Tigerdiosa

I'm so happy to read this post! I am a 30 year old female with hydrocephalus and a VP shunt and have had my 27th revision (brain surgery). I have way too many questions. How do you keep your energy up? What do you do to manage depression (and has that been a problem)? What do you do for pain management?

That is actually the condition I have. Pseudotumor Cerebri and Hydrocephalous are often lumped together. The last time my shunt was malfunctioning, I could barely make it up the stares either. I actually started getting numbness in my face and I would get horrible back and head pain. If your fatigue is so bad, it's not getting old, it means something is not working. I hope you find a doctor who takes the time to listen to you at the Mayo Clinic. PM me if you want to vent about unsympathetic neurosurgeons and horrible fatigue. I promise this will get better!

I like your sense of humor. I'll have to get back to my neurosurgeon about punch cards.
How long have you had your neurosurgeon? It's been hard to find one that can handle complex cases like mine.

Yes. I always have minor headaches. It just becomes a part of daily living and the background noise. Self care and rest is vital, more so than the average person. There was a period of time that I got addicted to opioids because I never realized what life was like without pain. Generally it is something that has to be accepted and managed.

A revision is when they replace the valve in my head but not the entire tubing in my body. It's still a big deal, but not as big a deal. I have had a seizure once when my shunt was completely obstructed so the fluid couldn't drain from my head. It's not good when your brain is drowning. I had to rush to the ER and actually got air-lifed that time. But when the shunt is functioning, things work fine enough.