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Today marks the one year anniversary of my neurosurgery.

Today marks the one year anniversary of my neurosurgery.

chronic illness chronic pain disabled life neurosurgery rare disease Oct 07, 2020

Originally I had planned to publish a compilation of my experiences with tethered cord syndrome, rare disease diagnosis, neurosurgery, and CSF leak, in time for my one year anniversary. My body and mind are currently not up for this seemingly monumental task, so I will be brief.

I have mixed emotions about this anniversary. While the lower half of my body no longer seems to be on the path to paralysis like it was prior to neurosurgery, not much has changed.

After my neurosurgery, many people had the misconception that POOF! I will no longer be disabled, I will have less (or no) pain, everything will be fixed, and I will recover in a few weeks. (HA!)

Photo: So you’re not cured?

My spinal cord was tethered for 35 years. The damage is done! I was disabled before neurosurgery and I am still disabled after neurosurgery, I always will be. The neurosurgery wasn’t supposed to be magic or a cure all. The main goals were to try to prevent further damage, progression of symptoms, and to not become paralyzed. If any of my many symptoms improved that would have been a bonus.

I didn’t have a broken leg. I didn’t have common back surgery. I had *neurosurgery* for a *rare* neural tube defect. I have a complex mix of permanent conditions. One doesn’t just quickly recover from such an extensive neurosurgery!

Photo: Dr. Geraghty after neurosurgery, laying flat in a hospital bed.

So if my response seems terse to the people who ask me for the 10th time in a week how my pain is, it’s because at this point I really don’t know what else to tell you. I live with moderate to severe pain every day, 24/7, it is chronic. I sense your confusion and disappointment that I am “not better.” However, I really am not here to ease your discomfort of my experience.

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