Skip to main content
U.S. Department of Health & Human Services
National Institutes of Health
NCATS
National Center for Advancing and Translational Sciences National Center for Advancing and Translational Sciences Genetic and Rare Diseases Information Center, a program of the National Center for Advancing and Translational Sciences Genetic and Rare Diseases Information Center, a program of the National Center for Advancing and Translational Sciences
1-888-205-2311
Menu Search
1-888-205-2311
Menu
  • Home
  • Diseases expand submenu for Diseases
    • Browse A-Z
    • Find Diseases By Category expand submenu for Find Diseases By Category
      • Autoimmune / Autoinflammatory diseases
      • Bacterial infections
      • Behavioral and mental disorders
      • Blood Diseases
      • Chromosome Disorders
      • Congenital and Genetic Diseases
      • Connective tissue diseases
      • Digestive Diseases
      • Ear, Nose, and Throat Diseases
      • Endocrine Diseases
      • Environmental Diseases
      • Eye diseases
      • Female Reproductive Diseases
      • Fungal infections
      • Heart Diseases
      • Hereditary Cancer Syndromes
      • Immune System Diseases
      • Kidney and Urinary Diseases
      • Lung Diseases
      • Male Reproductive Diseases
      • Metabolic disorders
      • Mouth Diseases
      • Musculoskeletal Diseases
      • Myelodysplastic Syndromes
      • Nervous System Diseases
      • Newborn Screening
      • Nutritional diseases
      • Parasitic diseases
      • Rare Cancers
      • RDCRN
      • Skin Diseases
      • Viral infections
    • List of FDA Orphan Drugs
    • GARD Information Navigator
    • FAQs About Rare Diseases
  • Guides expand submenu for Guides
    • Patients, Families and Friends expand submenu for Patients, Families and Friends
      • How to Find a Disease Specialist
      • Tips for the Undiagnosed
      • Support for Patients and Families
      • Tips for Finding Financial Aid
      • Help with Travel Costs
      • How to Get Involved in Research
      • FAQs About Chromosome Disorders
      • Medical and Science Glossaries
    • Healthcare Professionals expand submenu for Healthcare Professionals
      • Caring for Your Patient with a Rare Disease
      • ICD Coding for Rare Diseases
      • FindZebra
    • Researchers expand submenu for Researchers
      • Finding Funding Opportunities
    • Teachers and Students expand submenu for Teachers and Students
      • Teaching Resources
  • News expand submenu for News
    • In The Spotlight
    • News Archive
    • Connect with GARD
    • Media Requests
  • About GARD expand submenu for About GARD
    • Contact GARD
    • About GARD
    • Videos
    • Brochures and Publications
  • En Español expand submenu for En Español
    • Enfermedades
    • Contacte GARD
    • Guías de Información expand submenu for Guías de Información
      • Preguntas Más Frecuentes Sobre Enfermedades Raras
      • Como Encontrar un Especialista en su Enfermedad
      • Consejos Para una Condición no Diagnosticada
      • Ayuda para Pacientes y Familias
      • Ayuda Financiera para Mi Enfermedad
      • Participe en Estudios de Investigación
      • Preguntas Más Frecuentes Sobre los Trastornos Cromosómicos
    • Sobre GARD
  • Home
© Positive Exposure
banner showing people with disabilities and/or their relatives
  1. Home
  2. Diseases
  3. Arachnoiditis
print
  • Table of Contents expand submenu for Table of Contents
    • Summary
    • Symptoms
    • Cause
    • Inheritance
    • Treatment
    • Prognosis
    • Find a Specialist
    • Related Diseases
    • Research
    • Organizations
    • Learn More
    • News & Events
    • GARD Answers
    • References
  • Browse A-Z
  • Find Diseases By Category expand submenu for Find Diseases By Category
    • Autoimmune / Autoinflammatory diseases
    • Bacterial infections
    • Behavioral and mental disorders
    • Blood Diseases
    • Chromosome Disorders
    • Congenital and Genetic Diseases
    • Connective tissue diseases
    • Digestive Diseases
    • Ear, Nose, and Throat Diseases
    • Endocrine Diseases
    • Environmental Diseases
    • Eye diseases
    • Female Reproductive Diseases
    • Fungal infections
    • Heart Diseases
    • Hereditary Cancer Syndromes
    • Immune System Diseases
    • Kidney and Urinary Diseases
    • Lung Diseases
    • Male Reproductive Diseases
    • Metabolic disorders
    • Mouth Diseases
    • Musculoskeletal Diseases
    • Myelodysplastic Syndromes
    • Nervous System Diseases
    • Newborn Screening
    • Nutritional diseases
    • Parasitic diseases
    • Rare Cancers
    • RDCRN
    • Skin Diseases
    • Viral infections
  • List of FDA Orphan Drugs
  • GARD Information Navigator
  • FAQs About Rare Diseases
You can help advance
rare disease research!
You can help advance rare disease research!
toolbox
Find out how with the NCATS Toolkit.

Arachnoiditis


Title


Other Names:
Spinal arachnoiditis
Categories:
Nervous System Diseases
GARD Information Navigator

GARD Information Navigator

Try our interactive tool for help finding information, services, experts, financial aid, and more!

Summary Summary


Listen
Arachnoiditis is a pain disorder caused by inflammation of the arachnoid, one of the membranes that surrounds and protects the nerves of the spinal cord. The inflammation may occur due to irritation from chemicals; infection; direct injury to the spine; chronic compression of spinal nerves; or complications from spinal surgery or other spinal procedures. It may result in scar tissue and adhesions, which cause the spinal nerves to “stick” together. If arachnoiditis affects the function of nerves, it can cause symptoms such as numbness, tingling, and a characteristic stinging and burning pain in the lower back or legs. In some people. it may affect the bladder, bowel, and sexual function. Very severe arachnoiditis can result in paralysis of the legs.[1] Treatment aims to relieve pain and improve symptoms that impair function. Treatment may include pain medications, physical therapy, and psychotherapy. Surgical treatment is controversial because it offers only short-term relief and may increase formation of scar tissue.[1][2]
Last updated: 8/17/2016

Symptoms Symptoms


Listen
Arachnoiditis can cause a number of symptoms including numbness; tingling; loss of temperature sensation; and a characteristic stinging and burning pain in the lower back, limbs, and trunk.[1][3] Pain is often made worse by activity.[3] Some people have debilitating muscle cramps or spasms; loss of balance; tinnitus; problems with vision and hearing; or bladder, bowel, or sexual dysfunction.[1][3] In severe cases, arachnoiditis may lead to paralysis of the legs.[1]
Last updated: 8/17/2016

This table lists symptoms that people with this disease may have. For most diseases, symptoms will vary from person to person. People with the same disease may not have all the symptoms listed. This information comes from a database called the Human Phenotype Ontology (HPO) . The HPO collects information on symptoms that have been described in medical resources. The HPO is updated regularly. Use the HPO ID to access more in-depth information about a symptom.

Showing of 17 |
Medical Terms Other Names
Learn More:
HPO ID
80%-99% of people have these symptoms
Abnormality of vision
Abnormality of sight
Vision issue
[ more ]
0000504
Arthralgia
Joint pain
0002829
Hearing impairment
Deafness
Hearing defect
[ more ]
0000365
Hyporeflexia
Decreased reflex response
Decreased reflexes
[ more ]
0001265
Meningitis 0001287
Muscle weakness
Muscular weakness
0001324
Paresthesia
Pins and needles feeling
Tingling
[ more ]
0003401
Tinnitus
Ringing in ears
Ringing in the ears
[ more ]
0000360
30%-79% of people have these symptoms
Anhidrosis
Lack of sweating
Sweating dysfunction
[ more ]
0000970
5%-29% of people have these symptoms
Fatigue
Tired
Tiredness
[ more ]
0012378
Hydrocephalus
Too much cerebrospinal fluid in the brain
0000238
Migraine
Intermittent migraine headaches
Migraine headache
Migraine headaches
[ more ]
0002076
Urinary bladder sphincter dysfunction 0002839
Percent of people who have these symptoms is not available through HPO
Abnormality of metabolism/homeostasis
Laboratory abnormality
Metabolism abnormality
[ more ]
0001939
Abnormality of the skeletal system
Skeletal abnormalities
Skeletal anomalies
[ more ]
0000924
Autosomal dominant inheritance 0000006
Spastic paraparesis 0002313
Showing of 17 |
Do you have more information about symptoms of this disease? We want to hear from you.
Last updated: 2/1/2019
Do you have updated information on this disease? We want to hear from you.

Cause Cause


Listen
Arachnoiditis has many possible causes, including:[1][3][2]
  • mechanical injury during spinal surgery, or complications from spinal surgery (about 60% of cases)
  • trauma to the spinal cord
  • one or more spinal taps
  • steroid epidural injections or other injections
  • spinal and epidural anesthesia
  • myelography
  • bacterial or viral spinal infections
The initial symptoms of arachnoiditis are caused by inflammation of the arachnoid, and the formation of scar tissue and adhesions later cause the more severe symptoms as the condition progresses.
Last updated: 8/17/2016

Inheritance Inheritance


Listen
Arachnoiditis is generally not an inherited condition and typically results from inflammation due to prior spinal surgery, other procedures on the spine (such as injections), trauma, or infection. Familial cases of arachnoiditis have very rarely been reported. To our knowledge, only two families with multiple affected family members have been described in the literature, with possible autosomal dominant or multigenic inheritance (due to the interaction of multiple genes).[4][5]
Last updated: 8/17/2016

Treatment Treatment


Listen
Arachnoiditis is difficult to treat. Management aims to relieve pain and improve symptoms that impair fuction. Treatment may involve pain management, physical therapy, and psychotherapy. Surgical intervention is controversial because it generally provides only short-term relief and may increase the formation of scar tissue, making the condition worse.[1][2]
Last updated: 8/17/2016

Prognosis Prognosis


Listen
Arachnoiditis causes chronic pain and neurological deficits. The disease does not improve significantly with treatment and does not have a predictable pattern of symptoms, severity, or progression. [1] Some people with arachnoiditis may have milder symptoms which do not get much worse over time, although the aging process usually does add to the severity of the symptoms.  Others may quickly progress to severe neurological symptoms that lead to paralysis. The majority of people with arachnoiditis appear to fall somewhere between these extremes.[3][6] 
Last updated: 8/17/2016

Find a Specialist Find a Specialist


Listen

If you need medical advice, you can look for doctors or other healthcare professionals who have experience with this disease. You may find these specialists through advocacy organizations, clinical trials, or articles published in medical journals. You may also want to contact a university or tertiary medical center in your area, because these centers tend to see more complex cases and have the latest technology and treatments.

If you can’t find a specialist in your local area, try contacting national or international specialists. They may be able to refer you to someone they know through conferences or research efforts. Some specialists may be willing to consult with you or your local doctors over the phone or by email if you can't travel to them for care.

You can find more tips in our guide, How to Find a Disease Specialist. We also encourage you to explore the rest of this page to find resources that can help you find specialists.

Healthcare Resources

  • To find a medical professional who specializes in genetics, you can ask your doctor for a referral or you can search for one yourself. Online directories are provided by the American College of Medical Genetics and the National Society of Genetic Counselors. If you need additional help, contact a GARD Information Specialist. You can also learn more about genetic consultations from Genetics Home Reference.

Related Diseases Related Diseases


Listen

Related diseases are conditions that have similar signs and symptoms. A health care provider may consider these conditions in the table below when making a diagnosis. Please note that the table may not include all the possible conditions related to this disease.

Conditions with similar signs and symptoms from Orphanet
Differential diagnoses include intra-spinal hematoma or dislodged disc fragment if the condition presents immediately after surgery, and Failed Back Surgery Syndrome (FBSS). Some patients are diagnosed with fibromyalgia (see this term), but these symptoms are likely to occur as a secondary feature due to the altered spinal dynamics.
Visit the Orphanet disease page for more information.

Research Research


Listen

Research helps us better understand diseases and can lead to advances in diagnosis and treatment. This section provides resources to help you learn about medical research and ways to get involved.

Clinical Research Resources

  • The Centers for Mendelian Genomics program is working to discover the causes of rare genetic disorders. For more information about applying to the research study, please visit their website.
  • ClinicalTrials.gov lists trials that are related to Arachnoiditis. Click on the link to go to ClinicalTrials.gov to read descriptions of these studies.

    Please note: Studies listed on the ClinicalTrials.gov website are listed for informational purposes only; being listed does not reflect an endorsement by GARD or the NIH. We strongly recommend that you talk with a trusted healthcare provider before choosing to participate in any clinical study.
  • Arachnoiditis & Chronic Meningitis Collaborative Research Network (ACMCRN)
    Website: https://www.facebook.com/groups/ACMCRN/

Organizations Organizations


Listen

Support and advocacy groups can help you connect with other patients and families, and they can provide valuable services. Many develop patient-centered information and are the driving force behind research for better treatments and possible cures. They can direct you to research, resources, and services. Many organizations also have experts who serve as medical advisors or provide lists of doctors/clinics. Visit the group’s website or contact them to learn about the services they offer. Inclusion on this list is not an endorsement by GARD.

Organizations Supporting this Disease

  • American Chronic Pain Association (ACPA)
    P.O. Box 850
    Rocklin, CA 95677-0850
    Toll-free: 800-533-3231
    Telephone: 916-632-0922
    Fax: 916-652-8190
    E-mail: ACPA@theacpa.org
    Website: https://theacpa.org/
  • Pain Relief Foundation
    Clinical Sciences Centre
    University Hospital Aintree, Lower Lane
    Liverpool L9 7AL
    United Kingdom
    Telephone: 0151 529 5820
    Fax: 0151 529 5821
    E-mail: secretary@painrelieffoundation.org.uk
    Website: https://painrelieffoundation.org.uk/

Social Networking Websites

  • Visit the following Facebook groups or pages related to Arachnoiditis:
    Arachnoiditis Society
    Arachnoiditis: Helping each other cope!
    Arachnoiditis - Learning to Live Again
    Arachnoiditis Society for Awareness and Prevention (ASAP)
    ARACHNOIDITIS
    Arachnoiditis Everyday
    Arachnoiditis Together We Fight
Do you know of an organization? We want to hear from you.

Learn More Learn More


Listen

These resources provide more information about this condition or associated symptoms. The in-depth resources contain medical and scientific language that may be hard to understand. You may want to review these resources with a medical professional.

Where to Start

  • The American Academy of Neurology has written a summary on this condition. Click on American Academy of Neurology to view the article.
  • The National Institute of Neurological Disorders and Stroke (NINDS) collects and disseminates research information related to neurological disorders. Click on the link to view information on this topic.
  • The National Organization for Rare Disorders (NORD) has a report for patients and families about this condition. NORD is a patient advocacy organization for individuals with rare diseases and the organizations that serve them.

In-Depth Information

  • Medscape Reference provides information on this topic. You may need to register to view the medical textbook, but registration is free.
  • The Monarch Initiative brings together data about this condition from humans and other species to help physicians and biomedical researchers. Monarch’s tools are designed to make it easier to compare the signs and symptoms (phenotypes) of different diseases and discover common features. This initiative is a collaboration between several academic institutions across the world and is funded by the National Institutes of Health. Visit the website to explore the biology of this condition.
  • Online Mendelian Inheritance in Man (OMIM) is a catalog of human genes and genetic disorders. Each entry has a summary of related medical articles. It is meant for health care professionals and researchers. OMIM is maintained by Johns Hopkins University School of Medicine. 
  • Orphanet is a European reference portal for information on rare diseases and orphan drugs. Access to this database is free of charge.
  • PubMed is a searchable database of medical literature and lists journal articles that discuss Arachnoiditis. Click on the link to view a sample search on this topic.

News & Events News & Events


Listen

News

  • NIH Hosts Rare Disease Day Event, Twitter Chat
    January 24, 2019

GARD Answers GARD Answers


Listen

Questions sent to GARD may be posted here if the information could be helpful to others. We remove all identifying information when posting a question to protect your privacy. If you do not want your question posted, please let us know. Submit a new question

  • Is arachnoiditis progressive to adhesive arachnoiditis in a person who had two back surgeries, six spinal injections and one epidural anesthetic for knee replacement? See answer

  • My father had arachnoiditis. Can you provide information about this condition, including symptoms, causes, and if it is genetic? See answer


Have a question? Contact a GARD Information Specialist.

References References


  1. NINDS Arachnoiditis Information Page. National Institute of Neurological Disorders and Stroke (NINDS). July 8, 2015; http://www.ninds.nih.gov/disorders/arachnoiditis/arachnoiditis.htm.
  2. Arachnoiditis. NORD. 2013; http://rarediseases.org/rare-diseases/arachnoiditis/.
  3. Antonio Aldrete. Arachnoiditis. Orphanet. March, 2010; http://www.orpha.net/consor4.01/www/cgi-bin/OC_Exp.php?lng=EN&Expert=137817.
  4. Spinal Arachnoiditis. Online Mendelian Inheritance in Man (OMIM). July 2, 2012; http://www.ncbi.nlm.nih.gov/entrez/dispomim.cgi?id=182950.
  5. Pasoglou V., et. al. Familial adhesive arachnoiditis associated with syringomyelia. AJNR Am J Neuroradiol. June, 2014; 35(6):1232-1236.
  6. Guyer DW, Wiltse LL, Eskay ML, Guyer BH. The long-range prognosis of arachnoiditis. Spine (Phila Pa 1976). December, 1989; 14(12):1332-1341. https://www.ncbi.nlm.nih.gov/pubmed/2617363.
Do you know of a review article? We want to hear from you.
You can help advance
rare disease research!
You can help advance rare disease research!
toolbox
Find out how with the NCATS Toolkit.

Share this content:

Share this content:

twitter-icon facebook-icon contact-icon link-icons

Copy Link

Link copied to your clipboard.

printer-icon

You May Be Interested In

How to Find a Disease Specialist

How to Find a Disease Specialist

Tips for the Undiagnosed

Tips for the Undiagnosed

Support for Patients and Families

Support for Patients and Families

Tips for Finding Financial Aid

Tips for Finding Financial Aid

Help with Travel Costs

Help with Travel Costs

How to Get Involved in Research

How to Get Involved in Research

FAQs About Chromosome Disorders

FAQs About Chromosome Disorders

Medical and Science Glossaries

Medical and Science Glossaries

Caring for Your Patient with a Rare Disease

Caring for Your Patient with a Rare Disease

ICD Coding for Rare Diseases

ICD Coding for Rare Diseases

FindZebra

FindZebra

Finding Funding Opportunities

Finding Funding Opportunities

Teaching Resources

Teaching Resources

placeholder for the horizontal scroll slider Back to top
GARD Home NCATS Home Site Map Browse Glossary A-Z Privacy Notice Disclaimer Accessibility FOIA OIG

If you have problems viewing PDF files, download the latest version of Adobe Reader

For language access assistance, contact the NCATS Public Information Officer

Genetic and Rare Diseases Information Center (GARD) - PO Box 8126, Gaithersburg, MD 20898-8126 - Toll-free: 1-888-205-2311

contact gard Office of Rare Disease Research Facebook Page Office of Rare Disease Research on Twitter
Listen