Arachnoiditis

Title

Other Names:

Spinal arachnoiditis

Categories:

Nervous System Diseases

Summary Summary

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

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: 12/1/2020

Do you have updated information on this disease? We want to hear from you.

Cause Cause

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

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

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

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

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

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

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

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
Website: https://painrelieffoundation.org.uk/

Social Networking Websites

Visit the following Facebook groups 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

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) (NINDS) collects and disseminates research information related to neurological disorders. Click on the link to view information on this topic.

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

News

NORD RareLaunch® Workshops
December 1, 2020
Rare Diseases Are Not Rare - Gallery of Creative Work Raises Awareness of Rare Diseases
September 1, 2020
NIH-Supported Research Survey to Examine Impact of COVID-19 on Rare Diseases Community
May 22, 2020
NCATS Translational Approach Addresses COVID-19
May 21, 2020

GARD Answers GARD Answers

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.

Have a question? Contact a GARD Information Specialist.

References References

NINDS Arachnoiditis Information Page. National Institute of Neurological Disorders and Stroke (NINDS). July 8, 2015; http://www.ninds.nih.gov/disorders/arachnoiditis/arachnoiditis.htm.
Arachnoiditis. NORD. 2013; http://rarediseases.org/rare-diseases/arachnoiditis/.
Antonio Aldrete. Arachnoiditis. Orphanet. March, 2010; http://www.orpha.net/consor4.01/www/cgi-bin/OC_Exp.php?lng=EN&Expert=137817.
Spinal Arachnoiditis. Online Mendelian Inheritance in Man (OMIM). July 2, 2012; http://www.ncbi.nlm.nih.gov/entrez/dispomim.cgi?id=182950.
Pasoglou V., et. al. Familial adhesive arachnoiditis associated with syringomyelia. AJNR Am J Neuroradiol. June, 2014; 35(6):1232-1236.
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.