1st appointment questions : Hi I’m... - PKD Charity for A...

PKD Charity for Autosomal Dominant PKD

1,003 members246 posts

1st appointment questions

Edward12 profile image

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.

5 Replies

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 profile image
Edward12 in reply to

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

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 profile image
Bluemarine in reply to

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 profile image
Susan_101Moderator

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...

You may also like...