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CCJ e-Learning Resources Knowledge is the first step towards effective self-advocacy.

What is Craniocervical Junction (CCJ) Instability?

CCJ Instability is when the area of the skull and upper neck are moving too much or moving more than they are supposed to move. CCI stands for craniocervical instability and that is instability between the skull (Oc) and the 1st vertebrae in your spine (C1). Atlantoaxial instability (AAI) is instability in the first 2 spinal vertebrae (C1-C2). Click here to learn more by video There is also more information in the e-Learning Resources in the section, Understanding Common Medical Terms below.

Does CCJ Instability cause illness and disability?

The short answer to this question is yes. Craniocervical Junction Instability is where key things like the brainstem, nerves, spinal cord, cerebral spinal fluid and major arteries supplying blood to the brain etc.. These things can get compressed or blocked due to the instability. Disability can be from someone who can work, go to school and light to moderate exercise but avoids certain activities that make symptoms worse; to someone who cannot tolerate being upright, bedridden and dependent on others for caregiving.

Is Craniocervical Junction Instability a legitimate condition?

Although Craniocervical Junction (CCJ) Instability due to ligament laxity has been written in medical articles and books since 1970s by pioneers Drs. MM Punjabi and AA White III, in 2020 it is only recognized, diagnosed and treated by a handful of CCJ Neurosurgeon and Orthopedic Specialists around the world. There is also more information in the e-Learning Resources in the section, Understanding Common Medical Terms below.

Why don’t the Doctors I have seen, know about CCJ Instability?

Craniocervical Instability is a highly specialized medical condition known to Neurosurgeons and Orthopedic Surgeons and it is well known to be common in patients with severe Rheumatoid Arthritis and Down Syndrome. To further complicate matters, only a handful of these surgeons in the past one to two have come to recognize CCJ Instability caused by ligament laxity (damage) in more patients than just a select few. To paraphrase a leading CCJ Neurosurgeon, the classic trained medical doctor can identify craniocervical junction instability when it is caused by a fractured or broken bone (it’s called a partial or full internal decapitation); however, there is a more subtle craniocervical junction instability that medical students are not taught or not taught in detail; and that is CCJ Instability that is caused by ligament laxity (damage).

How does a person get CCJ Instability?

Ligament damage in the craniocervical junction area can be effected by 3 major causes: Trauma, Congenital or Infection.

TRAUMA i.e. Accidents (e.g. Motor Vehicle, Sports or Recreational), whiplash, concussion, head injury, surgery, over-training

CONGENITAL i.e. connective tissue disorder Ehlers Danlos Syndrome/hypermobility, Chiari Malformation, Rheumatoid Arthritis, Downs Syndrome

INFECTION i.e. Lyme disease, mold exposure, bacterial or viral infections (i.e. Grisel Syndrome)

Is it difficult to diagnose CCJ Instability?

It depends on the Doctors training and experience but unfortunately there are only a handful of Specialists that can properly diagnose and treat CCJ Instability due to ligament laxity. Diagnosing CCJ Instability can be challenging, given the dynamic range of motion of the craniocervical junction. The CCJ can move in all kinds of directions: flexion, extension, rotation, oblique etc. yet the Magnetic Resonance Imaging (MRI) that is completed for the cervical spine is typically conducted in supine (laying down), whereby it is not bearing the weight of a head (which is around 15 lbs) and it is in neutral position. In addition, cervical spine MRIs typically do not include the top portion of the cervical spine, meaning the craniocervical junction. Unfortunately, the imaging that is typically ordered for the cervical spine does not include the craniocervical junction and the imaging does not show the cervical spine in dynamic positions which demonstrate compression of the nerves, spinal cord, arteries and veins etc.

Why should I investigate to see if I have CCJ Instability if I already have a diagnosis (i.e. whiplash / concussion / fibromyalgia / occipital neuralgia / ME/CFS / Lyme / EDS etc.?

Because you have a diagnosis (FM, ME/CFS, whiplash, concussion, occipital neuralgia etc.) does not mean that you do not have CCJ Instability. Often, people can have more than one diagnosis. In fact many patients that have these diagnoses, were later diagnosed and treated for CCJ Instability. However, this does not mean that all patients with these conditions have CCJ Instability. It’s a good idea to investigate for CCJ Instability because there are two treatments (surgerical and orthobiologics) available in which many patients have partially or fully recover from CCJ Instability and in a few cases, patients have reported all their symptoms have resolved and they are fully functioning again.

UNDERSTANDING COMMON MEDICAL TERMS

e-Learning Resources materials are very basic ideas and have been consolidated for your benefit. Take your time to understand the basics of each these topics. It is a small investment in your time and most likely will result in saving time and energy and may lead you to more accurate diagnosis. Many of these issues are connected or inter-related in some form. Many people have rushed to get a diagnosis and treatment, only to find out they have co-existing conditions. This is where we can take great words of advice from Albert Einstein.