66. Codifying Upper Cervical Instability with Leslie Russek, DPT, PhD

Episodes have been transcribed to improve the accessibility of this information. Our best attempts have been made to ensure accuracy,  however, if you discover a possible error please notify us at info@bendybodies.org

00:00
Leslie Russek, DPT
We don't want either the clinicians or the patients to panic and go, oh my God, there's something I've got a brain tumor. But we want them to step back and say, okay, do I need to take some special steps with this person? And we identified some red flags based on the symptoms and the history. And that would indicate that I need to be careful with my physical exam. So if this is some who's having seizures, I'm not having them move their head around. I'm not pushing on their neck. And then we also identified red flags in the physical exam. So if I do a test and I get a certain result, then that might indicate, okay, there are some structures that are being stressed that make this a more urgent situation than another patient who may be having, let's say, pain and headaches, but not neurological involvement. 

01:04
Dr. Linda Bluestein
Welcome back to the Bendy Bodies podcast, bringing you state of the art information to help you improve your well being, enhance your performance, and optimize career longevity. This is the Hypermobility MD Linda Bluestein, and unfortunately, co host Jennifer Milner is unable to join us. Today. I started Bendy Bodies to provide accessible information about joint hypermobility. Combining my medical education and personal experiences enables me to treat and coach patients and clients to optimize their quality of life. This information is for educational purposes only and is not a substitute for medical advice. Our guest today is Dr. Leslie Russick, DPT, PhD Professor Emeritus at Clarkson University and practicing orthopedic physical therapist specializing in hypermobility syndrome, fibromyalgia, headache, and chronic pain. Hello, Dr. Russick, and welcome to Bendy Bodies. 

01:55
Leslie Russek, DPT
Thank you for inviting me. 

01:57
Dr. Linda Bluestein
I should say, welcome back to Bendy Bodies. We're so excited to chat with you today. And we spoke with you in episode 52. And at that time, you described your background and experience and gave us some fabulous recommendations about managing jaw pain, something that we see so incredibly frequently with people who have symptomatic generalized joint hypermobility. And so I will definitely refer the listener back to that episode to learn more about you and your background. But today we are going to cover upper cervical instability, or UCI, a frequently misunderstood and crucially important topic for people with generalized joint hypermobility. Dr. Rusick you and an international team of physical and physiotherapy clinicians and a symptomatic generalized joint hypermobility expert, Rheumatologist, recently published Expert Consensus Recommendations for Screening, assessing, and managing patients with UCI associated with symptomatic Generalized joint hypermobility. This article will be linked in the show notes and is titled Presentation and Physical Therapy Management of Upper Cervical Instability in Patients with Symptomatic Generalized Joint Hypermobility. 

03:05
Dr. Linda Bluestein
International Expert consensus recommendations So we are thrilled to chat with you. Can you start out by telling us what is UCI and why is this so incredibly important for people with symptomatic generalized joint hypermobility? 

03:17
Leslie Russek, DPT
So, UCI is upper cervical instability and it includes both cranio cervical instability, CCI, and atlantoaxial instability AAI. And we debated about the terminology. Sometimes people will use CCI to relate to both of those joints, but technically, it refers to cranioservical. So the head on the first vertebra. But we wanted to talk about both of them. And some literature now is starting to use the term UCI, and it's really important for people with symptomatic joint hypermobility because we think it's really common, and it contributes to things like headaches, jaw pain, other problems. When it's mild and when it's severe, it can be really disabling. So it's common in the mild form, not so common in the severe form, but very disabling. And it's a complicated type of patient, complicated presentation, difficult to diagnose. And we felt a lot of those people were getting missed, overlooked, maybe misdiagnosed, and not ideally managed. 

04:22
Dr. Linda Bluestein
Sure, that makes sense. And how did this journal article and expert consensus recommendations come about? 

04:29
Leslie Russek, DPT
So, a couple of years ago, there were a group of doctors who wanted to develop a protocol for using cervical traction to treat cervical instability. And I don't know how they got my name, but they invited me to join, and then I invited a couple more Pts. And the Pts were concerned that cervical traction certainly can decrease symptoms, but it might not be a good treatment overall. And then we realize we have no idea what good treatments are. There's nothing in the literature for this population. But there are a lot of people who know a line. In the United States in particular, those people are really spread out, and we haven't had a way of communicating in Europe. So, London, there's a cluster of clinicians and researchers that work together on hypermobility. There's another cluster in Denmark and Belgium, Australia, but in the US. We really don't have any physical therapy based research labs, academic programs, or any way for the clinicians, the expert clinicians, to communicate. 

05:30
Leslie Russek, DPT
So I started getting a team together, and were talking about, well, what would you do for UCI? And I realized that if were going to be talking, we needed to share this information. So I reached out to Alan Hakeem, Rheumatologist and the Director of Education at the Ehlers Don Lowe Society, and James Simmons, who coordinates physical therapy activities and research in London, and asked if they thought this was publishable. They were really excited about it. And then the timing worked out really well in that the Frontiers in Medicine Journal was putting together a special topics on Ehlers Donlos, and they invited me to submit something. And so the timing was good to submit this for that particular article. And it's not research. It's a consensus. It's a group of experts, researchers, and clinicians talking together. But it's the best knowledge that we have to date, and it's a starting point, and we should be sharing the best available knowledge until we have research that's better. 

06:32
Dr. Linda Bluestein
Oh, my gosh. I'm so glad you explained that. I feel like that's so true in clinical practice because we don't have literature and research to tell us how to handle so many things. And so we have to learn from each other. And this is just an incredible thing that you all put together. I want you to explain, if you would, the difference between highly suggestive and common symptoms. 

06:57
Leslie Russek, DPT
Sure. So when we as clinicians, as physical therapists, learn diagnostic tests, we learn that some are what we call sensitive. That is, if you have the condition, the test will definitely be positive. And some are specific, which is that if the test is positive, you almost certainly have the condition. And these are variables that are known for many tests that we use as physical therapists. But we don't know this for any of the tests that we use for upper cervical instability. But clinicians have an intuition about this that as I was talking with this team of experts, some people would say, oh, well, but they always have occipital headaches. But occipital headaches can happen for a lot of reasons. So it doesn't prove they have upper cervical instability. Whereas if they have tingling in their face, that's less common. Fewer people with upper cervical instability will have that. 

07:49
Leslie Russek, DPT
But it definitely is very suggestive. So it helps us to make the diagnosis. And this is important because some of the signs and symptoms can be for many different conditions. Some of them could indicate Pots, some of them could indicate a jaw problem. And so we don't want people to be misled by thinking that, oh, if I have jaw pain, I have cervical instability. But we do want people to know that if you're having pseudoseizures or blacking out and it's not Pots, that suggests upper cervical instability. So we don't have the research to prove that these tests are sensitive or specific. But intuitively, we agreed that certain tests tended to be more common or more diagnostic. 

08:32
Dr. Linda Bluestein
Sure, that makes a lot of sense. And I also really like the way you broke down into musculoskeletal, UCI versus neurological UCI. Could you explain about sure. 

08:45
Leslie Russek, DPT
We all know that there are different types of presentation with UCI, and we debate it as a group, different ways to classify it. Would it be mild, moderate, or severe? But we finally felt that the most useful distinction was this musculoskeletal versus neurological. And this is because the musculoskeletal tends to respond well to conservative treatment like physical therapy. So musculoskeletal means that the symptoms are due to muscles and joints causing pain. And so things like headache, jaw pain, maybe feeling like you have a lump in your throat are things that we see commonly and in this musculoskeletal pattern. And then there was a group of patients that had a very different presentation with more neurological signs and symptoms suggesting that neurological structures were being affected. So seizure like activities or drop attacks or feeling unstable, we call it boat rocking. Instability, which suggests that the brain stem is being compressed. 

09:52
Leslie Russek, DPT
So some of these symptoms, the neurological symptoms, are from compression of the brain stem. Some might be compression of cranial nerves at the base of the brain. Some might be compression of the blood vessels that bring blood to the brain or that drain blood out of the brain. And so these patients have more what we call neurological signs, and they tended to be more challenging to treat. 

10:20
Dr. Linda Bluestein
Sure. It was interesting because I posted on social media that I was going to be interviewing you, and I've done that a number of other times and sometimes get some questions. I got a lot of questions this time, a lot of things that people wanted to know. And one of the things that someone asked was why in this paper, you limited the conversation to upper cervical instability and did not include lower cervical instability because they were commenting that they thought that was also common. 

10:47
Leslie Russek, DPT
It is also common. And the reason that we did that was so that it wouldn't be overwhelming. So lower cervical instability tends to either cause pain into the arms or musculoskeletal pain. And some of the same principles will hold for the musculoskeletal upper cervical instability. It can also compress the spinal cord in the lower cervical spine, and so they may present with some of the same neurological problems, like the boat rocking instability or feeling wobbly on their legs for reasons other than just hypermobility. But we felt that upper cervical instability was already an overwhelming topic to try to simplify, and it took us a really long time to simplify it, and we felt that was an important starting point. So that lower cervical instability is really important as well. Maybe a next step for us to take in the future. 

11:50
Dr. Linda Bluestein
Sure. And I thought it was really good that you also pointed out about confirmation bias and how important it is when you're asking these questions, to ask them in the right way. And I know I've experienced that when I went briefly on a Facebook group that was specifically like for this topic. And I started like, oh, man, the base of my skull hurts. And I started to kind of myself feel more insecure about what I was experiencing, and, oh, maybe this is something that's more serious, or something like that. Can you talk about that a little bit? I think that was a very important point that you all made. 

12:33
Leslie Russek, DPT
Yeah, it's a really delicate balance that we don't want to encourage patients, any type of patient, to overreact, because not everything is a crisis. And so if we list out symptoms, for example, it encourages people to agree with them. It's like, oh, yeah, I feel that, and I feel that. And sometimes it's better as a clinician. Just step back and let the patient tell their story and tell what's important to them so that it is not being biased by what I think might be going on. And it is a really delicate balance because sometimes patients don't know what to share. So, for example, a lump in the throat, they're coming for headaches. And why would they think that trouble swallowing their medicine is related? And sometimes we do need to draw that out from them, but it's a delicate balance between drawing things out and letting them tell their story on their own. 

13:40
Dr. Linda Bluestein
Sure. And I also thought it was really excellent how you talked about the different levels of irritability. Could you talk about that a little bit and explain how that information should be incorporated into clinical practice? 

13:54
Leslie Russek, DPT
Yeah, we felt that was really important. It came up over and over again that people would say, oh, I wouldn't do that test that would flare people up much too badly, or I wouldn't do that treatment that would make people worse. And that's when we realized we really had to have tears. And I'm really proud of this aspect of our model that we use the patient's subjective information and history to get a preliminary sense of irritability, and we use that information to choose which physical exam tests to do. As a physical therapist, I learned, okay, these are the tests that you would do for instability. You do neck range motion on everybody, but it turns out that if somebody's really irritable, neck range of motion can completely flare them up. And so we have to have a different criteria for identifying what tests are even safe to do. 

14:47
Leslie Russek, DPT
And so we spent a lot of time figuring out how or what criteria tell us whether a condition is very irritable and then using the subjective history, their symptoms, to decide what tests are safe to use. So what tests can we do on everybody? So you can look at their posture. You can look at posture on everybody, but you might not want to have everybody moving their head around, because if their condition is really irritable, then it could make them much worse, and that could last for weeks. So it's a little bit different than I might do with an unstable shoulder. So an unstable shoulder as a PT, there are some tests, they're called provocation tests that you do something and the patient goes, ow, that recreates my pain. And you're like, okay, so now I understand what's causing your pain, but the shoulder typically will hurt for a few minutes, and then it'll go back to how it was before. 

15:43
Leslie Russek, DPT
The neck is more sensitive, especially the neurological structures, and if you flare them up, they could stay flared up for weeks. 

15:50
Dr. Linda Bluestein
Okay. And you also talked about yellow and red flags. And can you share how we should use that type of information both in the history and in the physical exam? 

16:01
Leslie Russek, DPT
Yeah, and that was the yellow and red flags are one of those things where we wanted the model to be as simple as possible. And so we took everything out. But then people are like, well, but you have to have yellow and red flags. And so we put them back in. So yellow flags refer to psychosocial factors that may influence a person's condition. So it may be things like anxiety, depression, psychiatric issues, financial issues, stress, whether they have support at home. And we know from research that these yellow flags can indicate a poorer response to treatment if they're not addressed, unfortunately, with this population, because they often have these psychosocial issues, sometimes their physical complaints are brushed off as, oh, well, you're just too stressed, the reason why you're fatigued or the reason why you feel dizzy and lightheaded. And we felt it was really important to say, yes, these people do sometimes have psychosocial factors that can aggravate their condition. 

17:05
Leslie Russek, DPT
And these psychosocial factors need to be addressed, but they are separate from what's physically going on, and they compound, they add to. And so we felt it was important to identify them, address them. Some patients, if they have a really sensitive nervous system because they're highly stressed, treatment is not going to work very well until you calm that nervous system down. And so they may need to have these psychosocial factors addressed before they're able to respond to or tolerate physical therapy. The red flags refer to things that are cautions, things that we might worry about, and so they might be other diagnoses things like a stroke, that obviously if somebody comes in and they've got facial paralysis and they have a stroke, then that person needs to get to a hospital right away. And so there are certain things, certain conditions that are very urgent. 

18:02
Leslie Russek, DPT
Also, if it's cervical instability, but it's really severe, then that's a red flag. So if the person is having pseudo seizures, so things that look like epileptic seizures, but they're not true epileptic seizures, they don't have the same brain pattern, then that indicates that the nervous system is being stressed really severely. And again, it's urgent. It may well be the upper cervical instability. It's not a different condition, but it indicates that this is severe and we need to address it. And so the red flags are signs that might not always, but might indicate that this patient needs special care. For therapists who are not familiar with hypermobility or upper cervical instability, they may say, this is more than I'm ready to deal with. Somebody who's having seizures when they turn their head is more involved than my knowledge base. I need to send them to a physical therapist who specializes in this. 

19:00
Leslie Russek, DPT
Or if you are knowledgeable, you may say, this person needs to see a neurologist or a neurosurgeon. I can still do some treatment to teach them how to take care of themselves, to protect themselves, but they've got something going on that needs to see another provider. And so those red flags are alerts that you may need to get additional expertise with this patient. One important thing about the red flags is that it's always, well, it depends. And so we debated these red flags over and over again, like somebody passing out. Well, that's not a good thing. But then one of the participants in our group said, well, but I deal with aerial gymnasts, and if they go upside down and they're hanging upside down and they pass out, that's not such an unusual thing. And so everything always depends. And so if a person's just passing out, then it's probably a bad thing, but there might be an explanation for it. 

19:58
Leslie Russek, DPT
Right. And so we don't want either the clinicians or the patients to panic and go, oh, my God, there's something. I've got a brain tumor. But we want them to step back and say, okay, do I need to take some special steps with this person? And we identified some red flags based on the symptoms and the history, and that would indicate that I need to be careful with my physical exam. So if this is somebody who's having seizures, I'm not having to move their head around. I'm not pushing on their neck. And then we also identified red flags in the physical exam. So if I do a test and I get a certain result, then that might indicate, okay, there are some structures that are being stressed that make this a more urgent situation than another patient who may be having, let's say, pain and headaches, but not neurological involvement. 

20:52
Dr. Linda Bluestein
And I feel like because of all of those nuances, it makes it even harder for the person who might be struggling with this to find a neurologist or a physical therapist who really will take the time to listen. More so the neurologist than the physical therapist. The physical therapist probably will take a pretty detailed history. And the neurologist, I feel like oftentimes, especially in these, what often are young females, I feel like it's so common for people to have their symptoms disregarded and dismissed. And do you have any suggestions for someone who's having difficulty finding the care that they need? 

21:33
Leslie Russek, DPT
Yeah, that is a really challenging problem. And it's even worse because if the neurologist does anything, they're going to do an MRI and a CT scan, but those are going to be done lying down with the head perfectly in neutral, and everything's going to look fine. Instability is what happens when you're upright and you can't control the motion. And that's an important distinction. So being hypermobile is different than being unstable. So hypermobility means you have too much motion. So if I can turn my head 110 degrees each way, that's too much motion. But it's only unstable if the muscles are unable to control the motion, if the muscles are allowing things to wobble around. And you can't see instability on an MRI, especially if the patient is lying down with the head supported. And sometimes the neurologist will do some of these imaging tests which are not appropriate, and they'll interpret the negative results and say, oh, there's nothing wrong with your neck, and then go on to say, oh, you're just overreacting, you're a young female know, you're just hysterical. 

22:42
Leslie Russek, DPT
And the problems that you just mentioned of not being believed, finding a good clinician is really challenging. So the Ehlers Don Lowe Society does have a list of Eds knowledgeable clinicians, so physicians and physical therapists and occupational therapists, but there aren't nearly enough people on that list. And so there are big deserts where there's no appropriate care. So I don't think I have a neurologist or neurosurgeon knowledgeable about Eds within 500 miles. And so what do I do with a patient that I think is unstable and the local neurologists are doing the supine MRIs saying, looks fine to me. And some people will travel for care, especially if they have more severe involvement. And I think our model helps those people identify whether they fit into the highly irritable category, because you can have a lot of pain, but it's not highly irritable. It's fairly constant, it's more controlled. 

23:52
Leslie Russek, DPT
You are more likely to be able to manage it through exercise and body mechanics. But I think the article helps people figure out, well, which category am I in? Should I travel to see a specialist or should I first spend six months working on exercise and body mechanics? But I don't have a good answer to the lack of clinicians other than to access the Ehlers Don Lowe's Society list and to ask people who are knowledgeable. If you have a physical therapist who's knowledgeable about hypermobility, they probably know the local doctors that are knowledgeable, and you can build a network that way. 

24:33
Dr. Linda Bluestein
Absolutely. And I think that it's just so fascinating that nowadays I want to thank you for making this article also open access, because that means that anybody can access it, not just people who are working at a teaching institution or something. And I think a lot of people don't realize that's a newer evolution in scientific literature. And it is really important because it does allow then patients to be able and their families to be able to read these things and try their best to interpret, like you said, the irritability type information and make some better, more informed choices about what they might do or where they might go right. 

25:16
Leslie Russek, DPT
And to share it with their clinicians. We've been hearing that patients are printing it out and bringing it to their doctor's appointments. And it's thanks to the Ehlers Don Low society and Dr. Hakeem's Facilitation that it is open access. They sponsored it to make it available, open access. So with appreciation to them for doing that. But we've been getting lots of positive feedback from patients. It has almost 23,000 views already, which is just mind boggling, but it shows how hungry people are for knowledge. Yes, right. 

25:57
Dr. Linda Bluestein
And I've accessed this article multiple times online, and I have seen that count go up, and within 24 hours there was a huge number of views and shares and that kind of thing, and it's just climbed so incredibly quickly, which definitely tells you that there's a lot of people who are interested in this information. And I do think most of it is patients that have been struggling to get the right imaging and things like that. Is there anything that you think people can do? Let's say they're working with another type of physician that maybe is open minded but not super knowledgeable in terms of more advanced imaging, because it seems a little bit like different neurosurgeons, like different kind of imaging. Some are going to want upright MRI, others are going to want rotational imaging. Any thoughts about that? 

26:51
Leslie Russek, DPT
So we deliberately chose not to address the imaging issue. There are actually a couple of recent systematic reviews looking at imaging for upper cervical instability. So there are some publications on that make recommendations of the neurosurgeons who specialize in cervical instability in hypermobile patients. There are differences. So some do want to see the upright MRI because they want to see how gravity loads both the musculoskeletal system but also the neural system inside. Other clinicians prefer the supine because it can be more precise, but that's usually after they've already made a diagnosis and they're making decisions about surgery. So there are some good articles out there that talk about the imaging, and we chose not to address that because we already had a lot on our. 

27:47
Dr. Linda Bluestein
Plate with the conservative care that makes sense. And we can share those other articles also in the show notes, which I think people would probably really appreciate. And yes, printing out articles and highlighting certain relevant sections because everyone's busy and approaching that in a way with your clinician of saying, I'm curious about this. This is something I think might apply to me is really important because none of us like to be felt like we don't know what we're doing or anything like that. So I think it's really important to approach someone in a really respectful way with this information, with these articles or whatever that you bring in to approach them and say, I'm curious about this. Would you be willing to take a look at it? Yeah. 

28:35
Leslie Russek, DPT
And I find the best clinicians are often the ones who are open minded, who are willing to say, I know a lot about many things, but I don't know everything, and if there's something I don't already know about, I'm interested in learning. So I find it's usually a good sign. When a clinician says, I don't know a lot about that, but I do want to learn more, it's usually a sign that they really do know a lot, so that's a good sign. And I do have a patient summary based on the article that's available on my website that focuses on what the patient feels and things that they can do to take care of themselves. So for people who are overwhelmed by the full academic article, there's a patient summary that's a little bit more layperson terminology. 

29:25
Dr. Linda Bluestein
Thank you so much for doing that. That's really amazing. And we can link that in the show notes as well, so people can easily access all of these things that we're referencing. Great. So getting back to the article, what interventions do you recommend in the article? And I know you broke those up into different categories based on irritability. Could you discuss that a little bit? 

29:50
Leslie Russek, DPT
Sure. So just like we used their basic irritability based on their symptoms to decide what physical tests we felt were safe to do, after doing the physical test, we reassess irritability and decide what interventions are safe to do. And we graded the interventions on three levels. One level, which is we felt was safe for everybody, so could be implemented even with patients who have extremely irritable condition. Another level, which was for people who had moderate instability, and then another set of interventions for people with milder instability. And the clinicians, or the clinicians and researchers who compiled the recommendations treat a wide range of patients. So we had some clinicians who treat patients who are bedbound, who may be going in for fusion surgery, but then on the other extreme, we had some clinicians who treat professional acrobats who are high level athletic performers. And so treatment range is a huge spectrum and what's appropriate for that acrobat might not be appropriate for the person who's in bed. 

31:13
Leslie Russek, DPT
So we have those tiers of interventions. The interventions for the most irritable person tend to avoid directly affecting the neck because the neck is irritable. And so we focus on things like lining up the whole body, having a stable foundation, the feet, the hips, the low back, stable foundation for the head and neck. Working on body awareness in the lumbar spine so that people have more stability in their lumbar spine body mechanics so that when they're doing simple things like brushing their teeth, they're not leaning their head forward, but hip hinging and keeping the head stable. So there are certain interventions, a lot of education for patients that all patients would benefit from. And then the next level up is when we might start doing some direct intervention to the neck, so we might start doing some body awareness exercise or proprioception exercise. So we know that people with hypermobility have poor proprioception or body awareness. 

32:27
Leslie Russek, DPT
And we think this is important in the neck because if you don't know where your head is, it's more likely to wobble around, you're not going to have good control over the movement. And so you can start these proprioception exercises at this second level and start doing some thoracic, upper back strengthening and a little bit of neck exercise. And then for people who have the. Mildest form of instability, they can do more aggressive exercise. And our experience shows that if you have a person with high irritability and they're responding to therapy, the irritability will decrease, and then they'll be able to do more. And if they continue to improve, the irritability will decrease some more. And so people aren't stuck at a level of irritability, because, remember, instability is the inability of the muscles and the nerves that control those muscles to maintain stability. So being hypermobile doesn't mean you're unstable. 

33:28
Leslie Russek, DPT
You can become stable through training the muscles and the nerves. And people will change from being highly irritable to moderate irritability, to low irritability, to being relatively symptom free most of the time if they're responding well to therapy, definitely. 

33:47
Dr. Linda Bluestein
And one thing I feel like in our current healthcare, which often is so production focused and getting more throughput, I feel like the differential diagnosis is something that often gets less thought about. We evaluate somebody, and we come up with what we think the working diagnosis. Right. And we don't really spend a lot of time thinking about the differential diagnosis, but you talked about that as well. Conditions that should be considered in the differential diagnosis. Can you talk about that a little bit? 

34:19
Leslie Russek, DPT
Sure. That just because somebody looks like they have instability doesn't mean they do. And it doesn't mean that's the only thing that they have, they could have other conditions as well, and that can make it complicated. So Pots, for example, many people with hypermobility have Pots. Pots could make you lightheaded. It can make you have drop attacks where you just collapse on the ground. And so you may have Pots in addition to cervical instability, but also you may have functional neurological disorder. So that's when the nervous system is not functioning properly, so there's the sensory version, which is we call it nociplastic pain, where the nociceptive or pain processing nerves are not communicating well, and you have pain. That's a processing error, which is different from pain due to tissue damage. And people who are hypermobile often have both. And the functional neurological disorder is the same, but on the motor side, where the motor nerves are not functioning properly, and people may have abnormal movements from that. 

35:29
Leslie Russek, DPT
And if we don't recognize these either alternate or coexisting conditions, then we're not going to be providing the best intervention. And so we always want to keep in the back of our mind of, okay, it looks like somebody with cervical instability, but might it be something different, or might they also have something else going on? And especially if the patient's not responding well to therapy, we want to pull those hypotheses back up and say, okay, what's going on? Pots is a good example that sometimes patients who have Pots who don't respond to our usual Pots management, it's because they have cervical instability. And so if you're managing their Pots and it's just like they're not getting better the way they should be getting better. It's like, okay, is something else going on? And then considering maybe they've got cervical instability and that's aggravating their pots, and maybe I need to treat the cervical instability for their Pots to get better. 

36:29
Leslie Russek, DPT
It's all very complicated, and there's a bit of trial and error to see, well, let me try this and see if they get better. And if they do, that's great. If they don't, okay, I need to step back and reassess my hypotheses. 

36:43
Dr. Linda Bluestein
It is so complicated, and I feel like for so many people, including myself, you could be on a certain trajectory and you have a certain response maybe to, I'm in physical therapy right now myself, and then I'll start getting better, and then I'll do something. I'll fall or I'll move my shoulder in the wrong way or something. And now all of a sudden, things are worse. But it has nothing to do with the actual therapy that has been prescribed by the physical therapist. That aspect of things is going really well. But with people with symptomatic, generalized joint hypermobility injury is something that can happen so commonly with just everyday tasks. I feel like it can be really difficult to sort out improvement and that kind of thing. Do you have any kind of an app or anything like that you use with your patients to help them track these kinds of things? 

37:35
Dr. Linda Bluestein
Because I find even myself, I go back for another appointment and I'm trying to remember what happened and how things were going, because if it's a couple of weeks in between appointments, it's hard to remember all that, right? 

37:46
Leslie Russek, DPT
Yeah. There are some wellness apps. There are some wellness journals that have, let's say, a page per day, and they ask you to rate your symptoms each day. There are some pain management apps that are similar that they ask you to rate your primary symptoms and to track what might be causing that change. There's not one particular tracking app, though, that I recommend to patients. Keeping a journal, though, can be helpful. And like I said, you can get journals off of Amazon that have a page per day, and they have certain symptoms that you can keep track of. And you bring up a really important point, which is when you're hypermobile, you're vulnerable to flares. And as a physical therapist, I'm not going to make a hypermobile person never have pain again. But what I hope to do is give them a toolbox so that when they tweak their shoulder, they go, oh yes, that's the shoulder thing, and I know what to do. 

38:47
Leslie Russek, DPT
I can do this, and this. That okay, I need to rest it for a while. I need to go back to my really basic exercises before I start moving it and maybe put a topical on or a tens machine. So having a toolbox and I actually have a handout that I give my patients, especially when I get to the point where I'm discharging them, which is a flare management plan where they write things out because people will forget that they've got a Tens machine. And they'll say, oh, I flared up and my back hurts. It's like, well, did you use your Tens machine? They're like, oh, I completely forgot. And so writing it down, put it on your refrigerator, because when you have a flare, you're not going to think clearly. You're not going to remember it's like, oh yeah, I've got my Tens machine, or oh yeah, that particular topical works for that particular pain. 

39:35
Leslie Russek, DPT
Or even I've got those finger splints. Where do I put my finger splints? And so having a toolbox, and it really does help to write down what's in your toolbox. Some people will have a notebook. It's like, these are the things I do for my shoulder. These are my shoulder exercises when my shoulder flares up. This is what I do for my neck when my neck flares up. And so keeping a notebook can be helpful as well. 

40:00
Dr. Linda Bluestein
Yeah. Keeping a notebook or even I had a very major surgery in 2011, and I was very glad that I made I mean, I literally just took a single piece of paper and I was writing down I did. Five minutes on the treadmill at half a mile an hour and then the next day, five minutes at 0.7 miles an hour or whatever. And it really was so helpful because there were points where I thought I'm not progressing. And I would look back at that single piece of paper and I would look at the notes at the top, and I would go, oh my gosh, I totally forgot that things had been that bad. So I think another point of keeping a journal like this is that it's really easy for us to forget how significant our symptoms were and how much progress we've made, and that can be discouraging. 

40:48
Dr. Linda Bluestein
So if we can look back and see, oh, no, we actually have made progress, that can really help us to keep going and to keep us compliant with our home exercise program, for example. Right. 

41:00
Leslie Russek, DPT
And to remind you that you've had flares before and you've worked through flares before, and you'll work through this flare too, it might take a few weeks or a few months, but yes, things can get better. And if you do the right things will get better. Sometimes it takes time, and sometimes knowing how long it takes. So if you're having, let's say, a Pots flare, it may take weeks to feel better. If you're having a mass cell flare, it's probably going to take months to feel better. Even when you're doing the right things for yourself, it may take months. And reminding yourself, it's like, okay, it's only been one month. And my PT told me it's going to be at least three to six months. We're okay, we're on schedule and a journal can help you with that as well. 

41:44
Dr. Linda Bluestein
Yeah, definitely. So coming up with these recommendations had to be, I would think, really challenging. It's a really amazing thing that you all did. As soon as I heard about this a little bit, but then as soon as I saw it, I was like, wow, this is really incredible. What was the most challenging aspect of developing these recommendations? 

42:04
Leslie Russek, DPT
Well, from a logistic point of view, just scheduling people from Sydney, Australia to California, finding a time zone that works. And one of the ways that we dealt with that is that we had teams. So I was the team leader in the United States, there was a team leader in London, a team leader in Australia, and we would have meetings with our group more often and then the team leaders would come together with those people who could make the meetings to share with the broader group. So just the logistics people were so generous with their time. Some people came at six in the morning, some people came at ten at night, and it just shows the commitment of the people involved. But coming up with a model was really challenging. We went through a lot of iterations of different people. So in London they have their Spider model, which is coming out now, where people have symptoms in different systems and they wanted to use that for this. 

43:05
Leslie Russek, DPT
And it's like, well, it's a great model, but it makes things even more complicated in ways that are not related to the cervical instability. And then people said it's like, oh, the model is too complicated, and so I simplified it and then they said, well, but you have to put this in and then we put things back in. And so it's a little like herding cats that they would say, well, we want it to be bigger and smaller at the same time, right? And so trying to reiterate it's like, okay, this is what I'm hearing from the group. Is this what you want to do? But everybody was so committed to the outcome of coming up with these recommendations that people were patient. And we just went through things over and over again until we streamlined it to the final two page flowchart that we ended up with the boxes. 

43:55
Leslie Russek, DPT
We wanted to make it user friendly so you could look at a box and say, oh, these are the symptoms, or the tests or the treatments. And it was just an amazing team to work with. And so I was really fortunate to have such a group of people who were so committed. 

44:14
Dr. Linda Bluestein
And to me that's a really amazing thing. And for people to understand that a lot of these clinicians are in private practice, so they are spending all this time and they're getting no compensation for it whatsoever. They are doing this on their own free time, writing an article is time consuming anyway. But then coming up with all these recommendations in order to then do the incredible work of writing the article, it really is incredible. And I think that I hope helps people have more hope for the future, that we have clinicians that are that passionate about helping people with symptomatic generalized joint hypermobility. 

44:56
Leslie Russek, DPT
Well, it's like the time that you're putting into having the podcast, right, that we really are fortunate to have such a committed group of healthcare providers who are so devoted to their patient populations. 

45:12
Dr. Linda Bluestein
Yeah, definitely true. And for clinicians that are listening to this conversation, how do you think that they would best use these recommendations? And are there any caveats that you want to add? 

45:25
Leslie Russek, DPT
So the recommendations are pretty self explanatory. There's even little checkboxes next to it where you can say it's like, okay, this person's hypermobile and this person, they've got the symptoms, it's irritable their neck. And so we tried to make it user friendly, but remember that these patients are complicated and there are so many it depends issues that is that a red flag? Well, it depends. Is that a sign of pots or of instability? Well, it depends. And so clinicians need to recognize that there's no recipe that works for everybody. And that's true with the interventions as well. Can you do this intervention? Well, it depends. You can probably do it with a patient with, let's say, moderate instability, but some patients won't tolerate it. And so you really need to be listening to the patient and realizing that each patient is individual. And so not trying to use it like a cookbook that works with everyone, but using it as a resource of ideas. 

46:31
Leslie Russek, DPT
And to help you figure out it's like, okay, well, if this isn't working, maybe I need to back off and look at the interventions that are appropriate for everybody. Maybe this person's got something going on that bumps them up in their irritability status. So being flexible in how they use it and realizing that it's not a cookbook. 

46:54
Dr. Linda Bluestein
Right. And for patients that are listening to this and are maybe accessing the whole article, if they want to try some things at home because they have difficulty accessing a knowledgeable physical therapist, they would start maybe, perhaps with some of those low things for people. The first set of recommendations that were for somebody with any level of irritability, that would be the best place to start. Right, right. 

47:23
Leslie Russek, DPT
So basic posture, body mechanics is good for everybody. And we think all patients would benefit from this. And patients who, let's say, have a milder irritability may progress more quickly through, but everybody would benefit from pay attention to where your head is. Pay attention to where your low back is, how you're sitting, how you're doing your basic activities, like brushing your hair, if you're turning your head to brush your hair or putting your hearing AIDS in that. These are basic principles that apply to everyone. But for patients who have or think they may have instability, if anything makes you worse, back off. Remember, you're an individual, and what works for other people might not work for you. So listen to your body. 

48:12
Dr. Linda Bluestein
Definitely. And was there anything that you wanted to cover that we didn't talk about today? We got so many great summaries about this article, so many great tips, and this is just such an incredible resource for people to have. Was there anything that you wanted to talk about that we didn't cover? 

48:31
Leslie Russek, DPT
No, I think your questions really covered a lot of content, so we really addressed the article. I do have a weekly lecture series that I do for patients. I call it my Hypermobility 101 Lectures, and they're available on Zoom. They're available on my website as well. If people are interested for patients who feel like they don't have experts around them who can educate them, they can get a lot of knowledge from the Hypermobility 101 lectures, and they're welcome to access those on my website. 

49:07
Dr. Linda Bluestein
Okay, great. And is there a fee for those? 

49:10
Leslie Russek, DPT
No, they're all free. So the recordings are on my website, and I do one lecture live a week that people are welcome to attend. And so it's an option for people to get education, get questions answered. I can't answer individual medical questions, but in terms of basic principles of what hypermobility is like and ways that people can take care of themselves, because ultimately, that's what we have to do as patients, is take care of ourselves, develop a toolbox that helps us to manage whatever goes out on our particular bodies. And so my goal is to give. 

49:54
Dr. Linda Bluestein
More people more tools, and that's just a wonderful thing that you're doing. That's really amazing. And where can people find you? 

50:04
Leslie Russek, DPT
Well, you can access my website, so I can give you the link to my website, and that's probably the best way to access me. My email address is there as well. 

50:16
Dr. Linda Bluestein
Okay. 

50:17
Leslie Russek, DPT
I'm semi retired from Clarkson University, so they won't find me at my Clarkson phone number anymore. 

50:24
Dr. Linda Bluestein
Okay, excellent. Well, you have been listening to Bendy Bodies with the Hypermobility MD. And our guest today was Dr. Leslie Russick DPT, PhD. And, Leslie, it has been so wonderful chatting with you. Thank you so very much for coming on the podcast again to chat about this incredibly important topic that applies to so many people, so many clinicians need to know more about it. And so this is just a really great thing that you came back to chat with me today. 

50:53
Leslie Russek, DPT
And thank you for everything that you're doing to educate patients and providers as well. That is really important as well. 

51:02
Dr. Linda Bluestein
Very good. Thank you. If you found this helpful, follow the Bendy Bodies podcast. To avoid missing future episodes. Please leave a review and share the podcast so more people know about Bendy Bodies and Joint Hypermobility screenshot this episode. Tagging us in your story so we can connect. Our website is WW bendibodies.org and follow us on Instagram @bendybodies. We love seeing your posts and stories, so please tag using hashtag Bendybuddy. This information is not intended to diagnose, treat, cure, or prevent any disease. The information shared is for educational purposes only and is not a substitute for medical advice, diagnosis, or treatment. Please refer to your local qualified health practitioner for any medical concerns. We'll catch you next time on The Bendy Bodies podcast.