Got Hydrocephalus?

Got Hydrocephalus? I have had Hydrocephalus since birth. 16 surgeries under my belt. I created this page to share my story, my life and my health updates.

Thank you for being here 💙

03/11/2026

Today marks TWO months since I started taking care of myself (aka going to the gym)

Clover is all comfy cozy
03/11/2026

Clover is all comfy cozy

03/10/2026

Another SpaceX launch, Falcon rocket 🚀

03/10/2026

03/10/2026

Last night’s video

03/10/2026

Got that cold that’s been going around 🤧
I can’t stop sneezing 😭

03/09/2026

💙

Big shout out to my new rising fans!Tawn Montes
03/09/2026

Big shout out to my new rising fans!

Tawn Montes

Big thanks toSamantha Nicole Moser, Havyn Lezotte, Ryder Bruen, Manraj Kaur, Wendy Cruz, Ingrid Exnerhc, Dallon K Viklun...
03/09/2026

Big thanks to

Samantha Nicole Moser, Havyn Lezotte, Ryder Bruen, Manraj Kaur, Wendy Cruz, Ingrid Exnerhc, Dallon K Viklund, Ron Patrick Kelleher, Tanya Sorensen, Christopher Sierra, Lydia JamTone Toney, Siphosethu Malinga, Renee M. Mercier, Lovelle Faith, Ana Flores, Jonathan Morrison, Helen Irene Esterly, Cheryl Wheeler, Thomas Gene Parady Jr, Tina Marie, Robert Kerr, Bud Burns, Brian Pike, Rhonda Myers

for all your support! Congrats for being top fans on a streak 🔥!

Big shout out to my newest top fans! 💎Samantha Nicole Moser, Havyn Lezotte, Ryder Bruen, Manraj Kaur, Wendy Cruz, Ingrid...
03/09/2026

Big shout out to my newest top fans! 💎

Samantha Nicole Moser, Havyn Lezotte, Ryder Bruen, Manraj Kaur, Wendy Cruz, Ingrid Exnerhc, Dallon K Viklund, Ron Patrick Kelleher, Tanya Sorensen, Christopher Sierra, Lydia JamTone Toney, Siphosethu Malinga, Renee M. Mercier, Lovelle Faith, Ana Flores, Jonathan Morrison, Helen Irene Esterly, Cheryl Wheeler, Thomas Gene Parady Jr, Tina Marie, Robert Kerr, Bud Burns, Nancy Razorsek, Rudolf Kinder, Brian Pike, Rhonda Myers

Drop a comment to welcome them to our community,

Thanks for being a top engager and making it on to my weekly engagement list! 🎉Joseph T Nauseef, Ryder Bruen, Tanya Sore...
03/09/2026

Thanks for being a top engager and making it on to my weekly engagement list! 🎉

Joseph T Nauseef, Ryder Bruen, Tanya Sorensen

Thanks for being a top engager and making it on to my weekly engagement list! 🎉Joseph T Nauseef, Ryder Bruen, Tanya Sore...
03/09/2026

Thanks for being a top engager and making it on to my weekly engagement list! 🎉

Joseph T Nauseef, Ryder Bruen, Tanya Sorensen, Sandy Lawton, David Bryant Hawks, Adriana Cinapri, Niki Stanley, Sarah Hattie Reese, Trevor Callow, Kitty Arnsman, Jonelise Bosman, Wayne Barton, Sky Wiehl, Alia Smith, Angela Pritchard, Steve Collett, Jaclyn RM Viverito, Chelsea Crochiere, Josette Falzon, Emmanuel Agola, Toni Lz, Jonathan Adam, Brian Pike, Chia Su-Ling, Shannon Claffey, Dequan Foxworth, Betty Crowe Leviner, Frank Cook, Simon Day, Carmen Austin, Hannah Knight, Jake Hankins, Jonathan Morrison, Tambra Croft

Address

Casselberry, FL
32707

Website

https://www.bonfire.com/got-hydrocephalus-merch-2/, https://www.bonfire.com/got-hydrocepha

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My story

I was a premature baby, born at 29 weeks on July 6th, 1996 - my birth date was originally September 17th. My first shunt was put in on August 20th, and I was in the hospital for two months prior. A VP (ventriculoperitoneal) shunt was in place.

There were no problems for sixteen years until October 17th, 2012 during my sophomore year of high school. I started getting bad headaches, neck pain, all along my shunt tract. Pain I had never experienced before in my life. When the pain got so bad, I had had to go to the hospital. Long wait in the ER for scans to be done to determine the other part of my life. I had a full shunt revision.

Shortly after my second surgery, on the day before Thanksgiving 2012, I had my third. On November 21st, CSF (cerebrospinal fluid) was leaking from the incision on my head scar. My fourth revision was on February 3rd, 2013 because of leakage as well.

Again, everything was alright for two years until 2016. My fifth revision was April 19th and sixth was on July 24th.