Angiogram

[Hon33]

I’m 3 years post coiling to a ruptured cerebral aneurysm which caused a SAH.

My last MRI was December 2020 and about two months after that, I received a letter to say the team had looked at the scan results and they wanted to do an angiogram in December 2021 because the MRI had detected slight changes.

Obviously I was anxious but tried to content myself that they know what they’re doing and if they thought it was okay to wait, it was fine.

Of course, December has come and gone and with the current situation, there has been no angiogram. The department confirmed I was still on the waiting list and hoped to bring me up for pre-assesssnent mid-January and the procedure would follow Feb/March. That hasn’t happened either. I haven’t made a fuss, as there’s no point. However, I am now very anxious. My GP also thinks it’s been too long now and has written to the consultant to flag the case up. I think she thinks if it’s going to be delayed indefinitely they should maybe repeat the MRI, at least.

I don’t know if I should be concerned? On the one hand, I dont want the angiogram because I don’t want to have more coiling. I had a very traumatic time after my SAH with breathing complications and respiratory arrests, which were not handled terribly well by the ward and resulted in me being re-intubated and back in ICU. I don’t want to go back the ward. I know though, that I absolutely need to have the angiogram done and I’m very anxious because I don’t know what’s going on with the aneurysm.

I don’t want to make a fuss because I know lots of people are waiting but I feel like I’ve been waiting quite a long time now to know what the changes are and what they mean.

[Alibongo60]

Hi Hon33, I have been where you have been in the past, I found the pals team at the hospital where you are based your best bet. They can get where we can’t and are very fair in their approach. Which hospital are you based with, is it known to be neuro blessed, but especially after having the first SAH you will be anxious and not want to repeat. Where is your aneurysm, the team will be aware of your previous problems and ready to expect them recurring, I hope you can get the answers you need but the lovely people here will help all they can, lots of luck love Alice xx

[123Bereft]

They kept my partner waiting for 2 years after being told his previous coiling needed investigating by angiogram, keep at them.

[ABIfamily]

Hi. I am so sorry to hear that, and it's natural that the uncertainty raised by the MRI is causing you some anxiety. Why don't you ring the vascular nurse specialists at the hospital? PALS is another option. I think if you point out how anxious this is making you, it certainly would not be taken in the wrong way.

Hospital departments are now expected to address waiting lists, but still have to use infection control procedures related to Omicron. Lots of relevant staff have been redeployed in recent months due to staff illness, so I am sure they have not forgotten about you but are struggling with the same logistics as the rest of the health service. My husband's angiogram was delayed by a year, too.

It will do no harm to ask. Hope it's resolved soon.

[Pairofboots]

Hi Hon, I can empathise with your predicament. I have just been through a year of tests, assessments, and scans. I still don't have any definitive answers. As alibongo suggests you could try PALS to see if they can move things along for you.

You are already concerned about this. Not knowing if you need to worry is sometimes more worrying than having a definite answer, at least then you have a treatment plan or you can forget the whole thing. Your past experience also adds to the worry. Try, difficult as it is, to put that out your mind. That was then, you got through it. Hopefully your GP will speed things along.

Best wishes 🍀

[lcd8]

Hi there. So sorry to hear you are getting anxious about this. Its completely understandable. I have an untreatable AVM and have (until recently) been offered an MRII and angiogram to monitor it every couple of years. Sadly I am well overdue and have heard nothing from the hospital that treats me. I'm in the UK too.