PKD and brain aneurysms

[tillymint16]

Hi I'm looking for anyone with this kidney disease and also brain aneurysms connected with this condition. I have both these conditions and would like to share thoughts with others. Has anyone had treatment for brain aneurysms i.e. Coiling mailing or clipping. Thanks. Andrea

[atropa]

Hello Andrea,

so sorry to hear you have this. I don't have any personal experience I can share with you, but did look into the research on screening and this article briefly talks about the treatment options (go to the heading 'Therapy'): ajnr.org/content/early/2013.... For hearing about other people's personal experiences, I recommend this yahoo group: uk.groups.yahoo.com/neo/gro...

Best wishes,

Anke

[PKDC-Admin Partner]

Hello Andrea

Are you in the UK? There are a number of people on our Facebook UK group who have had treatments for aneurysms.

[tillymint16 in reply to PKDC-Admin]

Sorry yes I'm in the UK😌

Andrea

[tillymint16 in reply to tillymint16]

I'm not on Facebook but keen to chat to others with this brain condition

Is there any other was if contact?

Regards Andrea

[arap88]

Hi Andrea , my dad had found 2 aneurysms during his preparation for kidney transplant when he was 43 years old ! He did a procedure called embolism ( when the pass a needle from your pelvis to your brain and it fill the anurisms with a fluid) . It was painless as I can remember so it prevented them to break. Until he passed away from a cardiac arrest , no more aneurysms were created.

[tillymint16 in reply to arap88]

Hiya

I'm sorry about your Dads situation its heartbreaking.

Yes I too have looked into this and other more severe procedures but it carries a risk of rupture but they can also break the carotid artery in the neck going up to reach the aneurysm which can cause a stroke.

It's a dilemma but I'm lucky to have great health. Just changed my neuro surgeon as relocated so see what he suggests. The hard decision is always mine to make though unless MRI scans show any change.

They do a risk ratio of age, size of aneurysm whether to operate or not but again monitoring is important... living with it does not get any easier...

Andrea