Ayana

The first nine years of my life, I was a completely healthy child. Then in the spring of 1997, at the age of ten, I woke up with a continuous ringing in my right ear. Despite two years of normal test results, the ringing mysteriously disappeared for six months, only to return, this time accompanied by pain. By the fall of 1999, I began experiencing severe headaches and continuous vomiting. I remember several emergency room (ER) visits where I was given IV fluids for dehydration and sent home. It wasn’t until I saw a second ENT that a CT scan of my brain was finally ordered. The scan showed enlarged ventricles and I was diagnosed with hydrocephalus.  

Armed with my CT scan results, my next episode of a severe headache and vomiting led to an immediate hospital admission from the ER. The following morning, on November 14, 1999, I underwent my first brain surgery to place a ventriculoperitoneal (VP) shunt.   When I woke up, the ringing in my ear was completely gone! As an outpatient, I had an MRI of my brain to determine what was blocking my cerebral aqueduct and preventing my cerebrospinal fluid (CSF) from draining properly. However, the MRI could not determine the exact cause. The most likely diagnosis is a tectal glioma, a very slow-growing tumor. 

My second brain surgery took place on January 17, 2000, due to subacute bilateral subdural hematomas, bleeding on the brain.  The following year, I underwent five more brain surgeries within just five months, from August to December, for shunt externalization and shunt malfunctions. On December 10, 2001, I was readmitted to the hospital after experiencing episodes of involuntary, alternating mouth contortions. However, all neurological testing came back normal and the cause has remained unknown.  I remember attending high school holding a washcloth to catch saliva that would drool from my mouth. After a month, the episodes stopped on their own, leaving us with more questions than answers. 

In August 2003, I began experiencing progressive abdominal pain.  I went to the ER and was admitted for overnight observation. The next day, an ultrasound and CT scan revealed that I had developed an abdominal pseudocyst. This complication can occur with VP shunts when a thin-walled cystic mass forms around the tip of the shunt catheter, preventing the absorption of CSF. As a result, I underwent two more surgeries; one to externalize the shunt and test for infection, and another four days later to re-insert the shunt on the opposite side of my abdomen. Less than two months later, I was back in the ER for more abdominal pain, and another CT scan confirmed the presence of a second abdominal pseudocyst. The next day, CSF was drained from the pseudocyst to relieve my pain. Due to the recurring psuedocysts,  my doctor decided that the shunt needed to be moved to the right atrium of my heart. On October 5, 2003, I underwent my tenth brain surgery to place a ventriculoatrial (VA) shunt.

After having my VA shunt placed, my health remained stable and I enjoyed a period of great well-being for the next 13.5 years. I graduated in the top 10% of my high school class in 2005 and earned a full academic scholarship to Xavier University of Louisiana (XULA). I graduated from XULA with a bachelor of science degree in chemistry in 2009. Then, I moved back to Atlanta for graduate school, attending Morehouse School of Medicine, and earned my master of public health (MPH) degree in 2011. 

After completing my second year of medical school in 2016, I started experiencing weekly heart arrhythmic episodes. Tests revealed a 5 cm clot in the right atrium of my heart, attached to my VA shunt. The clot was treated with warfarin, a blood thinner, for nine months while I continued my third year of medical school. Unfortunately, the warfarin failed to dissolve the clot. Due to this, in May 2018, at the age of 31, I underwent open-heart surgery to remove the clot. During this surgery, my neurosurgeon also revised my shunt, replacing it with a VP shunt.  

In July of that same year, I was hospitalized for the entire month due to developing acute peritonitis, a life-threatening infection. During this hospitalization, I also underwent my 12th brain surgery to revise my VP shunt. Then, the week before Thanksgiving, I was hospitalized again for a third abdominal pseudocyst. This led to my 13th, 14th, and 15th brain surgeries, which included removing my VP shunt and performing an endoscopic third ventriculostomy (ETV). This marked the first time in 19 years that I was without a shunt. If an ETV had been performed during my childhood, it could have significantly altered the course of my life, potentially eliminating  the need for a VA shunt altogether. 

After hearing my story, many people often refer to me as a walking miracle, and for that, I am truly thankful. However, I also struggle daily in balancing the grief and gratitude that come with enduring numerous brain surgeries and the complications that followed. I share my story to give hope and strength to other hydrocephalus warriors near and afar. 

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