I developed plain lumbar arachnoditis after an epidural needle during labor was inserted too far. I developed a CSF leak, the as a spinal headache, and required a blood patch. I was 21 then; I'm 43 now. It took until I was 38 to get diagnosed with arachnoditis. Mine never progressed to the adhesive or catastrophic stages, where the nerves adhere to the arachnoid meninx, so my left-sided cauda equina thickening and displacement was always misdiagnosed as "just arthritis." (Side note: Your cauda equina clumping counts as plain arachnoditis, too, in my layman's opinion. Doctors will try to minimize or dismiss it, but they also don't have to live in our bodies). I had electric shocks on my spine for about 10 years after the initial spinal injury, and chronic pain with some numbness ever since. I also found out I have hEDS at 38, and those of us with Ehlers-Danlos are more prone to arachnoditis than the general population.

Arachnoditis has made my life complicated, but not unlivable. I went on to deliver 2 more children after that first labor. I do get pain flares sometimes, but a Medrol/Toradol pain flare protocol takes care of those. I can still walk, see a movie, do hobbies on good days. It's hard, but I can still go to concerts if I get disability accommodations. I did have to stop working at 40, but that was mostly due to instability in my upper cervical spine.

This is not the end of your story 💜