Understanding Arachnoiditis
If you or someone you love has just heard the word Arachnoiditis, you are not alone.
Arachnoiditis is a complex neurological condition that can affect the spinal nerves and significantly change a person's life. Understanding the condition is an important first step toward finding appropriate care and support.
This page explains what Arachnoiditis is, its symptoms and possible causes, how it is diagnosed, and where to find additional information.
What Is Arachnoiditis?
Arachnoiditis is a neurological condition involving inflammation of the arachnoid mater, one of the three protective membranes surrounding the brain and spinal cord.
The arachnoid membrane lies between the dura mater and pia mater. Inflammation can lead to irritation, scarring, and changes in the tissues surrounding the spinal nerves.
In some cases, inflammation progresses to Adhesive Arachnoiditis, a more severe form of the condition in which scar tissue causes spinal nerve roots to stick together or adhere to surrounding structures. This can interfere with normal nerve function and contribute to persistent pain, sensory disturbances, and neurological symptoms.
Arachnoiditis can affect multiple body systems, and symptoms vary considerably from person to person.
Symptoms of Arachnoiditis
Arachnoiditis can cause a wide range of symptoms depending on the location and severity of nerve involvement. Symptoms may develop gradually or appear suddenly, and their intensity can fluctuate over time.
Commonly reported symptoms include:
-
Persistent back, neck, or radiating nerve pain
-
Burning, electric shock-like, or shooting pain
-
Numbness, tingling, or altered sensation
-
Muscle weakness, spasms, or cramping
-
Difficulty walking, standing, or sitting for extended periods
-
Changes in bladder, bowel, or sexual function
-
Balance and coordination difficulties
Some individuals also report fatigue, sleep disturbances, and symptoms involving the autonomic nervous system. Not everyone experiences the same symptoms, and the severity of pain does not always correspond to the extent of changes visible on imaging.
Causes and Risk Factors
Arachnoiditis can develop when the arachnoid membrane becomes inflamed or irritated. In some cases, this inflammation leads to scarring and adhesions involving the spinal nerve roots.
Several conditions and medical procedures have been associated with the development of Arachnoiditis.
Potential causes and risk factors include:
-
Spinal surgery: Surgical procedures involving the spine, particularly those complicated by bleeding, infection, or significant tissue injury.
-
Spinal injections: Certain medications or substances introduced into or near the spinal canal may cause irritation or inflammation.
-
Infections: Meningitis and other infections affecting the membranes surrounding the spinal cord.
-
Spinal trauma: Injuries involving the spine or spinal cord.
-
Bleeding within the spinal canal: Blood entering the spaces surrounding the spinal cord can contribute to inflammation.
-
Chemical irritation: Exposure to certain substances, including historically used contrast agents, has been associated with Arachnoiditis.
Important information about epidural steroid injections
In 2014, the U.S. Food and Drug Administration (FDA) issued a safety communication warning that epidural corticosteroid injections may result in rare but serious neurological complications.
The FDA also stated that corticosteroids are not approved for injection into the epidural space.
This warning does not establish that every epidural steroid injection causes Arachnoiditis, but it highlights the importance of understanding potential risks before undergoing spinal procedures.
In some individuals, no definitive cause can be identified.
How Is Arachnoiditis Diagnosed?
Diagnosing Arachnoiditis can be challenging because its symptoms overlap with those of other neurological and spinal conditions. Diagnosis typically involves a combination of medical history, neurological examination, and imaging studies.
Magnetic Resonance Imaging (MRI)
MRI is generally the preferred imaging method for evaluating suspected Adhesive Arachnoiditis. It can reveal characteristic changes involving the spinal nerve roots, including:
-
Clumping or adhesion of nerve roots
-
Nerve roots adhering to the outer margins of the thecal sac, sometimes described as the "empty thecal sac" sign
-
Abnormal distribution or distortion of nerve roots within the spinal canal
-
In some cases, associated cysts or changes in cerebrospinal fluid (CSF) flow
Other Diagnostic Considerations
A healthcare professional may also evaluate:
-
Previous spinal surgeries, injections, infections, or injuries
-
The pattern and progression of neurological symptoms
-
Changes in sensation, muscle strength, and reflexes
-
Other conditions that may produce similar symptoms
CT myelography may be considered in selected cases when MRI findings are inconclusive or additional anatomical information is needed. However, because it is an invasive procedure, its potential benefits and risks should be carefully evaluated.
An Important Consideration
Not all individuals with Arachnoiditis have obvious abnormalities on routine imaging. Clinical findings and imaging results must be interpreted together, ideally by a healthcare professional familiar with the condition.
Related Conditions
Arachnoiditis may occur alongside other spinal, neurological, and connective tissue conditions. Although these conditions can share symptoms, their presence does not necessarily mean that one caused the other.
Spinal Cerebrospinal Fluid (CSF) Leaks
Spinal CSF leaks occur when cerebrospinal fluid escapes through a defect in the dura mater, the protective membrane surrounding the spinal cord and nerve roots.
CSF leaks can cause positional headaches, neck pain, dizziness, and other neurological symptoms. Some individuals with Arachnoiditis also experience CSF leaks or disturbances in CSF pressure and circulation.
Tarlov Cysts
Tarlov cysts are fluid-filled sacs that typically develop around spinal nerve roots, most commonly in the sacral region. Although many Tarlov cysts cause no symptoms, some can contribute to pain, sensory disturbances, and bladder or bowel dysfunction. These symptoms may overlap with those of Arachnoiditis.
Connective Tissue Disorders
Connective tissue disorders, including Ehlers-Danlos syndromes (EDS) and hypermobility spectrum disorders (HSD), can affect the structural integrity of tissues throughout the body.
Some individuals with connective tissue disorders experience spinal instability, meningeal abnormalities, or spontaneous CSF leaks. These conditions may complicate the evaluation and management of neurological symptoms.
Research is still needed to better understand possible relationships between connective tissue disorders and Arachnoiditis.
Why These Connections Matter
Recognizing coexisting conditions can help healthcare professionals develop a more comprehensive approach to diagnosis and treatment.
Patients experiencing unexplained or overlapping symptoms may benefit from evaluation by specialists familiar with complex spinal and neurological disorders.
Medical Alert & Advocacy Sheet
Be prepared to communicate your medical needs.
Our Medical Alert & Advocacy Sheet is designed to help people living with Arachnoiditis communicate important information about their condition, medical history, and care considerations to healthcare professionals.
When to Seek Medical Help
Arachnoiditis can cause persistent neurological symptoms that change over time. Recognizing new or worsening symptoms is important because some changes may indicate complications or other conditions requiring prompt medical evaluation.
Symptoms Requiring Emergency Medical Attention
Seek immediate emergency medical care if you experience:
-
New loss of bladder or bowel control, or an inability to urinate
-
New numbness or loss of sensation in the groin, genital area, or inner thighs (saddle anesthesia)
-
Rapidly developing or worsening weakness in one or both legs
These symptoms may indicate cauda equina syndrome or another serious neurological condition requiring emergency evaluation.
When to Contact Your Healthcare Provider
Contact your healthcare provider promptly if you experience:
-
New or progressively worsening neurological symptoms
-
Significant changes in your usual pain pattern
-
Increasing difficulty walking or maintaining balance
-
New or worsening numbness, tingling, or muscle weakness
-
Persistent headaches that worsen when upright, particularly following spinal procedures
An Important Reminder
Not every change in symptoms is necessarily caused by Arachnoiditis. Other neurological or spinal conditions may produce similar symptoms and require different treatments.
Early recognition and appropriate medical evaluation can help identify potentially treatable complications.
Treatment Options
There is currently no established cure for Adhesive Arachnoiditis. Treatment generally focuses on managing symptoms, preserving neurological function, improving quality of life, and addressing associated conditions.
Because Arachnoiditis affects individuals differently, treatment plans should be tailored to each patient's symptoms, medical history, and overall health.
Common Treatment Approaches
Depending on individual needs, treatment may include:
-
Pain management: Medications and other approaches to help manage neuropathic pain, inflammation, and muscle spasms.
-
Physical rehabilitation: Carefully adapted movement, physical therapy, and rehabilitation strategies designed around individual limitations and tolerance.
-
Neurological care: Monitoring changes in nerve function and evaluating new or worsening neurological symptoms.
-
Management of associated conditions: Addressing complications such as bladder or bowel dysfunction, mobility limitations, and other coexisting conditions.
-
Psychological and emotional support: Counseling, peer support, and coping strategies to help individuals navigate the challenges of living with a chronic neurological condition.
Dr. Forest Tennant's Three-Component Protocol
Dr. Forest Tennant developed a Three-Component Protocol intended to address inflammation, pain, and neuroregeneration in individuals with Arachnoiditis.
His approach has been influential within the Arachnoiditis patient community and remains an important educational resource.
However, the protocol has not been established as a standard of care through large, controlled clinical trials. Treatment decisions should be made in consultation with qualified healthcare professionals who can evaluate the potential benefits, risks, and individual medical circumstances.
A Note About Invasive Procedures
Individuals with Arachnoiditis should discuss the potential risks and benefits of additional spinal procedures with their healthcare providers.
Some invasive procedures may carry risks of further irritation, inflammation, or neurological complications. Decisions should be based on individual circumstances and careful medical evaluation.
Living With Arachnoiditis
Living with Arachnoiditis can affect nearly every aspect of daily life. Chronic pain, neurological symptoms, fatigue, and mobility limitations may make everyday activities challenging and unpredictable.
For many individuals, Arachnoiditis affects more than physical health. Changes in independence, employment, relationships, and social activities can create significant emotional and financial challenges.
Managing Daily Life
Although everyone's experience is different, some strategies may help individuals manage daily challenges:
-
Pacing activities: Balancing activity with rest and adapting routines to individual limitations.
-
Adaptive equipment: Using mobility aids, supportive seating, and other assistive devices when appropriate.
-
Symptom tracking: Documenting changes in pain, neurological symptoms, and functional abilities to share with healthcare providers.
-
Coordinated medical care: Working with healthcare professionals to address pain, neurological symptoms, and associated conditions.
-
Emotional support: Connecting with others who understand the challenges of living with a complex neurological condition.
Finding Support and Community
Living with a rare condition can feel isolating, particularly when family members, friends, or healthcare professionals are unfamiliar with Arachnoiditis.
Connecting with others who share similar experiences can provide encouragement, practical knowledge, and a sense of belonging.
If you're newly diagnosed or looking for guidance, visit our Starting Point page for educational resources, treatment information, and practical guidance.
At the Arachnoiditis & Chronic Meningitis Collaborative Network (ACMCRN), we bring patients, caregivers, healthcare professionals, and researchers together through education, peer support, advocacy, and collaborative research.
You do not have to navigate Arachnoiditis alone.
Read More About Arachnoiditis
