Welcome back to the Bendy Club blog! This week, we’re tackling an often overlooked topic: cervical instability in HSD and EDS patients. If you’ve been experiencing neck pain, headaches, or neurological symptoms, understanding cervical instability can be the key to finding relief and improving your quality of life.
What is Cervical Instability?
Cervical instability refers to excessive movement between the vertebrae in the neck, often due to laxity in the ligaments that support these joints. For individuals with Hypermobility Spectrum Disorder (HSD) and Ehlers-Danlos Syndrome (EDS), this instability can lead to significant discomfort and a range of other symptoms.
Why This Matters
The neck houses vital structures, including the spinal cord and blood vessels supplying the brain. Cervical instability in HSD and EDS patients can compress or irritate these structures, causing pain, neurological symptoms, and impacting overall well-being. Addressing cervical instability is crucial for maintaining neck health and preventing long-term complications.
Symptoms of Cervical Instability
Common symptoms of cervical instability include:
- Chronic neck pain
- Headaches, particularly at the base of the skull
- Dizziness or vertigo
- Neurological symptoms such as numbness, tingling, or weakness in the arms and hands
- Visual disturbances
- Difficulty swallowing
- Dysautonomia
Diagnosing Cervical Instability in HSD and EDS
Diagnosis involves a combination of clinical evaluation and imaging studies. Here are the steps typically involved:
- Clinical Evaluation: A thorough assessment by a healthcare provider familiar with hypermobility conditions is essential. They will check for signs of ligament laxity and neurological symptoms. Many times there is a history of trauma (whiplash) from car accidents or other injuries that lead to an increase in symptoms.
- Imaging Studies: X-rays, MRI, or CT scans can provide detailed images of the cervical spine, helping to identify excessive movement or structural abnormalities. These static images are helpful to rule out other causes of symptoms from disc herniations, stenosis, or arthritis.
- Dynamic Imaging: To accurately assess for instability dynamic imaging is needed. Flexion-extension X-rays, Digital Motion X-ray (DMX) or functional MRI may be used to assess the degree of instability during movement. Each have their function and can be helpful. I have found that the DMX testing is the most commonly performed for evaluation, especially when looking for upper cervical instability, but they tend to be expensive and there is a significant amount of radiation exposure. DMX testing tends to be performed by upper cervical chiropractic offices.
Action Steps for Managing Cervical Instability
- Seek Specialized Care: Work with a healthcare provider experienced in treating hypermobility-related cervical instability. They can develop a personalized treatment plan for you.
- Physical Therapy: Engage in a targeted physical therapy program to strengthen neck muscles and improve stability. This is key and must be done consistently if you want results. CCI is very difficult to treat and will require consistent effort over a prolonged period of time to improve symptoms. Ensure your therapist is knowledgeable about hypermobility and cervical instability. All exercises should be focused on strength and stability. NO STRETCHING.
- Posture and Ergonomics: Maintain good posture and use ergonomic supports to reduce strain on your neck. For example use an easel for painting instead of hunching over a desk. Consider using a cervical collar or brace as recommended by your healthcare provider. Cervical bracing can be very effective for symptom management, but using the brace too much can atrophy muscles in the neck making symptoms worse over time. Try to limit the use of the brace to only 1-2 hours at the end of the day, or with certain activities that would put your neck in a bad position (think painting at a desk, prolonged study sessions, crafting, etc)
- Pain Management: Use over-the-counter pain relievers, heat, or cold therapy to manage pain. Your doctor may also prescribe specific medications. Cervical instability and the neck pain associated with it are poorly treated by conventional doctors. Many times trigger point injections or botox injections are used to decrease muscle spasms. Unfortunately, if you have instability and the deeper ligaments and tendons are not strong enough to support the spine the muscles are all you have to give stability. So if you use something like botox yes it will alleviate the muscle spasms, but now nothing is supporting the spine which can make neurological symptoms worse over time.
- Regenerative Injections: A better alternative to the traditional pain management approach are targeted regenerative injections to the ligaments and tendons that support the cervical spine. Prolotherapy and PRP injections can increase the strength and stability of these structures improving neck pain, muscle tightness, and neurological dysfunctions occurring from cervical instability. These need to be performed by a specialist with experience in these techniques. All injections should be image guided directly into the supporting structures.
- Mind-Body Practices: Most people have experiences increase muscle tightness in the neck and upper back with a stressful experience. Incorporate very gentle neck massage and relaxation techniques such as mindfulness or meditation to manage stress and reduce muscle tension.
- Avoid High-Risk Activities: Steer clear of activities that put excessive strain on your neck, such as trampoline, dirt bikes, Jet Skis, contact sports, horseback riding, etc.
- Surgical treatment: For those with severe cervical instability that is not responsive to the above, there is a surgical procedure called cervical fusion that can treat instability. This is a high risk procedure and so should not be undergone unless all other options have been unsuccessful and symptoms are debilitating to ones quality of life.
Patient Story
One of our community members, Sarah, experienced debilitating neck pain and frequent headaches for years. Initially, she was told it was just muscle tension. However, after a comprehensive evaluation, she was diagnosed with cervical instability related to her EDS. With a tailored treatment plan including physical therapy, ergonomic adjustments, and bracing and injections of PRP to the structural tissue of the cervical spine, Sarah’s symptoms have significantly improved. Her story highlights the importance of proper diagnosis and individualized care.
Share Your Journey
We encourage you to share your experiences and connect with others on our social media platforms. By building a supportive community, we can help each other navigate the challenges of living with cervical instability in HSD and EDS.
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Warm regards,
The Hypermobile Solutions Team
References
Neurological and spinal manifestations of the ehlers-danlos syndromes (for non-experts). The Ehlers Danlos Society. (2022b, March 15). https://www.ehlers-danlos.com/2017-eds-classification-non-experts/neurological-spinal-manifestations-ehlers-danlos-syndromes/
Cervical instability. Physiopedia. (n.d.). https://www.physio-pedia.com/Cervical_Instability
Home. The Ehlers Danlos Society. https://www.ehlers-danlos.com/
What is HSD?. The Ehlers Danlos Society. https://www.ehlers-danlos.com/what-is-hsd/
What is eds?. The Ehlers Danlos Society. https://www.ehlers-danlos.com/what-is-eds/
Jovin, D., Atwal, P., Herman, K., Block, N., Maxwell, A. J., Mitakides, J., Maitland, A. M., Saperstein, D., Hamilton, M., Schofield, J., Koby, M., Klinge, P., McElroy, A., Bluestein, L., Chopra, P., Tishler, J., Pocinki, A. G., Varga, J., Dempsey, T., … Lane, K. (2020). Disjointed: Navigating the diagnosis and management of Hypermobile Ehlers-Danlos syndrome and hypermobility spectrum disorders. Hidden Stripes Publications, Inc.
Smith, C., & Wicks, D. (2017). Understanding Hypermobile Ehlers-Danlos syndrome and hypermobility spectrum disorder: (previously known as Ehlers-Danlos Syndrome Hypermobility Type & Joint Hypermobility Syndrome, respectively). Redcliff-House Publications.
Cox, C. (2022). Holding it all together when you’re Hypermobile. Journey2Joy
Disclaimer
This blog is for general informational purposes only and does not constitute the practice of medicine, nursing, or other professional health care services, including the giving of medical advice, and no provider/patient relationship is formed. The use of information on this blog or materials linked from this blog is at the user’s own risk. The content of this blog is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Users should not disregard or delay in obtaining medical advice for any medical condition they may have and should seek the assistance of their health care professionals for any such conditions.