Morgan, 36

In May of 2019, I became extremely ill. For days I had extreme nausea, debilitating headaches, body aches, dizziness, and neck stiffness. My belief was that I had the worst kind of flu, but not being able to turn my head or see clearly gave me the urgency to go to the ER.

My last visit to the ER I was put in the hallway for 4 hours, given a Tylenol, and sent home. So my outlook on this visit wasn’t much different or with any positivity. Thank God I met with a doctor who was genuinely concerned as my symptoms presented as meningitis. After multiple tests and my opening pressure from the spinal tap, he then diagnosed me with pseudotumor cerebri and hydrocephalus.

I broke down and cried. Not from fear or even pain at that point, but to have an answer. The years of migraines were REAL. The ringing in my ears was REAL. The increased depression was REAL. From there I was put on Diamoxx for about a year but with no real relief. After reaching the maximum dosage (2,000mg/day), it was then I saw an Optho-Neurologist and was informed how inflamed my optics nerves were.  I had suffered some vision loss which turned out to be because of my hydrocephalus. That didn’t sit well with me.

My follow up was with my current neurosurgeon who advised me that I have extremely narrow ventricles in my brain and that a VP shunt would be the best solution. Then in October 2020, my shunt was placed. Recovery has been a battle since.

My symptoms of seizures, memory loss and severe residual pain were dismissed or medication was thrown at me to soothe my fears. I have seen just about every scope of doctor under the sun to find answers to my extreme pain, but only my own research and relentless questions were able to give me the answers I need.

I am still battling through this rough recovery every day, and now feel back to where I began. However, I will NOT give up. As a woman of color, our grievances are usually overlooked and we tend to fade into the background suffering in silence. My vow is to not let this illness get the best of me or others. With the help of the Hydrocephalus Association and its community, I will gladly help in being a voice for the class of people that go unheard and need healing.