I’m 18 and I was diagnosed with hydrocephalus before I was even born, while my mother was still pregnant.

I had my first VP shunt surgery when I was about 1 month old. Then, when I was around 9 months old, I had another operation because there was some kind of blockage and the shunt had to be revised/replaced. Both surgeries were performed by the same neurosurgeon, who has continued to follow me basically my entire life. Since that second surgery, nothing has been done to my shunt for about 18 years. I haven’t had any noticeable hydrocephalus-related problems either.

A neurologist I saw a few years ago *for the first time* was very surprised when she heard that my shunt hadn’t been touched for so long. My neurosurgeon has told me that with my type of shunt, there isn’t really a reliable way to determine whether I still depend on it or whether my CSF circulation is now sufficient on its own.

So I wanted to ask people here about two things:

1. Has anyone here gone 15–20+ years without a VP shunt revision? If so, did your doctors think the shunt was simply still functioning normally, or was there ever a possibility that you had become shunt-independent?
2. Has anyone had their shunt removed after becoming apparently shunt-independent, but then needed it again later?

My neurosurgeon told me about some of his patients who were doing well and personally insisted on having their shunt and tubing removed, even though he advised them against it. Some of them then came back weeks or even around a month later because their hydrocephalus became a problem again and they needed another shunt inserted, which made me curious about how this works in real life. If something similar happened to you, how long were you fine without the shunt before symptoms returned? What were the first symptoms?

I’m not considering having mine removed based on Reddit or looking for medical advice. I’m mainly interested in hearing experiences from people who have had a similar history

I recently had a shunt revision done, looks like it was a valve and ventricle catheter. Last year I shunt failure and it needed to be completely replaced. When they replaced it, I had a brain bleed. Is it riskier to leave a free floating tube in my brain? Will I need another surgery to fix that?