What is Craniocervical Instability (CCI)?

Did you know neck pain is one of the most common symptoms we see in EDS patients in our clinic?

Pain in the neck can have a variety of causes, which is why it can be difficult to identify exactly what is causing it to occur. If this is a symptom that you have been dealing with, and are struggling to find an answer, you might want to consider looking into craniocervical instability.

Craniocervical instability (CCI) is a medical condition in which loose ligaments in your upper cervical spine can cause neuronal damage, among other symptoms. In addition to pain, CCI can cause muscle spasms, neck stiffness and soreness, migraines, and vertigo. CCI can have a significant impact on our nervous system, causing balance problems and movement disorders.

Many of us with Ehlers-Danlos Syndrome will be diagnosed with craniocervical instability as well. While there unfortunately is not a cure for CCI, symptoms can be managed! The crucial first step, however, is getting a diagnosis.

Craniocervical instability is best diagnosed with an upright MRI that shows flexion and extension. This type of MRI is most accurate, as it shows what role gravity plays in your instability. Management of CCI depends on severity – in general, physical therapy is the best place to start. Through physical therapy, you can strengthen your upper neck muscles. It is very important that you are working with a physical therapist who is familiar with CCI and understands the proper treatment to give you.

If symptoms are very severe, surgery may be an option for you. Your specialist may suggest surgical fusion to provide stabilization to your upper cervical spine. Make sure they are aware of your EDS, and/or other diagnoses, before you decide to proceed with surgery.

If you suspect you have craniocervical instability based on symptoms you’re experiencing, It’s important to visit your doctor. They will be able to diagnose you with a few tests or by ruling out other similar conditions. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment.

Be sure to consult with your primary care physician or other medical professionals in regards to your medical concerns. This text cannot and should not replace advice from the patient's healthcare professionals. Any person who experiences symptoms or feels that something may be wrong should seek individual professional help for evaluation and/or treatment. This information is for guidance only.