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What is Arachnoiditis?
Arachnoiditis is initiated when there's an insult to the Arachnoid mater from either trauma, infection, or chemical irritation. When this happens, the body's normal response is to trigger special glial cells located in the nerves. These then migrate to the injured area and release cytokines as part of normal healing.
However, in those who are predisposed to Arachnoiditis, it also causes neuro-inflammation, that if left untreated, becomes swollen and inflamed, leading to the nerves becoming clumped and tethered together, which can progress to them adhering to the dura layer of the meninges, which is commonly called Adhesive Arachnoiditis (or scarring) and is the most severe form of Arachnoiditis.
For people living with a serious disease that's labeled as rare, this can be a real living nightmare. For the thousands, perhaps millions of people who have Arachnoiditis, we need to educate the public and the medical community on this serious public health threat.
WHO IS ACMCRN?
Arachnoiditis & Chronic Meningitis Collaborative Research Network (ACMCRN) serves patients, physicians, and researchers in the global Arachnoiditis community. By harnessing the power of social media, which allows patients and their families - 'Arachwarriors ' to collaborate across the globe, and employing the latest in rare disease research techniques, we hope to find the answers to this rarely studied condition. Through the power of community, (patients, families, physicians, and researchers), we aim to uncover answers that will lead to prevention, care and clinical treatment of this devastating disease.
If you're new to Arachnoiditis and looking for guidance on where to begin, our Starting Point webpage is a great resource to get you started. We provide a wealth of information on medical treatment options, including both prescription and non-prescription medications, alternative treatments, and medical devices. In addition, we offer peer support meetings and an emergency starting protocol to help you manage the condition. We also feature Dr. Tennant's three-component protocol, a comprehensive treatment approach designed to address the physical, psychological, and emotional aspects of living with Arachnoiditis. Visit our website to access all of these valuable resources and more.
FACES OF ARACHNOIDITIS
Meet our newest Faces of Arachnoiditis Story, Emmalyn Freeze. Emmalyn is a 13 year old young lady who has had 51 brain and spine surgeries in her very short life.
Emmalyn’s story begins with a diagnosis of Chiari Malformation with syringomyelia in 2012 at the age of 3 after a Chiari Decompression surgery to help drain the two syringes, one in her thoracic and a smaller one in her cervical region. Unfortunately, the surgery wasn’t successful, and Emmalyn went onto suffer many surgeries and procedures. It started with chemical meningitis, then being diagnosed with occult tethered cord in 2013, which led to the first of four detethering surgeries.
Emmalyn continued to suffer from headaches and leg pain for the next two years, which brought the third and final decompression surgery. Her thoracic syrinx had grown bigger, and they hoped to reduce its size. Her third decompression surgery happened in Nov of 2015. The decompression surgery seemed to have gone fine until December of 2015 when her grandma discovered a large bump on the back of her head that was squishy. She was diagnosed with a pseudomeningocele and that’s when things really went downhill and the damage to her dura (lining of the spinal cord) was made apparent which unleashed a series of devastating events...