75. Cervical Instability: Thinking Beyond the Neck with Patty Stott, DPT

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Linda Bluestein, MD (01:15.57)

Welcome back, every bendy body. This is the Bendy Bodies Podcast, and I'm your host and founder, Dr. Linda Bluestein, the hypermobility MD. This is going to be a great episode. Be sure to stick around until the very end so you don't miss any of our hypermobility hacks. And as always, this information is for educational purposes only and is not a substitute for medical advice. Today, I am so excited to have Dr. Patricia Stott with me.

Dr. Stott has many, many talents, including being a doctor of physical therapy, certified athletic trainer, and certified hand therapist. She is trained in visceral manipulation, neural manipulation, facial counter strain, craniosacral therapy, and is certified in Reiki. She is currently enrolled in a PhD program for integrative medicine. It has been so wonderful to be able to collaborate with Dr. Stott on various different patients, as well as share clinic space in Arvada, Colorado.

Patty Stott (01:56.918)

and certified in right heat. She is currently enrolled in a PhD program for integrated medicine. It has been so wonderful to be able to collaborate with Dr. Scott on various different patients as well as shared clinic space in our bottom.

Linda Bluestein, MD (02:10.762)

where we both see patients. We also had another great collaboration when we gave a presentation at the EDS Society Conference in August in Dublin on integrative approaches to pain management. Dr. Stott, hello and welcome to Bendy Bodies.

Patty Stott (02:19.806)

integrative approaches to pain management.

Hi, thank you so much for having me.

Linda Bluestein, MD (02:27.038)

We've talked about doing this for such a long time. Finally, I have a feeling this is gonna be the first of several conversations. So if you're listening to this episode and you think, oh gosh, but I had other questions, send them in. We'll catch up on them next time. So, awesome. Can you start out by telling us how you became interested in EDS and related conditions?

Patty Stott (02:43.638)

be great.

Patty Stott (02:50.058)

in EDS and related conditions? Sure. I will try to consolidate as much as I can, because I have hypermobile EDS. And I've been blessed to be able to experience most of the coexisting conditions myself, which I actually find is a benefit in being able to treat it in my own patients, because I have the experience of dealing with it at some point in my life.

And that was kind of my story in coming up and why I got into the field and as to why I really wanted to specialize in it. You know, I started getting advice from some very, very amazing specialists over the years when I was younger and it was conflicting. And it was about my physical body, what I could do with it, what I shouldn't do with it. And it didn't actually match what I was doing with my body. That was actually helpful. So I made it my own personal mission and it became a mission to help others when I had...

and developed my own family. And I gave birth to two biological zebras and we've kind of gone through the same thing with them. And I didn't want them to have so many questions or not have as many answers or have more answers than I had back then. So I just wanted to be part of the voice to help explore the what's and the why's and the how we can make this better.

Linda Bluestein, MD (04:07.358)

Sure, that makes sense. I like the biological zebras. Yeah, no, that makes sense. And in terms of head, we're gonna talk today about upper cervical instability. And you were one of the authors on that fantastic paper that came out, do you remember what month that was? Was that February, something like that? Okay.

Patty Stott (04:27.498)

I believe it was February of this year.

Linda Bluestein, MD (04:30.346)

And I know within, I feel like within a very short period of time, there were like 20 plus thousand views of that article. I mean, it was clearly something that a lot of people were really, really interested in. And people are still talking about that article. You were one of several people that was involved in that very, very long process, I'm sure, of involving many, many meetings and volunteering your time, right, to discuss and decide what you would have as some various different guidelines.

So we're going to talk about that today, but not necessarily in the context of the article per se, but I really want to dive into how you handle these conditions in your clinical practice, if that makes sense.

Patty Stott (05:11.53)

Yeah, absolutely. And I will say that is a great reference, that article has a checklist that the patients and providers can use to really screen out if this is something that we think is a possibility. And also treatment strategies as well, while we're not dictating exactly what to do, there's guidelines of the reasons behind why we would wanna do something.

Linda Bluestein, MD (05:31.73)

Sure. And we'll make sure to link that article in the show notes in case people did not know what article we were talking about. We'll definitely link that so they can access that as well. So can you start out by telling us how and why you evaluate neck and head pain in the clinic and why this is such an important topic for zebras?

Patty Stott (05:51.146)

Yeah, I think it's just an important topic because, you know, if we thought about even a decade ago and we talked about craniocervical instability or upper cervical instability, there really was no mild or moderate cases. If you didn't have a severe case, you weren't treated as though you had instability and it's really like any other joint in the body. We're not going to ignore a mild ankle sprain because it doesn't fit into our severe category. And we're realizing that there is actually a much larger population.

that might have something on whether it's the anatomical instability or the symptomatic instability which we can talk about, that they're somewhere on that spectrum. And the earlier that we get in to help them in recognizing it, the more likely we're actually going to have more benefit in treatment.

Linda Bluestein, MD (06:37.714)

Yeah, that makes sense. And I think that's an interesting analogy. You think that in the past, we were only acknowledging the more serious cases historically?

Patty Stott (06:47.742)

I think that the more serious cases were taken seriously, I think is what it was. I think that, you know, we just have this misconception that cranios cervical instability means that you can't function. And, you know, there is a difference when it comes to the hypermobile population. We know that there's anatomical structural differences between somebody who has a symptomatic hypermobility and the general population. So it makes them more prone to developing a symptomatic case.

Linda Bluestein, MD (06:51.223)

Ahaha

Linda Bluestein, MD (06:58.782)

Mm-hmm.

Patty Stott (07:14.474)

And then yes, we have this stuff layered on top of it that can make symptoms feel worse and are completely valid that might not be directly associated with the instability, but they're going to make you feel worse if you have upper cervical instability.

Linda Bluestein, MD (07:27.426)

Okay. And what do you find most commonly in your patients with symptomatic joint hypermobility?

Patty Stott (07:35.802)

that layered presentation, it, gosh, it's, you know, and I would say maybe occasionally and I, you know, we're always going to be wrong at some point, but I just in my practice have not met anybody that has upper cervical instability that doesn't have something else, whether it's a contributing factor, a coexisting condition that's exacerbating things, there's always something else and I get excited when that happens because the more that we have to work on, the more that we have to work on. So

Linda Bluestein, MD (08:02.135)

Mm-hmm.

Yeah, I do too. I mean, it sounds funny. I had somebody the other day with a bunch of abnormal labs. And I said, well, this is great, because now we have some targets and things like that. Although we know that not everything shows up in labs and imaging. And so we have to address the patient and treat the patient that's in front of us always. So do you think that your findings in the patients that you treat, does it differ depending on their diagnosis? I mean, some people probably come to you and they don't even have a diagnosis of EDS or HSD.

Well, maybe you could start out by briefly explaining the difference between those two. And I guess maybe you would have several buckets of patients. Maybe you have some where you suspect that they have a condition of, I'm sorry, I should back up. Maybe some you suspect that they have symptomatic joint hypermobility or you say, okay, you have symptomatic joint hypermobility. Some are going to come to you and they're going to already have an EDS diagnosis. And some are going to come to you and have an HSD diagnosis.

amongst those three groups. Do you notice any differences?

Patty Stott (09:06.546)

not in presentation or management. No, and the differences are really just a label. There's what it is, whether we're talking about a different type of EDS as well, or hypermobility spectrum disorder, or HEDS, or a suspicion of. There's something going on with the extracellular matrix that's making your structural composition wonky.

Linda Bluestein, MD (09:13.447)

Mm-hmm.

Patty Stott (09:29.57)

and that carries on through the body in different ways for each different person. So even when you look at, you know, and I guess I should say when I say that there's no difference, every single person is different. That's what the commonality is, is that everybody is so different and what gets them to the spot by the time that they sit down in my office, that is what is important to me is their whole story because their presentation has to do with their entire past, what their body's been exposed to, the injuries that they've had.

So, you know, there's not a difference because we treat them as an individual, right? And I'll say that most of the patients that come to my office have already tried the standard physical therapy. And if that would have worked, then we're probably not dealing with symptomatic joint hypermobility because that responds a little bit different. So, you know, the patients that come into my office and they're already suspecting or somebody has told them, they're probably there because things haven't worked before. So...

You know, anecdotally, if we just have somebody that's hypermobile and doesn't have the symptomatic piece, yeah, I might actually treat them differently than somebody that has the symptomatic piece along with it because of the responsiveness to treatments.

Linda Bluestein, MD (10:39.602)

Mm-hmm. Okay. And so say someone does come in and they have mild to moderate upper cervical instability. Where do you usually begin? And especially in light of what you just said about the fact that they've often tried a lot of other things first.

Patty Stott (10:54.702)

So a lot of where I start is very much subjective because through our conversation is actually where we're going to get a lot of the information as to the severity of their presentation. And this is what's important, is that when we go to treat upper cervical instability, we're actually looking at the severity of presentation, not the severity of instability. And that is because this is a layered condition. So I can have somebody that has mild signs of upper cervical instability.

but their inflammatory process is out of control. Their autonomic nervous system is not registering and giving output correctly. So if I touch somebody that has mild upper cervical instability anatomically, but they're having a severe reaction and presentation, I'm gonna make them very upset. So that's where you've gotta go through the subjective and determine what type of severity presentation, not instability, but the severity of presentation that we're looking at.

So how reactive are they? How often do they have flare ups? How quickly can they come out of those flare ups? So this is all outlined in that article. But that's how we look at it. And we don't look at the patient as like, oh, well your Bayesian axial interval was, you know, was more than two millimeters change when you went to extension. Although that's part of the story. Absolutely, it gives us some information.

But we really have to respect the severity of presentation. So that's a lot of subjective. So I typically don't touch my patients that I suspect have an upper cervical problem for a while, for two or three sessions. And then it's really figuring out these contributing factors. And we could really talk for days on this because everybody's contributing factor is different. So just because you have a diagnosis, I could be sending one person for vision rehab.

I could be sending another person for lung rehab. I could be sending another person for pelvic stability work, another person to get cleared for a CSF week. The list can go on and on and on as to the things that can exacerbate or even cause upper cervical instability. So that's really the understanding the layers first and then the contributing factors and those are the places to start.

Patty Stott (13:09.502)

They're not going to have a normalized reaction to whatever treatment you are as a provider, unless their system is regulated. So, it's that mast cell piece and that autonomic nervous system piece that you really have to understand what's happening in the individual before you can ever lay hands on them. And then as for, you know, testing-wise, I actually don't do too much testing on my patients. Outside of maybe palpatine, seeing where the C1 is placed, I do. I have.

wonderful center out here. I know we are a bit spoiled with some of what we have out here, but in Colorado we have Upright MRI and they do wonderful readings, beautiful reports that are really quite accurate that I use more for verification to see, hey are the numbers matching the way that you're presenting, because then again it adds to the story. If you're only showing these mild numbers that we would consider a mild positive diagnosis, maybe a little bit of impingement.

but your presentation is severe, then again, maybe we don't treat the neck right away. And that's where the second part of figuring out how to work with somebody is. After we figure out how do I need to approach this person, what level of severity are they in? Then it comes to how should I treat them? And I'll tell you this bottom up model, and for those who don't know, Susan Chalala is just a wonderful expert with the upper cervical spine. Is that...

She doesn't start with the cervical spine. She starts in building the base up. And this is what I try to explain to people that if you take a giant bowling ball that has a wobbly sit onto Jenga, if you set up the Jenga game, put a bowling ball that's wobbling back and forth on top of that Jenga stack that you have built, and then you start pulling things from the bottom. You can do whatever you want to that bowling ball, but it's always going to wobble.

if you haven't fixed the bottom of your Jenga. So you've really got to have a stable base in order to have a stable head, which is again, like wonderful. We have more ways to work with these patients and easier access points that aren't as triggering to working directly on the neck. So, you know, from a model of how we would approach somebody anatomically, it really is this bottom to top. Are they stable enough to hold the head up there? If I try to make them hold their head up there. And then the next...

Patty Stott (15:35.034)

of understanding how to work with these patients, which kind of goes along with anything that you're working on, is are they aligned? We really need alignment all the way through that spine, because we're not just talking about C0, the head through that third cervical vertebrae, the whole spine is attached. So what is their alignment like? Because we don't want to start any strengthening or any work unless they're in alignment.

not only the alignment piece, but then the proprioception. Because if you start having somebody do these isometrics and strengthening, but they have no concept of where their head is in space, we're really not doing them a service. We're not teaching them anything. We're just having them do things. So you really need this alignment piece, this proprioceptive piece, and then something else. And that something else is gonna vary from person to person, because again, it depends on what they need. What is their contributing factor? What are we strengthening it?

Is it really, is it a core problem? Is it a shoulder problem? But that's where you can get into the specific strengthening after you have the alignment and then the proprioception.

Linda Bluestein, MD (16:37.298)

So I was smiling as you were saying that because I think it was the episode that was released today where I was talking with Dr. Chopra about the lower extremities and he used the Jenga analogy also. Yeah.

Patty Stott (16:49.318)

Oh, it's a perfect analogy. And that's where like, you know, I talk about the base of the spine, but once we put the person in a vertical position and standing, then we have to consider the pelvis to the toes. So, and then how the foot interacts with the ground too underneath it. So, but again, like what wonderful places to be able to look at to figure out, does the individual have a leg dysfunction or is it, like, it's just, it's great. It's just, it opens your eyes to a world of possibilities that things haven't worked for you before.

Linda Bluestein, MD (17:17.417)

Mm-hmm. As you're saying this, I'm thinking that to me, one of the big problems is that our insurance companies, say somebody does go to standard traditional physical therapy, insurance is gonna authorize them to work on a body part, right? And then you have to keep filling out the forms and they keep having to get authorization and you have to improve enough, but not too much, in order for them to keep getting.

those visits authorized, right? And you're discouraged as a physical therapist from looking at the body as a whole, right? If you're in the insurance system, the insurance company cares about how the shoulder is functioning in this particular case. They don't really care about how the whole body is functioning, but it does make sense that the whole body is connected and that if you're really knowledgeable about these conditions, that you would really understand that

connective tissue that doesn't function as strongly as it might be in some other people and so to me that's a big part of the problem is our insurance system and how they try to take the bodies apart well also the fact that they love to reimburse for surgeries and procedures but not for like the approach that you take is

Sounds to me very logical and very important and yeah, you could do all this work on the neck and not make any progress because the problem lies at least in large part in the pelvis or in the lower extremities or something. I don't know. Does that make sense or do you?

Patty Stott (18:56.21)

It does. And I'll say that's some of the problem that, and I know it's frustrating for patients out there, that a lot of us who do specialize have stepped into self-pay practice. And it is to kind of unleash our reins a bit in being able to treat the areas that we do feel should be treated. And there is a lot of monitoring and rules and regulations and things like that. I will say that sometimes with some insurance companies, you can provide justification.

that justification does involve having research. And this is where like cue the circus music because Linda, I know that you know this, it is hard to get published when there isn't already research out there and you're trying to offer the new research and you just hear, well, you know what? We haven't heard much about that. So it's just not interesting or it's not relevant or whatever it might be. So I was just, I was so excited for this, this upper cervical piece to come out because you know, it's really the start of, we're trying to

Linda Bluestein, MD (19:36.05)

Huh?

us.

Patty Stott (19:55.534)

put in more research into the understanding of the why. This is more complicated and more simple than we think. I like saying that, but it really is. It's not just the upper cervical spine. It could be something that you've been dealing with for years and didn't know that it was related. So there can be justification. For some insurance companies, you can explain to them. But again, we need more people to come out with the research as to the why. So...

Hopefully there's others reading, you know, and I love collaborations, that's why I love this, because I don't know everything. Nobody out there knows everything, but if I talk to somebody and give them some information, they could excel in their own practice with their own skills and figure out other things that I don't know. And that's where we need these minds to develop and start doing this research so that we have an understanding of like, yeah, it could be caused by a lot of different things, but.

When I found that it was related to this in people, I did this treatment and it got better. So we do need some people to start writing up some case studies and things like that to be able to help us out on, especially the insurance front.

Linda Bluestein, MD (20:51.079)

Right.

Linda Bluestein, MD (20:59.386)

I really wish it was easier to publish because that is such a huge problem. I mean, it really seems like for people like you and me who are, you know, primarily in private practice, it's, we don't have, you know, a big university that's supporting us and doing all the administrative tasks and things like that. And I think that's one thing to me that was really fabulous about this group that you were involved with. You know, you all donated your time. And it was getting together.

the minds of the people who treat this population all across the world, right? This was five continents or something like that. So that's...

Patty Stott (21:38.922)

Yeah, we had coordinating a time to meet was incredible. We had a couple, I think it was 4 a.m. meetups on my time. It was, but I'll tell you, like just to sit down with people that can carry the conversation within the symptomatic hypermobility world and just to be validated by the fact that, hey, that's working for me too. And that it's very different from what we are taught in physical therapy school. It is very different in what we are taught to apply, how we were instructed to fix people.

Linda Bluestein, MD (21:43.016)

Yeah.

Linda Bluestein, MD (22:02.858)

Mmm.

Patty Stott (22:08.834)

very different. So yeah, we need to keep going with these collaborations. I know it's tough and we're all busy, but if we can continue the conversation, we'll have even more treatment ideas out there.

Linda Bluestein, MD (22:21.566)

Definitely. I just finished reading Dr. Peter Attia's book, Outlive, the Science and Art of Longevity. And he talks in that book about evidence-based medicine and evidence-informed medicine. And what you're describing is very much an evidence-informed medicine type approach where, you know.

Yeah, we have some evidence from double blind randomized controlled trials, but obviously in some things that's really hard to study. So you have to look at people's clinical experience and you're still using evidence. But I think it's a really great way to look at evidence in a way that is maybe differently than what some people think we should be looking at. We're not restricting ourselves. People are suffering, right? People are really, really suffering. So for us to say, nope.

you until we have a double blind randomized control trial that tells us that we need to do A over B. Basically to me, that's the bottom line is getting groups together like this or saying, look, what can we do for people? What's working? What's not? And starting now and not waiting.

Patty Stott (23:32.042)

Yeah, no, I think that you're absolutely right. And I have to sidetrack a little bit. You know, we're trying to look at all of these conditions that are, I'll say more symptomatic, or they seem more prevalent in this population. And I did have a couple specialists fly out last week, and that was the exact conversation that we had by the end of it. Like, well, we just found out all of this amazing, wonderful stuff. We can't publish it because...

it's just nobody's ready for it. You know, we had Ron Hruska of the, he's the founder of the Postural Restoration Institute and Amy Morris and other PT from the East Coast flew out. And we looked at these patients that are having these upper GI or MALSI type issues that are going on. And it was just fascinating because we found what was happening and we really have a definition for it right now, but for each single person, it was different as to what would the driving factor was.

And we just realized there's no way that we can publish this in research. So, you know, we've got to use our different outlets. We've got to use just to share our experiences. I mean, it was such a wonderful experience and all that we learned that I might have to take it to a book or I might have to take it to a blog post. And, you know, until somebody takes that and then adapts it into case studies and things, we're kind of stuck for now.

Linda Bluestein, MD (24:48.592)

or a podcast interview.

Patty Stott (24:50.854)

Yes, please.

Linda Bluestein, MD (24:53.842)

So I think that sounds like a great conversation that maybe you and I could have with one or both of them. Maybe you could sit in the guest co-host seat for that conversation. Cause when you...

Patty Stott (25:05.17)

I'd love to. It would be fascinating. What we found out is fascinating. And it was kind of like one of those dumb moments. Like how could we not realize this was happening in this population? And it changes the entire homeostasis of the body. It's incredible. It was incredible stuff.

Linda Bluestein, MD (25:18.57)

Mm-hmm. Yeah, because there's going to be people who hear, wait, MALS-y, MALS, median arcuate ligament syndrome type presentation. And obviously you had some great conversations about that. So we will definitely have to follow up on that one.

Patty Stott (25:33.858)

Yeah, please.

Linda Bluestein, MD (25:34.966)

Super, super interesting. Okay, so I was asking you how you start with somebody with mild to moderate upper cervical instability, and I'm gonna see if I recap accurately. The first two to three sessions or so, when you say you don't touch them, you mean you physically are not touching their body or you're physically not touching their neck, or can you elaborate a little bit about that?

Patty Stott (25:56.93)

So I'm typically doing a lot of subjective, especially if we're just meeting. I need to know what your body has been through. So I might touch your C1 to see where it's rotated, maximum for the session. I don't mind touching down lower to look at the alignment of the pelvis. I love to look feet on the ground all the way up to the head. And I look at that while somebody, typically while somebody is standing, and then what happens when you lay down? What did gravity do to you in between there?

Linda Bluestein, MD (26:25.598)

Mm-hmm.

Patty Stott (26:26.826)

because it could be a gravitational problem, which would indicate more of a pressure problem, which we can talk about at that MALSY talk that we have, but it could be a pressure regulation problem rather than a true orthopedic problem that they're dealing with. So yeah, it's subjective mostly for the first little bit, but I will palpate and I will try to see what's going on, but I typically rely, and I do have a lot of background in dealing with patients with upper cervical instability, so I don't think that's

for everybody, but I just can get so much information by asking the right questions and, you know, going down those rabbit holes, especially those, those neurovascular ones and neurological ones and trying to figure out if they're correlated to the upper cervical instability with head movement or position, or is this something that's just neurological?

Linda Bluestein, MD (27:01.477)

Mm-hmm.

Linda Bluestein, MD (27:15.518)

Sure. So when you're saying subjective, you're meaning more from taking a history than from doing the physical part, which we divide that into subjective and objective, but a lot of the listeners might not be familiar with that terminology, so I just want to clarify.

Patty Stott (27:23.938)

Exactly.

Patty Stott (27:30.75)

Yeah, yeah, definitely. It's a lot more talking a lot more because I want to hear the last thing I want to do is touch somebody before I find out that they are reactive to everything. And even less the smallest touch or manipulation sends them into a neurological flare up for days. So I want to know all of that first. I want to know how their body is going to respond to my treatments.

Linda Bluestein, MD (27:40.903)

Okay.

Linda Bluestein, MD (27:51.626)

Okay. And then once you've had several sessions with them and now you're getting a better sense, it sounds like the path diverges significantly depending on if you've determined that this is more problems that lie within the pelvic floor versus the autonomic nervous system versus other postural issues, et cetera.

Patty Stott (28:15.094)

Yeah, absolutely, absolutely. And then what we're going to give them in clinic and the things that we're gonna have them do very much, they're very different from mild to moderate to severe cases. And all of that is actually, it's written out in the article as well as to, hey, if you, especially the don't do's are in that article as well. So for our physical therapists that are like, well, let me test and see if you have instability, please don't.

Linda Bluestein, MD (28:34.581)

Right

Patty Stott (28:41.306)

Assume that it's already there because we are going to see a neurovascular response if you trigger something. So don't, you know, the tests are within the article itself, which ones to avoid and which ones might be safe. But again, you always want to err on the side of caution.

Linda Bluestein, MD (28:59.878)

Yeah, definitely. So let's say you started going down one of those paths and you're still not making progress. What are some of the next more advanced things that you might be looking at and trying?

Patty Stott (29:14.306)

So I don't know everything, and I might not be the best fit for everybody. I might not have what they need. So my first thing is, and I still have very few people that if we're talking about this upper cervical instability population that I have that I can refer out to, but I do have maybe two providers in the area that I'll say, like, hey, just go see what they can do for you if it's something different.

The next step after that would be a talk about possibly regenerative medicine, because I still very rarely do I talk about anything surgical with my patients, because the majority of patients actually do very well if we figure out what's driving the upper cervical instability and then rehab it appropriately. So we usually don't have to have that talk. So those would be my two big talks of who else are we going to see. I guess the other big talk would be as well, do we need to rule anything out?

that we've missed. So is there anything else that could be driving the upper cervical instability that there's no way I'm gonna do anything for, depending on the person, because there are actually, there are some ways that you can treat cerebral spinal fluid, but I still wanna know if they would have a leak that might be pulling and putting pressure on the spine and causing things to shift up higher. I would want to know if they had any signs of a diseased phylum or cord tethering lower in the spine.

because that's gonna pull and it changes the whole pull all the way down the spine. Do we do anything about it that's, you know, super invasive, not necessarily, but if we know that there is a diseased phylum or cord tethering that's present, we talk about inflammation more. So it just, again, it's just redirecting at that point. And it might not be me, it might be another specialist. And I always, you know.

for all those people out there that do specialize and do really get locked on to their patient care, it's okay to refer out. You just have to make sure that you trust the person that you're referring to. They just might have the skills to help the person out that you just don't have.

Linda Bluestein, MD (31:19.106)

Oh, and it's, I remember when I first started opening my clinic and I was so

feeling like I didn't know enough, you know, and Dr. Chopra kept telling me, you can't possibly know everything, and you have to have a team. There's no way that you could possibly take care of this population of people without having a network of people that you can have, you know, that you can send them to evaluate for different things or address different things. And I realized very quickly that he was completely right about that.

Patty Stott (31:55.478)

Yeah, and you might, over time, you might start to absorb some of what the other people know, but it's, you're right, there's just, especially with this population, it's a connective tissue disorder, you have to know head to toe, in and out, how all of those integrate and interact with each other if you wanna see long-term progress. That's literally knowing everything, and like at a cellular level in the body, that's just impossible, it's impossible.

Linda Bluestein, MD (32:00.824)

Mm-hmm.

Linda Bluestein, MD (32:20.166)

Yeah, yeah, exactly. It's the exact opposite of when you go to the dermatologist and they don't care about any of your history except for your skin cancers and they literally will do the exam focusing on your skin and that's it. Like that's super, super focused because that's their specialty. But for us, it's completely different because everything is connected.

Patty Stott (32:41.974)

Yeah, and I still, I get so excited when I learn something that I didn't know or didn't connect the dots, because again, it gives a different avenue to think about people. And like when I think I was at the end of the road, like, aha, it's this core tethering, that's what it is. But then it's caused by something, wait, tell me more. And we can rehab it and we might not, and we're working on that stuff as well, but we might be able to actually rehab out of this depending on the presentation.

It just, it blows my mind. I'm always just fascinated and humbled by how much I don't know about the human body. It's incredible.

Linda Bluestein, MD (33:16.146)

Yeah, exactly. Exactly. I feel the same way. So in terms of strategies that people can try for getting back to upper cervical instability and specific strategies, are there certain ones in your experience that tend to be most effective?

Patty Stott (33:32.758)

Well, you can mark this down for literally anything in this population, but especially something that might cause a neurovascular response. But it's the precision and the intention and the treatment. That's for literally everything in this population. Don't throw the kitchen sink at this person. If you think that their C1 is rotated because they have a lung issue, please just work on the lung, give them one or two things. We don't need to be...

over stimulating the system, especially if they're hyper responsive to things. So I'm all about less is more, let's figure out what are the one or two things that is going to help this person, whether it's manually or with their home program, that would be helpful. And of course, working away from that area, I might work on somebody's lumbar spine up to their thoracic spine for 40 minutes and do one thing on the cervical spine.

But it's really about precision. It's that why again, why are they having upper cervical instability? Because again, if it's more of a mass cell systemic reaction and it's causing this neurological response that's happening up there, you can play with that cervical spine and give them all the homework that you want. But until you calm down that primary agent that's driving their reactions, it's not going to do much. So you really have to be precise. What is it that we're trying to do?

That is my goal and until that is resolved, I'm not gonna move on to the next thing. So I really, I break this down in stages for people. Like, hey, I need to see your responses, calm down first, but maybe I'll work on your Dura and maybe in another area to try to relieve some of this. So again, it's different for each person, but I will repeat over and over. It's the precision and the intention. What are we really trying to do with the individual in front of us? It's very gentle techniques.

I always say it's, you know, if you look at that osteopathic way of doing things, it's kind of like working with, I was going to say kids, but let's be honest, some adults too, sometimes they have to think it's their own idea. So when you go into the body, you don't want to tell it, well, go here, because that's where I want you to go. But if you come in and you say, well, I think this is a better idea, and that's the way that your hands are moving, of guiding.

Patty Stott (35:51.358)

or releasing and allowing the emotion to open up and you convince it, see, that was all your idea. That was great way to move back into place, C1. You know, it's letting the body reclaim its position because when we start to move it back into place is when, you know, we as humans can feel this too. Even though you told me that's good, it doesn't feel normal yet, I don't like it. So it's gonna move out. You know, so I think it's really...

Linda Bluestein, MD (35:57.444)

Hahaha

Linda Bluestein, MD (36:15.021)

Mm-hmm.

Patty Stott (36:20.146)

is less is more. How precise can we be? What are we trying to do? Are we making sure that we're not missing something? So, you know, I'd say for those that are that are working with somebody that has upper cervical instability and really have been focused on, but I think I should be working here and not on the upper cervical spine, hey, go for it. You know, it's that could just trust yourself on it. I think that we still get focused on, you know, it has to be upper cervical

Linda Bluestein, MD (36:52.006)

So if I'm understanding what you're saying correctly, that could also explain why, you know, a lot of my patients, I don't know about your patients, but, and obviously we have patients in common as well. So as I'm saying mine and yours, and the ones we have in common, a lot of people do go to chiropractors or go to osteopaths where they've had some higher velocity type manipulations and higher velocity work. And so as you're saying that, I'm thinking, well, boy, that's maybe where,

Number one, you can cause actual damage if you do that on somebody who has connective tissue that is not as strong as you would expect. And two, you can end up not being able to hold that, let's say you do get it in a better position, but you won't be able to hold it because of the way that it was accomplished.

Patty Stott (37:43.51)

Yeah, absolutely. And although I don't get asked this question a lot, I get told this statement a lot, is my C1 didn't hold. And of course it didn't, because it doesn't want to be there. So again, we're talking about that whole Jenga, this very tall Jenga chain that's been built up underneath it. And again, if you're trying to constantly pop that top piece of Jenga back in,

Linda Bluestein, MD (37:52.897)

Mm.

Patty Stott (38:09.482)

but you have the wobbly pieces down below, then it's just not gonna work. And I have run into some chiropractors that do adjust the sacrum, the pelvis, lower part of the spine. I'm okay with that. I'm also okay with symptomatic relief. I'm up for any conversation with anybody to figure out how to make you feel better. Like we don't know what everybody's timeline is, so I always let people know like your timeline is never wrong. Like if you're thinking about doing something for a treatment, it's never wrong, consider an experiment and then we'll regroup.

Linda Bluestein, MD (38:26.537)

Right.

Patty Stott (38:38.058)

So, you know, but it's not gonna hold, your C1 isn't gonna hold if something else is pulling it out of whack and not to become more complicated, but just to show all the wonderful things that you could work on and how to think outside the box. You know, we talk about one of the things that we do for dental movement of C1 for our especially moderate and more than that severe cases of upper cervical instability. And sometimes this population, the severe presentations can't do it.

is we use our eyes to move C1. So our C1 actually follows where our eyes go. So you can use that as a muscle energy technique. However, pause there. Because if you have a patient that has visual spatial issues and they are neglecting their left side because they have visual spatial issues and a weaker left eye, their vision goes this way. Because that's where it likes to focus, to the right side.

Linda Bluestein, MD (39:09.608)

Mmm.

Patty Stott (39:36.066)

So if it's focusing to the right side, you have a constant pull and dominance to your right side, which your C1 will follow. So you gotta kind of look at everything. Please don't exhaust the list. That's why I typically don't talk neurosurgeon with my patients. I've had a few referrals out to them for a consultation, but there's just a world of access points that we might've missed. So I mean, it's crazy to think, but I think that a lot of people can resonate with this.

The body looks for stability everywhere, absolutely everywhere. So we're talking visual stability. I mean, that is what helps feedback to our upper cervical spine of where it should be held in space. And if our vision is not stable, your body will find another place to make up for that. So it's the same for the jaw. If you can't bite fully, if you have an occlusion issue, you're getting no proprioceptive feedback, and that goes straight into the upper cervical spine.

So again, there's just, there's so many things that you could look into in treatment options. It's not exhausted. It's, there's really a world out there. So I just, I always tell people, hang on. And especially for the patients, if you feel like I've had this weird wonky thing and I also have upper cervical instability, trust your gut if you feel like you should get that checked out as well, because it might be playing into your body, trying to stabilize, especially that visual, spatial proprioceptive component that is our head.

Linda Bluestein, MD (41:02.354)

That's fascinating about the eyes and C1. And because I feel like I hear a lot of people say, I either suspect or have diagnosed upper cervical instability. I had physical therapy that was kind of directed at strengthening the neck flexors and kind of some of the.

more traditional things, some of the exercises that you were demonstrating as we're sitting here on video. And for those that are, we didn't demonstrate anything too major, but if people are listening, they can always check out the video too. But I feel like sometimes people think, okay, if that didn't work, then the next option is surgery. And I love that you're saying, no, there's a lot of other things in between. Now, obviously there's both absurd exceptions to that because people are so unstable perhaps,

of people, right? There's all kinds of these other things that they could try in between. Yeah.

Patty Stott (41:57.646)

Absolutely. Absolutely, but I will say, if you are so unstable that you need to have surgery done, you still have to work on the other stuff because the pole doesn't change after you're fixated. So you will now be fixated and you'll have the same poles in your body to try to maintain visual stability. And we haven't even gotten to the pressure system. But I mean, really head to toe, there could be something feeding into this. So whether or not you are

going to get fused or you have been fused for those of you that are listening. If there was a driving factor before that nobody ever addressed and you're still having symptoms, please go find somebody to find that driving factor for you.

Linda Bluestein, MD (42:41.062)

And when it comes to the visual things, who should somebody be looking for? Because of course, there's gonna be people listening that are in different countries, that they can't come and see you, they can't come and see me. What type of provider should they be looking for?

Patty Stott (42:57.698)

So I mean, you can start with, if I was talking about spatial issues, and like, I know this is, we hear this a lot, it depends on the provider. You might find a great provider that kind of does everything. So you might find a neuro optometrist that doesn't help you. So you've just got to explore in your area. I would say find an EDS provider in your area and ask them, ask them who they use for their eyes. You can just start with a regular visual exam.

Linda Bluestein, MD (43:21.63)

Mm-hmm.

Patty Stott (43:25.534)

just to see and this is I had this I had my mind blown last week when somebody had told me this about this was just the visual piece last week and I tell everybody to move their eyes I'm like oh my gosh I can't believe I haven't thought of this it's why I love learning things I don't know but then I had the thought that well when somebody is whatever sighted they're handed their glasses and they're told wear these when typically a lot of people are told to wear their glasses

when they're reading, when they're on a computer screen, when they're trying to see far distance, your eyes don't care what you're doing. Your eyes are constantly absorbing the field around you. So if you have a body that has difficulty finding stability, please go find an eye doctor that you can talk to about, shouldn't I be wearing these glasses all the time if my eyes can't figure this out? So.

You know, it's really finding just the provider that's willing to listen and maybe just trial some things with you. And then if not, maybe we do send you to a neuro optometrist that can look into some of those things. Sometimes going to see a visual rehab physical therapist to see if you have a convergence or divergence issue as well. Like are we really seeing that this is neurological with the eyes because of something that's happened before? So just know that there's a lot of options.

There's a lot of options. I would say if you could find somebody, you know, vision rehab or just a standard, somebody willing to open to talk about the eyes as an eye doctor, that would be great.

Linda Bluestein, MD (44:55.818)

Okay, so we talked about sometimes it's in the pelvis, sometimes it's in the lower extremities, sometimes it's in the visual system. Another thing that you've talked to me about that I would love for you to explain to the listeners is tongue tie.

Patty Stott (45:12.822)

Oh, yes. So tongue tie. So tongue tie is, it sounds very localized. It's actually not. So it's the fascia that actually it does connect your tongue to some of the external fascial structures that we have around that area. But fascia is one piece in the body. It's literally all connected. So when we say tongue tie, yes, there's this component that's in this anterior neck issue and underneath the jaw, but it goes all the way down through the front chain of the body.

all the way into the pelvis and into the legs. So I will say, while we still don't fully understand why people are having symptomatic tongue tie, you could have symptomatic tongue tie and have no idea that's the cause of your symptoms because we've adapted so maladapted so well to we're just so great at finding ways to compensate in our body. We're amazing at that. So we might never know

Patty Stott (46:11.71)

you know, this jaw and face area, again, this tongue region, it's going to continuously contribute to the position of the upper cervical spine. Also, if you think about that fascial chain that runs in the front of the body, when it, we'll call it tightens, because fascia doesn't really tighten, but when it becomes restricted for whatever reason, whether that's inflammation, genetics, whatever it might be, if you have a true tongue tie, and you have that tight anterior fascial chain,

it is going to pull your head forward. So it is going to pull C0 forward on C1, and God forbid you have any jaw issues or anything else that adds a little rotation to it, and can further feed into the instability that's present. So it could be a contributing factor of a number of different things. It's certainly, I'll say, an exacerbating factor. So if anybody out there is dealing with upper cervical instability, in my practice,

If I have any suspicions, if we think there's upper cervical instability, I want to know about your jaw, I want to know about your vision, I want to get you checked for a tongue tie so you can start oral myofunctional therapy. It's some of me, but there's other people to see that can be such a wealth of valuable treatment input for these patients as well.

Linda Bluestein, MD (47:29.062)

And you had mentioned the mast cell piece too, and I meant to say when we were talking about that, that I've definitely found in my patients, if we get the mast cells under better control, that joint stability improves everywhere in the body usually. And I was not really a believer at first. When I first opened my practice, and I kind of heard about mast cell, I didn't really appreciate the percentage of people that were impacted by that. And then, I would say probably only about a year ago, I started,

Patty Stott (47:42.242)

Absolutely.

Linda Bluestein, MD (47:58.956)

preparing to give a talk at a mass cell conference. And you learn a lot when you prepare to give a talk, right? So I was preparing to give this talk, and I was like, oh wow, I think maybe I should start really working more on this mass cell thing and people with persistent pain. And since I started changing my approach, I definitely think that that's really helped a lot of people and with the joint stability, which is obviously super important.

Patty Stott (48:21.354)

Yeah, my gosh, so much. That's what I tell people all the time. You can hop on my table if you want, but you might not want to pay the money until we calm down the inflammatory response because we're not going to have the results that you think because it's going to cause abnormal tissue response. It absolutely will. And yeah, we're not.

quite sure why it tends to localize in certain areas of the spine, but certainly the upper cervical spine and this craniocervical junction is an area for it. There might be some sort of neuroimmune thing that's going on there, like neurologically, might be more of an epicenter. So that's where it like it's like a chicken or the egg scenario. That's why it's so important to have these conversations because was this something that's been developing over time because of an inflammatory response or because of one of the other?

the other things that we've talked about. So I always tell people, you know, don't worry, you're already working on it. You're working on mast cell stuff, that's great. Lower the inflammation, because we'd have to do that at some point anyway. So you've already got one foot up, that's wonderful.

Linda Bluestein, MD (49:20.358)

And I think a lot of people do.

Like you said, we are very adaptable. And I think most of us are perfectionists, or a lot of us, you know, we tend to be hard on ourselves. And so I think it's very important for a lot of people to get that kind of encouragement, because they might go to other appointments and they're told, oh, if you fall short at all, it's like you're not even trying. And it's like, no, that's not it. People don't realize how incredibly hard it is to be somebody with chronic illness, how incredibly difficult it is.

Patty Stott (49:52.374)

That's what I try to change the language a little bit. And I know that people are suffering. This is really hard to live with, and I know that. But also think about the amount that your body puts up with every day. It's incredible. So it might not seem strong, but it's very adaptable. And for what it's going through, it's doing a lot. It might not be doing the right things yet, but it really is, it's holding on to quite a lot.

Linda Bluestein, MD (50:21.374)

Getting back to tongue tie for a minute, what patients in particular do you refer out for evaluation for tongue tie?

Patty Stott (50:30.326)

I'll tell you the ones that I really want to get checked out for tongue tie, especially because I don't have another answer yet, I'm gonna put it that way because my answer, we're learning so much about this, it might change in another two years or so, by my patients that are having intracranial pressure issues. So there's a fascial component about things being compressed in the head moving forward and things being squished in there, so I've seen an improvement in headaches and intracranial pressure and that.

brain pressure sensation when it's paired with a cervical instability, when somebody has oral myofunctional therapy, or if they need a tongue tie release. And to find out if you need one, you would see an oral myofunctional therapist. And I will throw out there, there is a lot of debate whether or not we should be releasing tongues in patients that are unstable. So what I will say is that I don't have that conversation with my patients that have severe

instability unless it's well thought out and they have a team and we have everything planned and it's appropriate for them. But that's a rare conversation I have when there's severe instability present. However, if you have mild to moderate instability present, I think the conversation can be had as to is this a best approach for the person that has also instability. Because I, and what I tell my patients is I would never let you have a tongue tie release unless you were talking to me and we were doing proprioceptive exercises and working on alignment and like

they have homework. They have homework to make that procedure work for them. And just like any procedure that's ever done, I always say, look, it's an opportunity, it's not a guarantee, it's an opportunity so that we can start working out of something. But if we don't continue to work, it's not going to work.

Linda Bluestein, MD (51:59.771)

Mm-hmm.

Linda Bluestein, MD (52:11.622)

I love that. When I had my Tarlov cyst surgery, that is exactly how I viewed it, but I didn't quite word it like that, that it was an opportunity, not a guarantee. That's really, really smart. When it comes to intracranial pressure, are you thinking more high pressure, low pressure either? With tongue tie.

Patty Stott (52:30.902)

Typically, with tongue tie, typically it's a high pressure response and we could have a, we can have another day of chatting about pressure strategies and what the correlation might be because we do have some more information recently on that. But really it's more of the high pressure. It's that kind of feel awful all the time, nothing's really helping, lots of pressure.

Linda Bluestein, MD (52:37.382)

Ah!

Linda Bluestein, MD (52:51.53)

Mm-hmm, okay. Okay, and another thing that you mentioned briefly that I would like to circle back to as we're getting close to wrapping up here, you mentioned regenerative medicine. And I was curious if you would share a little bit more about your experience with your patients and what they've experienced.

Patty Stott (53:12.21)

Yeah, so again, a little bit spoiled in the area. We do have some incredible centers for regenerative medicine around us locally, but also there's some around the nation as well and some people do fly out. Now I hear the controversy of, they should be able to see anyone in regenerative medicine, and then the other side of well they really have to see somebody that understands symptomatic hypermobility.

And I'll tell you, it depends on the patient. The patients that come into my office, I will be honest, I would want you seeing somebody that had a Benadryl IV drip ready because these specialists do, because they know that sometimes, hey, they're gonna have a weird wonky response. So I want that provider to be able to cater care. And that typically comes with somebody that understands the condition. So there aren't many out there. What I have seen is,

amazing outcomes if you figure out the cause. So if you're going in because you want to stabilize that area and we are also working on what is leading to that presentation, I have seen some amazing outcomes with people. If you go in thinking that regenerative medicine in and of itself is going to completely change everything,

you ended up there for a reason. Your spine is in that position for a reason. We absolutely, and sometimes it is just orthopedic and somebody has to realign you and inject and you're good. Typically it's not. Typically we have to know these factors that I talked about before. And it's, like I said, it's such a long list of what it could be, but you just have to see somebody that has open eyes and can figure out.

what your individual problem is, and just make sure that you're addressing it around the regenerative therapy as well.

Linda Bluestein, MD (55:00.856)

Mm-hmm. Yeah, we definitely need more data about that too, and that's really, really challenging. So yeah. What do you think in terms of the percentage of your patients who recover sufficiently from upper cervical instability so that they do not need surgery?

Patty Stott (55:17.514)

Yeah, that's a tough question for me because I've only made, and I see a lot of people with upper cervical instability, and this is where it gets a little confusing because I've only referred three people out for consults who have not had surgery, but just to be monitored and checked because they were quite unstable. If you talk to Susan Chalala, who deals with, she works very closely with Dr. Patel, her number is going to be very different.

I talked to another provider out in California, and we've talked to other people and we kind of had this conversation. And if we look at the grand scheme of things, that whole spectrum, mild to severe, we're typically seeing 95% of our patients not need any sort of surgical interventions to stabilize, that they can do well with rehab techniques. But also we're the people that are looking at the mild, like right away.

So again, it's really hard to give that number, but I would say if you go see a person that has the skills to help you, 95% of the people that are gonna come in and out of that office probably do not need surgery.

Linda Bluestein, MD (56:24.83)

That makes sense. And what do you wish that I had asked you that I didn't ask? Or was there anything else you wanted?

Patty Stott (56:30.982)

You asked it. You actually asked it. It was we had gotten to the because I get asked all the time, like, why doesn't my C1 stay in place? Or, you know, just the comment, it doesn't stay in place. And that's what I just wanted to reiterate through our talk, too. So I'm glad that we elaborated on some of the concepts, too, is that it's really important to find out why you're unstable, period. Like you, you can work on the stability itself. But I love my patients. But at some point, I don't want you to come back. I'd really like to figure out.

Linda Bluestein, MD (56:50.643)

Mm-hmm.

Patty Stott (56:58.778)

what the thing is that's causing the presentation of your symptoms.

Linda Bluestein, MD (57:03.27)

And that's probably true for everything. I mean, if you get to the root cause, you're gonna have a much more successful outcome than if you are just putting a bandaid, which I think is part of the problem with most medical practices and most physical therapy, or a lot of physical therapy practices, where visits are a lot shorter, and so they're not really able to look for root causes and try to address those.

Patty Stott (57:28.258)

Absolutely, yep.

Linda Bluestein, MD (57:31.01)

All right. So I always like to ask everyone for their favorite hypermobility hack. Do you have any hypermobility hacks that you can share with us?

Patty Stott (57:41.914)

I have a ton, but I'm going to start with this because I'd like to continue this in a future conversation. You have to unhinge from the thoracolumbar junction. So that area is where the diaphragm is. Please stop collapsing on top of it. Please stop. See, and it's funny because whenever I tell my patients I'm in that position, I'm like, oh darn. So it can lead to a lot of different problems in people. So open that area up. It opens the diaphragm up.

we can get into why the diaphragm is so important at another time. But that in itself, we actually, that movement we recommend with a number of different coexisting conditions that exist with EDS. So we do not want you to hinge at that joint. Please do not collapse at the diaphragm at the lower part of the ribs. And I tell people to like, don't worry about like sitting and correcting it. You know, it doesn't have to be active. If you're first trying to work on it, how do you lay down on the couch? How do you lay down in a recliner chair?

Linda Bluestein, MD (58:37.undefined)

Mm.

Patty Stott (58:38.722)

Can you open that up there? Be passive first, be passive first. Be as, like I always like to start as lazy as possible until somebody's feeling better to be able to do these things actively. But that would be, and again, we can have more conversations on the why that's so important, but please stop crushing your diaphragms.

Linda Bluestein, MD (58:58.958)

and where can people find you online?

Patty Stott (59:02.582)

So right now it's my website is www.elevationwellness.co. We do have some other stuff coming out in the future that we're trying to put together just to get some more education out for patients. But for now that's my clinic site. So not too much information on there outside of me, but that's where I am.

Linda Bluestein, MD (59:21.978)

Okay, great. Well, I'm so excited that we finally got to have our first conversation. It was a very long time coming, so hopefully the second conversation will happen a lot faster than this first one did in terms of getting that scheduled. So it was so great to chat with you, and I'm so grateful to you for coming on and sharing your wisdom with the listeners.

Patty Stott (59:26.462)

Yes.

Patty Stott (59:34.902)

Yeah, absolutely.

Patty Stott (59:45.642)

Yeah, thank you so much for having me. I just, I appreciate being able to kind of expand on the topics. And you know, this is how we're going to learn as somebody else knows more than me about something that we just talked about and they're going to run with it. It's going to be great.

Linda Bluestein, MD (59:51.489)

Mm-hmm.

Linda Bluestein, MD (59:58.274)

Yeah, yeah, absolutely. That's what I really enjoy about doing this because I get to talk to incredibly smart people who are all, you know, it's like the, that Indian, I don't know if it's a, it might be a fable or something with the elephant, right? And we're all touching a different part. And so I, you know, everyone touches a different part of the person with symptomatic joint hypermobility and it addresses things in a little different way. And so I love getting to talk to people who are.

trying different things and seeing different things and have different expertise. It really, really helps all of us, I think, to be able to provide better care when we can learn from a lot of different people.

Patty Stott (01:00:35.69)

Yeah, and thank you for putting this all together, really.

Linda Bluestein, MD (01:00:39.97)

You're very, very welcome.

Well, thank you so much for listening to this week's episode of the Bendy Bodies with the Hypermobility MD podcast. Help us spread the word about joint hypermobility and related disorders by leaving a review and sharing the podcast. This really helps raise awareness about these complex conditions. Visit bendybodyspodcast.com and follow us on Instagram at Bendy underscore bodies. We love seeing your posts and stories. So be a buddy and engage our community by using the hashtag BendyBuddy. That's hashtag B E N D Y.

B-U-D-D-Y.

You can also find me, Dr. Linda Blustein, on Instagram, Facebook, Twitter, or LinkedIn at hypermobilityMD. This podcast is for general purposes only and does not constitute the practice of medicine or other professional healthcare services, including the giving of medical advice. No doctor-patient relationship is formed. This is not intended to be a substitute for professional medical advice or diagnosis. Do not disregard or delay obtaining medical advice for any medical condition you have. The opinions shared are that of the guest and do not necessarily represent the views

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