Looking for positive stories: ADPKD + untreated/monitored brain aneurysm
Hi everyone,
I have ADPKD and a diagnosed intracranial aneurysm. The aneurysm is being monitored, but because of its location and shape, treatment is currently not considered a good option, so the plan is observation rather than repair.
Lately I’ve been reading a lot about the connection between ADPKD and aneurysms, and unfortunately many of the stories I’ve come across involve ruptures and people passing away very young—in their 20s, 30s, or 40s.
I fully understand that aneurysms are serious and that no one can predict the future, but reading only the worst-case scenarios has been difficult.
I’m hoping to hear from people who have lived a long time with both ADPKD and a known aneurysm, especially if the aneurysm was simply monitored rather than treated.
- How old are you (or your family member)?
- How long has the aneurysm been known?
- Has it remained stable?
- Did you ever need treatment, or has monitoring been enough?
I’m not looking for medical advice—just hoping to hear some real-life experiences that show a positive outcome is possible too.
Thank you.