Arachnoiditis

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ORPHA:137817OMIM:182950G03.9
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1Active trials16Specialists8Treatment centers

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UniteRare data is sourced from FDA.gov, ClinicalTrials.gov, Orphanet, OMIM, and NORD.
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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:

AnhidrosisHP:0000970Urinary bladder sphincter dysfunctionHP:0002839
Inheritance

Sporadic

Usually appears on its own, not inherited from a parent

Age of Onset

Adult

Begins in adulthood (age 18 or older)

Orphanet ↗OMIM ↗NORD ↗

FDA & Trial Timeline

1 event
Apr 2024Subarachnoid-Subarachnoid (S-S) Bypass Versus Adhesion Lysis in Spinal Arachnoiditis and Syringomyelia

Xuanwu Hospital, Beijing — NA

TrialRECRUITING

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 →

Clinical Trials

1 recruitingView all trials with filters →
N/A1 trial
Subarachnoid-Subarachnoid (S-S) Bypass Versus Adhesion Lysis in Spinal Arachnoiditis and Syringomyelia
N/A
Actively Recruiting
· Sites: Beijing, Beijing Municipality · Age: 1880 yrs

Specialists

16 foundView all specialists →
SC
Sara de Carvalho
WALTHAM, MA
Specialist
1 Arachnoiditis publication
ZL
Zhenlei Liu
Specialist
2 Arachnoiditis publications
WZ
Weikang Zhang
Specialist
2 Arachnoiditis publications
SL
Shaocheng Liu
Specialist
2 Arachnoiditis publications
XZ
Xiangyu Zhang
SALT LAKE CITY, UT
Specialist
2 Arachnoiditis publications
YW
Yutian Wang
Specialist
2 Arachnoiditis publications
HW
Hao Wu
Specialist
2 Arachnoiditis publications
MD
Massimo Donalisio
Specialist
1 Arachnoiditis publication
ME
Michael Egea
Specialist
1 Arachnoiditis publication
VD
Vincent Dunet
Specialist
1 Arachnoiditis publication
PO
Patrick Omoumi
Specialist
1 Arachnoiditis publication
CM
Charbel Mourad
Specialist
1 Arachnoiditis publication
AA
Ana Almeida
Specialist
1 Arachnoiditis publication
CR
Carina Reis
Specialist
1 Arachnoiditis publication
KH
Kun He
BROOKLYN, NY
Specialist
2 Arachnoiditis publications
AG
Anthony H Guarino
Specialist
PI on 1 active trial

Treatment Centers

8 centers
🏥 NORD

Baylor College of Medicine Rare Disease Center

Baylor College of Medicine

📍 Houston, TX

🏥 NORD

Stanford Medicine Rare Disease Center

Stanford Medicine

📍 Stanford, CA

🔬 UDN

NIH Clinical Center Undiagnosed Diseases Program

National Institutes of Health

📍 Bethesda, MD

🔬 UDN

UCLA UDN Clinical Site

UCLA Health

📍 Los Angeles, CA

🔬 UDN

Baylor College of Medicine UDN Clinical Site

Baylor College of Medicine

📍 Houston, TX

🔬 UDN

Harvard/MGH UDN Clinical Site

Massachusetts General Hospital

📍 Boston, MA

🏥 NORD

Mayo Clinic Center for Individualized Medicine

Mayo Clinic

📍 Rochester, MN

👤 Mayo Clinic Center for Individualized Medicine

🏥 NORD

UCLA Rare Disease Day Program

UCLA Health

📍 Los Angeles, CA

Travel Grants

No travel grants are currently matched to Arachnoiditis.

Search all travel grants →NORD Financial Assistance ↗

Community

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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.