1st appointment questions

[Edward12]

Hi I’m about to go for my first appointment with the nephrologist (UK on NHS) I think I’m quite early on- 2-3cm in size (I’m 30 years old). Is there any particular questions I should ask and any particular tests I should request? Has anybody looked into having PGD? I’m great full for any advice I’ve read quite a lot but the advice varies.

[Hidden]

Everybody seems to be over obsessed with the aneurysm size the fact is the problems begin when they burst big or small matters not.

[Edward12 in reply to Hidden]

Thanks for that information I wasn’t sure whether it made a difference !

[Hidden in reply to Edward12]

I know people happily walking about not a care in the world with aneurysms untreated ( just being monitored) yet even a small aneurysm bursting can be debilitating and life threatening, it's the rupture that causes the life changing issues. I thought I had a brain tumour which turned out to be an aneurysm which ruptured. I had a lumber punch years ago which causes a pressure change in the spinal fluid anything growing ie an aneurysm or tumour will cause a change in pressure within the skull which in turn may cause headaches which are off the scale ( hence I thought I had a tumor).

[Bluemarine in reply to Hidden]

Hi, thank you for sharing your experience. I'm just wondering, those who are living with their aneurysms - how does one prevent them from rupturing? We just found out my husband has one on the main vein in the brain. Going for an angiogram tomorrow. Thank you!

[Susan_101 Moderator PKD Charity for Autosomal]

Hello Edward

The UK based PKD Charity has a fantastic website which offers appointment tips pkdcharity.org.uk/about-adp... PGD is also discussed in a section on Pregnancy.

The Charity offers support in many ways including a closed Facebook group which you may wish to join. facebook.com/groups/pkdchar...