Chiari Decompression Surgery | Hydrocephalus | Complex Chiari 1.5 | My Chiari Story | Brain Surgery

January 24th I came in for a scheduled surgery for a rare condition called Chiari Malformation. I, of course, had to be special and have ‘Complex Chiari 1.5’ (includes more than just brain/spinal cord, but also brain stem and spinal alignment). What they did was remove the back part of my skull, part of my C1 vertebrae, open my dura to release the CSF (fluid) put a graft over it. The surgery went great, completely textbook, no complications. What was supposed to be a quick 4-day hospital stay and a 2-week recovery turned emergent. I was not recovering, nothing was under control, meds weren’t touching a thing. The pain was the worst I’ve ever felt in my life. I was rushed into emergency surgery on Friday (January 28th) after being diagnosed with Hydrocephalus (fluid in the brain ventricles). This happens around 1% of the time in Chiari patients. The plan was to do an ETB endoscopic procedure where they make a small incision to relieve the pressure. Usually one and done, then I’m back on track. Unfortunately, during surgery, my ventricles collapsed and my brain filled with fluid. All visibility was lost, and the safest option was to stop the planned procedure and start damage control. They placed an EVD drain in my brain. This drain would safely drain all the fluid for a few days so they could go back in and place a shunt (permanent internal drain that puts the fluid in my stomach). Quick endoscopic procedure was no longer an option. EVD drain was placed successfully but pain, nausea, and vision were still out of control. Slowly but surely the drain started working. Everything was going great. By day 4(?) with the drain, I had stopped leaking fluid, signaling there’s not much fluid in my brain and the surgeons could now safely go in and place a shunt (the permanent drain). I had MRIs every morning to monitor everything, and things were still unusual..but in a good way. Most, meaning 80% of the time, EVD’s are a temporary solution to prepare surgeons to place a shunt. It’s very uncommon to be weaned off the drain. However, guess I just really like being in that improbable category. I successfully had the drain removed yesterday (Ja- nope. February 3rd) and am now home Chapters: 0:00 Intro 1:23 Diagnosis 6:16 Neurosurgeon Meeting 8:50 Deciding on Surgery 9:14 Surgery Day 15:37 After Surgery 18:26 Hydrocephalus Diagnosis/Treatment (EVD) 25:35 Recovery