u/Working_Syrup3061

Hi r/SpinaBifida — I’ve been spending some time in r/hydrocephalus and realized many people here may be dealing with both conditions, so I wanted to ask here as well.

For those of you (or your children) living with hydrocephalus alongside spina bifida:

1. Do you track shunt-related symptoms at all day to day? If yes, how? Paper notes, phone notes, memory, something else, or not at all?
2. What’s the hardest part about explaining possible shunt-related symptoms to non-specialists (GPs, school nurses, family members, teachers, etc.)?
3. If you’ve had neurosurgery / neuro follow-up appointments recently, did you bring written notes or mostly rely on memory?
4. Are there symptom patterns or day-to-day issues that people without lived experience usually completely overlook?

I’m asking because I’m building a patient support tool focused on symptom organization for hydrocephalus families, and I want to make sure I’m not missing context that matters specifically for people also living with spina bifida.

Completely honest answers are genuinely helpful — including “I don’t track anything and it works fine.”

Disclosure: I’m the developer behind ShuntCare, but this post is for research and feedback, not a sales pitch.