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Craniocervical Instability 

Craniocervical instability (CCI) is a rare condition that may be found in patients with several disorders, one of which could be EDS.

CCI can occur when ligaments supporting the neck become too loose or weak, leading to increased movement between the skull and upper cervical spine. 

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Symptom of CCI can vary widely and overlap with many other conditions. 

Common symptoms of CCI may include: 

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Neurological symptoms 

  • Dizziness

  • Vertigo (spinning sensation)

  • Anxiety

  • Issues with your balance

  • Brain fog

  • Memory and concentration difficulties

  • Vision changes (i.e. blurry or double vision)

  • Ringing in the ears (tinnitus)

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Head and Neck Symptoms 

  • Neck pain

  • Limited range of motion of neck

  • Feeling that the head is "too heavy" for the neck

  • “bobble head” sensation

  • Difficulty holding the head upright for long periods

  • Severe headaches, especially at the base of the skull

Image by Uday Mittal

If instability affects the brainstem, symptoms may include:

  • Difficulty swallowing

  • Sensation of choking

  • Voice changes (hoarse voice)

  • Facial numbness

  • Sleep disturbances

  • Weakness or numbness in extremities

  • Abnormal reflexes

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Autonomic symptoms

  • High heart rate

  • Lightheadedness or dizziness when standing

  • Fainting or near-fainting

  • Fatigue

  • Severe heat intolerance

Other conditions with similar symptoms 

Symptoms of CCI are similar to many other conditions

 

Symptoms may overlap with other conditions which are common in patients with EDS/G-HSD

 

Conditions that may produce similar symptoms may include:

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  • Migraine

  • POTS/ Dysautonomia

  • Chiari Malformation

  • Cervical Spine Disorders such as disc disease and arthritis

  • Chronic fatigue syndrome (ME/CFS)

  • Vertigo or Inner-ear problems

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Patients with EDS and hypermobility commonly live with chronic pain which may include head and neck pain. Head and neck pain can occur for a variety of reasons and are rarely the result of craniocervical instability

How is CCI diagnosed?

Diagnosis of CCI requires review of your past medical history and current symptoms.

 

If CCI is suspected your medical team may order imaging which can include:

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Cervical spine x-ray in flexion and extension 

** If this is abnormal your medical team may order further imaging which can include: 

Image by Umanoide

Dynamic CT 

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Somatosensory Evoked Potentials (SSEP)

Image by Accuray

MRI

How Is CCI Treated?

Not everyone with CCI will require surgery to manage their symptoms. The type of treatment required will depend on the degree of instability identified on imaging and how severe the symptoms are

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Before treatment for CCI is considered other diagnosis that may have similar symptoms should be assessed with optimized treatment when possible

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First line therapy may involve

  • Physiotherapy focusing on neck stabilization (GoodHope EDS CORE program)

  • Use of a neck brace as directed by your treating physician

  • Pain management​​​

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In rare cases surgical intervention may be required

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Surgery is considered when there is severe, documented instability and significant effects on the neurological system

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