PKD Aneurysms
Curious about PKD-related aneurysms. If you’ve had one, what did it feel like? Could you feel it at all?
I’ve just learned from reading on here that aneurysm screening is relatively common for people with PKD. It’s never been offered to me.
I (33F) was diagnosed with PKD about 10 years ago, but for about as long as I can remember, I’ve often had these “ice pick headaches” where I feel a sudden, sharp and intense pain in a very specific spot in my head. It usually only lasts a few seconds so it’s not debilitating but it’s very intense and I can’t do anything else in those few moments. The last couple years I’ve noticed they’re showing up typically in the same place - just above my ear on my right side.
I’ve mentioned this to my nephrologist and he didn’t seem concerned. He just said if I ever have a really bad headache that won’t go away, I should see a Dr.
I’ve had torso MRI and ultrasounds to monitor the kidneys but he’s never mentioned screening for aneurysm and I didn’t even realize it was possible. Maybe it’s not so common where I live?
Anyway just curious to hear any other experiences and wondering if I should push harder for brain imaging.
Posted Aug 12, 2025, 5:44 PM UTC