Perspectives

Walking on Water: Living with Hydrocephalus

 

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  Hello friends.  Today we introduce you to our newest contributor (and youngest!), Emily.  She is bravely sharing a lifelong struggle with all of you in the hopes of creating awareness and understanding of this serious issue. Let’s all be supportive of this amazing young woman.

 

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My name is Emily Lucht. This is the first post in a series talking about myself and living with hydrocephalus.  I decided to become part of this blog to promote awareness for my condition. When I was born, it was fairly new medical science. These days, you hear about it on shows like “Grey’s Anatomy” and “ER” like it is every day medicine. I want people to know that even though it is a tough condition to live with, it is very doable and everyone who lives with it experiences it differently.

My “Little Friend,” the headache

When I was a kid, all I can really remember is the nurse’s office. I spent every single day of elementary school for as long as I can remember eating my lunch in there. I don’t want to give away her name, so let’s just call her “Nurse Sally.” Nurse Sally and I had a great relationship. I didn’t even need to give her one of the little hall passes from my teacher once I got to second and third grade. I was able to just walk into her office and she knew exactly why I was there. I’ve always admired school nurses and I’ve always had a wonderful relationship with mine, even into high school. As a kid, my complaint was always the same. I liked to call it my “Little Friend.” This friend of mine was a headache that I got every single day if I didn’t eat by a certain time or skipped a meal. It was caused by my blood sugar dropping too low. If I didn’t eat once the headache set in, I would often feel faint and sometimes even get sick. This didn’t happen often, but when it did, I was well prepared. The nurse always had a pack of the square Saltines that I loved and some Tylenol for the pain. I would usually take a nap in her office after eating my lunch and then go back to class, no problem. I’m not a chronic migraine case. My headaches are caused by something else entirely. 

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I was born at 27 weeks, which is approximately 13 weeks premature. My premature delivery caused my brain to swell, a condition known as hydrocephalus. This is basically just a big fancy word for “water on the brain.” This “water,” also known as cerebral spinal fluid (CSF) puts pressure on my brain, causing it to swell and become damaged. After I was born, a neurosurgeon installed a shunt, which drains the fluid into my stomach and lets it pass just like I drank a glass of water.

When my parents shared all of this with me, believe me, it was a lot to process for a seven-year- old. I knew I was different, but I just figured I got a lot of headaches. I didn’t realize that was why. I knew I went to a lot of doctors as a kid but I never put two and two together. My “little friend” caused a lot of other problems for me, too. I had strabismus, which basically meant I had lazy eyes. I had surgery three times from the time I was around five until I was 12 to correct the weakened muscles. I also did this thing as a kid where I would flap my arms and jump up and down every time I got excited about something. Kids and adults used to call me the “Bird Girl.” Little did I know this was all from my condition. When my brain swelled, it caused some damage which resulted in the symptoms related to mental retardation. They were very minor, but they were also very hard to control. Every time I would get excited about something and I would start flapping my arms, people didn’t know how to respond. They thought I was just weird. I understood, though. Once I figured out why all of these things were happening to me, I began to get a better understanding. I began to realize that what I had was a pretty common thing, at least, it became so as time progressed. At the time of my birth, it wasn’t a very common condition. It was diagnosed, but putting shunts in was a fairly new approach to treatment. My doctor was able to do it, however. Learning about my “little friend” opened many doors for me, doors that would not have opened for me otherwise.

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In the coming weeks, I will be taking you through my life journey with hydrocephalus, from my difficult middle school years, to my life in high school, and finally what I expect as I move on to college and how this will affect me as an adult. My story is just getting started. Stay tuned and you’ll be surprised what you’ll find!

 

Stay tuned for more from Emily in the coming weeks. Please leave your comments and encouragement below!