Hollie has been living with spinal adhesive arachnoiditis for about 16 years. Many people have never heard of this disease, including many of Hollie’s doctors. The arachnoid is a membrane that surrounds and protects the nerves in the spinal cord. Arachnoiditis refers to inflammation of this membrane, which can progress to cause bunching of the nerves in the spinal cord (called adhesive arachnoiditis). Arachnoiditis is caused by trauma to the spinal cord, often due to common medical procedures like lumbar punctures, epidurals or spinal surgery.
In this episode of the Major Pain podcast, Hollie shares a first-hand perspective of living with adhesive arachnoiditis while teaching us about her rare disease. Her symptoms include severe neuropathy, burning sensations in her lower legs, tremors in her legs and functional challenges. She cannot walk or stand for long periods of time, often requiring a wheelchair. Even sitting or lying down in one position for too long can trigger a flare.
Hollie shares with us the protocol she uses to manage adhesive arachnoiditis, including medications and physical practices. She also discusses her love for the online arachnoiditis community, a group of people coming together to discuss their shared experiences while living with this painful condition.
The adhesive arachnoiditis resources Hollie shares during this episode include:
Arachnoiditis & Chronic Meningitis Collaborative Research Network: https://www.acmcrn.org/
The Tennant Foundation: https://arachnoiditishope.com/
RESEARCH OPPORTUNITIES: https://rarepatientvoice.com/MajorPainPodcast
This episode of Major Pain is supported by a creator grant from the Stimpunks Foundation. This is a nonprofit organization providing mutual aid and human-centered learning for neurodivergent and disabled people. Check them out online at https://stimpunks.org/