Overview
Arachnoiditis is a chronic inflammatory condition affecting the arachnoid membrane, one of the three meninges (protective membranes) that surround the brain and spinal cord. The inflammation leads to the formation of scar tissue and adhesions, which can cause the spinal nerve roots to clump together and become dysfunctional. This condition most commonly affects the spinal arachnoid membrane, particularly in the lumbar (lower back) region, and is sometimes referred to as spinal arachnoiditis or adhesive arachnoiditis. The condition primarily affects the nervous system and can cause a wide range of debilitating symptoms including chronic and severe burning pain in the lower back and legs, numbness and tingling in the extremities, muscle cramps and spasms, bladder and bowel dysfunction, and in severe cases, paralysis of the lower limbs. Some patients also experience sexual dysfunction and difficulty sitting for prolonged periods. The pain associated with arachnoiditis is often described as neuropathic in nature and can be persistent and difficult to manage. Arachnoiditis is most commonly acquired rather than inherited, with known causes including complications from spinal surgery, epidural injections, intrathecal injections of certain substances (including some contrast dyes formerly used in myelography), spinal infections (such as meningitis or tuberculosis), and spinal trauma. There is currently no cure for arachnoiditis, and treatment is primarily focused on symptom management and improving quality of life. Treatment approaches include pain management with medications (such as anti-inflammatory drugs, neuropathic pain agents, and in some cases opioids), physical therapy, transcutaneous electrical nerve stimulation (TENS), and psychological support. Surgical intervention is generally not recommended as it may worsen the condition by promoting further scar tissue formation.
Also known as:
Clinical phenotype terms— hover any for plain English:
Sporadic
Usually appears on its own, not inherited from a parent
Adult
Begins in adulthood (age 18 or older)
FDA & Trial Timeline
1 eventXuanwu Hospital, Beijing — NA
Data sourced from FDA regulatory filings and ClinicalTrials.gov. Updated periodically.
Treatments
No FDA-approved treatments are currently listed for Arachnoiditis.
1 clinical trialare actively recruiting — trials can provide access to cutting-edge therapies.
View clinical trials →Treatment Centers
8 centersBaylor College of Medicine Rare Disease Center ↗
Baylor College of Medicine
📍 Houston, TX
🏥 NORDStanford Medicine Rare Disease Center ↗
Stanford Medicine
📍 Stanford, CA
🔬 UDNNIH Clinical Center Undiagnosed Diseases Program ↗
National Institutes of Health
📍 Bethesda, MD
🔬 UDNUCLA UDN Clinical Site ↗
UCLA Health
📍 Los Angeles, CA
🔬 UDNBaylor College of Medicine UDN Clinical Site ↗
Baylor College of Medicine
📍 Houston, TX
🔬 UDNHarvard/MGH UDN Clinical Site ↗
Massachusetts General Hospital
📍 Boston, MA
🏥 NORDMayo Clinic Center for Individualized Medicine ↗
Mayo Clinic
📍 Rochester, MN
👤 Mayo Clinic Center for Individualized Medicine
🏥 NORDUCLA Rare Disease Day Program ↗
UCLA Health
📍 Los Angeles, CA
Travel Grants
No travel grants are currently matched to Arachnoiditis.
Community
No community posts yet. Be the first to share your experience with Arachnoiditis.
Start the conversation →Latest news about Arachnoiditis
Disease timeline:
New recruiting trial: Subarachnoid-Subarachnoid (S-S) Bypass Versus Adhesion Lysis in Spinal Arachnoiditis and Syringomyelia
A new clinical trial is recruiting patients for Arachnoiditis
Caregiver Resources
NORD Caregiver Resources
Support, advocacy, and financial assistance for caregivers of rare disease patients.
Mental Health Support
Rare disease caregiving can be isolating. Connect with counseling and peer support.
Family & Caregiver Grants
Financial assistance programs specifically for caregivers of rare disease patients.
Social Security Disability
Learn how rare disease patients may qualify for SSDI/SSI benefits.
Common questions about Arachnoiditis
What is Arachnoiditis?
Arachnoiditis is a chronic inflammatory condition affecting the arachnoid membrane, one of the three meninges (protective membranes) that surround the brain and spinal cord. The inflammation leads to the formation of scar tissue and adhesions, which can cause the spinal nerve roots to clump together and become dysfunctional. This condition most commonly affects the spinal arachnoid membrane, particularly in the lumbar (lower back) region, and is sometimes referred to as spinal arachnoiditis or adhesive arachnoiditis. The condition primarily affects the nervous system and can cause a wide rang
How is Arachnoiditis inherited?
Arachnoiditis follows a sporadic inheritance pattern. Genetic counseling can help families understand recurrence risk and testing options.
At what age does Arachnoiditis typically begin?
Typical onset of Arachnoiditis is adult. Age of onset can vary across affected individuals.
Are there clinical trials for Arachnoiditis?
Yes — 1 recruiting clinical trial is currently listed for Arachnoiditis on UniteRare. See the clinical trials section on this page for phase, sponsor, and site details sourced from ClinicalTrials.gov.
Which specialists treat Arachnoiditis?
16 specialists and care centers treating Arachnoiditis are listed on UniteRare, sourced from ClinicalTrials.gov principal investigators, published research, and the NPPES NPI registry.