Weathering Chiari

I just got home after spending the last three days in the hospital. 💜

On Friday my vision had gotten so blurry with double vision that I went to the eye doctor. It had been blurry since surgery, but it was definitely getting worse. When they dilated my eyes, the ophthalmologist saw that my optic nerve was compressed with blurred edges and told me I needed to contact my neurosurgeon right away.

By the time I got to the parking lot it was almost 5pm, so I left messages. One of my doctors replied and suggested the ER. After some convincing, my mom took me in. The on-call neurosurgeon immediately ordered brain MRIs and an MRI flow study to check for blockage, leak, or any undetected damage from surgery. The MRIs were clear, but I was admitted for further testing and observation because I was showing signs of brain swelling.

Yesterday a specialist came in on his day off. He spent the whole morning studying my case and my Chiari Malformation before doing a careful spinal tap. Because of my higher risk (the procedure can create a vacuum effect that could cause my brain to herniate again), he only took 3 ml of spinal fluid instead of the usual 10 ml. He left the needle in for several minutes to measure my CSF pressure—which came back normal. All the scans looked normal too, but the team still believes something is going on (the optic nerve can show swelling before the brain does on imaging).

They did another MRI today (MRV) to check my veins. It was clear, so they decided I was stable enough to go home. I was discharged today and will follow up with the ophthalmology team at Emanuel tomorrow.

I’m trying not to panic and just focus on the next step. God’s hand was truly over this whole weekend—from the ER doctors to the consulting neurosurgeon to the specialist who came in on his day off. I’m so grateful.

For now I’m home and resting. Thank you for the prayers. 💜