There are a Million Hydrocephalus Stories; This is the Story of Tracy

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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.

HA note:
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 ctsupport@hydroassoc.biz.

13 Comments for : There are a Million Hydrocephalus Stories; This is the Story of Tracy
    • Alexis Alves
    • June 8, 2018
    Reply

    Wow I live in RI and want to go to Bentley I am graduating next year!!!

    • Mary Ellen Reece
    • September 1, 2017
    Reply

    Thank you for sharing your story, Tracy! My 9 year old daughter also sees Dr Kanev at CCMC. She was born with hydrocephalus and had a VP shunt placed after a failed ETV attempt. She has not needed any revisions. But after her most recent MRI it seems that a brain surgery may be in the near future. Dr Kanev talked to us about possibly trying another ETV. I would love to be a part of the Hartford CT support group that it mentioned above. It is so helpful to hear about other people’s experiences with surgeries and struggles. Please keep me in the loop if there are meetings or events!

    • Jennifer wilson
    • June 11, 2016
    Reply

    I too was born w/ hydrocephalus. (Im 38)Shunted at 6 months. Due to God’s grace I have never had a problem w/ the original shunt, although I did have a tube lengthening as a preteen. I have epilepsy and am on medication for it. But, also by God’s grace, I married and have 5 childen- none have problems although I read somewhere that I would have a 50% chance of them being born w/ my condition!

      • Honorine nyuyki
      • July 1, 2018
      Reply

      I love that story it touches my heart I fell am not alone with my dear son

      • Mayank
      • July 4, 2018
      Reply

      Hi ..pl share your mail if ..My 4 years daughter has same problem

    • Thomas coe
    • March 12, 2012
    Reply

    Wow this is an inspiring story…. and I know times can be tough but believe in yourself and youll
    win the battle 🙂

    • Kelly Lojen
    • September 16, 2011
    Reply

    SO good to hear your story Tracey.
    Im 40 and 6 months ago was diagnosed with Hydrocephalus. Apparently have had it for a long time ( since birth)but wasnt affected. I have always been HIgh funtioning, did well at school, athletic,adventurous so my diagnosis does not make sense to me. As I only noticed the symptoms for the last year or so. When I felt I constantly had a bad bad head cold I couldnt get wrid of. It was when I started to lose my balance a little that I demanded a CT scan.
    I am yet to have an operation as the NS team believe I could be worse if they operate. I have been doing well the last few months by very carefully looking after my health. It helps I almost feel normal again. I notice symptons coming back when Im tired. I would love to hear If anyone who was Diagnosed with Hydro and without an operation it has disappeared. Thats what Im wishing for anyway. Otherwise Im sure I will be in for surgery soon.

    • Anita
    • September 2, 2011
    Reply

    Thank you for sharing your story. I hope to see you at the WALK in middlebury, CT on the 24th of Septmeber.

    • Brenda
    • August 17, 2011
    Reply

    It helps reading stories like these, they help my daughter to know that she i snot alone in the world and there are so many others who can relate to her in a way the rest of our family really can’t. She is a wonderful young lady who was initially shunted at 2-1/2 weeks old. She will be 14 in September and has gone through 32 surgeries for her shunt, one of them the ETV, which was performed before she was 3. Her ETV was unsuccessful, but her shunt(s) have worked for her.

    She always thought she was alone with this problem, that is until she experienced her first Walk. That is when she found out that there are really so many others out there with this condition. It is always nice to know that you are not alone in the world.

    Now that she is getting older, she looks into her condition more to learn more about it.

    Thank you all for sharing.

    • Justine
    • August 15, 2011
    Reply

    It’s interesting to hear others stories and see how they have either come out of it fine or have had problems. I was born with Hydrocephalus but had many a problem but luckily I was diagnosed at an early age and had a VP shunt put in at 12. But mine broke when I was 27. Yes, memory loss is prevalent after having a third nerve bruised. I still have a broken shunt but advil takes the pain away every so often. The two holes in the head to relieve the pain doesn’t always help either. So, to those that have had it easier, you are lucky. To those that have enough problems. I can relate. But it is amusing when doctors freak out when they take xrays and don’t know what the spots are from the broken shunt on an xray.

    • Annie Mason
    • August 14, 2011
    Reply

    Story told from the heart….and with lots of details. The more we share…the more we help each family feel like they are not alone.

    • LoriBeth
    • August 13, 2011
    Reply

    Tracy, I too had an ETV done at Hartford Hospital, however, my neurosurgeon was Dr. Schwartz, who works with Dr. Kanev. I was diagnosed in 2009, at the age of 40. I had been having terrible headaches, dizziness, would fall a lot, and at times couldn’t function at all! I was shocked to find out that I had Hydrocephalus due to a blockage in my ventricle. After talking with Dr. Schwartz, and doing some research on my own, we decided to opt for the ETV rather than the shunt. Have you had any problems since having the surgery? I’ve had some headaches, so will have to be evaluated again. I wish you the best of luck!!

    • Jenifer Jeans
    • August 10, 2011
    Reply

    Tracy I could not be more proud of you and could not be more honored to know you. You are a great lady and an amazing friend! You are an inspiration to other’s.

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