Tracy, 38

Head Above Water

On February 1, 2018, I reached the monumental milestone of 10 years post-surgery to treat my hydrocephalus (excess fluid on the brain).  I consider myself extremely lucky to have only had to have one surgery, unlike many of my fellow hydro-warriors, who have undergone numerous surgeries and complications.  Surgery should not be the only answer – whether it be one our many – which is why I continue to raise awareness and fight to find cure.

Let me tell you my story. We are not sure if I was born with hydrocephalus or when it actually developed, but my condition didn’t rear it’s ugly head until one morning when I was 23 years old that I woke up and drove to work, but was unable to get out of my car when I arrived. I remember sitting in the parking lot, scared out of my mind, frantically looking from my knees to the steering wheel and back again, thinking that something was obviously wrong and had been for awhile, but I had chosen to ignore it.

After almost 5 years of my parents tirelessly bringing me from doctor to doctor and my health deteriorating severely, on February 1, 2008, I underwent an ETV (endoscopic third ventriculostomy) at Hartford Hospital in Connecticut with Dr. Paul Kanev. I consider myself lucky to have been introduced to Dr. Kanev and also to be a candidate for the ETV procedure. This surgery was riskier than a traditional shunt insertion because my brain was actually pierced to create a new passage for fluid to flow. I had heard the failure rate or chance for complications is significantly lower with ETV than a shunt, so the decision to have the first option was a no brainer for me (no pun intended).

The five years between my diagnosis and surgery were some of the longest, most difficult years for my family, loved ones and me. I really can’t even imagine how difficult it was for my family to have had to see me like I was. Let me paint a picture for you. After the surgery when I asked my mom what I was like while I was sick she cried saying, “my 20-year-old daughter looked like an 80-year-old.” She then corrected herself saying, “an 80-year-old stroke victim” at which point I started crying.

I didn’t really have any idea how bad I was because my problem was in my brain, which distorted my whole perception and outlook. My parents were relentless in trying to find answers. They took me to many doctors, and even though everyone knew I had hydrocephalus, they told us that was not the cause of my problems and there was no need for surgery.

I don’t have a clear memory of the progression of issues I had, but throughout this time I was told I was depressed and highly medicated; I fell down a flight of stairs which left me with a concussion, contusion, hematoma and broken collar bone at which point I was told I was suffering from a traumatic brain injury (TBI); I began to have trouble walking, talking ,remembering things, and holding my bladder, but there always seemed to be another reason we were given for my problems. Apparently, the first multiple symptoms of hydrocephalus, depression and TBI are all the same. It made sense and I am grateful to my doctors for attempting to help me without having to do surgery. Unfortunately, none of those things were going to help my condition.  Surgery was the only option and it shouldn’t be.

My parents were highly annoyed and offended when one of my doctors asked them if I was ever able to hop after he asked me to do so and I stood there dumbfounded, staring at my feet, literally not knowing how to make that happen.

I had multiple MRIs throughout the years and was tracked by a Neurologist and Neurosurgeon the whole time. My parents brought me to a Physiatrist and Neuropsychologist, which are two doctors I feel lucky to have worked with. After grueling multiple hours of cognitive testing, the Neuropsychologist told us the test results suggested I would have had difficulty graduating high school and might not have even attended college. In actuality, I soared through high school and graduated Summa Cum Laude from Bentley.

My ETV took all of 30 minutes and I have an inch long incision and small divot on my head that you can’t even see because I have so much thick, curly hair. My mom stayed with me in the hospital and I remember waking up the morning after surgery and telling her that I felt like I could just think and see more clearly. It was absolutely amazing! Later that day, two nurses got me out of bed to walk down the hall and by the next day I was steadily walking all alone, even at a decent pace when I noticed Dr. Kanev down the hall and wanted to sprint to embrace him in a hug to thank him for making me “me” again!

I will always have a Tectal Glioma brain tumor, but it is benign. There is no reason for concern as the nature of that type of tumor is to not grow or multiply.  In my case, I have learned that hydrocephalus takes (sometimes) daily management.  Some days I feel fine, some days not so much.  Some days over-the-counter pain meds help and some days not so much.  But every day I am grateful for my health, my family and friends, my doctors and the incredible work the Hydrocephalus Association does to make a difference for all of us affected by the condition.

I became involved with this incredible Association at the suggestion of Dr. Kanev.  At one of my post-surgery appointments, he told me the wonderful news that my spinal fluid was flowing beautifully – he and my parents were ecstatic, but I was an absolute mess.  I was having a lot of trouble re-acclimating to the real world after such a long time living in it without really being able to live.  I thought my life was just going to bounce back to normal, which just wasn’t the case.  I had a lot of emotional healing to do.  I hit multiple brick walls, screaming and crying out of frustration that I wasn’t where I thought I should be.

Dr. Kanev suggested that I connect with other people who are living with hydrocephalus thru The Hydrocephalus Association.  I reached out and participated in the Connecticut Walk to End Hydrocephalus.  I went on to start and lead the Connecticut Hydrocephalus Association Community Network and offer Peer Support to people with the condition and their loved ones all around the world.  I have also attended two National Conferences on Hydrocephalus and an Education Day run by the Association.  Let me tell you, it is an amazing experience to be in a room, surrounded by others with the same condition who understand exactly what I feel like when I say I have a pressure headache or feel like my head is going to explode.  The friendships I have made because of The Hydrocephalus Association are ones I will treasure forever.

10 years later, I can tell you that I consider my volunteer work with The Hydrocephalus Association to still be part of my emotional healing.  I’m still working on me (although I’m pretty darn good) and no longer worry about where I should be.  Where I am is exactly where I should be, doing what I should be doing and living my life my way…as a hydrocephalus warrior!

 

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: ines@hydroassoc.org with the subject line “Share Your Story”.

Become a Grassroots Advocate for Hydrocephalus today! Click here to join the Hydrocephalus Action Network.

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