Hello new here.. I had a incidental finding of a left parathalmic ica anerysm from a scan done in Aug 22... first I knew of it was a phone all out of the blue in Nov22 by a neurologist from the QE chatting to me like I knew.. as it had been first seen on a scan in 2016...no one had told me so shocked was the understatement. I had been losing my balance for a while which was getting worse.Luckily it was found and I had a flow diverting stent fitted in feb23.
My follow up angiogram was done sept 1st and it had not sealed off the Dr that did it said they would have a discussion about what's next.. Only by me phoning do I know they are going to repeat it again in March 24... I should have had a scan the day they did the angiogram but they forgot.
I am awaiting a phone consultation october time with the neurologist.
I am trying not to be bothered but I saw the anerysm clearly and knowing that blood still getting in has really affected me... My mum sadly died aged 59 of aplastic aniemia and my older sister sadly died aged 57 during the first Covid months... I will be 60 next year... But cannot help the niggling thought in the back of my head especially now knowing anerysm still there.
Back in November the consultants words if it ruptures it will be catastrophic still haunt me.. The Dr doing the check said blood still flowing in but not as much as it was without the stent...
Just having a woe is me day today which I try not to do... But only others with these in their heads could possibly understand... So this is why I have reached out on here.
That sounds really stressful and frustrating, especially when the doctors didn't pass the info on to you. I'm sorry this is happening. I hope you're able to find time and space to rest, relax and take your mind off it (it's hard, I know. I'm also dealing with an aneurysm, so I know this can be tough!). Take the best of care
I'm not surprised you're having a 'woe is me' day. Your care must seem a bit hit and miss with your scan being forgotten and the stent not fully working and that's on top of being told if the aneurysm bursts it will be catastrophic. It's easy to clump things together when feeling low, however your mum and sister, although unfortunately dying at an early age, were not diagnosed with aneurysms. Perhaps you could try to put those painful thoughts to one side in this case.
Hopefully the forgotten scan was a one off mistake that won't happen again though you've every right to bring it to the attention of PALS to hilight what happened and how it affected you.
The above issues set aside, you might write to the consultant and tell them that having been told that if the aneurysm bursts it will be catastrophic and that the stent isn't working as it should, you're finding it hard to wait till March 24 for the surgery.
I’m so sorry to hear your are going though this . I am in this group for very different reasons to you so I’ve got no idea but hopefully people on hear will understand so much more and help you with their advice .. I certainly have found this group a massive help like I’m sure you will .. try to remain positive in what I can and do know is a nhs that is in a terrible place 🫤 sue x
Hi Hidden, I have been in a similar position to you, my aneurysm was found in 2012 , and I had stents and coils fitted, unfortunately it has always been very unpredictable, and has grown and because of where it is like you I was told if it ruptured it would be catastrophic, I was prepared for surgery but the week before whilst walking my dog it ruptured, this was January 2017, I survived a subarachnoid haemorrhage, I have balance problems, poor memory, poor word search the brain substitutes words, which we just laugh at now, only garden in Manchester to have penguins in, and fatigue, the brain doesn’t work as well as it used to but hey I’m still here and I’m a survivor. I thought that would be it and Annie would behave but again she started to grow and then started to press on my brain stem, the surgeon couldn’t offer very much except up to five years, which I may say I have now passed, they were going to put extra coils in but I collapsed and when they took me for angiogram I had a blood clot in front of Annie, blocking it off, at my last scan two years ago it had started to shrink, I am due a scan twentieth October to see what’s happening. Sorry to have waffled on, but the point is never give up hope, their catastrophic forecast for me was wrong, and could be for you, they just don’t know, I don’t worry about Annie anymore, what will be will be the headway site is a godsend for chatting to people for reassurance and help, hope I’ve helped to reassure you love Alice xx
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