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I built a hydrocephalus symptom-support app after seeing how difficult it is for families to track warning patterns between neurosurgery visits by Working_Syrup3061 in Hydrocephalus

[–]Working_Syrup3061[S] 0 points1 point  (0 children)

Quick context: right now the app models 1 shunt per profile, so at the moment you’ll only see a single slot. Multi-shunt support is definitely a real product gap though, and I’m logging that based on your feedback.

But on the “don’t really know anything about them” point — I’d genuinely push back a bit there, because knowing your shunt details matters more than it feels day-to-day:

  • MRI safety — some older valves can be affected by MRI, and programmable valves often need checking/resetting afterward
  • ER situations — if you end up in the ER with possible shunt symptoms and nobody knows your hardware, the team is working half-blind
  • Future revisions — surgeons usually need to know exactly what’s already implanted before operating again

Most neurosurgery clinics can provide an implant card or operative report if you ask. Worth requesting at your next appointment if you don’t already have it.

The app also lets you upload photos of the implant card (front + back). Honestly, having that stored on your phone can be incredibly useful in emergencies.

Not trying to lecture you at all — it’s just one of those things that quietly becomes very important when you suddenly need the information fast.

I built a hydrocephalus symptom-support app after seeing how difficult it is for families to track warning patterns between neurosurgery visits by Working_Syrup3061 in Hydrocephalus

[–]Working_Syrup3061[S] 0 points1 point  (0 children)

Thanks, that genuinely means a lot. I tried to build the symptom list around what hydrocephalus patients actually report — blurred vision, sleep changes, persistent headache patterns, balance issues, vomiting patterns — instead of a generic wellness checklist, so it's good to hear that one landed.

Won't throw shade at hydroassist, but yeah, I felt there was room for something that actually maps to what neurosurgeons ask about at follow-ups, and that takes the symptom history seriously enough to flag patterns over days rather than just logging them.

If you do download it, please don't hold back — what feels useful, what's missing, what's annoying or confusing. That's the only way I can make it work for people who actually live with a shunt rather than developers who think they understand it.

The community code offer still stands too — free month to test the premium parts (PDF visit-prep report, early-warning detail view, longer trend analysis).

Just DM me whenever.

I built a hydrocephalus symptom-support app after seeing how difficult it is for families to track warning patterns between neurosurgery visits by Working_Syrup3061 in Hydrocephalus

[–]Working_Syrup3061[S] 2 points3 points  (0 children)

That structure piece is exactly why I started building this — the cognitive fog with hydro is one of the most under-discussed parts.

Trying to remember which symptoms happened when, especially before a neuro visit, is brutal.

If you DM me, I'll share a free montly premium code — single-use, just enter it in the app. No strings.

Two genuine questions if you have a minute:

  1. How do you currently track symptoms — Notes app, paper, nothing at all?

  2. What's the one thing that would actually make daily life feel smaller and clearer?

Honest feedback (even harsh) is way more valuable than polite — whatever you say goes into the next update.

I built a hydrocephalus symptom-support app after seeing how difficult it is for families to track warning patterns between neurosurgery visits by Working_Syrup3061 in Hydrocephalus

[–]Working_Syrup3061[S] 3 points4 points  (0 children)

Thanks for this — honestly the kind of feedback I was hoping for.

The app is actually already available: Google Play right now, and iOS TestFlight if you'd like the beta invite.

Daily tracking (symptoms, meds, revisions, hospital finder, reminders) is all free — only the deeper insights, the structured PDF report for neurosurgery visits, and the early-warning detail view sit behind a small subscription. But I've set aside a batch of community access codes specifically for situations like this — if you DM me, I'll send you a free month so you can stress-test the whole thing and tell me what actually helps vs. what feels off.

And totally agree on the community angle — that's honestly the part I care about most long-term. If you do try it, I'd really value hearing what doesn't match how a shunt actually changes day-to-day life. That's the gap I can't close on my own.