Have I made the right decision?

[GrannyTWest]

After a subarachnoid haemorrhage I had emergency coiling, all is well with this after my 6 mth MRI. During the emergency treatment a further, smaller, unruptured aneurysm was found. I have agreed to leave this one and review again after 2 years, that's 18 mths away. I have found it difficult to get a recommendation from the neuro surgeon, he wanted only to discuss my risk, he expected me to make the decision. My question is - is this usual? What have others decided? Does anyone have any advice?

[Saffynix]

Hi I have two Annie’s one coiled the other on waiting list to be coiled both times i was asked if I wanted the op...you don’t have a choice if it’s a SAH but they need your permission to operate on them . X

[GrannyTWest in reply to Saffynix]

I too gave my permission for my emergency treatment after SAH, as you say I had no choice. My point was I was not given any recommendations about what to do with the unruptured one, I'm not a medic but I had to assess the risk and decide. I would like to know what choices others have chosen.

[tillymint16 in reply to GrannyTWest]

Hi there

Yes similar with me. Although I didn’t have an emergency situation. Mine we’re found through a routine MRI. They didn’t know how long I’d had them but what they go by is a ‘risk ratio’ of

1. How large is the anerysm

2. Where it is in the brain

3. Family history of which my history of fatal anerysms was on my Mums side.

4. Your age

Finally the hardest part is it’s your choice. They only recommend based on these facts and if it’s 50/50 of risk of rupture opposed to risk of surgery as mine was they are happy to ‘watch and monitor’

The very hardest but is living with the fear which after 4 long worrying years I decided to have mine coiled.

Good luck with your decision but I would say as you’ve had one ‘go’ I would defo get the other sorted out if it’s big enough... please take their professional advice.. even though they may seem blasé about it.

Best of luck👍🏻

Andrea x

[GrannyTWest in reply to tillymint16]

Thanks for this Andrea, very helpful. I wish my neurosurgeon had explained a risk ratio to me, we could perhaps of worked out together what the ratio is for me. I would definitely take his advise if only he would give me some - he just wouldn't not even when I asked him directly. However, I may contact the Nurse Practitioner and ask her about standard protocols. See where that gets me. Thanks again.

[Leila56 in reply to GrannyTWest]

Good luck with your quest for answers. Do whatever it takes to live a quality life

[malalatete]

I don't think they do make recommendations. My annie was 9mm and I was given the stats and left to consider a way forward. In the end it turned out to be rather complicated and the only available treatment was only partially successful, so I am left with a 5mm annie. At my last angiogram mention was made of further treatment for it but my radiographer suggested the risks would outweigh the benefits. That is the nearest I have come to a recommendation.

As each case and each set of personsl circumstances is unique I would imagine it would be nigh on impossible to recommend except where there is a high level of risk to life. With most annies that is not the case - except for SAH of course.

You do get used to living with it there in your head (which may or may not be what you were wondering). After a while you don't think about it all the time, just once or twice most days. But the sense of panic recedes, so it is just an awareness of it. That is my experience at least - it might be different for you.....

[GrannyTWest in reply to malalatete]

Thank you, that's helpful. I have known about it since SAH in Oct 2017 but somehow I wasn't anxious about it. However now that I've recently seen my medic about it, it all seems a bit fresh in my mind. I'll just have to get used to it. Thanks again.

[Mikey48]

Permission?? My SAH was a total collapse and I didn't return to this world until coiling (and a stent ) were done and dusted. It was an emergency situation and I was in no fit state to give permission. I'm darn glad they went ahead!

[GrannyTWest]

Yes, I know. I too had a SAH and of course I gave my permission to have coiling. My question is about the unruptured aneurysm that sits there.

[eileenleach in reply to GrannyTWest]

I had two unruptured one caused a seizure n that’s how they found them but they didn’t think at the time that the seizure was anything to do it but once they saw size of it they decided it probably was, but soon as they found them they told me I needed brain surgery, n the waiting around for appointment letters was the worst 5 months of my life, ticking time bombs in my head that could’ve ruptured at any time n the usual waiting times of upto 20 weeks still applied, I used to cry waiting for postman, n then app came for angiogram n straight after it I was given app with surgeon to discuss how they’d operate n the right side was 18mm so needed clipping urgent n other side they said was 10mm so they could coil, i told them if they was clipping one they coujd clip other n I even Asked if they could do em both at same time to get it over with, but the surgeon said it’s 5/6 hour op n he wasn’t risking working on a brain for nearly 12 hours he’d be tired but he said he’d do one n keep me in hospital a week n then do other, but an emergency came in week after so I was sent home n brought back a week after that n the second one was clipped

[Tracy331]

I'm due my op next week on one the other 2 there leaving as thy say there not large enough yet even at 11 mm my surgeon said it won't rupture but I've come to the conclusion they just don't know themselves you have to do what's best for you're peace of mind xx