Hydrocephalus Without a Safety Net

Dan Kricke, living with hydrocephalusBy Dan Kricke
Guest Blogger

I have never known a life without hydrocephalus. For 33 years, that meant I had also never known a life without a shunt. I’ve had around 16 shunt revision surgeries since I was born. I don’t think you can ever call a brain surgery “routine,” but there is a part of me that is almost more comfortable having a shunt revision than a routine visit to the dentist. I mean, I know what I’m getting into with a shunt revision.

Six years ago, I underwent an endoscopic third ventriculostomy, or ETV, where a tiny hole was poked in the membrane near my ventricle to aid in cerebral spinal fluid drainage. This ETV meant that the shunt in my head was no longer medically necessary. At the time of the ETV, we left the shunt in as a sort of fail-safe in case the ETV hole closed up. Six years later, the ETV is still going strong.

A few weeks ago, I came down with a mysterious infection. After a bout of wooziness was followed by a sustained, high fever, I went into the emergency department. The ED staff ran a battery of tests to try and figure out the cause of the issue. My white blood count was high but they couldn’t pinpoint a cause of infection. Finally, they tapped my shunt and I was told my CSF fluid was “florid” with bacteria. Doctors put me on strong antibiotics to fight the infection, but I was told that because the bacteria was in my shunt tubing that it would be necessary to remove the shunt in order to clear the infection completely.

A day later I sat in an ICU bed recovering. I was without a shunt for the first time in my life since just after I was born. 33 years with a shunt. 24 hours without. Then 48 hours without. Everything seemed fine. My intercranial pressure remained steady thanks to the ETV.

Now, I am more than a week removed from having my shunt removed. I didn’t really need the shunt for the past six years, but it’s still such a strange feeling to not have it anymore. Do people feel this way when they get their tonsils removed?

On my neck there’s patch of skin that has an indentation from the tubing that was in my body for 33 years. It looks like the tube is still inside of me, just under the surface of my skin. But I know it is not. It is my phantom shunt tube. I wonder if the marking will go away one day.

Will I wake up one day in the future and not even remember having a shunt? Is this shunt-free life just a blip before my ETV closes and I need another shunt? I can’t possibly know the answer to those questions. Frankly, they don’t really matter now. I’m still recovering from my infection and feeling better every day. That’s what matters. But the feeling of being shunt free is still so strange, so remarkable, after requiring this device to keep me alive for so long.

 

Read more from Dan:

Telling My Story

Realizing I Had Hydrocephalus

Aging Out of Pediatric Care: A Cautionary Tale

The Day-to-Day of Headaches and Hydrocephalus

Navigating Social Interactions Growing Up with Hydrocephalus

Building Our Life Together

3 Comments for : Hydrocephalus Without a Safety Net
  1. Reply

    OMG Dan you are a survivor. Our surgeon told us that the shunt surgery was dangerous but you are here telling your story. I want to know more.

  2. Reply

    Wow, Dan – you’ve run the gamut of shunt experiences, haven’t you? So glad to hear you are recovering but am curious as to why the ED staff took so long to examine your CSF – wouldn’t a possible shunt infection be near the top of their suspected causes list? Should those of us with shunts suggest this possibility if we wind up with similar symptoms? In any case I’m glad you’re doing fine with just the ETV!

    • Kayla Wible
    • September 25, 2018
    Reply

    My 6 year old little boy got a VP shunt placed when he was 3 days old. He has had 2 revisions his whole life. It’s been 3 years since his last one. Do you think my little boy will ever not need it?

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