With chronic illness the search for answers, relief, understanding, and finding a way to reclaim your life can feel never ending. My search for answers became more aggressive as my illness took another unexpected turn at the start of 2024, reaching the point of disability. Like many who suffer from invisible illnesses, I’d already spent years seeing doctors, undergoing tests, and trying treatments without much success.
After ruling out many serious diseases already, I knew that what I was experiencing required out of the box thinking. That’s when a condition appeared on my radar that sparked hope: Craniocervical Instability (CCI).
CCI affects an important area of the body, the junction between the skull and upper cervical spine. It occurs when the ligaments that support this junction become too lax, allowing too much movement. The impact is far reaching and can cause compression of the brainstem, spinal cord, and nearby nerves that can lead to a large range of symptoms that mix with different specialties. This makes it difficult to both diagnose and treat. However, this gave me a new sense of direction in an otherwise aimless medical journey.
The YouTube Algorithm
I tend to spend way too much time on YouTube, and I noticed my algorithm was changing. My suggested videos were shifting from my hobbies of gaming and cycling to showing various medical conditions. It was like it was trying to help me find the root cause of my illness.
It’s funny how sometimes, the path to new insights comes from the most unexpected places. I was browsing YouTube one day when the algorithm pushed a video from Caring Medical Florida into my feed going into detail on cervical instability. It was my first introduction to CCI as a potential cause of many unexplained symptoms.
Watching that video felt like a moment of clarity. The doctor discussed cervical instability in a way that made me feel validated. I have a laundry list of symptoms, everything from dizziness and brain fog to gastrointestinal issues and head pressure. Almost every one of my symptoms was accounted for in the video, and I began to think, could this be what I’ve been searching for? Could my neck be the root cause of all these issues?
I dove headfirst down the rabbit hole. I learned that this condition is often associated with conditions like Ehlers-Danlos syndrome (EDS), trauma, or even repetitive strain on the neck, which can weaken the ligaments over time. Getting diagnosed with CCI seemed difficult as it typically requires advanced imaging like upright MRI (because symptoms are worse when upright) and dynamic X-rays.
More videos, more research, more forums, and more hope. I continued my research with Caring Medical who utilizes upright imaging, ultrasound, and even vagus nerve function tests as part of their diagnostics. The clinic also specializes in non-surgical regenerative treatments like prolotherapy, platelet-rich plasma (PRP), and stem cell therapy for conditions such as Craniocervical Instability. Filled with hope, I was ready to take a road trip to Florida.
But as with anything, that hope came with a side of skepticism. For every success story of someone whose life had been transformed by treatment for CCI, there was a story of someone who saw no improvement and felt even more debilitated after treatment.
Treating Craniocervical Instability Through Regenerative Medicine
Regenerative medicine offers promise but is filled with uncertainty, especially when it comes to something as complex as Craniocervical Instability. The treatments places like Caring Medical Florida offer aren’t your typical medical interventions and are still relatively new and unstudied. They rely on the body’s ability to heal itself through targeted injections of substances like PRP or stem cells.
This brings the catch: regenerative medicine is typically not covered by insurance, and diagnostics are often out-of-pocket expenses. I knew that if I wanted to pursue this route, I’d be looking at up to $15,000 for treatments, testing, and travel costs with no guarantee of success. That price tag is vomit-inducing, especially when you’re dealing with an illness that has already drained so much physically, emotionally, and financially.
Still, when you’re desperate for answers and conventional medicine has offered none, you become open to exploring alternative avenues. At that point, I was ready to give regenerative treatments a try. However, traveling to Florida wasn’t an option, so I found a local clinic that just so happened to be less than 10 minutes away that offered similar injections and diagnostics at a cheaper price.
A Local Clinic, a Consultation, and Doubts
I scheduled a consultation at this nearby clinic, hopeful that I was finally on the right track. The chiropractor took a thorough history of my symptoms, and we did static upright X-rays in various positions in the same visit. A week later, I returned to go over the results and discuss the game plan.
After going over imaging, the chiropractor found no clear evidence of cervical instability. This was disheartening, as I was convinced my symptoms pointed in that direction. However, he did notice a straight neck, minor bulging discs, and tension in the problem areas around C3 to C5.
He recommended PRP injections into those areas, shock wave therapy, paired with gentle adjustments and traction therapy to strengthen the ligaments and promote healing. The injections would cost $3,000, $300 for a single shock wave therapy session, and each chiropractic session would be $65.
Part of me wanted to proceed, but I had serious doubts. I hadn’t met the physician who would be performing the PRP injections. He flew in every couple of months just to handle these procedures and I would be meeting him the same day of the procedure. Something about the situation didn’t sit right. The way it was presented felt less like a medical solution and more like a sales pitch, and I couldn’t shake the feeling that I was about to invest in something that might not deliver.
In the end, I canceled the injection but decided to give the chiropractic treatments and shock wave therapy a try. I continued the adjustments and traction therapy for about six weeks, but the visits felt disorganized and it didn’t take long for me to feel like I was spinning my wheels. There was no significant improvement in my symptoms, and I began to question whether this approach was worth the time and money.
The Search for a Better Fit: NUCCA and Atlas Orthogonal Chiropractic
Disappointed but not defeated, I decided to shift my focus to upper cervical chiropractic care, hoping to find a more precise and less invasive treatment. I researched the NUCCA (National Upper Cervical Chiropractic Association) technique and Atlas Orthogonal Chiropractic. Both methods focus on gently realigning the upper neck without the aggressive manipulations I wanted to avoid, especially given my neck sensitivities.
I did a six-week program with both approaches, but once again, I didn’t experience any meaningful relief. It felt like I was still missing something, and I didn’t want to give up on my neck being the source of the majority of my symptoms.
Upright MRI: The Gold Standard for Diagnosing Instability?
My next step was getting an upright MRI with extension and flexion, a test that is touted for its ability to detect Craniocervical Instability more effectively than traditional supine MRIs. Since most of my symptoms worsen when I’m upright, the idea of imaging in a load-bearing position seemed logical. I was hopeful that this scan would provide the answers I’d been seeking for so long.
However, the results came back normal and no signs of cervical instability.
I was shocked, as I was sure that the imaging would reveal something even if it wasn’t instability. How could my MRI come back normal when I felt so far from normal every day?
Coming to Terms
After chasing the possibility of Craniocervical Instability for months, I found myself back at square one, still dealing with debilitating symptoms and no definitive diagnosis.
It’s hard not to feel defeated in moments like these. But chronic illness teaches you to live with uncertainty and to keep moving forward, even when the path is unclear. Some conditions are incredibly hard to diagnose, and sometimes the tests don’t match up with what we feel in our bodies. That doesn’t mean the pain isn’t real or that we should stop searching for answers, but it does mean that sometimes we have to accept that the road to healing isn’t always straightforward.
For now, I’ve slowed my pursuit of Craniocervical Instability as the root cause of my symptoms. There’s no concrete evidence to support the diagnosis, and after so many treatments and tests, I’ve realized that not every lead will take me where I want to go.
Reflections on Regenerative Medicine and the Search for Answers
My experience pursuing a Craniocervical Instability diagnosis has left me with a mix of emotions: hope, frustration, and a deeper understanding of the complexities of chronic illness. I remain interested in the possibilities of regenerative medicine, but I also recognize its limitations. It’s not a one-size-fits-all solution, and the costs, both financial and emotional, can be overwhelming.
For anyone considering this route, I would urge caution. Do your research, weigh the pros and cons, and be realistic about the potential outcomes. In my case, I’ve had to accept that not every treatment will provide the relief I’m searching for, but that doesn’t mean the risk isn’t worth taking.
Sometimes, the pursuit of answers teaches us more about ourselves than the condition we’re trying to diagnose, and maybe, that’s part of the healing process too.
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