Conservative management for CCI/AAI

“Conservative management” for craniocervical Instability (CCI) and atlantoaxial instability (AAI) refers to non-surgical approaches aimed at stabilizing the craniocervical junction (the area where the skull meets the upper cervical spine) and reducing symptoms such as neck pain, headaches, dizziness, brain fog, and autonomic dysfunction.

This post will be a mix of professional recommendations and advice from lived experience.

Activity Modification & Lifestyle

No matter the disability or illness you have, you'll have to make modifications in your life. Some examples and recommendations include:

• Neck protection: Avoid high-impact or whiplash-like activities (e.g., roller coasters, contact sports, heavy lifting).

• Ergonomic posture: Use a headrest, maintain a neutral neck position, avoid prolonged flexion (like looking down at a phone).

• Neck brace: Soft or rigid cervical collars (e.g., Aspen, Miami J) can reduce motion temporarily but should be used judiciously to prevent muscle atrophy. Never use a rigid/hard collar without a doctors recommendation.

• Energy conservation: Limit activities that require large amounts of physical or mental energy, take frequent breaks.

Medical Management

Pain management:

• NSAIDs: for pain

• Muscle relaxants: might be effective for pain but should be used with caution as they can worsen instability

• Neuropathic pain medications: such as gabapentin or pregabalin

• Low-dose naltrexone (LDN): not widely used but can be very effective for pain for some

• Topical pain medication: such as voltaren

• Opiods: should be used with care as they are addictive, but might be necessary for flare ups or cases with severe neck pain

  
  

Other symptom management:

• Autonomic symptom management: Hydration, salt intake, compression garments, and medications for POTS/dysautonomia if present.

• Anti nausea medications: such as ondansetron

Supportive & Adjunctive Care

• Sleep optimization: Proper pillow height and neck alignment during sleep. Many also find supporting the rest of the body with pillows helpful.

• Nutrition: Adequate protein, some also take supplements such as vitamin c or collagen, however there's no research showing that this has an effect on CCI

• Management of comorbidities: Especially Ehlers-Danlos syndrome (EDS), POTS, or mast cell activation (MCAS) if present.

• Topical magnesium: for muscle tension.

• Non medical pain management: Heat therapy or TENS machine

• Mobility aids: such as a wheelchair (with a headrest) or an (upright) walker to help with fatigue, weakness etc

Upper cervical chiropractic

Upper cervical chiropractics (UCC) focuses on gentle adjustments of the top neck vertebrae (C1–C2).

• However CCI and AAI involve ligament laxity, which makes these joints unstable and vulnerable to movement.

• Because of this, any neck manipulation — even “gentle” upper cervical adjustments — can worsen instability or cause neurological symptoms.

• There’s no scientific evidence that upper cervical chiropractic is safe or effective for people with CCI or AAI. In fact, major experts and organizations (like the Ehlers–Danlos Society, Chiari & Syringomyelia Foundation, and several neurosurgeons) warn against spinal manipulation in these patients.

• Some patients report benefits from UCC but as mentioned there's no scientific evidence of this being an effective treatment for CCI and AAI.

Physical Therapy (PT)

Physical therapy is the main recommendation for non surgical cases. The following recommendations are based on this paper focusing on PT for patients with CCI and symptomatic hypermobility. It's however still relevant for people with CCI due to other causes.

Be aware that not all of the following will be tolerated by all patients, and it's best done followed closely by a physical therapist.

Functional Activities

You’ll practice everyday movements to help you get stronger and more confident doing normal life tasks.This includes:

• Making meals and doing light chores (sweeping, shopping, carrying small items)

• Standing, turning, squatting, and half-kneeling

• Pushing or pulling light objects

• Practicing posture and balance while standing or moving

• Learning safe ways to lift, drive, and do daily activities

These help your body work as a unit and improve control, strength, and stability.

Strength and Motor Control

We’ll focus on improving how your body moves and how well your muscles work together.

This includes:

• Strength and control for your legs, feet, and ankles

• Strength and movement for your shoulders and shoulder blades

• Mobility and control through your upper and lower back

• Gentle strengthening for your neck, done only in safe, pain-free ranges

Neck training might include:

• Small, controlled head movements

• Balance and coordination exercises using a head laser or while walking

• Very gentle isometric (non-moving) neck holds with minimal effort

• Light head loading (up to about 1 pound / 450 grams) only if safe

Manual Therapy (Hands-On Work)

Gentle hands-on techniques may help relax tight muscles and improve movement.Your therapist might work on:

• The upper ribs, shoulder joints, or upper back

• Tight neck muscles, to help them relax

• Gentle work around the upper neck (C1–C2), only if the therapist is specially trained

Avoid: Any deep or aggressive manipulation of the neck.

Aerobic (Cardio) Exercise

Start with gentle, low-impact activities such as:

• A recumbent bike or pedal exerciser

• Walking, if it doesn’t cause nerve tension or symptoms

The goal is to build endurance safely without flaring symptoms.

Education and Self-Care

Understanding Your Condition

You’ll learn about:

• Joint hypermobility and upper cervical instability (UCI)

• How to recognize warning signs that need urgent care (like sudden dizziness, severe headache, or new nerve symptoms)

• What to do during a flare — for example, using a neck brace or resting

Posture and Body Mechanics

Learn how to protect your neck and joints during daily life:

• Use good sitting, standing, and sleeping posture

• Be mindful of how your body feels in different positions

• Avoid or limit neck movements unless they’re pain-free and safe

• Practice safe posture for daily tasks like bathing, brushing hair or teeth, washing your hair, eating, or sleeping

• Use ergonomics and activity pacing to reduce strain

• Braces or orthotics for your feet, legs, or lower back can help give your neck a more stable base

• Supportive shoes can help with spine alignment

  
  

Pain Management and Relaxation

Learn how to calm your body and reduce pain through:

• Relaxation and breathing exercises (like slow or belly breathing)

• Gentle nervous system regulation that doesn’t involve moving your neck

• Understanding how pain works and how thoughts and emotions affect it

• Creating a self-care toolbox, such as:

  • Heat or ice

  • TENS (electrical nerve stimulation)

  • Topical pain creams

  • Relaxation and mindfulness

  • Positive thinking and pacing

Neck Bracing (if needed)

If a brace is recommended:

• You should learn how to fit and wear it correctly

• When to use it (for example, during flares, car rides, or daily activities)

• Whether you need a soft or rigid brace, based on comfort and support. Always consult with a doctor before using a rigid/hard collar.

For Highly Sensitive (High-Irritability) Patients

Some people’s necks are very sensitive and can’t tolerate much movement or touch.If that’s the case:

• Manual therapy should be gentle and stopped if it increases pain

• Exercises should be done in fully supported positions (e.g., lying down with the head supported)

• Training might focus on:

  • Gentle eye-movement exercises

  • Finding a comfortable neutral pelvis position

  • Small, safe neck movements near midline

  • Shoulder blade control while lying on your back or side

Safe Aerobic Options

• Gentle, supported exercises such as recumbent cycling, pedal exerciser, or short walks

• Always check with your therapist first — skip cardio if you have signs of neural tension or tethered cord

This concludes this post. Remember, t

he point of all this isn't to cure CCI, as we have no cure currently, but to improve quality of life and prevent deterioration.