As an anesthesiologist, the term craniocervical instability (cranio: skull, cervical: neck) is very familiar to me, but not in the way I’m learning about in long COVID. In the context of the operating room, an unstable cervical spine makes me concerned for spinal cord damage, which can be life-threatening. My patients at highest risk were typically trauma victims with neck injuries or patients with Down’s Syndrome. As I’ve learned, however, this term means much more in the chronic illness space, and craniocervical instability (CCI) is theorized as a possible cause of ME/CFS.
My guest on this week’s episode explains why. Dr. Katie Brown is a family medicine physician who specializes in treating complex chronic illnesses like ME/CFS and long COVID. What makes Dr. Brown’s work especially compelling is that it’s deeply informed by her personal journey. She developed ME/CFS during her first year of medical school and, after finding her way to remission, has dedicated her early career to caring for patients with similarly life-altering conditions. In our conversation, we discuss craniocervical instability within the context of ME and long COVID.
Exploring Craniocervical Instability (CCI)
CCI describes weakness or instability – in ligaments, muscle or bone – between the skull and the upper vertebrae of the neck. This weakness can lead to subtle compression or irritation of the brainstem, spinal cord, and surrounding nerves. Dr. Brown explained that signs of CCI can include a wide array of symptoms. Patients might experience neck pain, headaches at the base of the skull, dizziness, vertigo, visual disturbances, tinnitus, difficulty swallowing, and voice changes. Much of this can be attributed to compression or inflammation of cranial nerves.
The cranial nerves are 12 pairs of nerves that control important motor functions, like vision, swallowing, and hearing. The tenth cranial nerve is the vagus nerve, and in particular helps the autonomic nervous system control heart rate, breathing and digestion. Except for the ocular nerve, which originates toward the front of the brain closer to the eyes, the cranial nerves originate in the brainstem, which leaves them susceptible to strain or injury if the upper cervical vertebrae can’t hold the skull up well enough.
CCI in Long COVID
While CCI may not be directly caused by COVID-19, as Dr Brown explains, it can be unmasked or exacerbated in people who were already predisposed, especially those with hypermobility or connective tissue disorders.
Diagnosis is tricky, and interventions can be risky. Dr. Brown emphasized the importance of seeking evaluation from a physician who is knowledgeable about this condition. Diagnosis often involves a thorough clinical examination and specialized imaging, such as an upright flexion-extension MRI of the neck. Specialized imaging may also require specialized physicians like radiologists to analyze them and rule on the diagnosis.
Treatment approaches can range from conservative management, including physical therapy and cervical collars, to more invasive interventions in severe cases. The most severe cases may benefit from very delicate surgery from one of a few neurosurgeons who offer it. It is crucial to partner with healthcare professionals experienced in CCI to determine the appropriate diagnostic and treatment plan.
This is not a diagnosis the average primary care doctor can be expected to know.
Reflections on Diagnosis and Nuance
As an anesthesiologist, I’m well acquainted with the concept of cervical instability, just in a very different context. When I care for patients with unstable spines who need surgery, I have to be extremely careful with neck mobility. Administering general anesthesia often involves placing a breathing tube, which requires manipulating the head and neck. In cases where the neck is unstable, we sometimes use specialized video assisted tools to avoid causing harm. That awareness and caution are second nature in the OR but when it comes to chronic illness, we’re often missing the same level of structural scrutiny.
This is part of what I’m calling a silver lining in my own journey as a patient. I’m learning so much about physiology, about what it means to be on the receiving end of care, and about how little we truly understand some of these complex, chronic conditions. I carry that learning back with me to the clinician side of my brain.
That said, I want to approach CCI with nuance. Like other diagnoses gaining visibility – MCAS comes to mind – there are patients who clearly and definitively have it. But there are also cases where the diagnosis is made based on broad symptoms without confirmatory imaging or lab findings. I worry that in some spaces, these labels become catch-alls for every unexplained symptom. We need a more refined approach, one that holds space for complexity without falling into either dismissal – or the diagnosis of an obscure disorder that has few accessible treatments. That’s the balance I hope to reflect in my work going forward, and these are topics I’ll keep sharing as I learn.
Resources and Dr. Brown’s Contributions
Dr. Brown’s clinical notes on CCI are updated frequently and are a fantastic resource for clinicians and patients alike you can find them here.
For healthcare professionals who want to deepen their understanding of ME/CFS and related conditions, Dr. Brown also contributes to programs like Project ECHO, which helps clinicians learn from one another through case based virtual education. (That’s how we met!)
If you’re curious about physical therapy approaches to CCI, the Ressek et al. guide is another valuable reference.
I’m really inspired by Dr. Brown. It’s no small thing for an early-career physician to dive into a field as complex and poorly understood as ME/CFS. Many of us who’ve been through personal health crises take time (sometimes years), before we’re ready to re-engage professionally. Katie jumped in with both feet, and I admire her for that. Her commitment, her clarity, and her ability to bridge the personal and professional are remarkable.
You can listen to the full episode on your preferred podcast app, here on Substack, or on longcovidmd.com
Recommended Reading
Want to hear more from Dr. Brown?
- Sign up for her newsletter to get notified when her upcoming book on primary care for ME/CFS is published.
- Visit her website: chronicfatiguedoctornearme.com
- Browse her working notes on CCI
To read more about CCI
- The Sick Times recently covered CCI, following patients through diagnosis and treatment.