Head Above Water
By Tracy Taback
Today, I am a healthy 31-year-old woman who just happened to be born with hydrocephalus (water on the brain). My condition lay dormant and went undetected for 23 years until one morning 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, thinking that something was obviously wrong and had been for awhile, but I had chosen to ignore it.
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. 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 four and a half 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 to do 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 and remembering things, 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 obviously made sense for my doctors to attempt to help me without having to do surgery. Unfortunately, none of those things were going to treat my condition.
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 during the four and a half 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 University.
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.
I will always have a Tectal Glioma brain tumor, but it is benign. There is no reason for concern as the tumor has virtually no impact on my life anymore. I will continue to see my neurosurgeon annually, but he’s my favorite doctor to see because he’s the one who fixed me.
Tracy recently signed up as an HA Partner! She will be leading a hydrocephalus support group in Hartford, CT. This group is open to all ages. Tracy can be reached at firstname.lastname@example.org.