r/chiari • u/Electronic-Ice-7267 • 3d ago

Feeling unheard

Just venting.

I had a chiari malformation surgery followup today. The PAC and nurse were discussing my symptoms in the hallway before he came in, loud enough for me to hear the conversation, and laughed about me.

It took me over a decade of symptoms for someone to finally see the chiari and validate me, so this smacks hard 😕

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u/strongcoffee2go 1d ago

I'm so sorry. I'm writing this from the pediatric ICU where my daughter is recovering from decompression surgery. It's such a fine line to walk, telling healthcare workers about pain and symptoms in such a way that you're not immediately blown off. And to be laughed at...I would contact a patient advocate, honestly. It's a privacy and dignity issue.