Got Hydrocephalus?

Got Hydrocephalus? Got Hydrocephalus? I do, too.

Aren’t they just adorable? 🥰
11/07/2025

Aren’t they just adorable? 🥰

Advocating for Hydrocephalus is my life, my hobby. My . I am here for all of you, as you are here if I need any questio...
11/06/2025

Advocating for Hydrocephalus is my life, my hobby. My . I am here for all of you, as you are here if I need any questions answered about my own Hydrocephalus. This brings my life some joy, I get to meet and know people with the same issue, the same mission as me and it is amazing!!

11/06/2025

I got over 500 reactions on my posts last week! Thanks everyone for your support! 🎉

11/06/2025

I gained 2,934 followers, created 630 posts and received 8,379 reactions in the past 90 days! Thank you all for your continued support. I could not have done it without you. 🙏🤗🎉

My little hair growth
11/06/2025

My little hair growth

😅😂
11/06/2025

😅😂

11/05/2025
11/05/2025

💙 **Hydrocephalus & Spina Bifida Parent Support Group** 💙
**Caregiver Support Night: Sharing Tips & Stories**
🗓️ **Tuesday, November 11**
⏰ **8:00–9:00 PM (EST)**
📍 **Online via Zoom**

Being a parent or caregiver for a child with **spina bifida or hydrocephalus** comes with both challenges and incredible moments of love and learning. Join us for a warm, supportive evening to **share experiences, exchange caregiver tips, and connect with others who understand**. 💬✨

🔗 **Register here:**
[https://us02web.zoom.us/meeting/register/07s96JEmTRK_yXwCWCEwJg](https://us02web.zoom.us/meeting/register/07s96JEmTRK_yXwCWCEwJg)

11/05/2025

Clover is snoring right next to me. Acting like she has a full-time job and whatnot.

11/05/2025

I am so tired but haven’t been able to sleep since I got into bed at 11pm. What a bummer.

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Casselberry, FL
32707

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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.