#49: The Impact of Cranio-Cervical Instability, w Dr Katie Brown

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Summary

In this conversation, Dr Zeest Khan speaks with Dr. Katie Brown, who shares her journey as a family doctor and a patient with ME/CFS. She discusses the complexities of diagnosing and treating long COVID, particularly focusing on the role of cranio-cervical instability (CCI) and its impact on patients' health. Dr. Brown emphasizes the importance of understanding the symptoms, the challenges in accessing proper care, and the need for collaboration among healthcare providers to improve patient outcomes. She also offers insights into treatment options and encourages both patients and doctors to take ownership of their health and care.

Bio
Dr Katie Brown: Katie Brown, MD has dedicated her career to learning how to treat ME/CFS and related conditions, including Long COVID. Her interest stems from her own experience with the disease which she developed during her first year of medical school. She is very grateful to now be in remission and have the chance to use all she has learned, both as a doctor and a patient, to support others with ME/CFS. The clinical uncertainty around ME/CFS should not mean that patients don't get help. In order to educate and encourage other doctors to treat ME/CFS, she is writing a book outlining best practices for primary care doctors. You can sign up to her newsletter to be notified when the book is published. 

Sign up for Dr Brown's newsletter: https://www.katiebrownmd.com/newsletter

Dr Brown's CFS website: https://chronicfatiguedoctornearme.com/

Dr Brown's notes on UCI, updated regularly: https://publish.obsidian.md/gsdpc/Publish/Patient+Resources/Cervical+Instability   

Additional Resources:

Project ECHO

Ressek et al Presentation and physical therapy management of upper cervical instability 

The Sick Times article on craniocervical instability

Transcript

Zeest Khan (00:00)
Hello and welcome back to another episode of Long COVID MD. I'm your host, Dr. Zeest Khan.

I'm joined by Dr. Katie Brown, a family medicine doctor in Indiana who focuses on complex illness like ME-CFS and long COVID. She herself has a medical history that includes ME-CFS and she says she is in remission.

She has definitely battled through a lot and understands the challenges that those of us with long COVID face. What I wanted to talk to her about today was cranio cervical instability or CCI. It's a term that I have seen in the ME-CFS space and I'm seeing it more and more in the long COVID space as well.

Cranio cervical instability as Dr. Brown is going to explain describes a condition where there is laxity in the ligaments connecting the skull to the upper spine and it may cause pressure on the brain stem that could cause dysautonomia.

and many symptoms associated with the most severe cases of ME-CFS and long COVID.

In our conversation, we explore what craniocervical instability is, how it can cause symptoms like severe fatigue, dysautonomia, and even digestive problems, and what you can do if you think it might be affecting you.

I'll repeat the disclaimer here that even though we are both licensed physicians, the contents of this podcast is not medical advice. and as you're going to hear craniocervical instability really benefits by partnering with a medical professional.

Let's get started.

Zeest Khan (02:39)
Dr. Katie Brown, thank you so much for joining me on Long COVID MD and sharing your voice with all of us today.

Katie Brown (02:45)
I'm so happy to be here.

Zeest Khan (02:48)
can you tell us a little bit about your medical practice and your area of professional interest?

Katie Brown (02:54)
So I'm a family doctor in Terre Haute, Indiana. ⁓ I've been out of residency for around two years now. When I was a first year medical student, I developed chronic fatigue syndrome. And ever since then, I have been interested in learning how to treat it. I learned firsthand. ⁓

how difficult it is to find doctors that can provide even basic support, like a diagnosing ME-CFS, which was really difficult because without that diagnosis, I had no way to take medical leave from medical school. I was able, thankfully, to find a really great functional medicine doctor who was able to support me through that process.

and I am now in remission, but I learned firsthand just how great of a need there was for this sort of medical care. So I've been dedicating my career to that. I now own my own practice and ⁓ a majority of my patients are chronic fatigue syndrome patients.

Zeest Khan (04:14)
We met through Project Echo.

which I'm gonna link to in the show notes below and I've talked about here. It's a format for online physician education and medical education. And there's a whole area dedicated to post-viral illness, long COVID and ME-CFS of course overlaps with that a lot. You and I started talking and...

You mentioned how some of your patients may have cranio cervical instability I'm hearing this term come up quite a bit when we talk about long COVID and particularly severe ME-CFS.

Can you talk to us a little bit about what cranioscervical instability is? I know it's commonly abbreviated to CCI. And how is it related to ME-CFS?

Katie Brown (05:05)
Mm.

Yeah. You know, when I first started my chronic fatigue syndrome clinic, I thought that cervical instability was going to be something very small that I didn't really have to worry about. And I didn't know how to diagnose or treat it. All of the information I found online was primarily non-scientific, ⁓ just kind of public.

facing websites. So I neglected to really do anything about it for probably the first year of my practice, even though I had patients that I knew had some symptoms and some predisposing factors like hypermobility. I just didn't know what to do about it. ⁓ And then I came across this great paper. ⁓

by Dr. Russek who's a PhD in physical therapist and a whole bunch of other physical therapists and practitioners. And it's called the presentation and physical therapy management of upper cervical instability in patients with symptomatic generalized joint hypermobility. And this was the first scientific paper I found that really detailed what are the symptoms.

cervical instability. And in their paper they use upper cervical instability and that's the term that I usually use or UCI. And that's because cranio cervical instability is specific to the joint where the skull meets the first cervical vertebrae. Whereas upper cervical instability also includes the joint between the first and the second cervical vertebrae.

So using their recommendations, I was able to start identifying the patients that not only had symptoms of upper cervical instability, but also had the red flag symptoms, things like cranial nerve problems on physical exam ⁓ or seizure-like activity, kind of these more severe neurological signs and symptoms.

that would indicate that they probably needed to see a neurosurgeon. So after finding that paper, I had the great fortune of being able to meet with a physical therapist who was a co-author of that paper named Wendy Wagner, who lives up in Chicago. And she's been mentoring me in how to diagnose and treat this condition. What upper cervical instability is, is

Just like it sounds, there's an instability. Oftentimes that's related to lax connective tissue because of a genetic predisposition to that, such as in people with hypermobile Ehlers-Danlos syndrome or hypermobile spectrum disorder. And on top of that, or alone, there can also be things like whiplash injury, head trauma, some sort of traumatic ⁓ stretching.

of joint that can cause instability there. And when there's instability in the upper cervical spine, we can get impingement or irritation or stretching of very important structures like the brainstem and the cranial nerves, including the vagus nerve, which leave the brainstem at that level. I do have ⁓ at least one patient who also

has a lower cervical instability. I believe it's C3, C4, C4, C5, who also has ME-CFS. So there may be some mechanism there where it's not just the level, but the inflammation that comes with the stretching of the spinal cord in the upper part that might lead to ME-CFS.

probably through some sort of inflammatory process, though we don't really fully understand it yet.

Zeest Khan (09:35)
Are you seeing signs of upper cervical instability in people with long COVID from this inflammation, I'm assuming?

Katie Brown (09:44)
I would actually reverse the sentence. I'm seeing long COVID in people with upper cervical instability signs and symptoms. And the upper cervical instability seems to come first and be the predisposing factor. Oftentimes, people are having symptoms of some kind prior to the COVID infection. And the COVID infection is a trigger for a worsening of the symptoms.

Zeest Khan (09:48)
Mmm.

Katie Brown (10:14)
And then because it's so well known and people recognize long COVID as a term that kind of gets lashed onto as a label. What the mechanism is of that, I am not fully sure, but it's really interesting.

Zeest Khan (10:31)
That makes a lot of sense because I have been thinking about it in the way that I presented to you. Like, well, once you get a COVID infection, how could that sort of immediately cause cranio cervical instability or this laxity in connective tissue? And the way you're framing it ⁓ as a predisposing factor, that's very really, really interesting. So you mentioned ⁓ that

some patients with upper cervical instability have some cranial nerve involvement. Can you talk about some more of the common symptoms that suggest that a patient has cranioscervical instability or upper cervical instability?

Katie Brown (11:20)
sure. ⁓ First of all, they're hypermobile. I have yet to see a patient with upper cervical instability that didn't have hypermobility, though that hypermobility can be somewhat subtle. And they may not fully meet criteria for hypermobile Ehlers Danlos. And many of those hypermobile patients did not know they had a hypermobility prior to my assessment. ⁓ There's always neck tension.

muscle tension in the neck, ⁓ pain in the kind of where a coat hanger would touch if your shirt was hung up. ⁓ That seems to be pretty ubiquitous. Like it seems to affect everybody that has an upper cervical instability. And that's because the muscles in the neck that are supposed to be used for movement are being recruited to help stabilize the joint. And that causes a lot of

pain So often people will do things like massage or chiropractor work and they'll feel better when those muscles are relaxed, but then they'll tense up again after a few days. And actually relaxing those muscles can lead to increased instability in the joints. You want to be very careful about that.

Some of the things that I'm looking for on physical exam, which can be very helpful for kind of waving the red flag that, OK, maybe we need to get an MRI and take this very seriously, would be an abnormal cranial nerve finding. ⁓ And I guess I won't go into too many specifics. A doctor will know how to do a cranial nerve exam. ⁓

In particular, I'm finding a lot of people with a gag reflex that is abnormal or completely absent. ⁓ Sometimes it'll fluctuate between being super sensitive and being absent, which is really interesting. ⁓ Sometimes I'll see horizontal nystagmus where there's this beating movement in the eyes or convergence problems when the eyes can't work together properly. You can also look for

abnormal reflexes, in particular the Hoffman sign, where you flick the middle finger, and a positive reflex is when there's a twitching of the index finger. That's very important. That's an abnormal finding.

Zeest Khan (13:57)
So we're talking a lot about nerves. And when I think about nerves, I also think about the autonomic system. ⁓ Can you talk a little bit about the ways cranial instability might lead to or impact autonomic dysfunction?

Katie Brown (14:01)
Mm-hmm.

Yeah, so cranial nerve 10, the vagus nerve, is a nerve that seems very much affected when there's upper cervical instability and that's because it leaves the brainstem right at the level where the instability would occur. And the vagus nerve is the mediator for most of the parasympathetic rest and digest side of the autonomic nervous system.

So all of my patients with upper cervical instability, they seem to have very slow digestion and they often are predisposed to constipation, acid reflux, food just seems to sit in their stomach and not move. They are more predisposed to developing small intestinal bacterial overgrowth because of how sluggish their digestion is. Some of my patients can't even eat without nausea and vomiting.

because of the severity of the gastroparesis, that stomach just is not emptying. And all of that I link back to vagus nerve dysfunction because without the rest and digest signal from the vagus nerve, your bowels just don't move. And kind of the same with POTS, know, postural orthostatic tachycardia syndrome is a sort of dysautonomia. People with hypermobility are predisposed anyways because they don't have as much

in their vasculature to help return blood flow to their heart. But when that vagus nerve dysfunction is there, they are more predisposed to having a hyper-agenergic, high sympathetic tone where their blood pressure may go up, their heart rate may go up, and not have that rest and digest side to balance it out. So we're gonna be seeing a lot of autonomic nervous system dysfunction in this patient population.

Zeest Khan (16:17)
A lot of those symptoms are common among people with long COVID. ⁓ I imagine not everyone has cervical instability. What are some diagnostic tools that you use to sort of support a diagnosis of cervical instability?

Katie Brown (16:24)
Mm-hmm.

So once after history and physical exam, I am concerned about upper cervical instability, my next test is going to be an upright flexion extension MRI. ⁓ And this MRI needs to be done in a very specific type of MRI machine, not a normal MRI. So it can be difficult to access. ⁓ I serve Illinois, Indiana, and Kentucky.

and I know of three upright MRI machines between those three states, two of them are in Chicago. So I have my patients get this MRI and you have to have the radiologist follow a special protocol in order to get the special measurements. If you just get a normal MRI without telling the radiologist what to measure, they'll just say the MRI is normal. So this particular type

of finding is so underserved and so under recognized that unless you're ordering exactly the right test and having the radiologist measure exactly the right things and you're very specific about it, it seems to be just completely missed altogether. And even then, if I have

a strong enough suspicion to get the MRI in the first place, I will have someone who's very familiar with MRI reading in the setting of upper cervical instability actually look at the pictures and make a determination rather than relying on the radiologist who may not understand this condition.

Zeest Khan (18:27)
Gosh, the process that you are describing makes me think that this is, it's so important to partner with a clinician who is familiar with these disorders, who has ⁓ a really strong framework for how to diagnose or evaluate a patient for it. And you yourself as that type of clinician,

also has a network of people that you can rely on or you can refer to to help you. Like it's a really collaborative approach, but also one that must be really challenging to access for the average patient. I really encourage patients to not self-diagnose in this case, because I'm already hearing how nuanced

Katie Brown (19:20)
Mm-hmm.

Zeest Khan (19:23)
conversation this is, how nuanced a workup this is, and how you really need someone with expertise and multiple people with expertise.

let's talk about treatment options. ⁓ I'm hearing you talk about neurosurgeons and physical therapists. So can you talk to us about the treatment options, both non-invasive and neurosurgery on the upper cervical spine is super invasive. As an anesthesiologist, I, that's not something I want done unless it's absolutely necessary. So talk us through that.

Katie Brown (19:36)
Mm-hmm.

Yep.

Yeah.

Yeah.

Right.

The way that I kind of decipher this is I use Dr. Russek's paper as a guide, and in it she outlines the red flag symptoms that are indications for a neurosurgical consult. Now, they're not necessarily indications for surgery. They're indications to go see somebody who knows the risks and benefits of surgery.

and can talk in depth about the individual pros and cons for an individual patient. I'm not educated enough to do that. I'm not educated enough to tell a patient, need surgery or you don't need surgery. I refer to Dr. Henderson in Maryland. He's the neurosurgeon that I go to. I let Dr. Henderson talk with the patient about the risks and benefits of surgery. And I just look and see, is there an indication?

that you need to go talk with Dr. Henderson or not, in which case I usually refer to Wendy Wagner for a physical therapy consult. There are other interventions besides physical therapy and neurosurgery, such as prolo therapy or platelet-rich plasma injections. I don't know of any data on these interventions. They seem to be expensive. You need to travel to go get them.

For a lot of patients, I get asked about it because they're like, you're sending me to a neurosurgeon. Do I have any other option? And I tell them, well, yes, we have these interventions.

they're super expensive, they may or may not do what it is we need them to do, so take that for what you will. It's a difficult

Zeest Khan (21:56)
can you talk about the prognosis for someone with cervical instability?

Katie Brown (22:06)
You know, I wish that I had more information on the prognosis because it wasn't until relatively recently that I even began working up for this condition properly. I haven't seen very many people go through the full treatment, whether that be physical therapy or whether that be a neurosurgical intervention. I have one patient who's gone through the surgery so far.

but it's just not a big enough sample size to really be able to talk about. And as far as I know, there aren't any studies out there with a lot of data on this condition.

Zeest Khan (22:54)
There was a article published recently by the Sick Times on cranio cervical instability. That was pretty recently and I'll link that in the show notes below. One of the points that they make in the article is that cranio cervical instability ⁓ is often seen in people with

severe presentations of ME-CFS, particularly those who require or who might benefit from neurosurgery, they tend to fall into the most severe cases. As you sort of alluded to, the outcomes for neurosurgical interventions is not always 100 % positive, but it is a surgery that seems to be

Katie Brown (23:40)
Mm-hmm.

Zeest Khan (23:45)
done on people whose options are pretty limited. Is that your experience so far?

Katie Brown (23:52)
Yeah, it definitely is. I've seen a minority ⁓ of people who probably have kind of a mild upper cervical instability, no red flag symptoms on exam, they're still able to work. And this could be just the people that seek me out tend to be the most severe, but the patients that I worked with for that first year that are mostly bed bound,

have a lot of dysautonomia, they seem to be very refractory to all the treatments that I try. They were the ones that ended up having the upper cervical instability and who I'm referring to the neurosurgeon right now. So there tends to be this subgroup where, you know, all of the basic, you know, POTS treatments, the Massive Activation Syndrome treatments, they only do so much, but they're still incredibly disabled.

They require someone to help take care of them. ⁓ These are the patients that I'm finding have the red flag symptoms and cranial nerve abnormalities on exam.

Zeest Khan (25:04)
So what I've heard from you so far, I'm gonna do my little summary and you tell me if I'm hearing you right. People with significant upper cervical instability may present with significant dysautonomia.

coat hanger pain, hypermobility, and cranial nerve findings. Many people with long COVID have one of those conditions.

What would you recommend to patients who are concerned they might have meet those criteria? What do you recommend they do or how to pursue this?

Katie Brown (25:49)
Yeah, you really need to find a doctor that knows how to diagnose this because it is subtle. ⁓ In many cases, you have to know the right physical exam findings to look for and how to look for them. ⁓ There probably are some low risk physical therapy maneuvers to consider that might be beneficial. There's also some

low risk lifestyle interventions such as keeping the neck in a neutral position. A lot of people when they're on their phone all day in bed they have their neck flexed like this which can irritate an upper cervical instability. So bring your phone up to your face, keep your head in a neutral position. These things are probably low risk and you can try it and see if it helps you. Some people find that a cervical collar helps though you don't want to be in that long term because it'll weaken.

the supporting muscles and make the instability worse in the long run. So you can try some of these low risk things, see if it helps improve your quality of life. But really, I wouldn't trust...

just any physical therapist or any physical therapy program online to teach me how to manage an upper cervical instability. If I had it, I would really wanna work with a physical therapist who specialized in this area.

Zeest Khan (27:20)
I heard that sigh that you took when you were saying you really need to find a physician who can diagnose this because in that sigh, I am assuming is underlying the challenge in finding someone like that.

I appreciate

so much, you sharing your time with us today. I appreciate that you have carved out your practice to meet the needs of people who really need you. How can listeners get to know you better, follow you, and tell us particularly about the book that you've written?

Katie Brown (28:00)
Yeah, in the process of writing. ⁓ So they can sign up for my newsletter. We'll have a link in the description where I regularly send emails out describing things that I'm seeing in my clinical practice, ⁓ tips for patients, updates on the book. ⁓ Once the book is published, I will update there also. And the book is specifically for

doctors, not for patients. Patients are really good at being their own doctors, and I'm sure that they'll get benefit from the book as well. But doctors need to be their doctors. And the book makes the argument, it's written for the primary care doctor, my peers, family medicine doctors. And it makes the argument that

We don't have the luxury of referring out our chronic fatigue syndrome patients. What specialist are we going to send them to? They end up getting sent from specialist to specialist, and two years later, they've seen five other doctors, but no one knows how to help. So family medicine doctors and primary care physicians need to take ownership of this illness and learn how to manage it.

work it up, diagnose it, support their patients through the disability process, and learn how to provide basic management for the treatable comorbidities like POTS, as well as get comfortable with experimental treatments that are low risk and aren't going to do financial harm to their patients. And that's just got to be a ⁓ basic

skill that us family doctors know how to do. And that's going to be hard to do within the system, I think. You know, when you work for a hospital system and you have 15-minute appointment times. But there's a whole movement out there of doctors opening their own practices, like the direct primary care movement. And these doctors need

patients who are going to see the value in their care in order to spend cash to pay for their membership rather than just going through their insurance and being able to treat these sorts of patients is a great way to earn the value of being outside the system. Because even if you have insurance, if your doctor can't help you, it's worthless.

And there's hundreds of thousands of these patients needing help.

Zeest Khan (30:59)
Thank you for meeting that need and empowering other doctors to meet that need as well. I'm gonna, as you mentioned, link everything you talked about, in the show notes. Also, as we wind down here, Dr. Brown, is there anything that you want people with long COVID to know or physicians who are caring for people with long

COVID.

Katie Brown (31:25)
For the patients, there's hope.

you know, it's easy to get trapped in these echo chambers where people tell you that you're not going to get better. ⁓ That was not acceptable to me. This is not an acceptable quality of life. And I got better. And I believe that you can get better too. It's just a matter of experimenting and finding the thing that works for you. For doctors,

I think I've kind of already talked about like we need us primary care doctors in particular, ⁓ but also, you know, other doctors, the rheumatologists, the infectious disease specialists, the cardiologists, we need to get better at diagnosing and managing these conditions. People with POTS are coming into cardiology offices and the cardiologists don't want or know how to manage POTS.

and these patients don't have anywhere else to go. So we really need to start stepping up and taking care of these patients, because there are so many of them and they deserve help just like anybody else.

Zeest Khan (32:41)
I think that's a great message to end on. Thank you so much for joining me.

Katie Brown (32:46)
Thank you.

Zeest Khan (32:49)
Thank you so much for listening to this episode of Long COVID MD and my great thanks to Dr. Katie Brown for joining us today.

this conversation shed some light on how craniocervical instability can impact recovery from long COVID and why getting the right diagnosis and support matters. A big takeaway for me from this conversation is that this is not a condition that can be easily diagnosed, period.

It certainly requires more diagnostic tools than the average person has on their own. As Dr. Brown explained, not only do you need a physician who can recognize the signs of craniocervical instability, but possibly a team of other doctors who specialize in diagnostic methods for CCI and interventions.

for links to Dr. Brown's work and helpful resources, including the article that she mentioned summarizing upper cervical instability.

check out the show notes.

I hope you're feeling well in this moment and if not, I hope you feel a little bit better in the next. Take good care and bye for now.