Got Hydrocephalus?

Got Hydrocephalus? Content creator providing information, news and advice to those living with Hydrocephalus like myself.

09/27/2025

Do you remember Matthew? In early August we shared Matthew's story. He'd decided that over the summer holidays he was going to run 2k every day to help raise awareness and funds for Shine, because his auntie has hydrocephalus. Well, he's raised £1,000 total, which is a tremendous amount! Thank you, Matthew!

Do take a look at his TikTok - tiktok.com/.2k.challenge (which also has his JustGiving page)

09/27/2025

22 days until we WALK 👏🏻💙

https://bmcinfectdis.biomedcentral.com/articles/10.1186/s12879-025-11517-x
09/26/2025

https://bmcinfectdis.biomedcentral.com/articles/10.1186/s12879-025-11517-x

Background Hydrocephalus is a severe complication of neonatal bacterial meningitis (NBM), threatening the health and quality of life of neonates, affecting the outcome of nervous system development, and leading to neurological sequelae, such as movement disorders, hearing impairment, mental retardat...

Big shout out to my new rising fans!Paul Lovell
09/26/2025

Big shout out to my new rising fans!

Paul Lovell

09/26/2025
New incision (left)Old incision (right)
09/26/2025

New incision (left)
Old incision (right)

09/26/2025

I took off my bandages last night, and felt lightheaded. I passed out twice- and then threw up. I also had a lot of pressure in my head standing up and needed a fan on me because I was so hot.

I am feeling better now after sleeping it off.

I am watching it but I am doing good now

09/25/2025

I slept a little longer this morning than I ever have after surgery. It felt good. I am resting and watching tv. Doing well.

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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.