This is not medical advice. View a full list of disclaimers here
My Experience
You see the owl above? That’s exactly how I felt when I started having craniocervical instability (CCI) symptoms. You see, I’ve had neck and shoulder pain for as long as I can remember. However, I never really thought much about it until it became one of the most excruciating pains I’ve ever felt.
Towards the end of 2023, along with neck pain, I began losing consciousness and having convulsions, upwards of thirty convulsive episode a day. I also had vision changes, migraines, and lost control of my bladder. I felt as though I couldn’t breathe if I turned my head. And let me tell you, I’ve always been big brained, but I was suddenly aware of my skull weighing what felt like 1000 pounds. More than once my skull felt like it fell backwards off my neck. In all honesty, it was completely terrifying. I didn’t want to be left alone for a single second. Trust me, there is no other sense of vulnerability like convulsing on a public bathroom floor.
My Diagnosis Journey
So, I delved into the comorbidities of Ehlers-Danlos syndrome. One of which is craniocervical instability, a condition in which there is increased movement at the craniocervial junction-that tiny part of the spine right at the base of the head. That movement causes the ligaments around the neck to be unstable and ultimately struggle to hold the skull up. As it turns out, many people with Ehlers-Danlos have craniocervical instability. After all, if the rest of our body is unstable why wouldn’t our necks be unstable as well? Craniocervical instability is also prevalent in people with rheumatoid arthritis, lupus, Down syndrome, and Marfan syndrome, as well people who have experienced traumatic car accidents.
After doing copious amounts of research, I was 99% confident that this is what was causing my issues. However, I was hesitant to go to the doctor because of past gaslighting, and I couldn’t even get into my primary doctor or neurologist if I wanted to. But, I was stuck in bed, unable to function, with the amount of pain and convulsions I was experiencing. Plus, I was growing more terrified by the day. So I did what I had to do and went to the ER in search of help.
I’ll spare you the details of the experience. Because my chest and neck x-rays came back normal, as well as my blood work, my suspicions were not listened to nor was I given any pain management. I was only referred to a neurologist who could get me in within the week, who gave me a diagnosis of Functional Neurological Disorder (FND).
Now, FND is a real diagnosis and the symptoms of it are very real. However, in my personal opinion, it should be a diagnosis given after ruling out other possible causes, instead of being handed out as the first answer (especially because it’s disproportionately young AFAB people who get diagnosed). Plus, in my case, it didn’t explain many of my symptoms.
So I decided to take my care into my own hands…
I ordered a neck brace, which immediately caused me to feel as though my head weighed half as much as it previously did. My pain decreased by four levels. I stopped losing consciousness and convulsing. It was the confirmation I needed that it wasn’t FND and I was experiencing neck issues.
I headed to my primary doctor (she’s an absolute treasure) with packets of research in hand. However, upon physical examination, she too knew there was something wrong with my neck. She initially ordered a CT scan of my neck, and when that came back negative for any issues, she ordered a standing MRI.
Now, it’s a privilege that I had a doctor who ordered testing, and even more of a privilege that I was able to get a standing MRI. A standing MRI machine is difficult to find, and often it’s even harder to get it covered by insurance. However, it is one of the golden standard ways to test for CCI because these machines capture neck movement as it happens. This allows for medical professionals to see instability as it’s happening.
With a standing MRI, I was able to confirm a diagnosis of CCI, as well as see various bulging spinal discs that had been previously been compressed. This spinal compression was most likely the cause of my unconscious/convulsive episodes as well as my loss of bladder control.
Now, I’m actively seeking treatment through physical therapy and periodic neck bracing. It will take some time to see improvements and seek out more specialized treatment options, however, I am hopeful that my symptoms can be improved without surgical intervention.
So, what would I recommend you do if thinking you may have CCI?
Well, I’m not a medical professional, so I cannot in good faith recommend or diagnose anything to anybody. However, there is little information out there on this, and I know I struggled to find answers.
If I had to do this again, I would tell myself to research, research, research! We shouldn’t have to be our own researchers, doctors, advocates, etc. but the sad reality is that we often have to be to be taken seriously. So the more research you have, the better. Print it off, highlight symptoms you experience that are symptoms of CCI. Bring up that research. This ensures you’re prepared to have a conversation and shows medical professionals you’ve done your research. Just an FYI, much of the research is based around EDS, so if you don’t have EDS, it may be more difficult to find research
Here are a few of the resources I used:
Craniocervical Instability in EDS patients
Explanation of why Upright MRI is needed and reference values
Neurological and Spinal Manifestations of EDS
Secondly, trust your gut. You know your body best. Don’t let one shitty doctor tell you otherwise. Of course, be a little flexible in your thinking and don’t get stuck on one diagnosis, as CCI symptoms overlap heavily with other conditions. However, don’t get discouraged if your doctors need a little push to explore more difficult to diagnose conditions instead of giving you the easiest answer. You have total permission to switch doctors and find someone willing to take the time you need to find answers.
Third, cervical collars can be bought on Amazon. I originally purchased this one, and while it’s a bit finicky, it worked. My provider actually recommended I purchase this prior to realizing I had one. Although this is a treatment option given to me and I’m not recommending you try it, no one is going to stop you from buying one. And if it helps, you might just have another clue on your hands since bracing is a recommended treatment.
Fourth, I would limit my extreme neck movements. Apparently it’s not normal to nearly be able to do a 180 with my neck like an owl, or be able to bend my neck back at a 90 degree angle. I would focus more on smaller movements and turning more with your whole torso instead of your neck. So, sadly, I’ve had to say goodbye to rollercoasters and circus tricks for a bit.
Despite a new diagnosis, I’m grateful to have answers. I hope this provided some helpful insights into my experiences. If you’re looking for answers, I’m wishing you all the best in your journey! You’ve got this, and I believe you <3
