CLEAR Scoliosis Institute board member Dr. Alex Greaux and Ashley Brewer discuss the tough topic of neuromuscular scoliosis (NMS) during episode 10 of Life Beyond the Curve. In his 15 plus years of chiropractic and 13 years of scoliosis-specific chiropractic care, Dr. Alex has seen many patients with neuromuscular scoliosis.
Throughout episode 10 Dr. Alex and Ashley discuss:
Neuromuscular scoliosis is one of the most complicated spinal conditions a patient can have. We hope you'll tune in to episode 10 to hear Dr. Alex share what makes it complicated, the importance of a patient-centered approach to treatment, and questions to ask a doctor you are considering going to for NMS treatment.
If you have questions for Dr. Alex about NMS, please leave a comment below. We are also always looking for topics or suggestions on what you would like to hear in future episodes.
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Hello, everybody. I'm Ashley Brewer, the Executive Director of CLEAR Scoliosis Institute and your host of Life Beyond the Curve, a podcast designed to provide essential support to people living with scoliosis. During episode 10, I covered the tough topic of neuromuscular scoliosis in a conversation with one of our CLEAR board members, Dr. Alex from Miami, Florida. Now I say that this is a tough topic because along with having a diagnosis of scoliosis, with neuromuscular scoliosis, there's another diagnosis of an underlying condition. And sometimes those conditions don't have the best prognosis. Um, throughout my discussion with Dr. Alex, it just became super clear to me that with his 15 years of experience, not only does he have the expertise to treat scoliosis, but he's just able to connect with his patients in a very special and valuable way. Um, in addition to being a chiropractor, Dr. Alex holds a degree in physical therapy from the University of Miami. He's been certified to treat scoliosis since 2007 and completed his CLEAR Intensive certification in 2013. While this conversation was a tough one, I know you'll enjoy hearing Dr. Alex's passion come through. Episode 10, here we go!
You're listening to Life Beyond the Curve, a podcast brought to you by CLEAR Scoliosis Institute. Each week, we interview experts in the industry, answer your pressing questions, and empower you to take control of your scoliosis diagnosis and live life to its fullest. Enjoy the show.
Hey, Dr. Alex, thank you so much for joining me today on Life Beyond the Curve. I'm super excited to have you.
I'm really happy to be here, thanks for having me, first of all. I appreciate the opportunity to share some of this information with people.
Before we jump into our topic for today of neuromuscular scoliosis, let's first talk about just your traditional scoliosis diagnosis.
Okay. So scoliosis in itself is a, is a, is probably one of the, not one of the, is the most complex spinal condition that's out there. Uh, so, uh, usually when people first get diagnosed with scoliosis or first hear about scoliosis, they start to, uh, get really nervous because they've probably never heard of it, number one. And then when they do hear about it, the first thing they do is they go to Google and they read all the, I don't want to use misinformation, but all the information on there, right. Everybody likes to do Dr. Google, and that's one of the worst things you can do. So, uh, initially I think the most common cause of scoliosis, or I'm sorry, the most common diagnosis for scoliosis is called, uh, adolescent idiopathic scoliosis, right? That is the case where it is diagnosed, uh, in, uh, early teenager where it's, uh, 11 to 14 years old, typically.
And back in the day when I was a kid, I'm not that old, but when I was a kid, you do have PE class and in PE class, uh, you would bend over and somebody would look at you with your shirt off and they would look at your spine. And if it bend a little bit to the side and say, Hey, you need to get checked out. So that was primarily done, I want to say, in the eighties and nineties. Currently, I know locally, um, I'm in Florida and I know locally that is not done anymore in public schools. Uh, it actually used to be done by the Easter Seals, and, uh, what happened was they started to find out that that test, which is an orthopedic test called Adam's test, and an Adam's test, if you put both your hands together and you bend forward, uh, you're looking at the person's spine, there shouldn't be any deviations of the spine.
So that tests started to become, uh, known as, or joked about as the "too late" test, meaning if you already see the spine curving at that point, it was too late, uh, too late, meaning it's already there. It's a difficult thing to deal with at that point, and it was really inaccurate. So as of late, the schools that have now adopted a more progressive, uh, approach, or they're more into the research that's available, they use what's called a scoliometer, which is basically like a level and some of the schools now have their own school nurses. And some of them are trained in this. In the state of Florida, I provided a bunch of schools with this and train the nurses so that they would know how to do this, but it's essentially a level that gets put on the spine, and you're balancing, um, to see if you have a balanced posture or if it's higher on one side or the other, which is a very detailed way to measure scoliosis.
So that's the most common, is adolescent idiopathic scoliosis. Currently we have many theories behind what causes it. Um, they thought there was genetic predisposition to it, then they weren't really sure. Uh, so it bounces around and depending what research you find, uh, there is some kind of genetic connection to it. And what they say is when it's placed in the right environment, it can come out. Meaning if you have scoliosis and let's say you have four kids, it doesn't necessarily mean that they're going to have it, but, uh, I would encourage you to be aware of that and just check your kids young and regularly. And the easiest thing we've talked about this in the past, look for balanced shoulders, look for uneven hips. A quick posture check is something that you should do or find a CLEAR-certified doctor that knows how to do it. It's a great evaluation tool. Um, I think, what is Scoliosis Awareness Month? Is it June or July or something like that?
June. June is Scoliosis Awareness Month. Yeah. We always do a big campaign in June to just get awareness out there.
Yeah. So that's a big one, right? In the month of June, you see a lot of awareness campaigns for it. And it's really simple. Just look at the kids' shoulders, catch it earlier because the earlier you catch it, the more things that can be done, we always say all large curves have one thing in common. They started off as small curves, right? So the earlier you catch it, the better the prognosis, the better choices you have and the better you get to the better, the ability to find a doctor, who's able to manage these conditions better. Now we have what we're here to talk about today is neuromuscular scoliosis. And, um, this happens to be, in my opinion, the most complex condition that you can get. Uh, and I have had the fortunate or unfortunate circumstance of dealing with these and, and managing these. And, um, they're very difficult to deal with.
So, uh, the first is what is neuromuscular scoliosis. And I'm going to read this from a previous interview that I did because I really liked this. Uh, but neuromuscular scoliosis is a type of scoliosis that occurs in individuals with conditions that affect the muscles and or connective tissues that support the spine. It is the second most common spinal deformity, with idiopathic scoliosis being the most common, which is what we were talking about before. Now, this diagnosis is usually the most complex. And what happens is there is a disconnect between how the brain communicates with the nervous system. Okay. So they are typically linked to a couple of different diagnoses. So I'm going to go through these one by one, because it's really important to recognize that, uh, this is, you know, they're, they're in combination with each other. So, uh, number one, cerebral palsy is found, uh, 25% of the time that you have scoliosis with this. Then you have myelodysplasia, uh, which is 60% of the time you have an incidence of scoliosis.
Then you have spinal muscle atrophy. And the statistic on that one is 67%. Um, then we have Friedrich's ataxia, which is 80%; cerebral palsy, 80%; Duchenne, muscular dystrophy, 90%. And then we've got two myelodysplasia at the thoracic level and traumatic paralysis under 10 years old is a hundred percent. So the question is, why do these happen? If we understand the way that the body works, the brain controls the whole body through the nervous system. It is a connection between the brain and every single tissue organ in the body. It is protected by the spinal cord and the spinal cord sits inside the spine and travels through the spine and then passes out to the muscles, uh, and organs. So, uh, again, part of the reason why chiropractic works so well is we have direct connection with the nervous system. Now, if for some reason, uh, any one of these previous diagnosis is that patient has, there is a disconnect between how the brain sends the signals to those nerves.
So the nerves are not firing properly and the muscles then aren't firing properly as a result. Um, I think that most of these kids, um, if they're ambulatory, which some of them are not, but if they're ambulatory, um, we look to see again, back to that, um, initial, how do we catch the scoliosis? It's the uneven shoulders, it's the uneven waist, um, the flaring of the shoulder blade, which is that scapula in the back, usually on the right side, uh, again, one hip would be higher and then obviously you start to visibly see that curve. So--
Can you explain for somebody who might be listening ambulatory versus non-ambulatory quick?
Sure. So ambulatory means you can walk, meaning you're able to walk, you're able to move around on your own. Um, now, ambulatory still could be somebody who has a walker, that would be assisted. Uh, but a lot of these are sometimes just in a wheelchair, right. And you would sit there and think, okay, it's because of gravity pushing down, uh, the wheelchair, the sitting, but it's, again, it goes back to the fact that the brain can't communicate with the body and tell it, Hey, sit up straight, Hey, stand up straight. Uh, and these are really tough.
Yeah. So you're talking about not only a diagnosis of scoliosis, which in and of itself can be difficult for a patient to handle or understand or a parent to handle or understand, but you're also talking about, they've also received another diagnosis of another underlying condition, and some of those underlying conditions have a poor prognosis altogether. I actually had a son who passed away from one of the conditions you listed, spinal muscular atrophy. And he never got to the point of being diagnosed with scoliosis because he only lived until 10 months old. But remembering that mindset of receiving that diagnosis and being told that my son likely would not make it past his second birthday. Oh my gosh. Like just as a parent, it throws you in a complete and utter tailspin, just, you know, before you're thinking about going to prom and what they're going to be when they grow up.
And then all of a sudden you're like, Whoa, two years old might not make it to that point. And that's not every underlying condition that you listed off, but some of them have a poor prognosis. And so how do you, as a provider, help navigate this whole process of working with the scoliosis and taking their underlying condition into very, it has to be the most important consideration when treating the scoliosis and just the emotional aspect, the level set on expectations, because I would assume that expectations change dramatically when you're dealing with another condition as severe as those that you listed off.
Yeah. Well, first of all, thank you for sharing that, you know, and I we've had this discussion before, and I know that's, a loss of any child is, is rough. So thank you for sharing that. And really that is the point of this is it, it is, um, it is really gut wrenching when you get these cases into the clinic, because I think the, the first part is, um, expectations, right? So, um, you know, if, if you have a, and sometimes you get emotional talking about this stuff, because you, you know, you deal with these kids and you, you worry about these kids because they're so young, I've had, um, I've had a couple of these cases that, um, I lost, like the kids passed away and just talking about it makes me emotional, because it's a sad thing because you want to be able to help everybody and you do your best for every single patient and you don't know what the parents are going through.
Then you also don't know what the kids are going through. So the best thing in overall case management first is expectations. Understand that these cases, they've already been through a lot, they've already been diagnosed with things. Uh, usually the scoliosis is a secondary finding on these and it's how do you manage these properly, right? So I think a lot of it has to do with proper counseling with the parents, right? Um, it's realistic expectations, right? So, um, you know, a child that has a short life expectancy forever, I would never push to a scoliosis surgery. If, God forbid, they have a really large curve, why would you do an unnecessary surgery unless there's some type of cardiovascular compromise or, uh, you know, basically the curve is so large that the heart doesn't function or the lungs don't function. Barring that I wouldn't ever think to myself as a parent, why would I subject my kid to another surgery, uh, if most of these have already had surgeries, multiple on top of them. I had one patient 10 years old, had 24 surgeries before they even came in to see me. And this is the condition that they had, they had MS, and as a result of an underlying condition. And unfortunately it's first understanding that the parent has to know expectations and it's how to manage these properly. Right? So some of these cases are milder, and you are able to manage them better. Uh, but some of these are, again, it's a matter of understanding what you're dealing with and how you're dealing with.
And I think, as a parent, I appreciate that, like, honesty from you talking to you as the doctor about just the level set of the expectation. Just for me and what I went through with my son, accepting the diagnosis and figuring out what his life, however long it was, was going to look like was the most difficult part. And you're looking for any glimmer of hope that you can hold on to, but you don't want false hope. You want, like, you want, you want to know what is this going to look like? Because like it or not, this is my life. And, and you work with I'm sure every end of the spectrum from the ambulatory to the non-ambulatory, to the kids with a terrible prognosis, but just that honesty from you as a practitioner on here, here's what we can realistically expect. Um, I'm sure that that's appreciated by patients, even if it's probably not a fun conversation for you to have at all.
Yeah, for sure. It's, it's never a fun conversation, but I think most importantly, you just, you have to be very upfront with expectations. And, um, you know, I personally have three daughters and, um, every time I, I, I'm just thankful and blessed, uh, but I use it as a comparison, and I sit with a pair of parents and I sit with, uh, with the patients and I have the conversation with them as to, okay, here are the expectations and here's what we're going to do. And really a lot of this is quality of life, right? It's what can we do to extend quality of life so the child, uh, the patient can function, uh, because they're not all to that extent, right? There's some of these cases aren't severe, severe that, you know, they're going to have a short life expectancy. Some of these cases are very manageable and they grow into adults and functioning in society, um, with a long prosperous life.
But again, the key is managing these conditions properly. So, you know, some treatments and what we do, uh, is limited. But, uh, again, some of the things that I've done with patients is I have had some patients go through full treatment protocols, uh, based off of what I have been able to do with them. I use again, um, their current abilities to help them work harder, uh, and put it as part of the routine so that they can strengthen their bodies so that it can function. They can sit, they can walk, they can stand, they have better balance. Um, because again, the key is quality of life, right? Um, I, I'm very clear with the patient stating, Hey, look, I'm not going to promise you any miracles here, but I'm going to do my best to work as hard as I can for your kid, your son or daughter, so that they can have the quality of life that's best for them right now.
I love this quote from a blog article that you wrote for CLEAR, it says since neuromuscular scoliosis is present due to an underlying condition, the underlying condition must be the guiding force of the treatment plan. And so I'd imagine when you're now looking at a patient with neuromuscular scoliosis, you're not just looking at the scoliosis, you're considering everything altogether, quality of life being one of the biggest things. And so what you do is obviously very complex and we have other blogs on just the CLEAR approach and treating scoliosis, but specifically with neuromuscular scoliosis, what makes these, outside of what we already talked about, obviously, what makes these cases more difficult and how do you kind of customized it for each patient sitting in front of you to not just treat their scoliosis, but take that condition into consideration as you're doing that?
Sure. So, first of all, we talked about, um, ambulatory versus not. So again, if the patient is, uh, able to walk, um, be it assisted with a walker or whatever, we, we will put them through a course of exercise that activates muscles, right? Uh, it helps them build more endurance, build more strength, and help them to be able to function throughout the day. So that's the first one. If they're non-ambulatory, I'm usually limited to certain things that can be done. Uh, so non-ambulatory, doesn't mean they're paralytic. It means that they're maybe sitting in a, in a wheelchair or they're unable to move their legs, uh, or they have a hard time moving their legs, and they're using like, uh, I've seen a couple of coming here with like a cycle where it's a modified bicycle, uh, where they're using their hands. Uh, so again, with some of those, we have to take each individual case and see what's necessary.
With some of those, I might give an option of bracing. Um, I might give an option of, uh, just specific exercises that we do in office, and we also teach to the parent and the patient so that they can help manage this on their own when they're not in here, because the more that they can do outside of the office, the better it is for them. It's more empowering to them to say, Hey, I'm going to do these exercises because I know it's going to help me. Uh, and I find that that really helps with a lot of patients. It gives them a sense of responsibility. So if they're unable to use their legs completely, and they're just stuck with upper body function, meaning from their waist up, um, again, uh, bracing is an option. Exercises are an option where they're done in the chair and or if the parent is willing to get them up and move them around, we give them home exercises to do outside of that.
Um, we have had patients in full-out, uh, wheelchairs that will come in and they will do pretty close to full treatment. And, um, my staff has been trained specifically to deal with these cases and deal with the fact that they might not be able to walk on their own, uh, or they're gonna need help. And again, it's having the knowledge of how to deal with these conditions. It's important. So those are the first two and the most common. Now the cases that end up having to have surgery for whatever reason, we end up saying, um, okay, this is something that needs to go on. Uh, why, because either the curve continues to progress and, or there's cardiac function affected, or pulmonary function affected, then usually what's done is, um, a newer, progressive technique that they're doing are growing rods that are put into the spine that allow for, um, the growth that occurs in the child's height, body length, because usually you're getting this at a younger age and then they're going to grow. It allows them to do a surgery where these rods actually expand and lengthen, uh, and gives them the ability to manage that, that way. Um, that is another option and, you know, a tool that can be used as well.
That makes sense. So, um, just hearing everything you're saying, like, this sounds like it's extremely complicated, so I'm just thinking from a mom perspective, how on earth, if my kid has neuromuscular scoliosis, do I go about finding a doctor to work with and what are the types of things that I as a mom should look for in a practitioner? What are the types of questions that I should ask? Because even within CLEAR, um, not every doctor treats neuromuscular scoliosis, it's really something you have to have training on, experience with, and be comfortable with.
Yeah. And again, I said this in the beginning, this is probably, of all the conditions, the most complex one. And I think as a parent, uh, I think it's just a flat out question to the doctor: Do you have experience with neuromuscular scoliosis? It's either a yes or a no. Now specifically CLEAR, as you know, is an organization that specializes in scoliosis. And I would say just that in general, uh, is a better knowledge of scoliosis than the average doctor per se. Uh, and then the next step is amongst that, usually the longer you've been doing this, the more you've been exposed to, uh, the more experience you're going to have. Now, I don't know what it is about my location itself, Florida, or what, but I've had a lot of these and my first one was gut wrenching. Um, I actually, uh, there's a, uh, uh, Dr. Jeb McAviney, who is, um, the, I guess, founder of, uh, ScoliBrace. He got on the phone with me from Australia to help manage a case because it was so complex and complicated. So I think it's finding people that know not only, one, that they've had this experience before. So flat out, ask the doctor, have you had any experience with this, and if not, can you recommend somebody that has? Number one. Number two, how you, once you find this doctor, ask the doctor, interview them, you know what, say to them, what's your experience with this? What can you do? You know, CLEAR doctors are fortunate that they have the ability to communicate with each other through a couple of different protocols that we have. We've got web based learning where we reach out to each other, share information. If it's something that the parents are okay with, uh, we will review cases together.
Uh, several colleagues will talk over the cases as long as we have permission from the parents to discuss it. And again, here was a case where I treated with somebody from Australia, a patient, because he did this bracing all the time. And it was my first experience. And I just about banged my head. So the question is, how do you find them? Number one, ask. I mean, yes, you found a scoliosis doctor, great! Call the doctor and speak to them personally and say, Hey, do you have experience with this condition, cause I'm concerned. It is one of the, if not the most complex spinal condition known to man, and I want the best for my kid. And that's how you start the conversation. It's just be flat out honest because they're either going to say yes, I'm familiar or no, I have no clue. And then--
And I think that's so important is to find somebody who has the experience in working with it. That was one of the, um, with my son's condition when he was hospitalized, the doctors hadn't dealt with it before. And so there were frustrations, but then we found people to connect them with that they could consult with and work together on his case. And at that point I just felt so much more at ease as a parent to know that there were experts, there were people who had dealt with this and there were multiple brains working on this together to help him. So you shared a couple or hinted at a couple of stories for neuromuscular scoliosis patients who've come into your clinic. Um, I'd love to hear like one full story of a patient or testimony.
Yeah, sure. So, um, you know, one of my favorite cases, uh, is now in college, you know, which is really cool. Um, and she started with me, uh, uh, I want to say it was 10 years ago and the more I learned, the more I could do for her, but it was really proper management of this patient who came in, who was wheelchair bound, um, great personality. Some of the speech was limited, uh, but she was very, very able to communicate what she liked and what she didn't like. Uh, and the parents, um, the mother specifically was just amazing, right? Because again, I think mama bears are always there. Uh, but mom was just super into making sure that she did everything that we told her and she, everything to the T and mom would call me every other month, say I want to come in again and do more stuff.
And, uh, the more she did it, the more her body started to react better. The more response her muscles got. And as the right now, I, you know, recently saw her just before were, you know, for those of you that don't have a timestamp on this, we're in November of 2020. So this was just before COVID, um, in January she saw me and, uh, she was off to college and it was really cool to see that she transitioned from, um, just to see her grow and be able to manage this properly, manage her condition properly and be able to flourish and take off and be on her own. Uh, I mean, there's, she does have some assistance, but the whole point being again is you want to be able to see that you have a success story and that you're working with the parents and because these conditions are so complex, you end up bonding with a family. Right. So,
Yeah. You know, just listening to you talking and seeing you talk, I know our listeners can't see you, but I can, I can just see your passion about this and hear your connection with your patients. And we do need to wrap up, unfortunately, because we're getting close to the end. And my final question might be just a little bit redundant considering all that we've talked about, but when it comes to neuromuscular scoliosis, if you were to give just one piece of advice to a patient or a parent who has neuromuscular scoliosis, what would that be?
You know, first of all, there's hope, you know, know that there's hope. Okay. So, uh, first and foremost, it's understanding that, uh, there are solutions and there's management. Uh, so that's first and foremost, know that there's hope. Number two, just find somebody that you can trust, somebody with experience, somebody that you can have an honest conversation with, right? And in that way you get a gauge and a feeling as to what this doctor can do for me and my son or daughter, what this doctor has is an experience. And it's really important that it's not just, Hey, I found a doctor, it's finding a doctor who specializes in scoliosis or has training in scoliosis. And then on top of it, finding a doctor that has experience in scoliosis, treating this type of condition and managing these types of cases. So I would really encourage to do the research, find somebody, you know, these networks are fantastic.
Uh, you know, Ashley, this, this podcast that you provide for people is such a important thing that people don't realize, because this could end up in the hands of somebody who passes it to somebody else. And all of a sudden they get information, too. God knows, a cousin or brother or sister or family member or friend or church member, whatever, that it could change their life. Right? So it's again finding the proper channels, uh, of what is the best for my kid. You know, and every parent will do the best for their kid. It's making sure that you find the right person, the right group, and the right connections that will help you get there.
Well, thank you so much, Dr. Alex, it was an absolute pleasure to have you join the show and I look forward to having you again on a future episode.
Fantastic. I appreciate you having me again. Thanks again.
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