EMG and they also have a neurologist under the table. It's a really boring operation. And you take each one of these nerve roots, you pull it out and you stimulate it. And if it makes the muscle fire on the EMG and the neurologist feels it, they go, "That's one you should cut." Because some of these are just sensory nerves. If you just went in there and randomly cut them, you might cut a sensory nerve and then you'd have numbness down there. Yeah. So it takes forever to do the operation and it's really boring because you just sit there, "Okay, do that one. Okay, good. All right. Next one. That's good." But that's how you do. So that's a selective dorsal rhizotomy.

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Now there are people that do non-selective dorsal rhizotomies and they just randomly cut 25% of the nerves thinking they're going to get some. But I've seen the results of those and some kids have numb patches on their legs forever, which if you've ever had numbness in your leg, it bothers you for the rest of your life. So I think if you're going to do it, get a selective rhizotomy.

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The next one, which I think has really changed our care, particularly of the more severely involved patients, is the intrathecal baclofen pump. And this is a, do y'all play hockey here? Hockey, not a sport? Well, anyways, it's the size of a hockey puck. It's about this big, size of a hockey puck.

Audience Member (00:23:33):

Hurling ball.

Hank Chambers (00:23:36):

It's about one and a half times the size of this. Okay. And you put it underneath the muscles in the front of the abdomen right here. And then we run a catheter into the back and then we put this catheter up into the spine. When we first started, we used to put it about right here and that would take care of the lower extremities. But we realized that most kids have some upper extremity involvement as well and we run it all the way up into the neck. When my son had his put in, it was the highest one ever put in. It was all the way up at the top of his neck. And he woke up, he was very rigid. We could hardly lift him. He woke up and he was completely relaxed and he's been completely relaxed for 22 years now. So 26 years now.

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So it really is very effective. There's always risks when you do any surgery like this. So one of the risks is if you get an infection, it's right in your spinal cord and then you get meningitis. Those are rare, but that's always a scary thing. There's always some downsides about surgery. You have to refill the. This is where you refill it, you find it and you put more medication in. It's baclofen, the same medicine that you take orally. And so you just pump that in there. And then we have this iPad and we can change the dose. So every hour we can put a different dose in. So if you had problems going to sleep because you were spastic or dystonic, we give you a little dose about two hours before you go to sleep and you're completely relaxed when you go to bed. If you wake up and you're really spastic and you're dystonic, we give it to you about four in the morning and you wake up and you're completely calm.

Audience Member (00:25:33):

Remotely?

Hank Chambers (00:25:34):

Well, it's remotely in the fact that you can't do it, but you still have to, you come in and you take this thing and you put it over the top and you don't have to, and then we just mark it in. You just put it right over the. It's like a wand. We call it a wand. It's a wand. And when you put these in, it's an experiment and every kid is completely different and we sometimes take four to six weeks to get them to the right dose. And then once we do, it lasts pretty well. Yeah.

Audience Member (00:26:03):

Is there a criteria for criteria for everything for kids or adult psychiatrists? Is it dependent on their level?

Hank Chambers (00:26:10):

Yeah. So it's usually. I'm sorry I didn't put the slide in here about the levels of cerebral palsy, but the level, we rarely put these in kids who are ambulatory, usually kids who are non-ambulatory because they're the ones that have the most dystonia. So the first three levels, so level one is someone that you hardly know has cerebral palsy. Level two is someone who's using a walker or crutches. Level two is someone who has an AFO, a brace. And level three is someone who's using a walker or crutches. So those are ambulatory. And then level four is someone who is in a wheelchair but can push themselves or can drive an electric wheelchair. And level five is someone who's completely involved, can't do anything by themselves or can do little by themselves. So most of these we put in our level four and five patients, occasionally a level three who's really dystonic, but we have about 200 of these pumps in my program.

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And so it's a lot of management. We have a lot of nurses that just, this is all they do is take care of these pumps. The other problem. Yes.

Audience Member (00:27:21):

Would that affect your mobility if you get that?

Hank Chambers (00:27:27):

Because

Audience Member (00:27:27):

I'm able to walk legs.

Hank Chambers (00:27:43):

It could. It depends on how much you walk. It depends on how much you walk. If you

Audience Member (00:27:47):

Walk -

Hank Chambers (00:27:59):

Sure. Yeah. Well, the nice thing about this is you're not transferring all day long. You could say there's several times during the day that I want to transfer and lower it during the day and you'll be a little bit tighter during the day, but you'd be more relaxed at night. It really helps with pain as well. Yeah. I think this was a life changer for my family and it's a life changer for many, many of my patients. So if someone has talked to you about it, you can think about it. I've heard in Ireland you have to get a test dose before you can get it.

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The reason we stopped doing it is the test dose were 99% successful. So we go, "Why would we put somebody through that?" But if it wants to help you make up your mind, a test dose is helpful because you'll be totally relaxed afterwards. The problem is it's the wrong dose. Whatever we give you is the wrong dose because we haven't had the time to make it right with this thing. So we may give you too much or too little. Y might get it and you go, "I can't even move." And then the other ones you might go, "I didn't hardly feel it, but we didn't give you the right dose."

Audience Member (00:29:13):

How does the drug work? It just relaxes the muscles

Hank Chambers (00:29:16):

Or the nerves or.

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Yeah. So going back to this slide, the neurotransmitter that works here is a neurotransmitter called GABA, gamma aminobutyric acid, and that's what Valium and Baclofen are. So essentially it's doing the stuff that's not coming from the brain and that's modulating this reflex, stopping this reflex. So intrathecal baclofen, you use a hundredth of the dose that you take orally because it's sitting right there on the spinal cord. So that's why it works so well. Did you have a question or just. You have to quit scratching your nose like I do. Okay. All right. Here's kind of a new.

(00:30:09):

We were just at the American Academy for Cerebral Palsy last week in Quebec City. And for me, the only real treatment for dystonia has been the Baclofen pump. And this investigator, do you remember where he was from? I don't remember where he was from. Do you remember? I don't either. Anyways, he was putting electrodes through the brain and putting them into this area where this is the area that the dystonia comes from. And this is a little electrical stimulator. Here's the lead that goes down in. And he was showing results of kids not having dystonia anymore without any medication, with these really thin, super thin wires going into the brain. This may be the new management for this. We don't know yet. I mean, he was treating depression and things with it. So there's a lot of things that I'm not quite sure how that's going, but it was very exciting.

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And he was from somewhere in Canada. I'm trying to remember that now. Anyways. Sorry,

Audience Member (00:31:24):

Wasn't there something about, I've heard about this before that they were treating epilepsy.

Hank Chambers (00:31:29):

Yes. Treating for epilepsy, you can do that. I think it's becoming one of the new treatments for Parkinson's disease. And so it's kind of an exciting new area. So we don't know much about it yet. There haven't been much studies. So that's the treatment of the movement disorders. And none of that is really orthopedic surgery. That's all neurosurgery or neurosurgery like. But remember I told you, you can't fix the brain, but these things do work at the nerve level. So now your surgeon has, you've had a gait study, for example, or you've seen your orthopedic surgeon and they say, "We think you should have surgery." And the first thing you're thinking about is, "What do you mean I'm going to have to have surgery?" And I've been there. My son is 42. He's had 35 surgeries. Not all of them are orthopedics, but a lot of them were orthopedics.

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So every time we go through surgery, you go, "Oh man, another one of these. It's really, really hard thing to do." And this is the question that everybody asks and you've already asked this question. Is this the correct plan? Is it going to be done correctly? Do I trust my doctor? Do you trust Dr. Kelly?

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And does the surgeon know my child? Do they know what my goal is? And these are really tough questions and you should ask those questions. You should ask people, "How many of these have you done? What are your outcomes?" And if your doctor can't tell you, like I've watched this on YouTube, you probably don't want to have that surgery. And that's true of everything. Getting a total knee replacement, you go, "Yeah, I saw that on YouTube yesterday. I'm going to do that." So it's really important to trust your doctors. And I think I was able to meet all the orthopedic surgeons in Ireland yesterday and I felt really confident that you have a great group of doctors here in Ireland and they'll do the right stuff and they're very interested in learning more, learning new techniques. And I think you're really in a good position.

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To be honest, when I came here, the only person I knew was Enda who I treated, Dr. Kelly, who I treated, who I knew, and I knew he was trained really well. But I was very impressed by the other orthopedic surgeons, pediatric orthopedic surgeons here in Ireland. But how do you get the information? Well, you can go to the internet and that is a wild west trying to find the information.

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If you Google anything about cerebral palsy besides the Cerebral Palsy Foundation, almost everything you're going to find is by lawyers. And they're actually really good. They tell you a lot of stuff in there, but then they say sue the doctor and sue the obstetrician. But there's a lot of good information there. I'm not saying it's bad. What you're doing here, coming to parent support groups, if you're not a hard one, finding other people who have had the surgery, finding what their experience has been, I think is really important. I always encourage my patients to get a second opinion if they want. If they don't, that's fine. I don't tell them to go get one. But if you ever have a doctor that says either take me or I don't ever want to see you again, you're in trouble. That's not good. That means that doctor is very insecure and you don't want that person to be your doctor.

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If someone questions what I'm doing, I might want to hear what that other doctor wants to do. Maybe I didn't think about that. And then word of mouth, you all are a close community. You'll talk to each other and say, well, he did a really good job or she did a really terrible job, whatever. So those are ways to decide what you do with surgery. So there were these popular surgical approaches and we've changed our philosophy and our treatment over the years. So when I first started, unfortunately about 40 years ago, we were doing surgery on little kids like three year olds. We were lengthening tendons on three year olds. We were doing one surgery at a time where we'd lengthen a heel cord and then the next year we'd lengthen the hamstring muscle and then we'd lengthen the adductor muscle. And so the kid was always in the hospital.

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One of my mentors, Mercer Rang, called it birthday surgery. So you'd be in the hospital every one of your birthdays having some surgery. We found that that's probably not the best way to do that.

(00:36:13):

Many of you are going to be exposed to this thing called SPML. Have any of you heard that? It's really popular in some places. It's popular in the United States. So that's selective percutaneous muscle lengthening. And when you lengthen a tendon, there's a couple ways to lengthen a tendon. One of them is you pulled that slide out. But you take a tendon and you make a Z cut in it and then you pull it apart like that and then sew it together. So that's how you lengthen a tendon. The other one is you go to where the muscle comes into a tendon and then you cut across the tendon, pull the muscle apart and then that part fills back in with tendon. So it's really a good way to do it. So that's an open technique. And the closed technique is where this SPML is where someone takes a knife.

(00:37:07):

Any of you make pies? Yeah. So you pie crust it and you have to put a bunch of holes in the tendon and then you stretch it and hope that it tears the right way. A little bit scary.

(00:37:23):

There's two downsides of it. One of them is you don't know where the nerves are when you're doing that. The other one is you can over lengthen it and where you put too many pie crusts in and then the whole thing snaps and then you have a terrible outcome or you don't do it enough and you essentially had surgery and you didn't get what you wanted. There was a study out of Turkey, really well done. Well, Greece maybe out of Greece where they had someone who was an expert in this SPML and he thought everything was great. And then when they opened it up, they found out that they had to lengthen the muscle this much further and also he had cut one of the nerves by accident. And so it's very popular. People are selling this in America. They're selling it in Europe. It's really popular in Munich, but there's been no good studies on it.

(00:38:22):

I'm not against new techniques. I've done new techniques, but if it's not studied, you don't want to be the person that's getting this experimental surgery and that's what's going on.

Audience Member (00:38:31):

So SPML is the new surgery, the new type of.

Hank Chambers (00:38:36):

The open one is what we've always done.

Audience Member (00:38:38):

Okay.

Hank Chambers (00:38:40):

The

Audience Member (00:38:40):

Results so far are not great. They're not.

Hank Chambers (00:38:43):

Who knows? No one's done any studies on them. That's the problem. So this might be the new way that I'll be doing it 10 years from now, but probably not because I don't know if I'll be alive 10 years from now. You

Rachel Byrne (00:38:55):

Might. So it's also called

Hank Chambers (00:38:59):

Perks.

Rachel Byrne (00:38:59):

So you might hear it as perks and both of those get interchange.

Hank Chambers (00:39:04):

Yeah, that's on there.

Audience Member (00:39:06):

Sorry, what's the distinction between perks and SPML?

Hank Chambers (00:39:10):

Same.

Audience Member (00:39:11):

Exactly the same.

Hank Chambers (00:39:12):

Same. Yeah, just different names. Yeah. I think they've made it SPMLs because it sounds more scientific. Perks sounds kind of. I just made this up, but it's the same technique. Percutaneous. There are some muscles that you can do percutaneous that we do. For example, a three year old that needs to have surgery because their hips are crossing together, we can lengthen the tendon in the groin and that's pretty safe to do. So that turns out to be a five minute surgery with an incision about that big. So we'll do that. We'll do that sometimes. This is a whole different subject, but kids with club feet who are before they're one year old, we cut the tendon with a scalpel. It's percutaneous, but those are rarity and people are trying to do less surgery and claiming it's less scarring, but I haven't found that that's true.

(00:40:11):

So I still do mostly things open. And so what has kind of come out in probably the last 30 or 40 years is to combine the bony surgery that I talked about as well as tendon lengthening and open tendon lengthening, and that's called multi-level surgery. You might have heard of it called Semels before, and that's what we called it single event multi-level surgery.

(00:40:37):

Most of the time I do single event multi-level surgery, but sometimes I don't, so it's just the way we change the name. So if I'm doing surgery on both sides and I'm doing surgery at the hip, knee and ankle, I might have 16 operations that day and sometimes that's too much for a child. So we just now call it multi-level surgery. And so this comes back to your question about the timing of the surgery. When's the best time to do it? This when I use botulinum toxin. When their kids are really young, here's their age down here. When they're really young, I use botulinum toxin, physical therapy and braces.

(00:41:22):

As they get older, we add casting. Has anyone here had serial casting for any reason? Is that something. I heard it's not done here because it's hard to get, but it's where we take a. When say your ankle's like 10 degrees, you're on your toes for 10 degrees, you actually can just put them in a cast for four to six weeks and stretch out that muscle. So you don't have to do surgery, you don't have anything. But sometimes we add Botox to that to make the stretching easier. And so that's nice. Sometimes we do it at the knee, sometimes we'll do it at the elbow, but mostly for the ankle. And so we'll do that in this age group. Down here, anytime we see that the hip is coming out of joint, anytime, if they're two or three years old, we'll do a surgery to keep those hips in.

(00:42:10):

And it might be a simple lengthening of that muscle in the groin that I was talking about. It's called the adductor muscle. Sometimes it's even a surgery where you cut the bones to move the hip so the hip's going in the right place, but we don't want the hips to come out, that's our goal. And then we go to this age group starting at around seven, going to around 14, 13, 14. This is the critical time to do surgery, orthopedic surgery, to do multi-level surgery.

(00:42:45):

If you do it early back here, there's a really good chance you're going to have to do it again as the child grows. If you do it out here, it doesn't work very well. So kids that are over 16, 17, 18, you can do the surgery, but the outcomes are not as good. So there's this magic period. When I do the surgery, soft tissue surgery or even bony surgery in adults, I know I'm not going to get as good a result as I did had I caught them in that teenage years. That's the golden period.

Audience Member (00:43:20):

If you've got to the age of 14 or 15 and you haven't needed surgery, is there much chance you're going to need surgery when you get

Hank Chambers (00:43:29):

Older? Depends on what it is. If, for example, your child was crouching down like that, that'll get worse just because of the weight, your weight will keep going. If you're walking in like that, that's probably not going to get worse. So it really depends on the problem.

Audience Member (00:43:54):

So what exactly do you mean by bony surgery? So something to do with bones?

Hank Chambers (00:43:59):

Yeah. I'm going to show you some in just a second. Yeah. But yeah, that's when we were talking about the bones, we have to cut the bones to rotate them out so they're going the right direction.

Audience Member (00:44:10):

But you're saying, sorry, that it's multi-surgery. You're always saying that you should have both, so the tendon lengthening and bone surgery or

Hank Chambers (00:44:19):

It

Audience Member (00:44:19):

Just

Hank Chambers (00:44:20):

Depends on - Depends on the kid. Yeah. So that's why it's called multi-level surgery. It could be all kinds of things. So you asked about -

Audience Member (00:44:30):

Could I just ask you in that graph, you don't have PERCS or S, unless I'm reading it wrong.

Hank Chambers (00:44:38):

Don't have what? I'm

Audience Member (00:44:39):

Sorry. PERCS or SPML. You've got casting, Botox, but does PERCS SPML -

Hank Chambers (00:44:47):

I don't have them on there because I don't do them. There's a lie

Audience Member (00:44:51):

In there somewhere.

Hank Chambers (00:44:52):

I don't do them, but this is where they're done at this level. They're done

Audience Member (00:44:54):

At that.

Hank Chambers (00:44:55):

Yeah. And they're done on younger kids. They still do them on the older kids too, but this is where they do them on. If you go online and look up some of the YouTube videos, they're doing them on two and three year olds. It

Audience Member (00:45:06):

Seems to be coinciding a lot with STR surgery as well.

Hank Chambers (00:45:10):

Yes. Particularly in St. Louis. One of the big purveyors of that surgery is a friend of mine and he did them on all the kids there. And so we have point counterpoint discussions all the time about if that's the right thing to do. I'm not saying it's wrong, but someone should do a study. That's all. They just aren't doing that. So scoliosis is a problem, particularly in the kids who are non-ambulatory. If you're non-ambulatory, you have either a 70 to 90% chance of having scoliosis. Now that doesn't mean it has to have to have surgery for it, but that's when you have to start looking for it. We start looking for that at that age and there's all kinds of different surgeries to do. The other thing that ambulatory kids, particularly kids who are using walkers who get heavier and heavier can get fractures of their spine and that's called spondylolisthesis where they break the bones and then the bones move.

(00:46:22):

So my son who was a non-ambulatory patient actually had a fracture and we couldn't figure out why he had pain. So that was pretty bad on my part and my partner's part.

(00:46:34):

We didn't do that until we fixed his spine. So this is what I was talking about, the hip abduction. This is the one we do percutaneous and you lengthen the tendons to get the feet and the legs in a better position. This is the one place I was talking about doing neurectomies or cutting the nerve. There's a little nerve that's sitting right on one of the muscles. Sometimes if you cut that nerve, the legs can go in a better position, which I only do if I'm doing it a second time. I don't do it on the first time because sometimes the legs get stuck out like that, which is then not any good.

(00:47:15):

And this is how we do a muscle lengthening. We go in and we find the. There's the muscle, you find the muscle, there's a little layer over the top, you isolate it and then you cut across this and then the whole muscle spreads apart. And that's what an adductor lengthening is. The other thing that children have is particularly those who are ambulatory but also who sit for a long time, is the hip flexor muscles. Now the hip flexor muscles are this muscle that comes from your spine called the psoas. And this is a muscle that's in the inside of your pelvis called the iliacus. For those of you who eat meat, this is also the filet mignon, not in a child, but anyways, that's where it comes from. And so your hip is flexed and so you go in and you lengthen that tendon. So then the hip, instead of being up like this, comes back down.

(00:48:23):

So that's a hip flexor lengthening. And we do that often in kids who are ambulatory.

(00:48:31):

Now at the hip, one of the programs being started here in Ireland is a hip surveillance program where we don't want to have any children have dislocated hips. Sweden has gotten to there. My county has gotten there. We don't have any dislocated hips because we screen them all the time and it depends on how often you get the x-rays. So for kids who are ambulatory, every couple of years you get an x-ray. Kids who are non-ambulatory, you get an x-ray every year, sometimes every six months if you start seeing the hip coming out. So this is called subluxation. So only part of the hip is out, probably about 45 or 50% is out and that's just not acceptable because it's already made the socket bad. So it's affected the socket and it's affected the hip. And so as I told you in our system, anytime the hip's coming out, we do surgery, whether it's soft tissue surgery or bony surgery to get the hip in a better position.

(00:49:39):

Rarely do kids have pain. What we're trying to do is prevent pain because in my adult clinic, people who have dislocated hips are in pain for their whole life and we do not have good surgeries for that. We have a lot of surgeries, but they're not all good and they don't really get rid of the pain. Yes,

Audience Member (00:49:56):

Ma'am. Is there a certain degree that is okay?

Hank Chambers (00:50:04):

So that depends on the age as well. If you're 18 or 19 and it's 30%, I would probably be okay with that, but I would still continue to follow that. What if

Audience Member (00:50:16):

You're two with that

Hank Chambers (00:50:18):

Percent? If you're two with 30%, that's when I would do soft tissue surgery. Sounds like a personal question.

Audience Member (00:50:27):

Let's wait and see.

Hank Chambers (00:50:31):

Yeah. What do you think Enda? What's your.

Audience Member (00:50:36):

That's something I'll talk about it.

Hank Chambers (00:50:41):

Is that true? Do you like to wait and see? Yeah.

Audience Member (00:50:43):

Well, survey. We do physio, we do that to these exercises every day. We do get an x-ray in a year. Okay, we'll be there, but it's like are we waiting until it gets to 50% that we're put at surgery within the week? I

Hank Chambers (00:50:59):

Don't want that. No. So that's not my philosophy, I have to say. Our philosophy has not been that. So if it's 30% at two, we would do a lengthening. Physical therapy does nothing for subluxated hips. Botox does nothing for subluxated hips. So it's a fairly simple operation and our goal is to. If it's already coming out at. If it's 30% at age two, there's about a 90% chance it's going to have to have surgery, but you want to wait till they're eight. So you do everything you can, so you only have to do one surgery. If you have to do a bony surgery at age four, there's a really good chance you're going to have to do it again when they're nine or 10. So that's the goal of surgery.

(00:51:43):

So the other thing about this is, so pain is a light problem, but loss of sitting ability can be an early problem because if your hip's out, your pelvis is rotated and you're sitting back like this and you can't sit in your chair. And so that's the other goal to do the surgery. Because the kids who have this are usually sitting, we've done some studies that showed that most of the time the hip is actually coming out the back. So you may not even see that on an x-ray because you're looking at an x-ray from the front. So screening is important, but physical examination is just as important. You have to do both. You can't just get an x-ray. You have to examine the child and make sure the hips move out or they come straight when you do that. And the surgery we do, so here's a kid with probably 70% on that side and completely dislocated on that side.

(00:52:42):

And here's surgery after we cut the bone to bend it so it goes inside and we reconstruct the socket, the acetabulum. Maybe kind of gross, but we take the bone from here and put it up there and that's how we reconstruct the hip. And so that's a really good treatment for hip subluxation. And that's why we're doing the surveillance. I mean, surveillance doesn't cure any problem. It just tells you ready, this is now time to do the surgery or not do the surgery if it's stable. So the problems at the knee, there's a thing called crouch gait, and this is something that Dr. Kelly can really help pick up both just examining you, but also in the gait lab. And this is where you have increased flexion at the hip, increased flexion at the knee, and your ankle's actually gone too far. You're down like this, so you're crouched.

(00:53:42):

If you can imagine, just try it yourself sometime, how hard it is to walk and how much pain that would be over time. This is often caused by a percutaneous lengthening of the heel cord. I see this all the time with people who've had these percutaneous lengthenings, especially when I go to lower and middle income countries to work. That's the surgery that the doctor knows how to do and that's what they do and forget about all this other stuff. It's really hard to fix, but we have surgery to fix that. We lengthen tendons. We can do bony surgery to straighten that out. We have special braces that we put on for this, but we want to catch this early. If you catch this late, there's really little that you can do for that. You're right. It's really hot in here, isn't it?

(00:54:33):

The other thing that you can have if you're down like this for a long time is your kneecap can come out of joint. Your kneecap should be here and your kneecap is way up there. And so that becomes painful as well and kids can have dislocated kneecaps from that. The other type of gait is much more typical, and that's someone who has diplegia, meaning both lower extremities are involved or hemiplegia where just one side is involved. And that's where you're up on your toe, your knee's bent, and your hips bent. And so this kid has that, increased hip flexion, increased knee flexion. And if you really look at it, this bone is rotated inward, and this is what's called femoral antiversion. And then on this one, up on his toes, so he has a heel cord contracture.

(00:55:29):

Sometimes we'll do what are called hamstring lengthenings, and that's where we make an incision in the back of the knee, find all the hamstring muscles. And this is what I was talking about, this recession or cutting at the musculotendons junction. The tendon's way down here, but we're cutting it way up here on the thigh, and that gives you much better control of the lengthening. If you just cut the tendon or you do this SPML or the perks, you don't know how much lengthening you're going to get. So this one, you're looking at it, you can see how much lengthening you're going to get.

Audience Member (00:56:06):

Sorry, could you just explain a little bit how you control that again? Is that the Zed

Hank Chambers (00:56:12):

You were talking about? No, this is not the Zed. This is just where the tendon and the muscle come together. It's called a recession. But

Audience Member (00:56:20):

You don't cut it fully, you cut part of it out, is that it?

Hank Chambers (00:56:24):

No, you don't cut it out. All we're doing is cutting across the. This is not a really good picture. You just make a single cut and then you take the leg and you straighten it out and then it pulls apart. And this is the gap that's left.

Audience Member (00:56:38):

And that gap fills

Hank Chambers (00:56:39):

In. And that gap fills in with tendon. So if you go back four years later, you can't even tell where you cut it. Yeah. So it's a nice way to do it.

Rachel Byrne (00:56:47):

And can you just talk a little bit more about then how you can determine how much you need to do? So say for example, because you can see it, you sort of know how much you're cutting, but then through the stretch and things like that, you work out how much.

Hank Chambers (00:57:01):

Yeah. So every joint has a different goal that you're setting for. So if you're doing a hamstring, everyone in the room, all of you should be able to put your legs straight up and down when you lie down. I bet you let's check. Not very many. I go to stretching class every week to get that. But for a kid with cerebral palsy, you only want to get them to there because you don't want to go too far. So you get them to about that. And in the heel cord, you want to go so they can pull their ankle back about 10 degrees past zero, so 10 degrees that way. If you go more than that, then you get that thing called calcaneus like that kid had with the crouch gait. So that's our goal and that's the dose, if that's the question. So we don't want to go too much and we don't want to go too little.

Audience Member (00:57:54):

Sorry. How often can you have an?

Hank Chambers (00:58:00):

I've done it up to four or five times in some kids, but I'd say the majority is twice. Yeah. You get a kid who's seven or eight, and it depends on how tall their parents are at that point. Or if they're getting therapy. Is that you? Yeah. If they're getting therapy or they're playing sports or something like that, or they're doing daily stretching, that's the important thing. So if you get a kid and you do it at six and they have a really good rehab program, you may never do it again. But if they grow to be really tall and they don't do any stretching, you'll probably have to do it again.

(00:58:41):

There's a thing called stiff knee gait, and this is where one of the muscles in the thigh is really tight, really spastic, for example. And so when you have this, there's three ways you can know that someone has this if your child has it. And one of them is they do this thing, it's called circumduction and move their leg around. Cameraman's going wild. The other thing you can do is vault where you go up on your toe on the other side. And if any of you have ever played any sports and you hurt your knee, how would you walk off the field? You walk off like this, turn your knee this way. Those are the three ways you can tell. You don't even need any special things. You just look at a kid and know that they have this stiff knee gait.

(00:59:34):

Now, those things I was telling you about the bony problems is a thing called lever arm syndrome, and that is due to the fact that the bones are rotated one way or the other. So every child when they're born is born with their legs turned inward. If you remember, you're typically developing child or your child with cerebral palsy when they're Firstborn, their legs are always turned inward. As you grow, as you stand up more upright, the bone rotates and goes in the right direction. And that happens in 99% of typically developing kids, but sometimes only 50% of kids with cerebral palsy because their hips are forward like that. Sometimes the tibia bone is turned inward.

(01:00:29):

Almost all kids are turned internally rotated because that's the way they are when they're inside the womb. The legs are crossed over each other and they're internally rotated. And once again, as kids start walking, they start turning outward. And sometimes you have this bone turned inward, the femur bone, the tibia bone turned outward, and that puts a huge pressure at the knee joint so it can pull the kneecap out of joint. And I see that in athletes all the time where their kneecaps keep popping out and then you have to do surgery to fix the bones, not particularly where the knee is. You have to fix the bones above and the bones below to get their legs going in the right direction. And that's what this patellar subluxation dislocation is. It's pretty rare in young kids, but it's much more common in adults. So I've done many surgeries on adults with patellar dislocation.

(01:01:21):

The other lever arm syndrome, remember what a lever arm is? It's something to make things work the best. So the longer the lever arm, the more you can lift a rock or something. And so if your lever arms are wrong, and like I said before, if you're going like this, the muscles don't work at all. And a flat foot, which is what pesvalgus means, is your foot is way externally rotated and the muscles on the inside of the foot can't work to pull your ankle up. So no matter what you do, you can strengthen that muscle, you can electrical stimulate it, you can do all kinds of stuff, but the foot still won't pull out. So that's why we do surgery to reconstruct the feet. And sometimes that's a hard sell for families. I go, "Why do I need to get the flat foot reconstructed?

(01:02:10):

I have a flat foot," but it's a whole different problem. So we do operations where we cut the thigh bone, the femur bone, and turn it in or out. Usually we turn them out. We do the tibia bone, do the same thing, and then we do surgery to correct the foot.

(01:02:30):

And that usually includes cutting several bones of the foot to get it in a better position. So the problems at the foot and the ankle is we have kids that are up on their toes, that's called equinus, like a horse. Calcaneus is when they're walking on their heels and that's usually due to somebody cutting the Achilles tendon. You can have varus, which is where your foot's turned inward, like a clubfoot is a varus foot, and that's a stiff foot. So if you've ever seen a child or an adult with a club foot, they're walking on the side of their foot and it's really stiff. And then you can have valgus, which is when your foot is turned way outward, and that is what I just told you. It affects the way that the muscles work. And then the thing that I see most in adults, older teenagers and adults, particularly who are non-ambulators, is a bunion deformity where their big toe goes underneath their other toes or if it's called a dorsal bunion where it goes down and then they get a skin irritation on the top of their foot and they can't wear shoes.

(01:03:31):

And so we have surgery to fix all of these. Calcanea is not so much. So if someone over lengthens a heel cord, that's a bad thing. So we can fix all this other stuff, but we can't fix that.

(01:03:46):

So we've decided to have the surgery, you're okay. The doctor's explained it all to you. We need to be partners with you. This is not just let the doctor do everything. You all have to be involved at all parts of it. So you get educated on what the goal is, what the surgeries are going to be, ask questions. We love questions. I kind of always hate it when I say I'm going to do eight operations on the kid and they go, okay, do you really understand what I'm going to be doing? You really want to talk about pain management. Some of these are painful surgeries. And at our hospital we use a lot of blocks with anesthetic blocks. For really big surgeries, we put a catheter in the spine and it's called an epidural catheter and it decreases the pain for two or three days and then the kids hardly even know they had surgery and I think that's very effective.

(01:04:44):

You want to make sure that your physical and occupational therapist are communicating with your surgeon and that you've got the same plan. If we do a big surgery and the therapists go, "I don't care what he did. We're going to do something else." That doesn't work either. Of course, make sure you have a therapist. That's really important. We want to make sure that if they need some equipment like wheelchairs or special beds or toilet chairs or shower chairs, that you have those ordered before you get home because you can't get them after you've had the surgery. And so the big thing is that you want to be effective partners with us because we really appreciate it and your children particularly appreciate that. Just a couple more slides about adulthood.

(01:05:32):

We take really good care of children in almost every country I've ever been at, but once you turn 18 or 21, you kind of fall off the cliff and it's really hard to get care. It's a project that's part of the project that's going on here in Ireland. We're trying to figure out how to help that. It's going to be a hard one because it's hard to figure out anywhere else. We kind of have a solution at my hospital, but that's just been lucky, I think. The nice thing is that orthopedic surgeons, we've been trained to take care of adults. That's just part of our training, but your pediatrician has not been. So your pediatrician doesn't really know how to take care of an adult. So the hard part is then finding someone who understands what cerebral palsy is when they're older. And once again, that's one of the projects that the CP Foundation's working on.

(01:06:27):

So I've had an adult clinic for a long time and these are the things that I see. And I hate to say for those of you who have children that this is what's on the horizon, but it is something that you have to think about. Like I said, my son's 42 and my wife and I are giving a talk next week in San Diego and we realize that he's had 10 surgeries since he turned 21. So it's not over when you're 21. So pain is a real problem as I mentioned, that can be managed a lot of ways. Therapy, stretching, exercise, all kinds of stuff like Dr. Kelly was saying, doing strength training really decreases pain. Arthritis, if you can't move your joint through a full range of motion, you can start getting pain. One of the things that everyone needs to be aware of is that there's a higher instance of mental health issues in people with cerebral palsy, whether it's depression -

Audience Member (01:07:28):

I was going to ask that. Do you think maybe from an earlier age, maybe getting a therapist?

Hank Chambers (01:07:37):

If that would help you, yeah. I think that's always good. You're talking about a psychological therapist?

Audience Member (01:07:44):

Yeah, a psychologist.

Hank Chambers (01:07:44):

Yeah. It really depends on what you have. If you have family members that can help you, but if you're depressed or you're anxious, I think that's good to see a therapist. No, because

Audience Member (01:07:57):

I find my and I took him to child psychologist and he tells her.

Hank Chambers (01:08:05):

Yeah, that's really good. I find

Audience Member (01:08:08):

He's a lot better.

Hank Chambers (01:08:10):

He

Audience Member (01:08:10):

Seem to cope about better because he's milder, he's noticing the difference with and stuff. And he's more able now to cope with this because he's got a coping mechanism. Can only help so much sometimes

Hank Chambers (01:08:33):

Need

Audience Member (01:08:33):

Someone else. And I think if they go from when they're earlier from when they don't, I do find the mental health part is better.

Hank Chambers (01:08:45):

Mental health is a huge problem and I'm glad you're doing that. That's also part of the project here in Ireland.

Audience Member (01:08:52):

And I don't think people talk about -

Hank Chambers (01:08:53):

No, they don't. Well, mainly because they don't know. You don't think about it, you

Audience Member (01:08:58):

Don't think about it.

Hank Chambers (01:09:01):

That's true. Yeah. But some of the people with cerebral palsy actually get manic as well, which is what bipolar disorder is. So that's a really high number. But to also get other -

Audience Member (01:09:13):

Is that down to the damage that's been done to the brain at their higher risk of

Hank Chambers (01:09:18):

Bipolarities

Audience Member (01:09:18):

Or is it just dealing with disability?

Hank Chambers (01:09:22):

Yeah. So depression, if it's due to having a disability, that's probably expected, but the mania isn't. So that's something that's due to the brain injury. Yeah. There's iron sense of schizophrenia, not as much as bipolar disorder though.

Audience Member (01:09:41):

When does that start? When does that

Hank Chambers (01:09:49):

Start? Usually in early, like middle teenage years, like 16. But then people don't notice it because they go, oh, that teenager just being a teenager being a jerk. And then when they find out that they're 30 and they have the same problems, you realize that's too late. So what's new in orthopedic surgery? There's a lot of different philosophies of treatment and we're trying to validate those. We're doing long-term outcome studies now. So particularly in Sweden and Australia, places where people don't move around as much as California, for example. We're doing these things called comparative effectiveness studies where we do some surgeries, other people do these different surgeries and we compare our results. It's not a randomized trial where we say you're going to get surgery and you're not going to get surgery and see how they do. So that's kind of the best studies we can do for this field.

(01:10:47):

And there's all kinds of new treatments like stem cells.

(01:10:52):

If we give kids stem cells, will that heal their brain? So far the results have not been very good for cerebral palsy. I know people are looking for a cure, but it's not here yet. And so it's possible, but it's not here yet. And I'm just going to go through some cartoons to end. I did this yesterday, but when you bring your child home, you have all these medical terms that you've never heard of, patent ductus arteriosus, necrotizing enterocolitis, prematurity, all these things that it's like, what is this? You're dealing with all these agencies. I've been trying to learn all the agencies that you have in Ireland is killing me. I've heard all these acronyms all the last couple days, but I'm sure we have the same in San Diego. And then your family, what's the impact on your family? You have other children, you have a spouse, what is that like?

(01:11:46):

And then you have a financial burden. So the state doesn't pay for everything. You have to get special, whatever that is, you have to get special equipment or a van or something that you never though you'd have to do. Then when you go into elementary school or grade school, if you're typically developing child would be playing football, would be doing other sports, running. What do you do for your child with cerebral palsy?

(01:12:20):

What about technology? Now when we started out, there were no computers, but now there's computers and iPads and all that kind of stuff that can really enrich some people's lives. Their virtual reality is going to really change things I think for kids with cerebral palsy. If they don't get too dizzy, when I put it on, sometimes I get dizzy, but those could be possible things. Mobility is how do you get, once again, getting from point A to point B. If you're in a city that has a really good public transportation, that'd be great. I hate to say it, having a wheelchair in this city looks horrible. I can't even imagine going through all these cobblestone streets and without curb cuts. There's not curb cuts in every place. You have to deal with education. You often have to fight with the school to make sure your child gets the best education.

(01:13:10):

And then having friends, for your typically developing child, you just send them out and they find friends and sometimes you have to be the one that facilitates friendships.

(01:13:22):

As they get older, they're young adults now and do they have a job? Can they take care of themselves? Can they advocate for themselves? Do you have to be the person that does that? Where are they going to live? Are they going to continue living with you till they're. I had an 87 year old mother bring her 67 year old son into my clinic, so she was taking care of him for 67 years. And so where's that person going to live? In the United States, and apparently you don't have that here, we have to do what's called conservatorship or guardianship. So when our children turn 18, we have to sue them to take their rights away. So I can't make medical decisions for my son unless I've sued him and I get conservatorship on that.

(01:14:09):

And it's a civil rights things. So you can't take people's rights away without going through a court. And so I tend to do his medical decisions, where he lives, how he spends his money, who he marries, and I always forget what the fifth one is. But I had to go before a judge. I had to pay for his lawyer to pay for my lawyer. And it's kind of a big deal in California and in the whole United States. And then you become an older adult and then we were just talking about how hard it is to get medical care. It's almost impossible everywhere. I'm not saying here's any better or any worse. It's just really hard to find. Your parents are now older and how are they going to take care of you and lift you? And then I have a lot of patients who have retired.

(01:14:57):

They had a job, they retired and that's where their friends were. All of their social network was at work and now they're 55 years old and they're lonely because they don't have friends. And so the fact that you're here and that we're all here and this is what we can do to help all of the children with cerebral palsy. And even though we just talked for a while about medical care, it's a really small part of this triangle. The rest of this stuff is what's important. This is all the participation, all the stuff in life and activities that we want to do. But if without the medical stuff, you may not be able to take advantage of all that. So thank you very much and be glad to take some more questions. I don't know if it went too long.