How Gabrielle's Chronic Illness Changed Her Life
Updated: Jun 23, 2018
By Gabrielle | @Ahydroheadache | June 22, 2018
How Gabrielle's Chronic Illness Changer Her Life
If you were to ask me a few years ago, what Hydrocephalus was, I would have to do a quick google search before giving you an answer. Now, after everything I have gone through, health wise, I could probably give you a full medical thesis on everything Hydrocephalus related. I began experiencing constant dull headaches, and pressure behind my eyes beginning the summer of 2013, before my senior year of college. The pain was pretty faint, so I didn’t think too much of it. I thought that glasses might help, but there was no luck there. While I excelled in school, my symptoms worsened with no answer from my doctor. I was told to add more salt to my diet. That didn’t help. I was told maybe it was related to stress and that yoga classes might prove helpful. Still, nothing seemed to be working. My sinuses were another possible cause. I had a CT scan and nothing came of it. I simply went on and pushed through.
When I finally saw a neurologist in October of 2016 hoping to get some answers, you could tell he didn’t want to be there. He simply prescribed medication that “should help” because “These headaches are the most common thing I treat for women of your age.” Well it didn’t help and my symptoms were worsening. They now included intense vertigo and lack of coordination. He tried upping the dosage of my medication by 50 mg a day. I was up to 3 pills a day, with not even a slight improvement in how I felt. I kept pushing back at him. I was advocating for myself, that something was not right here. I searched for a new neurologist and with a lot of prayer, found my “home” at the best hospital for neurosurgery in the country due to someone canceling their appointment for that day. I was finally properly diagnosed with Obstructive Hydrocephalus. Things moved fast from that point on. A few more MRIs were ordered and it was determined surgery was imminent. Upon review of my scans the neurosurgeon’s called us immediately and I was on my way to meet my soon-to-be neurosurgeon. After examination, I was informed surgery was set for just four days later and I was told I only had a few weeks before things would have gone downhill fast.
After my first Endoscopic Third Ventriculostomy (ETV) in April of 2016, I quickly went on with life. My symptoms came creeping back, though, almost a year later. I had to once again convince everyone around me something was not right. I underwent my second ETV in May 2017. Again, I recovered fast. UNTIL my symptoms came roaring right back, this time only six months after surgery. My team and I were in agreement that my body has a tendency to heal very well which is good, but in this case, we did not want it to. The next step which we had tried to avoid, was for a Ventriculoperitoneal Shunt to be placed. This was done in December of 2017. I think deep down I always knew this would be my fate, but definitely not six months after my second brain surgery.
Yet, I feel that I have learned so much more throughout this journey than just all that encompasses my diagnosis and treatment.
I have learned more about myself and what I believe truly matters in this crazy thing called life, in the last two years than in the 23 years I lived prior, combined. Being faced with the reality of a chronic illness with no cure and that’s only treatment is brain surgery, has changed my perspective and outlook on the way I navigate through life. I've learned to let the small things go. I've learned that the phrase, "There's no time like the present" is absolutely true.
If there is something I want to do or somewhere I want to go; I will make it happen, today rather than tomorrow, because with Hydrocephalus you never know when another brain surgery could be lurking around the corner. So, when my health is in a good place I plan to take full advantage of every moment because I know how precious those moments are and just how fast they can be replaced with hospital stays and life-threatening prognosis's.
Additionally, I have truly learned to listen to my body. Back in college, before dealing with any medical issues, I couldn't stand to miss out on events or nights out with friends. Just the thought of it would give me serious “FOMO” (fear of missing out), so much so, that I would always push myself to go out even when I felt under the weather and in the end, I probably always wound up sicker than if I just stayed in and rested in the first place. However, over the past few years, I have had my fair share of missing events and holidays due to my Hydrocephalus getting in the way, ironically. Now, I realize my health always comes first. If my body needs rest, I rest.
Each surgery and recovery shapes me more and more into the person I am destined to become. It shows me just how strong my mind and body can be when pushed beyond its limits. My Hydrocephalus has played a big role in shaping me into the person I am today. I heard someone once say, "always play the best game with the cards you've been handed." I try to do just that each and every day. My VP Shunt gives me a fighting chance every day to have the opportunity for a career and a family of my own one day and for that I'm eternally grateful. With each surgery and possible future surgery down the line, I am being given another chance at life, and what an amazing gift to be given!
Gabrielle was diagnosed at 23 years old with Obstructive Hydrocephalus after a tough two years of misdiagnosis. Luckily, just in time to undergo life-saving brain surgery. Two more brain surgeries followed within a year but she never gives up hope, rather keeping her head held high, thankful for each opportunity for her story to continue.