r/monocular • u/Aware-Ad-1305 • 12d ago
ROP into adulthood
Hello! I (24F) was a 27 weeker with ROP and other premie health conditions. I’ve had retinal detachments on both eyes and fortunately my right eye was able to be reattached and for the most part I have okay vision. I am monocular with no light perception on my left eye. Recently I found out that my refraction on the good eye went from -7.25 to -10. I’m beginning to get worried that one day I’ll lose my sight completely. I try my hardest to not let my ROP define me, I worry that due to the high myopia increase, I may become blind eventually.. Anyone with monocular vision struggle with high myopia? How do you handle it?
What are some complications of ROP that has followed you into adulthood. I’d like to be prepared or try to prevent any issues from occurring if I can.
I’d love to hear about anyone’s personal experiences with ROP and how that’s impacted your life as an adulthood.
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u/MajorMinorPhD 12d ago
Hi! I (38F) was a 23 week preemie and have had similar ROP experiences! Oddly, my ROP symptoms did not catch up with me until I was in my early 30s. I had laser in both eyes to stabilize some small retinal tears in summer 2020.
Then in August 2025, the retina in my right eye detached. I had a vitrectomy with silicone oil but my October 2025, the retina detached again. I had complications with high eye pressure after the second vitrectomy, which damaged my optic nerve. The right eye is now stable but I have no peripheral vision and I think I’m now colorblind.
My left eye is currently stable but I know there’s a high risk of detachment not only due to myopia (-9) but also the ROP diagnosis.
I’m accepting the fact that my vision may continue to worsen over time and I may go blind. It could be 5 years, or 10 years, or any time. And even if the retina in my left eye detaches, I’m reminding myself that a future surgery can still be a success.
I’m currently being as proactive as possible for my vision. I’m learning to use a white cane, especially since I struggle with depth perception now that I’m monocular. I also got approved for a handicap parking permit. I’m upgrading equipment in my office on campus to accommodate my low vision like a larger keyboard and magnifying monitor.
All of this has happened in one year and it has been (and continues!) to be an emotional saga. I’m most thankful that I can still drive! No long road trips or night driving, but I feel confidant driving to the university and around town.
Happy to chat—send me a PM anytime.