Leslie talks with his old friend Ellen Kiley about her history in yoga and bodywork as a person with scoliosis and spinal fusion.

Ellen has been a leading educator in the field of scoliosis and spinal fusion for many years. Ellen talks about how Leslie's invitation to attend the Symposium for Yoga Therapy and Research (SYTAR) inspired her to do her own research, which has led to her current work on a Masters in Public Health in Epidemiology, with a focus on scoliosis.

The full 2-hour video version of this interview, which includes Leslie and Ellen analyzing clinic footage of them teaching to a scoliosis student is available by subscription at The Breathing Project Community Hub.

YouTube video with Ellen: "Living Well After Scoliosis Surgery"

Ellen's archived blog: "Dancing with a Spine of Steel"

Speaker C: Yeah, well, my background, I don't know, I think it's sort of relevant to the question, but I had scoliosis and spinal fusion and I had been through the Jiva Mukti teacher training in 99, I guess. And I had been teaching for a little while, pretty often regularly, and someone had written an article for Yoga International about practicing and teaching with steel rods in my spine for scoliosis at that point. The Internet was brand new. There wasn't really even Internet, remember, but there was email, like, we had emails.

Speaker B: But I don't I was running my yoga list through AOL at that point.

Speaker B: Up in the Berkshires. Yeah, it was really fun reading that old email, too, because it brought back a lot of memories. And in a follow up email when we were going back and forth, you did remind me about how I influenced you in going to sitar to the symposium for Yoga Therapy and Research, which was pretty serious seed, apparently, considering where you're headed now with your life.

Speaker C: Would you like me to discuss that?

Speaker B: Yes, we will get to that. We will get to that. But just to fill in our audience, here just the Cliff Notes version of your sort of history and what brought you to yoga, considering the fact that you were diagnosed, I think, was 15 with Scoliosis. And just to put this in context with the other podcasts I've done so far, this is the third recording that I'm making. What's interesting for me, as I was thinking about it, is what you have in common with my previous two guests. And what an interesting distinction. What do you have in common with? Well, Libby Hindsley was my first interview, and she's coming out with a book called Yoga for Bendy People, which deals with issues of hypermobility. And so she got involved in yoga because of some issues she was having with her own body. She eventually ended up being trained as a physical therapist, and it was only after all of that that she was diagnosed with Eller's Dynos. Even after going through PT school, no one had figured it out right. So her diagnosis came fairly late in the process of her exposure to yoga and becoming a physical therapist. And then Robin Roffenberg was the second conversation I had. And she wrote a book called Restoring Prana, and she runs a very respected yoga therapy training program, and she'd been doing a lot of work with pranayama and breathing and very much in the sort of desiccatchar kind of lineage eventually, which is very breathcentered, as you know. But it was only fairly far on through that process that she was diagnosed with asthma and started exploring sort of alternative things like boutique go method and stuff like that, which sort of added a whole other dimension to working with the breath and she would have gotten just from the yoga background. So these are two people who sort of started with yoga, went into more therapeutic kinds of focus, but then were actually diagnosed fully with their own problems, which sort of influenced this whole process they went through. Now, in your case, your diagnosis came very early in life, as often happens with scoliosis, it spotted in those teenage years. And so you knew this about yourself, you knew this about your body, I think it was only a year after your diagnosis, you had your first surgery, as I recall. To me, that says something that is probably progressing pretty rapidly if you're getting that level of intervention that soon after having it spotted. And so maybe you can pick up your story there and just let our listeners know what your life was like past your teens having had the diagnosis and then the surgery.

Speaker C: Okay, so just a quick liberal correction. Not that, but I was diagnosed before that. I was diagnosed early, when I was like twelve or something.

Speaker B: I see. Okay.

Speaker C: It is relevant because the standard care treatment then was if it's below a certain degree and they measure the curvature of the spine with the protractor and lines and degrees below a certain degree, they say, well, we'll just watch it and we'll see if it gets worse. And if it doesn't yes. So then mine did get worse and they put me in a brace and gave me exercises to do in the brace, and I did all the exercises and it still got worse. And so I had this horrible surgery, 16 gruesome, terrible. It didn't work. In fact, it made me worse. I wasn't really in pain for the surgery, but they sort of frightened me into feeling that I should have it or probably because probably all these terrible things would happen to me if I didn't as I was older.

Speaker B: Right.

Speaker C: So I did it, and then I had a horrible pain after. It was a disaster.

Speaker B: Yes, I want to talk about that because you're not the only one that had that outcome from that particular procedure, which was very common back then. And we're talking about this is what they were calling Harrington Rods back then, because I learned of it as a flat back procedure, which I don't think they were calling it at that point where it was just you're getting hanged and run.

Speaker C: I think it's one of those retrospective exactly. Where they realized they made a mistake.

Speaker B: Yeah, we're going to get back to that. So you're having this in your late teens. You actually have more pain after the surgical procedure. And so did you have any kind of way of maintaining yourself, doing exercise?

Speaker C: I am, as you know, very much of a go getter, and I kind of believe I was very positive and not lazy, and I tried a lot of stuff. There wasn't back then, there wasn't pilates, really, but I did leg lifts and I just couldn't really stand without pain. Pretty much any exercise I did cause me more pain. The disc in there gradually deteriorated until it was just bone on bone between l five and my sacrum so it just gradually got worse and worse and I kept having to let go of things like I roller blade it all over and that seemed to help. And it had me on my feet less hours. I could get where I had to go quicker with that, so it was less pain. Really interesting. There was something about the balance, about the lifting through the core that I helped relieve some of the pressure of the weight on that because I would hurt afterwards. But I would rollerblade all like roller skates then.

Speaker B: Right. Four rules instead of the inline skates. Right. Just to back up a bit. Because I have a clear image in my mind because I've seen the imagery and I know about the procedure. But for our listeners, the mistake they were making with this well, there are a couple of mistakes. One is our cause that removed the lumbar curve. It flattened the curve of the lumbar spine, but also the rods that were doing that were not anchored to your sacrum. Right. And so the disc you described, the L five S, one disc would become hypermobilized because all the joints above it were immobilized and that was the only place you would get movement there. Plus, the fact that your lumbar curve had been flattened meant that your center of gravity was pitched forward and you had to keep from falling on your face. You had to actually, literally hike your spine in the posterior direction right at that one joint that was mobile. And no wonder the disc wore out and it got arthritic and you were in pain.

Speaker C: Yeah, that was a tough period when I was in college, and it was very tough, but happy ending. I got it all. I had a revision surgery, which was also pretty brutal, but it was all taken out and redone. And also that was from that point on, I really haven't had back pain since to move the problems to some other areas. But I stand up straight and I march proudly around the world and that's when I started yoga.

Speaker B: Yeah, I can't imagine you going through the intensity of something like a Jiva Mukti teacher training program with your body in the shape it was prior to the revision.

Speaker C: Yeah, I mean, I really had a hard time just standing and walking.

Speaker B: And by the way, for our listeners, we will show some imagery of the revision surgery in the premium section of this. This is in the second hour when you can view the video. And we'll be reviewing some work that Ellen and I did with the Scoliosis guest at our clinic eleven years ago. So that's in the second hour, which is available to premium subscribers. Anyway, that's my commercial. So the mid ninety S, you get the revision. And how did you discover yoga was Jiva motto, your first exposure to yoga?

Speaker C: Yeah, a friend of mine just was so passionate and you have to come, you have to come. And I mean, I was only like six months out of surgery, which for a surgery like that is not very long. And it was second Avenue. Second floor. Second Avenue. I couldn't do it much. I told the David, I'll sit in the back and just watch. And here's a mat. Sit on the mat, do what you want to do. I puddled around and did some stuff, and it felt pretty great. And then I went through the shavasana and the tears just started pouring out of my eyes. I was just like, oh, my God. The idea that I didn't have to try to fix myself for five minutes, I had never let go. I realized I'd been under so much stress for so long, just trying to get better, trying everything.

Speaker B: And the state your nervous system gets stuck in when you're always struggling with your body and gravity and all of that, it must have been just absolutely life changing.

Speaker C: It really was really absolutely life changing. It's not just the physical part either. It's just for adolescents going through Scoliosis. I had a brace in high school. I had a body cast for a year after in high school also. Yeah, that's when you're the most self conscious of your body image. And I didn't entertain that at the time. I wouldn't have admitted to it because I'm sort of mighty and powerful, Ellen. But looking back, I have that warrior sort of thing that doesn't like I look back on things and realize how hard they were, but I never really admitted, although I'm better now, that whole psychology, just that feeling of separation and alienation from the rest of your peers, and nobody really understanding. You're at a party and you're staying there and you're in excruciating pain and nobody else's, and conversation, it's alienating. So I had a lot of work to just regrouping to do of my.

Speaker B: Brain, and it was really about just helping yourself be a different way in the world and in your body and in your nervous system. And those are all the positive, wonderful, amazing things, kinds of things that get us hooked on yoga. And now, looking back, and I'm just going to quote you here from one of the paragraphs that we've exchanged, is the dangers of yoga for Scoliosis abound as well. Can you say a little bit about what you learned in that direction over the years?

Speaker C: Okay, definitely. So I guess it's important to distinguish when we talk about Scoliosis between people with rods infusions and people who just have Scoliosis without rods and fusions, because as a therapist, you would treat them very differently. So I'll just address the issue I was referring in that email is that having these long steel rods in my spine, which, to be clear now, I'm fused from my sacrum all the way to T seven or T eight. But I have also itself fused above that so virtually, I'm fused from the top of my shoulder blades down to my sacrum for me, going through jiva muktio, which is very kind of a stronger based sort of very there's not a lot of well, maybe don't go to your limit or back off from the edges. It's always sort of the opposite of that. Yeah, let's see if we can stand on you and get you in there a little deeper. And so, on the one hand, there was a lot of release for me in that practice because it was so deep. I was able to release I mean, I had so much scar tissue in my back that it was unbelievable. And I had also enormous emotional releases from doing that. But I did over stretch my hips and overstretching muscles and tendons creates tendencies for weakness. It becomes more difficult over time to strengthen those areas. And having weak hips and glutes is just really not a great thing for anybody.

Speaker B: And by the way, what you're describing is almost exactly the kind of problem that people without rods would have if they practice following certain alignment imperatives that are not that functional for them. Like, always holding your spine an axial extension and working in these sort of extreme poses with wide stances where you're getting all of the movement into the position from your pelvis. Right. Because when you're immobilizing your spinal joints, you're over immobilizing the hip joints. And so yours is, of course, an extreme example where you literally have a fused spine. But it would be easy for someone who didn't know that about you to see you practicing and go, oh, what a beautiful practice. Look how aligned her spine is. We've talked about this. When you go up and fold forward and the forward bend, it looks like, oh, look at that. Her spine is so long, and she's getting such a nice fold forward at her hip joints. And that's literally how that movement is cued for people without rods.

Speaker C: Yeah. So really, I have overstretched my hips and also my neck. I overdid a lot of shoulder stands and pulled up into extreme versions of it. I don't know that really anybody really teaches that way anymore. It was a long time ago. People are more medically aware now.

Speaker B: I'm more sophisticated, for sure. Well, so many of the people that were teaching that way have themselves become injured and have their hips.

Speaker C: We all got older and learned from our but that's good news that yoga really evolved in the time that we've been practicing and teaching.

Speaker B: It sure has. And approaches the scoliosis have evolved. And that's another thing that you were mentioning in our correspondence just now. The viewpoint in the physical therapy profession, for example, has evolved quite a bit. And the perspective of maybe wait and see in watch has been replaced by wealth. Let's do some early intervention and see if we can keep this from progressing or avoid some of the more extreme treatments. And before I forget, I want to share with you, and I think I may have mentioned this to you in the past, a really important distinction that you helped me make. And it was in one of your early visits, maybe even the first one, because you presented a few times to my group of students at the reading project over the years about this material. I no longer say, and this is due to you, oh, I have a little bit of scoliosis because I've had X rays in my spine from way back, and I have an asymmetry in a rotation and this and that. And I used to describe that as I have a little bit of scoliosis. And you heard me say that in front of the group, and you jumped on me. Right.

Speaker C: Well, I think that I've seen that word get tossed around. I've used a lot by various groups, professional groups, and we don't have to dis anybody. But I don't want to mislead. There's a very big difference between and yes, the cutoff. There's a cut off. So it's 22 degrees at one point. It was 21 degrees at one point.

Speaker B: So where the cut off is, I've heard 25.

Speaker C: Yeah. This is statistics. When they do the cut off one way, and you get more lower, you get more people in it, and you cut the other way and you get fewer people in it. So they're trying to kind of balance out. At what point are you getting the greatest benefit?

Speaker B: Well, you get the actual clinical diagnostics.

Speaker C: And at what point are you just scaring people and taking their money for things they don't need? It also makes it just really hard to study from a scientific point of view if you have ten different doctors diagnosing it ten different ways. So they now have a standard, internationally agreed upon definition and cut off so that you can take studies on different parts of the globe and compare them and do a metaanalysis or something.

Speaker B: Right. And you're becoming an expert in this because you are currently pursuing a master's in public health in epidemiology, which is the science, of course, that studies this exact thing that you're talking about. And I think that's amazing to be able to bring that kind of training and perspective back to a field like ours. Because to go back to the Citar thing, when you first saw people presenting research about yoga and the benefits of yoga, that's amazing and wonderful. And for someone who's trained in epidemiology, if you actually dig in and read a lot of those research studies, most of them aren't very good because there's really small sample sizes, there's very poor design, and they're very easy to pick apart by someone with any kind of knowledge of how to read a study.

Speaker C: Right, yeah.

Speaker B: And so hopefully you can bring the kind of expertise that you're getting now in this masters back to people who really want to do a good job of studying this kind of thing and produce respectable research, which would be awesome.

Speaker C: Yeah, I hope to be able to legitimize the city of Yoga in some way a bit and just be part of that team of people that does that. There's already some good stuff. It's like I've got that rebel in me. We have that in common a little bit. I really find that I majored in as an undergrad in history of science, and it's always bothered me just how biased inherently they call it evidence based medicine, and it's all the science, and now it's all the rage. But it's very much in fashion right now. But the whole system is biased towards industries that financially can't afford the studies, because what makes the study what makes the study considered legitimate? They have sample size. You got to get people to show up research, you got to pay people. You got to get them to show up long term. If it's just a six week study, how are you going to say what it does for scoliosis? Because they might feel better after six weeks, but after six months, they're back where they were. So you got to pay people, a bunch of people over a long period of time, and the pharmaceutical industry can afford that.

Speaker B: Well, that's the built in products.

Speaker C: The surgery device industry can afford that.

Speaker B: And if you change the definition of something like scoliosis by just one degree less, that translates into potentially billions of more dollars of profit for the people funding the studies.

Speaker C: It's complicated. Yes, it's your fault. I went to that sidecar conference and I saw those people up there, and I thought, someday I want to do this. And it took a while, it took 20 years, but here I am.

Speaker B: Well, yeah, but I'm thinking of what a deflection of your life path this whole exposure to the therapeutic side of yoga was, and going to sitar, coming to the breathing project. And then, of course, what we haven't mentioned is the training that you got in body work and anatomy trains. You did the whole Tom Myers course of study at one point, and I think, didn't you meet Tom at the breeding project when we brought him in?

Speaker C: I saw him here, but I didn't meet him here.

Speaker B: Oh, of course. You were in Maine at that point.

Speaker C: Yeah. To other people, it looks like I keep switching careers, but to me, it's all one path and it's all the same, just a different angle of looking at things.

Speaker B: Even the beekeeping is part of it.

Speaker C: Well, no, but you could call that healthy, I guess. Public health. It was a farmer. But no, that was just I married it.

Speaker B: You married into the beach. I had forgotten there for a moment that you were actually a neighbor of Tom's in Maine way back. Cool.

Speaker C: I'd like to learn more anatomy. Actually, as a yoga teacher, I wanted desperately to understand. I was having all these scoliosis clients or patients and doing these workshops, and I was way over my head. I mean, way over my head. Some of these people are very unwell, and I wasn't trained in how to touch them. I didn't want to give anybody a yoga assist with that kind of right. And I didn't know what was under my hands. And so there was no Leslie Cameron of yoga anatomy course then, to learn anatomy. That was the only place I could go, really, because it was nearby.

Speaker B: Yeah, we hadn't even come out with the book. Well, we came out with the book in seven, so it was a couple of years after I met you that we actually I was in the middle of writing the book, I believe, when we first met, which was a whole other challenge, figuring out how to analyze something like Asana from an anatomical perspective. Thank goodness for Amy with all the letters after her name, which I don't have. So you're currently in the midst of this Masters in Public Health. So where are you in terms of your course of study?

Speaker C: I have just a few more classes to go. I have advanced Biostatistics Two and advanced Fe, too, and I have it's called One Thing Left, which is like a culminating project, which you do as a group, where you do an actual study. I had an internship, which I finished, and I did an actual study. So I'm getting to the point now where I can really analyze data. We had to learn how to do it on a computer program that runs different statistical tests, and you can link it to a spreadsheet, a large spreadsheet, so it's kind of cool. Who knew I would be able to do it? I went into it not really knowing if I was going to be any good at it.

Speaker B: You mean exercising that sort of analytical side of your brain?

Speaker C: Seriously. And I'm 58 years old.

Speaker B: Are you the oldest one in your class?

Speaker C: Yeah, I mean, I'm older than my teachers, for sure, but not in spirit, I guess. But now I got this great advice from actually a nurse working in a doctor's office at the time, and I was saying to this, I really want to go back to school. She was like, do it, do it. And I'm like, yeah, but I'll be 60 by the time I get out, and that's so ridiculous. And she's like, well, you're going to be 60 anyway, you might as well. I was like, yeah, she's right.

Speaker B: That is awesome.

Speaker C: I'm so glad I did. It's been so gosh, it's really helpful.

Speaker B: This isn't even like a second or even a third act for you. How many acts have there been at this point?

Speaker C: Well, I don't know. I get a little defensive about the different like I said, to me, I feel very single, pointed. It doesn't feel like a different path.

Speaker B: It's all the same act, different skills.

Speaker C: But it's all coming from a place of inquiry and curiosity about health and how to help people serve people to be their best. Starting with an inquiry into my own self, how can I be my best? And then taking it to how can I help others be their best, and what do I need to learn to take that to the next level? And I was also planning a few. I thought I liked the idea that I could do it remotely.

Speaker B: Yeah, absolutely.

Speaker C: And I can plan it's sort of my body. So standing up and doing body work all day was getting harder, and I thought maybe I should come up with a long term, realistic plan for making a living.

Speaker B: So this Masters has been entirely remote, or have you actually been to volume?

Speaker C: No, but I meant, like, the work itself at the data analysis. And most of the actual jobs I can do somewhat remotely, if not totally.

Speaker B: Because the medical school is in Valhalla, right?

Speaker C: Yeah. New York Medical College.

Speaker B: Yeah. Well, I only know Valhalla from the train when I would always go up to the Berkshires. When I'm passing by the cemetery, I know I'm in Valhalla. Got that huge cemetery right by that.

Speaker C: Yeah, it's nice to go remote, actually.

Speaker B: When you made the transition in perspective from the yoga just for your own self and your own healing, to thinking, wow, I can take this focus and this interest and skills that I have to helping people. Was the article you wrote for Yoga International kind of a turning point when you got such a huge response from it? Was that sort of a turning point?

Speaker C: That's when I knew that I wanted to learn more about how to help those people. I knew that I wasn't really super qualified to be able to. I was scared, but I jumped right in. Actually. I didn't know. And that was a turning point. That article. The Tom Myers thing was another turning point. Finding him and using my hands and having no intention of becoming a massage therapist, purely doing it to learn more about anatomy and then just getting all this feedback that I was good with my hands.

Speaker B: Tom doesn't train people to be a massage therapist per se. He has a method.

Speaker C: You had to already have a massage degree, a license to go there. But I talked him into letting me in and promised I wouldn't work on people.

Speaker B: But then, yeah, you kind of got an exemption, as I recall.

Speaker C: Yeah, I got an exemption, and I actually got offered a full time job with benefits if I would do the license and do both. And that was the sell. I was like, oh, okay, I could use health insurance. So I got the license and the license and then got the full. Time, took the full time job. I got to teach yoga all morning and water aerobics and work in the training studio, the gym. And then I did a massage all afternoon. I did it up for 15 years.

Speaker B: That doesn't sound like a bad deal. Now, that was when you were down south, wasn't it?

Speaker C: Yeah.

Speaker B: Because you lived for a while in Georgia.

Speaker C: Yeah, south Georgia.

Speaker C: Yes. And there's actually one more criterion that goes into the diagnosis, which is whether or not the bones are still growing, like where they are in the bone growth. And that's a harder thing to measure. It's a more expensive thing to measure, and it's not often always done, but they go by age when they don't have the device. If you're still growing and you're at 20 degrees, they're nervous. So, in other words, that cut off. The way they decide that cut off is based on statistics of your likelihood to progress. So they take a large, large number of people and they see how many of them progress to severe Scoliosis at the various age, diagnoses and curvature diagnosis. And so at 22 degrees, at the time where your bones stopped growing, you're not very likely to you could just stay there. You may be fine. You're statistically probably to be fine or whatever, however that you decided. But after 23 degrees, it's highly likely that you will continue to progress at a rate of one degree a year, which means that by the time you're 45, you're in a wheelchair.

Speaker B: Yeah.

Speaker C: Well, you would have a problem. And the older people get, the harder it is for them to correct it either surgically or through exercise, embracing any, the harder it is to correct any at all.

Speaker B: Right, but there's an inherent problem. Well, it's not a problem. It's just a built in issue with making clinical decisions based on epidemiological data is that it is predictive for large groups of people, but not for any one specific person, because you can be the exception to the rule, so to speak. And you can never know, for example, like, I talked to people that have gone through bracing, and I have one friend who swears that the bracing actually helped her avoid more serious interventions when she was young and that it was absolutely the right thing to do. And then in your case, of course, they tried the bracing, and it didn't work. But there's no way to tell what that individual's life would have looked like had they done or not done a particular therapy, because it's a single case. Right.

Speaker C: Yeah. This is a very hard thing to study. That's why they use statistics, because you can't know what would have happened to her if she hadn't had the brace.

Speaker B: Exactly. She may have ended up exactly as she is now without going through all the torture of being in a brace, because the scoliosis may have stopped progressing all on its own. And that's the tricky thing.

Speaker C: Right. So it's like the rate that races, you got to take a whole bunch of numbers and whittle it down to the odds. What are your odds of having progression being on a certain degree?

Speaker B: Every so often, an 80 to one odd comes in, like in the Kentucky Derby deal.

Speaker C: Right. Then they have an easier decision to make, hard decision for people. So if you're a yoga therapist and you ever had a person who was in that situation who had been diagnosed in kind of a gray area, that 25 deg area, I got goosebumps just even thinking about that, because that is a fraught, difficult decision. And I think that as a yoga therapist, this is one of the things you don't get with a physical therapist, is you don't get the kind of integrated approach to a yoga teacher can be very aware and sensitive to the psychological part aspect of that decision, which is very difficult for parents. The mothers are beside themselves.

Speaker A: Sure.

Speaker B: And a surprising number of people that I run into who have been diagnosed with Scoliosis do not know their cob number. They've never been told. I'm so accustomed to having these discussions with you. You're probably one of the better informed people, I would say I would venture to guess on this topic in terms of your own personal situation and the field in general and I just would expect someone that had that diagnosis to have as much information as they possibly could about it and that is absolutely not the case. People don't even know what a cob.

Speaker C: Angle is many times let me just say this and it speaks to the psychological aspect of this disease which is significant. They may have been told and it may have been explained to them, but there may have been so much anxiety and that person when they were at the doctor and they were getting so much information thrown at them so fast that it's actually just too much for people to take in. They've just been told that they might have to have surgery. I mean those doctors are not famous for taking their time and giving you a moment to digest what you just heard. They might remember one or two of the things that chances are they're going to remember like. Well. You might need a brace or surgery and then from that point yeah.

Speaker B: Well. That's a good point but still because when someone tells me. Okay. I was diagnosed when I was 14 or 15 or whatever and I'll typically ask do you remember them telling you if you had a number at that point or degree of scoliosis or how severe it was and all of that? And more often than not they don't have that information available, then we just look and you can kind of see. So let's talk for a minute about just because your typical yoga teacher. Yoga therapist probably has a fairly good eye for spotting the more obvious asymmetries that show up in someone's body when they're doing some of the things we ask people to do in class. Right. So let's talk for a minute about just what is obvious to let's say. A fairly trained eye in terms of spotting someone with scoliosis and what would be useful to say or to not say in a certain situation. For example, in a group class we'll talk about one on one stuff in a little while, but what about that situation, that scenario? There you go. Okay.

Speaker C: Well, you would see what should you say? Yeah, that's tricky. So you'll see somebody with shoulders of uneven height, you'll see the waist is this what you want? Like a typical question what the person looks like or you want to know more? Like how you handle it when you.

Speaker B: See these obvious well, let's just say we've made the observation there's clearly a marked asymmetry showing up in someone's body as someone who has both been a person with scoliosis but rods, which is, as you said, a different situation and in teaching. So from both sides of the equation as the student and as the teacher, what have you learned over the years? Are either the useful things to say or the things to avoid saying in that situation.

Speaker C: Well, I wouldn't say anything in a class situation, obviously. I want to point out someone's, like, if it looks extreme, there's nothing wrong with asking someone to, well, can you draw your right shoulder down or can you level your hips? Because self correction is really the goal for all of us, including people with scoliosis, but improving alignment. But I certainly wouldn't make them feel comfortable, self conscious or anxious or just try to be chill about it basically common sense. And then I would probably make a little extra attention to just let them know that, make sure that if there's something that we can do to modify, I would keep an extra eye on them. I would make sure they're not over, that they're just not overly enthusiastic at first and taking their time to learn the practice, I guess, and see what works and what doesn't.

Speaker B: Yeah, well, sorry to put you on the spot there, but I had a particular reason to ask that question. And it goes back to what was behind the comment I made about, oh, I have a little bit of scoliosis. Everybody has a little bit of scoliosis, which I don't say anymore.

Speaker C: You wouldn't want to say that.

Speaker B: No, I don't. And what I'm really getting at is human bodies are asymmetrical, inherently. So everyone's got some kind of lateral rotational sacral asymmetry going on in their bodies, if for no other reason than our organs are not placed symmetrically, our diaphragm is not symmetrical, we're not ambidextrous. We have just two sides to us. And as part of an inquiry based process, when I'm teaching, one of the things that I'm trying to help everybody get in touch with is, what am I noticing along those lines, right? And without it turning to a clinical situation of, oh, my eye is telling me that this person's asymmetry is beyond 20 something degrees, which obviously I'm not communicating to them or anyone else in a group situation. It's like, what can we notice about our asymmetries in such a way that we can understand what amplifies the asymmetries we have and what neutralizes them? Because for me, that's an important conversation for everybody. It's that much more critical for someone with a clinical diagnosis of scoliosis. But for everybody. Knowing where to find comfort and ease. Which is an arrangement of your body that sort of neutralizes erasymetries and lets you come to a restful place. But then finding the opposite and knowing what that is so that you can challenge your asymmetries and work the muscles that are weak. That get underworked. Or release the muscles that get condensed. Short. Stretch the muscles that are chronically shortened. Or work the muscles that are chronically weakened. That sort of thing needs to be done as well as part of just maintaining a pain free body. A pain free asymmetrical body. So that's kind of the direction that question was headed. And even without knowing these numbers or having a clinical diagnosis by an expert, if you wanted to give sort of an experiential definition of scoliosis, it might be something like when the asymmetries in your spine are significant enough to cause suffering or pain on a chronic basis, and that's when some more serious action or attention may be needed. For some people, that would be well below 20. There's some people that maybe are past 22, 23, whatever, who don't have symptoms at all and aren't in pain. It's very individual, I've noticed.

Speaker C: Yeah. You raised an interesting point. I never actually really thought about defining it that experientially. I could see why I've often thought, if I were going to do it over again, given that I had no pain when I had that horrible, would I do it again? And the answer is definitely not. If someone asked me if pay more criteria for I was 16, I didn't know what to do. But yeah, it's ridiculous. Why would you want to have that surgery if you're not in pain?

Speaker B: Sure. Well, that goes back to what we said about epidemiology and studies and who's paying for them and who's going to profit from the way things are defined. That's an interesting thing to think of when designing the study, because when you develop, say, an inventory, like a self inventory that people are filling out, and when they're becoming part of the study, that kind of has to be part of it. Like, what is your experience in your body?

Speaker C: Well, that's actually much more common now. Medicine has improved greatly since it's called HRQoL, health related Quality of life. And that is a factor now in all these decisions. But that was a long time ago, right.

Speaker B: So, yeah. Before we go into the second part, where we actually go and look at some of this video, the premium part of the podcast, because your life and experience does cover a whole era in this field, if you think about it.

Speaker C: Yeah.

Speaker B: So just looking back now from where you're sitting on the verge of getting your masters in studying this phenomenon all the way back to when you were first diagnosed, how would you describe the major advances in perspective diagnosis, treatment of scoliosis since in that time frame that your life encompasses?

Speaker C: Oh, it's very positive. This is one reason I was excited to go back to school, is that I have access to a whole medical library now. And I'm sorry, but I don't know how to turn off these things now.

Speaker B: That's okay. That's just life happening.

Speaker C: It's already rolling.

Speaker B: I was used to life happening during Zoom.

Speaker C: I have access now to an entire medical library and just the number of journals that are available, the amount of research being done now, it's just there's 46 pediatric etsma journals to choose from. There's just enormous amount of data out there, and you can access it all from one med school library, and it's from all over the world. And there are now for Scoliosis, there are now internationally I mentioned this internationally agreed upon methods and diagnosis and definitions. So I can maybe there's a study size of 14 in this study, and there's a study size of 25 in this study. And they're small studies, but when you get together and you do an overall analysis, they didn't used to be comparable before, but now you can frequently look at them all in a law and say, well, now we've got all these that are because they're being done in the same way, we can draw a more significant conclusion.

Speaker B: Well, you're comparing apples to apples, so to speak.

Speaker C: Exactly. You always have a better way of saying thank you.

Speaker B: Without an agreed upon international standard. Then all you've got is a bunch of things that aren't using the same standard for their protocols and small sample sizes. And then you can't draw conclusions epidemiologically by treating them as a large group that has a single definition.

Speaker C: I'll keep on this topic because this is a fascinating topic to me. The things that are better now and different is that one and the international cooperation is also very helpful for us here in America because the Europeans were very early on very much focused on non surgical treatments. So they are leading the way all across Europe. There's Spain, France, Germany, Italy. They have research hospitals devoted to Scoliosis exercise therapy. Because information is now so much circulated and shared, we are able to benefit. And so now the international guidelines of the Scoliosis Research Society, which is the American Surgical Association, but they are also the ones that are sort of in charge of deciding what are the treatment protocols. Like, if a kid comes to you, how do you decide what you should recommend? And the standard protocol now is for something called Foliosispecific exercise to occur before bracing, during bracing. And they really make they're supposed to how many people, how many physical therapists are trained in scoliosis specific exercises? I'm unsure of that number, but they could certainly access scoliosis specific exercises easily enough on YouTube.

Speaker B: I'm hearing something different here from what I understood about bracing, which is that you keep it on for as long as you can, and you hardly ever take it off. I'm assuming that if you're doing exercising during bracing, you're taking the brace off to do the exercise.

Speaker C: You can do both ways. You can have exercises you do with the brace on, and you can have exercises that you do with the brace off. But yeah, no, they'll let you take it off to do exercises.

Speaker B: Okay.

Speaker C: Typically involve much of the stuff. When I started PT, they just didn't help me. It made me worse. Really? It hurt and didn't help. And they were just the same exercises you get for a bad back, like leg lifts and bridges. Okay, but it didn't stop my scoliosis from progressing in the brace like I did those exercises in the brace. Now, first of all, they open up and mobilize the rib cage, which can be really badly compressed. And so this is part of Scoliosis specific exercises. They have a common definition which includes mobilization, and it's mobilization of reps vertebra people. Depending on how long they've had this condition, things can be very stuck that way, and exercises will just reinforce it and make it stronger, whereas you really need to kind of create some mobility, loosen up the pattern, create some traction, and then maintain the strength to stabilize. They call them stabilization exercises. So there's different ways to do traction and there's different ways to do stabilization, and there's different ways to do mobilization. But the fact that there are agreed upon principles and shared techniques is really good. And it started with the Strath method, and there's like the Leon method in France, and there's all these different ones, and they're studying now. Now, your point about patients being more involved in the decision, and that when you were saying about the problem with studying, making decisions statistically is you're not really taking into account the individual well, also just the individual preferences and motivation of a patient. So one person is going to be like, I don't want to do exercises, just give me the surgery. I'm not going to forget that I'm busy. And the other patient is going to be like, I would rather do anything than have surgery, and therefore I will exercise however many hours a day you tell me to exercise. So now we have more tailored options to the person's personality and motivation. And so that's a huge improvement.

Speaker B: Yeah, I mean, to me that's common sense, but sometimes introducing common sense in real conversation is a huge improvement over.

Speaker A: What we talked about before.

Speaker C: I think individual doctors, you have a doctor that has common sense, and they'll include that in their recommendations. But as far as the whole field overall, clover Global, this is what the Scoliosis Society recommends for physicians. Then you get a certain to print it out.

Speaker B: Cool. Well, before we make the transition to the second half, here one final question to wrap up this section of the conversation, which is the big question for me in the last few decades. Are the researchers any closer to understanding the actual cause of Idiopathic scoliosis?

Speaker C: I would say yes and no. So they have much more detailed information about it's agreed upon, that it's a multi modal causality, meaning that there are many different statistical significance shown for many different potential causal factors. So there's a hormonal component. There's the hormonal people, there's the biomechanical people who are like, no, it's all about is the vertebrae. Are they born with a genetic code for a wedge vertebrae development? And it's the wedge, it's the vertebrae shaped like wedges that cause the whole thing. And there is evidence of this. There are people that are just develop wedge shaped vertebrates, so I think that there's probably a variety of different types of scoliosis and you could get it from and there's biochemical explanations, there's mechanical explanations, there's neurological explanations, and they all have some I think it's pretty interesting stuff. It's also really hard to understand when you truly get in and try to read it. It's sort of like, yeah, you're getting into genes and you're getting into neurochemistry, which I got the big picture is that there's a lot of different factors.

Speaker B: Involved in it all and it's still overwhelmingly a female diagnosis. What percentage?

Speaker C: 80%, roughly.

Speaker B: That's massive.

Speaker C: Yeah.

Speaker B: Okay, well, so now for those of you who have been listening that want to have access to the next part of the conversation in which we'll be presenting some visual information in the form of a video that we made eleven years ago with the Breathing Project. You can find how to access that through a very reasonably priced monthly subscription@breathingproject.com.

Speaker A: Well, I hope you enjoyed that as much as I did. I always learned something when I talk to Ellen, especially now that she's getting more deeply involved in the research side of her topic. So don't forget, once again to check out the rest of our interview in which we analyze the video we made back in the day at the Breeding Project Clinic. The full video of our chat, plus the analysis of the teaching video is all available@breathingproject.com. You can check it out with no obligation. First month is free, so give it a try. And if you have any ongoing questions or comments, you can always ask them through that platform on the comment page we have for each video. So looks forward to seeing you there.

Speaker B: Thanks for joining us.