My story began 17 years ago. I was born 3 months early at just 28 weeks. I wasn’t breathing very well and I was in kidney failure so I was on a ventilator for 6 and a half weeks and weighed only two pounds.
Once my kidneys started working I lost weight. My parents were told “I don’t know” to a lot of questions they had. “Will she walk?” “Will she talk?” “We don’t know.” I had my brain bleed on both sides of my brain so when I was delivered I was rushed off to the neonatal intensive care unit to have a surgical device (shunt) placed on my brain. The shunt, unfortunately, can fail at any given time in a person’s life… sometimes without warning!
When the shunt fails, replacing it requires brain surgery and I have had over 30 revisions in the 17 years I have been alive so I have had more brain surgery’s than birthday’s!
In 2011 my shunt failed while I was planning on staying the night at my grandma’s house. I was nauseous and had a bad headache that nothing was helping so my mom had to come back to check on me. Not long after she showed up I went to Children’s to get checked. I don’t remember the car ride there from being so sick and having so much pressure on my brain but, I do remember arriving at the hospital, getting sick in the parking lot and getting x- rays.
I remember being told to sit up if I felt sick to my stomach. After getting that done I had to wait for them to be prepped in the OR and then I found out that my parents couldn’t walk back with me since I was in a emergency situation. I was sad but then later I found out my nurse’s name was the same as my favorite singer which made me happy. There is very little detail I remember from that night due to the pressure on my brain but I do remember going into the operating room and talking to the nurse about swimming, and then being poked for my IV. I do not remember anything after that.
After that happened in 2011 all I knew is that I didn’t want to go in for another surgery, however, I did go in just three years later. In 2014 I was having bad headaches almost everyday and I couldn’t take them anymore so my surgeon at the time told me he would replace the valve for me. The valve that was placed in 2011 was a non programmable valve but we now know that is what was causing my headaches in 2014. When I was told I could have my valve replaced I remember just sitting in the doctor’s office sobbing. On one hand I didn’t want another surgery after the scary 2011 one but, on the other hand I was just tired of the headaches and was told that it was possible the surgery would help me.
So… I opted for it. Needless to say I hardly slept that night and kept second guessing my decision but, once I got through the surgery I knew I had made the right decision! When I came out of surgery my hair was braided which was kinda cool to wake up to. Then began the road to recovery. Having as many brain surgeries as I have comes with it’s own trama… You remember going back into the operating room, having the mask placed on your face that puts you to sleep temporarily, then when you wake up and begin to feel the pain from the operation you just want the pain gone. You dread the surgeon coming in to check your incision because it hurts but then at the same time your happy when they say it looks good. It’s like being told you just won a battle!
It actually didn’t take me to long to be back on my feet walking around in my house either! My surgery was done on a Thursday and I was back up walking around by that Saturday! The scariest part about having a shunt revision besides the operation part is going back to school after you recover. I was still in middle school when I had my last revision so when I returned it was pretty nerve racking! I would go half days for a while until I could tolerate going all day. Having brain surgery wipes you out, so it took me a bit to fully get my energy back. When I got to the point where I was completely recovered… It was like nothing even happened to me!
I now have been surgery free for almost 4 years and couldn’t be happier! Although 2018 began with me going to see my neurosurgeon because I had been having really bad headaches. I was also diagnosed with migraines in 2017 so for a while my headaches weren’t to concerning to me. However, they got to the point where the pain would begin in my shunt and then nothing would help my headache except to lay down and sleep it off. I would take pain medication but not even that was helping me. When the headaches got to that point and kept reoccuring I knew something needed to be done.
I lived in Colorado for 17 years after being born in Iowa and then in June of 2017 I moved back permanently to Iowa with my mom, stepdad and brother so I had to find a new neurosurgeon. He told me the day I met him that “I am a lot simpler in person than I am on paper.” On January 17th of this year I went down to Omaha to have my shunt checked due to the bad headaches I was having and was told it could just be the change in elevation. I then had to go get an image of the setting my shunt was on in order to make sure it would be turned up to the correct setting. When they placed my shunt as a baby they installed it at an angle because of the way my head was, so now when I go for X-rays to view it it usually takes a little bit to get the right picture. Often times when I get my shunt adjusted I can hear the clicking of the magnet in my head being set to the other setting. It’s completely painless… just weird. After I got it reset I was told to give it a few weeks to see how helpful it was. I would like to say it is helping since my headaches have been decreasing now!
The hardest part about having a shunt (besides the fact fixing it involves having brain surgery) is the pain that’s the result of having so many operations. It’s a pain I get in the actual device and at times it turns into a shooting pain that goes down the valve. I have medication from my doctor for it since it has to do with the nerves in my skin that is holding the shunt inside my head but, sometimes the only thing you can do for it is just sleep it off. People often ask me “Does having your shunt hurt?” For the most part no, but every once in a while yes, it does.
I am currently in my junior year of high school and want to be a photographer when I finish high school. The biggest thing I have learned to do at almost 18 years old is how to live with the uncertainty of my shunt. One minute the device is fine but the next someone with this device or myself could be going into surgery to get it fixed! I won’t say it gets easier but it is reassuring when you know the symptoms to watch for.
I am very blessed my shunt has worked this far and I hope it continues! Like one of my favorite quotes goes… “It isn’t what happens that counts, but how we handle it!”
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.
Let’s SHARE. Let’s CONNECT. Let’s raise AWARENESS! Let’s INSPIRE!
If you would like to share your story, please email it to: email@example.com with the subject line “Share Your Story”.
Become a Grassroots Advocate for Hydrocephalus today! Click here to join the Hydrocephalus Action Network.