Telling My Story

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Meet Dan Kricke, a new guest adult blogger to our website! We are excited for Dan to share his voice to our adult blog series. Look for Dan’s blog every month. 

Dan Kricke, living with hydrocephalusBy Dan Kricke
Guest Blogger

It’s important to me to note to anyone reading this that I don’t intend to speak for everyone with hydrocephalus. I don’t think I’m any more special or worthy of being some sort of spokesman for hydrocephalus than anyone else. Just getting to start writing anything about living with hydrocephalus was a huge struggle for me because I didn’t feel like I deserved to be an advocate for something that, statistically and medically speaking, has treated me incredibly well.

As a kid, I was never heavily invested in the statistics of hydrocephalus, but I didn’t need to crunch the numbers then or read a Wikipedia page now to understand just how fortunate I was in the scope of this condition. My visits to the hospital made that abundantly clear. When I was in the hospital I remember getting wheeled around, sometimes to go get some imaging done and other times just to get out of my hospital room or have some lunch at the cafeteria in the hospital, and I’d pass by the other kids in the neurosurgery ward that were parked outside of their rooms – a row of children with head bandages, some of whom I would learn would return to the hospital every month or two for a shunt revision. Their lives were in the hospital. For me, the four or five days I’d spend before I was sent home to rest felt like an eternity. It feels so selfish to even type that because for some of those other kids with hydrocephalus, that would’ve been the happiest, shortest stays of their lives.

I’m completely aware that I’m a real hydrocephalus success story and that many others are not so lucky. Ultimately I started writing because when the University of Chicago published the story of my ETV surgery and I found out how many people found inspiration in it, it hit me in a way I hadn’t previously considered. While I worried that it seemed arrogant to flaunt my relative health living with hydrocephalus, some people found it an inspiration. So  I hope there’s comfort in knowing there are success stories out there, and as someone who had five shunt surgeries in my first few years of living, and another five through the rest of my life, there’s hope to live a more normal and uneventful life even if getting through each day may be a struggle at the moment.

Click here to read other blogs written by Dan. READ MORE


1 Comments for : Telling My Story
    • Susan Millar-Pritchard
    • August 8, 2019

    Hi Dan

    I too live with the daily headaches of hydrocephalus, unfortunately not diagnosed until I was 29 and had gone through years of being told I was a hypochondriach. I eventually collapsed in the shower one day and I was given a scan where they carried out a CT where they found a tumour and the cause of the headaches – hydrocephalus as the tumour was preventing the fluid from getting out of the head.
    I had a shunt fitted and a procedure called a 3rd ventriculostomy. I thought my pain would be gone for ever! It is worse now than ever before. I have the most horrendous headaches, migraines, neuralgia and this weather changing head you describe which floors me as I don’t know whether I want to pass out or be sick. Life is not good. They damaged my trigeminal nerve when I was having my procedure so I have to take nerve pain drugs and sometimes I wish I was dead as I do not know how much longer I can put up with the pain.

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