Hi everyone, I've been newly diagnosed with a giant aneurysm in my brain. It started with sight issues and fatigue, and got rapidly worse. I've been told my case is serious and urgent, but I'm yet to get the date for an angiogram scan which will inform surgery. The (to be confirmed) plan for surgery is a clip with a bypass.
I'm in this group for support, and to hear and learn from others going through the same situation ☺️
Hi Garden Elf and welcome, I should imagine that was a great shock to be told you have a giant aneurysm, I am sure they will not be leaving you very long and once every thing is in place will have you in and deal with it. In the mean time you have to go on as before, which I know may not be easy, I didn’t have a giant aneurysm but mine has been very unpredictable, please go back on my story to get the gist, it’s quite a journey and not very straight forward but I’m still here, so take hope from that please. My advice would be avoid alcohol, give up fags if you smoke, avoid pressure and stress, where is your aneurysm, and where in the country are you. This group is very good at offering help and support, and reassurance so keep popping back, I will keep checking take care love Alice xx
Thank you for taking the time to reply. I'm sorry to hear your situation has been complex, not what anyone needs when they're poorly!My aneurysm is located in the circle of Willis, right side. Fortunately I don't smoke or drink, and I've already handed over work to colleagues (I'm self employed and run an organisation) a few weeks ago as I didn't feel well and wanted to be prepared, rather than do all the handover when I might've been in the middle of panic. As for stress, doing my best to take it easy and make sure everyday includes nice things - friends/family popping in, light gardening, art etc.
I'm in East Anglia (east Norfolk) so I'm being seen at Addenbrookes. I've had a relative having the same procedure there too!Wishing you all the best xx
Hi Garden Elf, well you have one of the best hospitals for your op and if you have a relative already been through similar it must be a little reassuring, for the outcome. My aneurysm is on the basilar tip which is in the same area as yours, therefor I could only have stents and coils fitted, I am near Manchester, so my brain saviours are at Salford, I was told if it ruptured it would be catastrophic, but I survived that in 2017, with very minor side effects. Then few years ago it began to grow again and was pressing on my brain stem, and they gave me five years, as a last resort they would try further coils, the night before I collapsed and it was found I had a blood clot in front of aneurysm blocking it off. At a scan shortly after the clot remained in place, and I am due a scan two years after now this October to see what is happening with it, so it goes to show miracles happen and never give up hope love Alice xx
Thank you for sharing your story. It sounds like there have been many twists and turns, and that you've needed to be so brave and resilient x
Goodness me, you've both been through/are going through it. Best wishes to both of you. I'm sorry I only just found this thread. I mentioned on another of your threads about my own aneurysm, which was found purely by chance. I had the craniotomy and clipping in March 2017, for which I am very grateful, but the follow up is rubbish. I had a stroke about 18 months later, nothing to do with the aneurysm or surgery, more likely because of the stress of my horrendous divorce (after 30 years of what I thought was happy marriage) and pressure from work, which I'd returned to out of desperation for money. I've had very little follow up so I hope that you and Alibongo get much better service than me. My aneurysm was 22mm x 14mm and goodness knows how it had got to that size without bursting xx
I'm sorry to hear your follow-up care hasn't been what you needed, that's a shame and I hope it changes soon. I believe my aneurysm is larger than your measurements but I can't quite remember exactly the size... I'm still waiting for my surgery date (apparently the team met yesterday to discuss it, but they haven't updated me!). I hope you're managing ok x
Ah, all the best. I hope you get news of the meeting very soon and I hope they have their plan in place. Please let me know how you get on. I'm OK-ish, but worried about the lack of follow-up. I have had worrying issues without any help. Was referred back to surgeon and Stroke consultant in August 2022. Was given an appointment to see Stroke man last month. Went along for a 9am appointment only to be told it was cancelled. For no reason and without letting me know. At that time I'd had head and eye pain - left side, which is where aneurysm was - and was holding off going to A&E because of past experience of hours and hours waiting. Today I got a replacement appointment, but it's not until 20 December. Crazy. A Neurologist told me in August last year that I am having TIAs, not the migraines I think I'm having. He said to call 999 when it happens, but the waits... The long, long waits. Six hours while I was actually having a Stroke! I just want my head checked properly and my mind either set at rest or whatever is wrong put right. Again, all the best to you. Please update us when you get more news xx
My prayers are lifted for you . I know way back when they found my first aneurysm I was told I needed surgery sooner than later it was found the end of October and surgery was the end of November . It was pressing on something and I was having awful headaches from it . Yes watch your blood pressure and avoid stress is what I can recommend. I had another one three month later. That burst stupid me didn’t listen to my on advice and I had some high stress I really think that what cause the burst. But that was back I. 1999 and I’m doing fine in 2023. We have found another one very small best to watch it said the neuro radiologist and I have really learn no stress .
Thanks for your reply and your advice. I've been trying to keep stress to a minimum - deep breaths! - but dealing with the DWP doesn't help... I hope your current very small aneurysm doesn't cause any issues and that you can keep well x
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