When I first got diagnosed with hydrocephalus, I wanted to know more. I wanted to research and ask questions so that I could be a good patient advocate and find the answers that I so desperately needed. During this search, I found a Facebook group called State of Texas Hydrocephalus Association Community Network and it has been invaluable to me throughout the process of pursuing a diagnosis, fighting for awareness, and building a support network. Years later, and two brain surgeries down, I have learned a great many lessons about being a shuntee. But the biggest takeaway that I have gathered is that our stories matter!
Sharing our experiences opens us up to support that we might otherwise miss; this wonderful group of #HydroWarriors has reminded me to stay strong and keep fighting just like they do! So whether or not you have a great network of family and friends, there is ample opportunity to read about warriors just like you and make the connections that we all crave. Read some of their stories here on the Hydrocephalus Association's page and reach out. Several of the writers include links to their own blogs so that we can all band together to #ShareOurStories!
... My Story ...
Born premature, I spent the first two months of my life as a #NICUwarrior and, other than coming home attached to a special monitor, there wasn’t much more concern. By all accounts, my first seven years of life were relatively uneventful. But the calm didn’t last. By the third grade, I started exhibiting debilitating migraines and abdominal pain that would follow me into adulthood.
At first, the doctors attributed the frequent headaches to family history and hormonal fluctuations. They diagnosed the abdominal pain as IBS, food intolerances, and Gastroparesis. And when I started having eyesight problems, going legally blind in high school, we all thought it was separate - a bad reaction to medication or a temporary, idiopathic neurological problem.
I struggled to graduate high school after withdrawing completely more than once to address health issues at home. Then, in college, I would go to school for a semester or two and withdraw for surgeries. I was put on total parenteral nutrition (tpn) twice during hospital stays but each time, when symptoms receded, we thought we had found effective treatment for the collection of conditions that had been diagnosed. It was a perpetual cycle of “try, try again”.
But after seven years of desperately trying to earn my degree, I hit a wall. To this day, I don’t know what happened to cause the sudden flare up. My neurologist, at the time, believed that the stress of studies and of life in general were just too much for my body to handle. Because just when I really began to feel like a thriving, normal college student, I had to change course again. I started having weird “episodes” in which my body would completely shutdown. I couldn’t walk, shower or use the restroom alone. I couldn’t talk properly or see clearly. So, I moved back in with my parents to see yet more doctors.
At the age of 23, I had seen multiple doctors in a wide variety of specialties, in different states, and had a medical record over 1,000 pages long. I had a list of diagnoses, but no treatment had yet to be effective. After more tests, my neurologist decided I had Narcolepsy in Status Cataplecticus. It was a working diagnosis good as any, but even with treatment, I struggled to regain normal function. When the pain got worse, doctors re-ran MRIs and Cts to see if there was something else.
Finally, medical professionals agreed that something else had to be done and they presented the idea of an Endoscopic Third Ventriculostomy(ETV). They weren’t sure if I really had hydrocephalus or if I just had large ventricles from premature birth, but the former sounded like it might be responsible for some of my symptoms and we had exhausted our options. So, we gave it a shot! Soon after my first brain surgery, my symptoms got better and we knew we were on the right track! Unfortunately though, my ETV failed two years later and symptoms once again returned.
This time, my surgeon suggested placing a ventriculoperitoneal (VP) shunt so that there was a more permanent solution to draining the excess fluid. My family and I were terrified to make such a big decision but we went forward with the plan. My second brain surgery at the age of 25 sent me into an interesting new life. I was finally symptom free enough to start living again! I never went back to school (excessive hours from dropped classes makes for an expensive education), but I worked part-time for a family-owned company, dated, and went out with friends.
It is now two years after that and I am on top of the world! I fell in love with the most amazing man in the world, moved in with my love, got engaged and then married, started being myself again, and became a mom! These days, I have a new diagnosis of Neurocardiogenic Syncope and I still wonder if we made the right decision to place the shunt. After all, a lot of dysautonomia symptoms mimic hydrocephalus symptoms. However, imaging confirms that the shunt is doing its job and we have faith that if I didn’t need it I would be having even more problems. And though my husband likes to tease me that one day he will just rip it out for me so that I can do all the extreme sports and roller coaster rides I dream of, I feel like I am now living my absolute best life! I wake up everyday knowing that I am loved!
There are times I crash to the floor in pain, there are times I worry about how my conditions will affect our growing family, and there are times I drive my family and friends nuts by talking about how I really feel. But all in all, I have an incredible support system full of patient, kind, and loving people who endlessly care for and encourage me to keep living my best life. And through this experience, I have met an amazing array of spectacularly strong #HydroWarriors who lift me up and remind me to keep fighting like they do. I have learned to be a patient advocate and I have even started a blog to spread awareness of my many chronic conditions. It’s a work in progress just as I am, but I am excited to share my story with others who desperately need to know that there is a light at the end of a very long and bleak tunnel. Life is worth living!
Wishing you all the strength,