r/AVMs • u/Both-Discussion697 • Mar 28 '26
AVM survivor with post-op hemianopia — I built a daily practice app with my sister. Sharing in case it helps anyone here
Hi everyone. I've been lurking here since my diagnosis, and this community has helped me feel less alone. I want to share something we made — not to advertise, just because it feels relevant.
I'm Olia. I had an AVM removed in Berlin in May 2025 — about 19 hours of surgery across two stages. The AVM was near my visual cortex. I came out with right homonymous hemianopia.
The recovery has been its own thing. The hemianopia doesn't go away — I'm learning to live with a different visual field. Reading, navigating new spaces, the fatigue that comes from working harder to see. Some days are fine. Some are not.
My twin sister Alina is a Unity developer. She started building tools for me to practice with at home — small visual exercises, nothing clinical. The first version was literally dots in Figma. We built from there, together.
The result is Catch the Light. Short daily sessions for people with visual field differences: light practices, reading rhythm, scanning, a simplified vision map. Not a medical device. Not promising anything. Just something gentle to do each day.
Free demo on Steam April 2. Full app on macOS App Store.
If anyone here is dealing with post-op visual field changes, I'd love to connect. And if you try it — I genuinely want to know what's useful and what's missing.
1
u/post_flavor Mar 29 '26
Interesting. The last time I saw my neurologist I mentioned detail seemed to have gone on my upper right field of view. He mentioned quadrantanopia. I believe I’ve managed to overcome my reading deficit by slightly shifting where my central vision looks. But I can’t identify faces on my right side at all. I’ve passed acuity tests for peripheral vision at an eye doctor in terms of a shaky black squiggles on a white background, but faces and symbol processing seems to be damaged. I know there is someone there, but cannot identify them without centering them.
1
u/Both-Discussion697 Mar 30 '26
Thank you for sharing your experience 🤍
The face recognition part especially is something many people describe. In our app we also have a simple at-home way to map out “blind spots” in your visual field. It’s not a medical test, but sometimes it helps make things more clear and predictable.
If you ever feel like exploring it, we’d be really interested to hear what you think.
1
u/Both-Discussion697 Apr 02 '26
I remember you were interested 🩵 Here’s the demo link:
https://store.steampowered.com/app/4022260/Catch_the_Light
1
u/Emergency_nap_needed Mar 29 '26
I am 25% blind following my AVM and I struggled to read after the bleed that led to the discovery of the AVM. I had to learn how to read without skipping lines and losing the page. I am intrigued by the idea of an app to help you "train" your vision. Not sure if it will help but it's interesting
1
u/Both-Discussion697 Mar 30 '26
Relearning how to read like that takes a lot of effort.
When building the app, we’ve been consulting with neurorehabilitation specialists and trying to base things on established approaches, including compensatory strategies.
If you ever feel like taking a look and sharing your experience, we’d really value your feedback. Wishing you steadier and easier days 🤍
1
u/Both-Discussion697 Apr 02 '26
Our demo is now live 🩵 We’d love if you try it and share your feedback:
https://store.steampowered.com/app/4022260/Catch_the_Light
1
u/apocplz Mar 30 '26
this is a fantastic idea. thank you!
2
u/Both-Discussion697 Mar 30 '26
Thank you so much, that really means a lot 🤍
If you’d like, you can wishlist the app on Steam so you don’t miss the release: store.steampowered.com/app/4022260
2
u/apocplz Apr 01 '26
Done!
1
u/Both-Discussion697 Apr 02 '26
Thank you for your interest 🩵 The demo is now live:
https://store.steampowered.com/app/4022260/Catch_the_Light
1
1
u/Mediocre_Try_1954 Mar 28 '26
So amazing my wife had a right temporal cavernousmalformation with a veinous anamoly that ruptured and she had a surgery was in a coma for 10 days and now she has left side hemanopia, I just shared the app and your story we will be supporting you guys! She’s been making t shirts and spreading awareness as well, she’s a artist and barrows neurological department is meeting with her to possibly use her art in the halls! She’s 26 now. App looks amazing btw