The story of Breanna
When I was around 12 I started having insanely bad headaches. My mom thought I needed glasses so I went to the eye doctor and he said I need to get to a neuro ophthalmologist NOW because I have pressure on my optic nerve, which means that I most likely have pressure in my head. (I think I ended up in the er that night. I know that I was diagnosed with Chiari malformation in the er. Then my current neurosurgeon confirmed it.) I then went to the doctor I was sent to, and he then sent me to another doctor more urgently. This was all getting really scary for me and my family. I was going blind at this point, vomiting everything that I ate, I couldn’t really walk and I was in bed basically all the time. My neurosurgeon said we need to do surgery a week ago, and got me in within a matter of days. When I woke up, hours later I could see fully, I stopped vomiting, I could walk and I was just a different Kid because I felt better. But I formed a pocket (called a pseudomeningocele) at the bottom of my incision the burst, leading to my IIH diagnosis and shunt. 6 years and 8-10 brain surgeries later I’m now diagnosed with EDS, slow gastric emptying, orthostatic dizziness, trigeminal and occipital neuralgia and chronic migraine.