If you were to ask me 6 ½ years ago what hydrocephalus was, I would have no clue how to even google the word. Even when my doctor called me at 7:45 pm on a Wednesday night to demand that I have someone drive me to the emergency room and ensure that they admit me, I still had no clue what this was, what I was dealing with, what I was in for. But when hit with an unexpected, life threatening condition like this, survival mode was the only option for me. For the sake of my daughter even more than myself, I knew I HAD to survive through this no matter what. And with hydrocephalus….that fight is never over!
Aside from what I went through the month before, prior to May 14th 2014, I do not recall feeling any type of symptoms. I have a high pain tolerance so I likely was experiencing discomfort and was just ignoring it. But from what I remember for about a month prior, I was experiencing what I can best describe as vertigo. My vision was constantly blurred, I couldn’t focus and my brain was foggy. I would randomly get the feeling of when you get up too fast and are lightheaded; however it was different. Something I truly cannot explain. It all started getting worse and worse to the point where the blurred vision lasted hours at a time and even a handful of times where my legs almost buckled from under me. One of those times, I was at the grocery store by myself and was so scared that I just dropped everything, walked out and drove home. There was only one time I can think of where I had a typical hydrocephalus symptom – I had a severe migraine.
I underwent brain surgery two days after being admitted to the hospital. My neurosurgeon also confirmed that he found a cyst in my pineal gland (right dab-nab in the middle of your brain). The bad news is the location is very complicated and dangerous to get to but the good news is that it’s benign so it continues to reside with me. I frequent the MRI chamber (which oddly is soothing to me….yes I’m a little weird) to monitor the cyst. So far it has not grown and actually shrank by about 30 percent within the first year after surgery. I’ll never forget my neurosurgeon telling me that the pressure build-up was so bad that the minute he opened up my head, the cerebrospinal fluid came gushing out all over the surgery room floor. After being wheeled out of surgery the minute my mom saw me she said she could instantly see the difference in my face. We didn’t realize how swollen my face was until I was relieved of it by way of my new drainage system (aka VP shunt). It’s unclear why the cyst formed and how long I had been living with this prior to surgery but I’m forever grateful for my neurosurgeon and all the professionals that have helped me along the way.
I have truly been blessed to say that I have only had one brain surgery to date, but I go on living (and accepting) that the possibility of more brain surgeries is very high.
After getting through the first year, I swore to myself that I would continue to live my life to the fullest! I had a daughter to raise and I couldn’t fathom leaving her at such a young age. I am an athlete and feared I could never play sports or enjoy the outdoor adventures again. However, by year two of my “shunt life,” I built up the courage to join a soccer league, which eventually turned into me playing on two teams. I played soccer for about 20 years of my life at this point and it was my happy place. I refused to let this condition stop my happiness but I am no longer able to head a ball…which was very difficult to resistJ. Since my diagnosis, I have taken up running and joined a coed beach flag football league; which has hands down one of the best decisions of my life. It makes me feel “normal” again. I also participate in the Hydrocephalus Association Walk which has brought so many beautiful hydro warriors into my life. This year, I was honored to join the OC Hydrocephalus Association Walk Committee as a volunteer chair. It’s comforting being a part of, and talking to, people that truly understand what you go through. I say all of this in hopes that any of my fellow hydro warriors that struggle with feeling normal again, doing normal activities, can see that there is hope.
This has been an emotional and physical rollercoaster for me. Sometimes I’m emotionally exhausted and I struggle at times with pain. Is it hard? Yes, it can be. Is it stopping me? Nope, because I won’t allow it to. And I couldn’t do it without all the love and support from my family and friends. I can never put into words how grateful I am for all of them!
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