Carly, 17

Teenager with hydrocephalusI was born at 26 weeks gestation. I acquired hydrocephalus due to a brain bleed. I had my ventriculoperitoneal shunt (VP) shunt placed at 5 months old. Then, when I was 13 months old, I had my first revision because I grew faster than the doctors thought, so they needed to lengthen my tubing. When I was 9 years old and in the 4th grade, I had another revision; I’m not sure which part. I had that shunt until I was 16 years old, in my junior year of high school.

In April of my junior year, I was having what I thought was a “shunt headache,” so my mom took me to the local hospital and then later that day I went to the hospital where my neurosurgeon is. When I arrived, she did a shunt tap and no fluid came out, which meant that I was having intermittent failure. She asked if I wanted to have the shunt revision surgery that night or the next morning. I don’t know why, but I said the next morning. Then she asked if I would like to go home and come back in the morning. I absolutely said NO because I knew I was in a lot of pain. So the next morning I had the surgery to revise my shunt again. I went home on Easter Sunday.

About two months later, in June, I was at my Vocational School for Nursing when I got a headache. I didn’t think anything of it until it got worse and my ears started popping. I have a close relationship with one of my teachers because her son has hydrocephalus, too, and so I told her I had a headache and I didn’t want to go on the bus. She told me to call my mom. I did but I could barely hear her so I gave the phone to the teacher. She then got my other teacher, who also knows about my hydrocephalus, and he looked me in the eye and said, “I’m going to have to call 911 because I don’t know if it’s your shunt.”

I said okay and he called. My teacher that I’m close with wasn’t able to come with me because she had something to do. When the ambulance arrived they took me to the local hospital, which wasn’t a pediatric hospital. When I got there I started to throw up and pass out from the pain I was in. They did a CT scan and an MRI, which was how they discovered that I was having a full blown shunt malfunction. The doctors called my neurosurgeon’s hospital and they sent a transport team to come and get me.

I had my shunt revised the next morning. After the operation they did an MRI just to make sure the catheter was in the right spot. The MRI showed that the catheter wasn’t in the correct place and so, the next morning they had to go in again. I was sent home the next day.

Exactly one week later I had the same symptoms as last time and my mom took me straight to the hospital where my neurosurgeon is. She called them to let them know we were on our way. When we got there, I started to throw up and pass out from the pain like I did last time. They did a CT, MRI and a shunt series while I was in the ER and they discovered that the right side of my brain wasn’t communicating with the left side, which is where my shunt is, and that was why I was having another malfunction. That night they took me straight to the OR for another revision.

While I was in the hospital after the operation my neurosurgeon was worried that my cerebrospinal fluid (CSF) was infected and so she sent it out twice to be tested. It turns out that it wasn’t and that the particles she saw in the fluid were actually brain tissue. Also, because I was in and out of the hospital so much, when I went in again, everyone I had met over the last couple of visits were all stopping by to say hello.

Ever since, I’ve been back to my old self. I hope for no more brain surgeries!! Shunts quit, I don’t!!

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