[This post is for resource and informational purposes only and is NOT intended as medical advice or guidance. All visitors are advised to consult a trustworthy physician prior to making any assumptions about prognosis, diagnosis, or changes in Arachnoiditis care or treatment.]
Arachnoiditis is a spinal cord injury resulting from inflammation in the arachnoid layer of the spinal canal which results in the clumping or sticking of nerve roots inside the spinal fluid. The nerves adhere together resulting in multiple diverse neurological consequences.
Causes: Neurotoxins in spinal injections (i.e. Epidural Steriod Injection w/ Depo-Medrol, methylprednisolone, Kenalog, and spinal anesthesia ~single injection AND extended use catheters w/ 5% lidocaine, 2.5% lidocaine, and other drugs not approved by the FDA for spinal use but used off label for this purpose; as well as other intraspinal drugs such as amphotericin B and methotrexate Chemonucleosis with hymopapain
Multiple Lumbar Punctures (spinal tap, epidural blood patch, spinal and epidural anesthesia) Infection (e.g. Meningitis ~viral, chemical, bacterial, fungal)
Spinal Surgery, Subarachnoid Heamorrhage Multiple Lumbar Punctures,Trauma (to the spine), Spinal Stenosis (congenital/degenerative),Chronic Disc Prolapse,Degenerative Disc Disease, Myelographic Dyes (Especially Oil Based such as Myodil(pantopaque)
“Spinal arachnoiditis is a rare disease caused by fibrosis and adhesion of the arachnoid membrane due to chronic inflammation. The causes of arachnoiditis are infection, spinal surgery, intraspinal injection of steroid or myelography dye, and spinal anesthesia…Symptoms of spinal arachnoiditis occurred 6 months after a single caudal block in (A 60-year-old woman who had received a single caudal block 6 months before symptom onset.)…Clinicians should be aware of this possible delayed complication.” ~Delayed occurrence of spinal arachnoiditis following a caudal block J Spinal Cord Med. 2011 Nov; 34(6): 616–619 Full Article at The Journal of Spinal Cord Medicine.
“Arachnoiditis can occur after spinal injection of local anesthetic solution, but is also known to occur after intrathecal steroid injection.[214-217] Causes of arachnoiditis include infection, myelograms from oil-based dyes, blood in the intrathecal space, neuroirritant, neurotoxic or neurolytic substances, surgical interventions in the spine, intrathecal corticosteroids, and trauma. In regard to spinal anesthesia, arachnoiditis has resulted from traumatic dural puncture, local anesthetics, detergents, antiseptics and other substances unintentionally injected into the spinal canal.” ~See Complications described by The New York School of Regional Anesthesia
SYMPTOMS INCLUDE (but are not limited to) Intractable pain, muscle weakness, difficulty swallowing, Sleep deprivation, Muscle wasting,Joint stiffness,Reduced activity/immobility, distortions of body size perception (similar to those felt in the lips/face after dental anesthetic), tingling and numbness, loss of sense of limb position, dizziness, loss of balance, Tingling, numbness, or weakness in the legs or arms, sometimes accompanied by restrictive neck pain, Profuse sweating, Bizarre sensations such as insects crawling on the skin or water trickling down the leg, Severe shooting pain (which some liken to an electric shock sensation), Positional, often severe, headaches as a result of obstruction to the flow & rotation of cerebrospinal fluid (CSF), vomiting,Muscle cramps, spasms, and uncontrollable twitching, Loss of coordination (ataxia), Bladder, bowel, and/or sexual dysfunction, Extreme sensitivity to climate and temperature changes, and/or to noise and/or to bright light, blurred vision, buzzing/ringing/whistling/hissing/pulsing in the ears with possible heightened sensitivity to external sounds (hyperacusis) ~ the combination and extent of the symptoms varies related to spinal region involved.
CONSEQUENCES/OUTCOMES CONFRONTED AT THE ART FOR ARACHNOIDITIS PROJECT unemployability, social isolation, financial struggle, Low self-esteem/low mood, clinical depression
“CHEMICALLY-INDUCED ARACHNOIDITIS (CIA) Vs MECHANICALLY INDUCED ARACHNOIDITIS (MIA) Chemically-induced arachnoiditis tends to be more diffuse and cause more florid, systemic problems than mechanically-induced arachnoiditis, which is usually more localised and causes the expected neurological problems associated with pathology at the affected spinal level. However, most patients will have some degree of both subtypes. There are a few who have purely MIA and a somewhat greater number who have arachnoiditis after chemical insult, without a history of trauma or surgery (or indeed a significant mechanical factor). Chemically induced arachnoiditis (CIA) is essentially a toxic condition, which seems to involve a chronically-hypersensitised CNS, with substantial autonomic effects and centrally-originating pain.” ~ The Adhesive Arachnoiditis Syndrome, Sarah Andrea Jones Smith MB, BS October 2003
Suspecting and Diagnosing Arachnoiditis ~A review of the symptoms noted in a group of patients with arachnoiditis presents an analysis of clinical observations of this disease. By J. Antonio Aldrete, MD, MS
Arachnoiditis Part 1: Clinical Description ~ “Arachnoiditis is a rare, but extremely debilitating, chronic pain condition caused by injury to the arachnoid layer of the spinal cord. The goal of treatment is to improve a patient’s function and quality of life by alleviating (but not eliminating) symptoms, especially pain.” By Forest Tennant, MD, DrPH
More at The National Organization for Rare Disorders (NORD) web site
TREATMENT There is no “cure” for arachnoiditis. Survivors and Care Providers focus on coping via Holistic and Pharmaceutical pain management modalities (invasive spinal procedures/injections are contraindicated for patients with arachnoiditis), cognitive behavioral treatment (CBT), Experimental Treatments, Complementary and Alternative Medicine
Patient Self-Help at Veract Intractable Pain Clinic “They are presented here as a public service. I hope you find something to help in these guidelines for Intractable Pain Patients.”~Forest Tennant M.D., Dr. P.H.
More RESOURCES (Please share additional resources and information in the comments. These will be added to the list.)
Delayed occurrence of spinal arachnoiditis following a caudal block J Spinal Cord Med. 2011 Nov; 34(6): 616–619. “Context :Spinal arachnoiditis is a rare disease caused by fibrosis and adhesion of the arachnoid membrane due to chronic inflammation. The causes of arachnoiditis are infection, spinal surgery, intraspinal injection of steroid or myelography dye, and spinal anesthesia.”
Cauda equina syndrome following an uneventful spinal anaesthesia, Indian Journal of Anesthesia. 2010 Jan-Feb; 54(1): 68–69
Cauda equina syndrome after epidural steroid injection: a case report. 2006 Jul-Aug;29(6):492.e1-3. at Pub. Med. Gov
Fibromyalgia and arachnoiditis presented as an acute spinal disorder ~ Surgical Neurology International. 2014; 5: 151.Published online 2014 Oct 21. doi: 10.4103/2152-7806.143364
6 thoughts on “About Spinal Arachnoiditis”
Your literature about about spinal arachnoiditis is helpful, but just touches the tip of the iceburg when you live with someone with it. It is such a debilitating disease. There’s so many Doctors that No Nothing about it and Have No Understanding How to Care for their patients and Become Insensitive. I wish there was More Educational Resources for them. You saw my daughter first hand…and she’s withering …deep into depression, isolation due to lack of Understanding and Poor Pain Management… When or where does One turn when they feel Hopeless ?? Especially for an Incurable Disease… I’d love to hear your input Dr Aldrete, Sincerely, Annemarie Walsh. Kellys Mom
Mrs. Walsh, I am sorry to hear that your daughter has spinal arachnoiditis. I am an arachnoiditis survivor, too. I started this project to share art and the ways that it has helped me learn to live with this terrible medical injury. This informational page is not meant to be a comprehensive description of this complicated spinal cord injury. It is simply meant as a window into our world and a first step into other resources as they become available.
Dr. Aldrete is very knowledgeable about arachnoiditis. However, he is not affiliated with this website for the Art For Arachnoiditis Project. I think you can still reach him through the contact information at the Arachnoiditis Foundation link: http://arachnoiditis.com/ The Art For Arachnoiditis project is a charitable project of SheilaLynnK Art Studio fiscally sponsored by the New York Foundation for the Arts to Empower Spinal Arachnoiditis Survivors via participation in the arts. Many more details about the project are available on this website and the Art For Arachnoiditis tab at http://sheilalynnkart.com/home.html. ~Wishing you and your daughter a low pain day.
Thank you for the Article.
When I saw the painting / art picture – I Started Crying ! I am disabled, with tortures, excruciating Pain for 9 long month .
Doctors could Not diagnose me . And the pain was deadly!!! I started playing and meditating …
To find the answer … I I was finally diagnosed. 9 months later .
Mine was from Borreliosis, Borrelia Burgdorferi Infection And co – infections.That was NOT diagnosed .
Hi. Please contact me urgently I need help so desperately it’s scary. I am a South African citizen I am white male 44 years old with chronic arachnoiditis and fibrosis and fibromyalgia
My court case is in two months and I need to prove quantum but no one in South Africa is really willing to help and they don’t know about this disease
Please please help
Hello Brent, Welcome to the Art For Arachnoiditis Project. I am not qualified to offer medical or legal advice but, I will leave your request here for others who may be qualified to do so. I hope that you find the assistance that you need. As I tell most people who visit the project, I am so sorry that you need us but, glad that you found us. ~Wishing you a low pain day blessed with passion-worthy inspirational moments.
Thank you so much for the information on this site. I am starting a support group and a personal blog focusing on hope for those of us with this disease. Would you please permit me to use a piece of you art on Facebook and on a blog? I think it would be so much more helpful than a medical definition. Thanks for your time and consideration.