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Understanding Adhesive Arachnoiditis: Causes and Symptoms



Adhesive Arachnoiditis is a chronic, painful, and often debilitating condition that remains underrecognized and misunderstood. It can lead to severe neurological impairment, life-altering pain, and a significant impact on daily living. Early education, awareness, and support are crucial in helping patients navigate life with this complex condition.


At the Arachnoiditis & Chronic Meningitis Collaborative Research Network (ACMCRN), we are dedicated to improving understanding and supporting those affected through research, education, and community.


What is Adhesive Arachnoiditis?


Adhesive Arachnoiditis is a rare neurological disorder involving inflammation of the arachnoid layer, one of the three protective membranes surrounding the brain and spinal cord. This inflammation can cause scar tissue (adhesions) to form, binding spinal nerves together and often leading to severe, chronic pain and neurological dysfunction.




Causes of Adhesive Arachnoiditis


Several known risk factors may contribute to the development of Adhesive Arachnoiditis:


Spinal Surgery and Procedures

Spinal surgeries, lumbar punctures, and procedures involving spinal hardware can trigger inflammation and adhesion formation.


Epidural Steroid Injections (ESIs)

Epidural steroid injections are not considered safe for people with Arachnoiditis. The FDA has issued a Black Box Warning on the serious neurological risks of ESIs, including adhesive arachnoiditis, paralysis, and even death.


Infections

Infections like meningitis or tuberculosis can inflame the arachnoid layer, increasing the risk.


Trauma

Traumatic injuries to the spine — such as those from car accidents or falls — may lead to inflammatory changes that result in Arachnoiditis.


Symptoms of Adhesive Arachnoiditis


Symptoms vary widely but often include:


  • Chronic, severe neuropathic pain (burning, stabbing, shooting sensations)

  • Numbness, tingling, or weakness in the limbs

  • Bladder, bowel, and sexual dysfunction

  • Coordination and balance problems

  • Muscle spasms and cramps

  • Emotional distress, including depression and anxiety


Diagnosis of Adhesive Arachnoiditis


Diagnosing Adhesive Arachnoiditis can be challenging. A combination of medical history, symptom evaluation, and MRI imaging is typically used to confirm the presence of adhesions and inflammation.


Management and Support


While there is no cure, symptom management can dramatically improve quality of life.


Pain and Symptom Management

Treatment options may include:

  • Neuropathic pain medications

  • Anti-inflammatory strategies

  • Carefully managed opioid therapy (when appropriate)


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Physical Therapy

Gentle, tailored exercises can help maintain function without exacerbating symptoms.


Psychological Support

Emotional well-being is just as important as physical health. ACMCRN offers Peer Support Meetings for patients, caregivers, and family members.


Alternative Therapies

Mindfulness, acupuncture, microcurrent therapy, and other integrative approaches may offer additional symptom relief.


Surgical Intervention

Surgical options are extremely limited and carry significant risks. Surgery is typically only considered in the most severe cases.


Close-up view of a physical therapist demonstrating exercises to a patient
Physical therapist illustrating exercises for patients with adhesive arachnoiditis.

Navigating Life with Adhesive Arachnoiditis


While challenges exist, education, support, and proactive care can help you live meaningfully with Adhesive Arachnoiditis.


  • Stay informed through trusted resources like ACMCRN.

  • Find specialized care using our Physician Directory.

  • Join support groups to connect with others who truly understand.

  • Advocate for yourself and your needs.


Together, we can empower patients, caregivers, and the medical community to drive better care and greater understanding.


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