This post has been six months in the making, which will explain why I’ve been missing in action (MIA) with blog posts until now. In the over nine years since my traumatic brain injury (TBI), life’s been like a bad infomercial when it comes to adding more related diagnoses to my chart: But wait, there’s more!
It took three and a half years to get the diagnosis of pituitary damage (see my book for those details). It took seven years to get the diagnosis of dysautonomia/postural orthostatic tachycardia syndrome (POTS: see my blog post or click here for more info). Most recently, after nine years, I am now the proud new owner the diagnosis of (drumroll please) … craniocervical instability (CCI)!
What? You haven’t heard of craniocervical instability? Don’t worry, neither had I until August 2022. Long story short, it wasn’t even any of my providers who brought it to my awareness, but rather my peers in my dysautonomia support group when I mentioned some symptoms of pressure in my head that I’d experienced ever since my injuries in 2013. No matter how much bodywork, chiropractic care, self-care, etc., I received or did, this particular pressure and pain in my head after certain movements never changed. I knew my cervical (neck) vertebrae subluxate, or go “out,” easily, but didn’t think much about it other than when I needed chiropractic adjustments or bodywork. When I began to investigate craniocervical instability, I thought, “that sounds plausible,” and kept gathering information.
What is CCI?
Craniocervical instability, in a nutshell, is ligament laxity in the upper neck, namely involving the alar, accessory, and transverse ligaments that connect your head to your neck. Ligaments are dense fascia, aka connective tissue, that connect a bone with another bone, like the vertebrae in your neck. The ligaments become lax, or loose, in cases like mine with repeated whiplash injuries, but also with a connective tissue disorder called Ehlers-Danlos Syndrome (EDS) that causes hypermobility (which I do not have). Physical trauma and EDS are the two most common causes of CCI.
Symptoms Craniocervical Instability
Like any medical condition, symptoms and severity vary from person to person. The most common symptoms include, but are not limited to:
- Not the “usual” headache, but one that is constant and debilitating
- Head feeling too heavy to hold up on your neck or like a bobble head
- Neck pain
- particularly at and around the base of your head
- often aggravated with particular movements
- Brain fog
- inability to concentrate, focus, think, remember, etc. Feels like your brain is either just completely blank, or some describe it as your head being stuffed with cotton
- Tachycardia or POTS
- Heart rate too high because of irritation or damage to the vagus nerve in the upper neck. This nerve helps regulate heart rate and lots of other things.
- Vision changes because of the way the eyes connect neurologically with the brain and muscles at the base of the skull.
While I’ve become an eager student these many months learning about CCI, I’m not the expert. So as not to try to re-invent the CCI wheel, for tons more detailed and useful information, please check out all the resources provided by the experts in CCI, my new friends, at the Centeno-Schultz Clinic in Broomfield, Colorado. They have lots of information on their website, an e-book you can download, and a plethora of informative videos on Dr. Centeno’s YouTube channel:
CCI E-book: https://centenoschultz.com/regenexx-library/
Note that Drs. Centeno and Schultz are experts in CCI and train others in this field, and there are others around the country who also diagnose and treat craniocervical instability. While I do not know who they all are (there aren’t many in the grand scheme of things), I want to recognize the bias in my own excellent experience with the C-S Clinic and note that they’re not the only ones who can help those with this condition (but are nevertheless highly recommended).
CCI is most effectively diagnosed through digital motion x-ray (DMX). Unlike traditional x-rays that have the patient static/still, the DMX takes x-ray of your neck movement with you upright in gravity to look for particular misalignments that indicate ligament damage, and hence, instability. Basically, it’s an x-ray video. Diagnosing CCI may sound like a piece of cake, but it’s not. Know that my DMX report contained 17 pages of detailed measurements and images and was the key to my diagnosis.
An MRI isn’t usually sufficient because you’re a) still; and b) lying down. The deviations in alignment, which are much more specific than any chiropractic assessments you might have received, needed to confirm CCI are typically seen in movement. Being upright in gravity plays a huge role in how you move, making it a critical component of the diagnostic process.
Having been a licensed bodyworker for 14 years (now legally disabled), to say I’ve received a lot of conservative care for my neck would be a huge understatement. After reviewing my DMX, MRI (which found yet other issues in my neck in addition to CCI), and history, my doctor at the Centeno-Schultz Clinic diagnosed me with craniocervical instability and recommended platelet-rich plasma (PRP) injections into many ligaments and joints via the back of my neck, which we did in December. This can be effective for some patients, but, unfortunately, it hasn’t been for me, as I have multiple types of CCI. It’s always worth a try, though, without being attached to the outcome. I’m bummed, of course, but it just means we haven’t gotten to the juicy source of the problem yet.
My craniocervical instability is severe enough (rated at “moderate”) that I will be needing the next step: the more invasive percutaneous implantation of cervical ligaments (PICL). In this treatment, bone marrow concentrate is taken from the patient’s pelvis and then re-injected into those pesky alar, transverse, and accessory ligaments through the back of the mouth, which is the only way to get to them. Because ligaments are avascular, meaning they don’t have a blood supply, when they’re damaged, they don’t heal much on their own. Injecting them with stem cells from the patient’s own body instigates actual healing and the laying down of more tissue in these ligaments to strengthen them. This PICL procedure has a high success rate (70%), according to the Centeno-Schultz Clinic that developed this highly specialized approach.
The treatment for CCI depends on the type(s) of CCI, classified by where in the cervical spine, and which ligaments are affected (this is why the DMX is so essential). People can have more than one type of CCI, like I do, requiring more than one type of treatment to address them. Dr. Centeno recently created this classification of types of craniocervical instability, and explains the treatment approaches here.
If you’d like to learn more about the different types of stem cells used in orthopedic procedures (particularly the bone marrow concentrate for PICL) click here.
The relationship between TBI, Dyautonomia/POTS, and CCI
What do TBI, dysautonomia (specifically POTS), and CCI have in common, besides me having all three? The injuries that caused my traumatic brain injury (in addition to other neck traumas in the year to two preceding that), likely caused enough damage to my cervical ligaments, leading to CCI, which then also led to dysautonomia. When people incur a TBI, often from a car accident, fall, blow to the head, or other means, more than just the brain becomes injured. The impact affects the whole body, often the neck and entire spine even more so than other places (but not necessarily). There’s a chance to get a two-for-one deal with TBI and craniocervical instability, possibly leading to a three-for-one with dysautonomia thrown in as a bonus.
Is there a chance that damage to the brainstem itself is causing my POTS? Yes, there is, though it’s highly probable that the constant movement of my upper cervical vertebrae has damaged the vagus nerve, accounting for POTS symptoms. For a detailed explanation on the relationship between CCI and POTS, watch Dr. Centeno’s video here.
According to webinars I’ve watched by Dysautonomia International, the authority on dysautonomia, it appears that 4-25% of folks with TBI also have dysautonomia. That is a substantial range, with a huge opportunity for gathering more precise data. The question remains: of the folks with TBI and dysautonomia, how many of them also have CCI (causing their dysautonomia)? Clearly, further research and collaboration between experts in these fields are needed.
A correlation also exists between CCI and chronic fatigue syndrome (CFS), my most debilitating health challenge. The origin of CFS remains unclear in folks with CCI, and in general. No one really knows why chronic fatigue syndrome occurs, but what everyone who lives with it does know is that it is real, not psychosomatic (“all in your head”), and life-stopping.
So there you go: why I’ve been MIA these many months as I’ve been actively recovering from the PRP injections, managing my many conditions, and needing to just focus on my own self-care. Now that you know about craniocervical instability, its relationship to these other challenges you might also have or know someone who does, please share this information.
If it hadn’t been for my peers, it might have taken even longer than nine years to receive this diagnosis and treatment. The more you, and your providers, know, the more you:
- Know you’re not alone
- Are empowered to do something that might improve your quality of life
- Can advocate for yourself
- Make a positive difference in the lives of others
I’m approaching 10 years since my life dramatically changed with a brain injury and the domino effect it has had. Each year brings new learning opportunities, but I really hope and pray that I’m done with the infomercial-like “but wait there’s more!” occurrence of new diagnoses, at least for a while. I’m full and not accepting any new ones. 😊
Until next time, be well.