Melinda, 30

Young adult living with hydrocephalusIt took me a few days to decide whether to share my story, and I decided it is worth sharing. Everyone’s story is unique and different but I often wonder how I am still alive after everything.

I was diagnosed at 18 years old with congenital hydrocephalus without aqueductal stenosis. This diagnosis did not come easy because it took almost 5 years. I felt as though something was wrong with my brain/head but doctors insisted that nothing was wrong. I finally received my diagnosis on December 23, 2003, from a MRI. It was deemed an “incidental finding” since they were not looking for hydrocephalus. I saw 3 neurosurgeons and the last one told me that since I was stable at the time, I did not require a shunt. Ten years passed before I needed a shunt placement.

I was earning my Masters in Occupational Therapy at the time and was in my second year when I started having absence seizures, fevers of unknown causes, and other classic malfunction like symptoms. In the summer of 2013, my symptoms escalated to having migraines every day, urinary incontinence, vomiting, and severe neck pain. I went to my primary doctor’s office to have my symptoms checked and I ended up fainting in the office. I was taken by ambulance to the emergency department where I had a CT scan. They discovered that I had cerebral edema, chiari malformation, and severe obstructive hydrocephalus. I had several smaller seizures while in the emergency department and, with the help of my primary doctor, I was transferred to a specialty hospital.

I do not remember much after the transfer, and most of what I am about to write has been told to me by family members who witnessed it. I was in the emergency department for 32 hours before being transferred to the neuro ICU. I was in and out of sleep for most of it while having small seizures. I was not allowed any pain medications, food, or water as a precaution. I told my family to go home and get sleep. They said that I told them “I am fine, go home.”

While I was in the neuro ICU, I had a generalized seizure in the middle of the night. They told me that I might not come out of the next seizure. When they got me out of it, they told me that if I did not have surgery right then, I would have more and bigger seizures. I was rushed into emergency surgery for a VP shunt placement.

I did not know the neurosurgeon, residents, or nurses. I was alone in the hospital and going into surgery. Needless to say, I had a successful surgery and I had one week to recover before returning to graduate school. Yes, I could have taken 1 semester off, but that would put my whole education behind one year.

In my last semester of graduate school, I ended up back in the hospital because my brain started swelling again. Turned out that I was not having a shunt malfunction but that my shunt settings were too low which caused CSF to build back up. I did graduate on time with a Masters in Occupational Therapy and I recently passed my board examination. I am awaiting licensing from the state so I can start practicing. Currently, I am applying for jobs and hoping for an interview.

I hope in the future to spread awareness about hydrocephalus. Also, I hope to advocate for my patients in my future job.

That is my story. My mom tells me that I have a lot of determination to get through all of it. It took me some time to share this but I am happy I did.

Tell us about your journey with hydrocephalus!

Hydrocephalus affects each of us differently. Share your story with us! We will feature the amazing individuals in our community on our website and through social media.

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If you would like to share your story, please email it to: ines@hydroassoc.org with the subject line “Share Your Story”.

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