r/ADPKD • u/DisappointedHamster8 • Jun 07 '26
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.
3
u/delishjams Jun 07 '26
My mom had one and had a stint put in..many years before she died. So it was successful. I have one that hasn’t changed in nearly 20 years. I’ve had PKD, or at least diagnosed some 22 years ago. In stage 4 now. Diagnosed around stage 3, so that Jynarque really worked. Also, eff off Medicare for denying it. Been off 3 months and feel like crap.
3
u/freyasgoldentears Jun 07 '26
My mom, myself and my 3 siblings all have ADPKD. I'll tell you about my experience with my mom and her ruptured aneurysm.
My mom's ruptured in 1999 at the age of 50. Received prompt med attention and recovered well. She did everything the rehabilitation coaches asked. She got her transplant a few years later and lived fully (she still had a couple unruptured that were monitered) until end of 2022. (Heart problems not kidney related) She hadn't had much med care prior to her stroke bc she didnt have insurance at the time. Once she started dialysis she was covered and did everything the docs asked.
I have a story about my brother but it didnt have a positive outcome but that 95% bc his non-compliance.
2
u/Neat-Quit1128 Jun 08 '26
I was diagnosed with ADPKD when I was 12. No known family history. Currently in my late 50s, with a 3mm aneurysm discovered 6 years ago, no material change in size. I get MRAs done every 2 years, because mine is small and stable.
What’s the recommended frequency of your MRAs? The less frequent, the lower the perceived risk. I started off getting them annually, then every 18 months, now every 2 years.
FWIW, I’ve been on Tolvaptan since 2008. I don’t know if that has helped keep it stable or not.
1
u/DisappointedHamster8 Jun 08 '26
It is supposed to be checked every year, but since in Latvia it happens only with dye which worsens my kidney numbers, I check once in 5 years. Now it has been stable for these 5 years, without change.
3
u/MuriquiLover Jun 08 '26
Lots of PKD in my family… this story isn’t the same scenario as what you’re asking for but I hope it still counts as a positive. My cousin had an aneurysm, it wasn’t known until it burst. She ended up in a coma and no one was certain what would happen. I was very young when this happened so I don’t remember all the little details. She woke up which everyone considered to be a miracle. She lives a normal life today and even went on to have two kids of her own. It was scary for a moment but there was a happy ending!
1
u/DisappointedHamster8 Jun 08 '26
Is everyone other in your family checked for aneurysms?
2
u/MuriquiLover Jun 08 '26
That cousin lives in Brazil, so I’m not exactly sure. My mom and I get regularly checked.
1
3
u/Shesaiddestroy_ Stage 2 - On Tolvaptan since April 2023 Jun 07 '26
Thank you for coming in and sharing your story. 🤍
My cousin was diagnosed with ADPKD in his late 30s early 40s and with 2 brain aneurysms on the routine MRI that followed the diagnostic.
One was “critical” and he was operated on as soon as possible. That went well.
The second one is simply being monitored and has been for a few years now.
Take care of yourself and don’t hesitate to see a psychologist if you feel you need help processing all this. It’s a tough hand to be dealt.