‼️Diagnosed with CCI and AAI‼️: 11 Reasons Why It Took 14 Years

Hi everyone, I’m Rachel. Welcome to my channel. I want to share my journey of living with debilitating and progressive symptoms that took away my basic functions and eventually became life-threatening. For 14 years, I fell through the cracks of the medical system, unable to get a diagnosis and treatment.
I spent years incapacitated, suffering from a wide variety of significant neurological symptoms affecting multiple systems in my body. These symptoms impacted my stamina, vision, balance, coordination, cognition, speech, heart rate, auditory processing, and eventually led to the loss of control over both voluntary and involuntary muscles. My symptoms overlapped with illnesses like Multiple Sclerosis (MS), Myalgic Encephalomyelitis (ME/CFS), Dysautonomia, and other autoimmune, neurological, and brain disorders.
In the end, after multiple specialized imaging tests, significant instability throughout my cervical spine was discovered, most notably at my craniocervical junction (C1-C2). I had been living with a condition that was causing compression on my nerves, vessels, brain stem, and spinal cord. This explained so much about my experiences and why, despite working to keep every aspect of my health as strong as possible, my baseline was progressively worsening and eventually becoming life-threatening.
If you are like me, you might have spent years facing a complex chronic health condition in a medical system that didn’t know how to help. You may have been minimized because your symptoms were complex and didn’t fit clearly into a treatable diagnosis. You might have been told that you were “normal,” and your testing was “unremarkable,”. You may have found yourself avoiding medical attention, even when it was risky.
I spent years going from one specialist to the next specialist. None who were aware of AAI or CCI or how to effectively screen for it. I am not alone. I have spoken to many other patients who also spent years incapacitated, without a diagnosis, who later found that Atlantoaxial Instability (AAI) and Cranial-Cervical Instability (CCI) was at the root of their chronic complex health condition. Their eventual diagnosis enabled them to find a treatment plan and improve their quality of life and function.
My case required surgery, but others with these condition can manage their condition without surgery. There is power in getting an objective, science-based diagnosis and learning what specific needs your case requires. We deserve the opportunity to understand the root of our conditions and, through that, the opportunity to better manage our conditions.
I would love to hear from you! Please reach out and leave your questions and comments.
In this video:
0:00 Intro
• Introduction to my journey.
0:38 #1: Awareness Deficit
• AAI and CCI Require More Awareness.
0:52 #2: Multisystem Impact
• AAI and CCI Can Impact Multiple Systems in the Body.
2:23 #3: Intermittent Symptoms
• Symptoms Are Often Intermittent and Varied.
5:50 #4: Progressive Worsening
• Symptoms Can Worsen Over Time.
8:00 #5: Time and Diagnosis
• Because these conditions can gradually worsen over months or years, the onset event for CCI and AAI may be harder for physicians to link to current symptoms.
10:00 Physician Referrals
• Physician Referrals I Received During the 2 Years Prior to AAI and CCI Diagnosis.
11:44 #6: Missed Clues in Imaging
• Neurological symptoms and medical history may indicate a need for further clinical investigation.
12:11 Digital Motion X-ray (DMX)
• What is DMX? How was it used?
12:54 DMX Imaging Process
• What happens during DMX imaging?
15:09 #7: Imaging Limitations
• Limitations for Imaging CCI in Supine Position. Supine Position: Lying on your back
16:11 Best Imaging Methods
• Best Imaging Methods to Assess and Diagnose CCI and AAI.
17:28 #8: Imaging Quality
• Imaging Quality Can Vary.
17:51 Coming to Terms with Surgery
• Coming to terms with requiring surgery.
18:47 #9: Misattributed Symptoms
• Stress Is Mistaken as the Root Cause of Symptoms can limit further clinical investigation and important diagnostic clues.
20:55 #10: Need for More Studies
• This condition is complex, and the more data there is, the better we will be able to understand and treat it.
21:34 #11: Belief and Perseverance
• We Need to Be Believed. Many patients wait years for a diagnosis, navigating a complex healthcare system while coping with difficult symptoms. This process is difficult, requiring the strength to persevere and the wisdom to support our bodies.
Chronic neurological symptoms
Diagnosing rare conditions
Invisible illness journey
Health advocacy
Dynamic Motion X-ray (DMX)
Neurological symptom management
Chronic fatigue syndrome
Rare disease awareness
Medical system challenges
Neurological disorders treatment
Chronic pain
Ehlers-Danlos Syndrome, EDS
Fibromyalgia symptoms
Autoimmune disease diagnosis
Post-surgery recovery
Health and wellness journey
Spinal cord compression
Functional neurology
Sjögren's disease