I have just been told that I have an unruptured cerebral aneurysm. Incidental finding on scan. I am in shock and devastated. Waiting to see neurologist but as I Am 77 they won’t do anything. How is best to try to come to terms with this. Any help so appreciated. I feel so lost and because of Covid my GP has only had a brief chat with me on phone.
Thanks
I fully understand how you're feeling. My aneurysm was an incidental finding too.
I panicked, thought I could collapse and die any minute and was scared to go out.
My consultant said best to do nothing just monitor by scan every year.
That gave me some assurance but not for long. I suffered severe pain in my eye one day when I'd been pulling my grandchild on a sledge. I started panicking again and decided I wanted to have it coiled even though I was told the pain was not likely to be caused by the aneurysm.
An attempt to coil ended up by abandoning the operation due to high risk to my eyesight. However whilst inserting the catheter into my artery damage was done. I now suffer from very painful right leg when walking.
My advice to you is do nothing, accept the situation, come to terms with it to the extent that you no longer think about it.
Two years ago I was diagnosed with stage 4 cancer. Remembering how I panicked about the aneurysm, I was determined I wouldn't do that again. I've stayed calm and taken it in my stride. I'm still here and living a good quality of life and realised that its likely to be the cancer not the aneurysm that ends my days. All that worrying resulting in electing for treatment resulting in claudication of my leg for nothing!
However I do feel whilst the consultant s tell us not to worry, their words dont fully reassure patients. I think more could be done on this.
I hope my story has helped somewhat.
Best wishes
Louise
Dear Louise
Thank you so much for replying and sharing your story/ journey. I am so sorry that you are experiencing cancer treatment as well and my thoughts are with you.Not sure where a you live but here in England they just sent me home with diagnosis and told me to wait to see a Consultant! As I live alone I feel very vulnerable and left without much support while I wait.
I am sorry that your op was unsuccessful…
Can I ask what age you are… I am 77 and don’t think they will do anything although I think that mine is quite large🥲🥲
Thank you once again for replying, it was really helpful. Xx
hi hun , im so sorry about your diagnosis , its awful when they say go home dont worry about it but i think they seem to forget its our brain our health and not worrying is easier said than done , mine was found in 2019 had a operation later in the year as it was a 20mm one how big is yours hun , im sorry you have no support via family and friends im the same , but have found this site is great for advice and support please air your worries and concerns to us we will help as much as we can , hugs for you on this journey x
Hi both, I am not sure how big it is yet as just newly found. I do get one sided headaches and eye pain though ( have always blamed it on neck problems and Fibromyalgia!) so I am terrified that it is huge!! I hope that your op went well and that you have made a decent recovery. Thank you both so much for taking the time to reply. Xx
hi hun , i hope you get to see a surgeon soon to get more information as i found the more i knew the better i felt , i had no headaches before mine was found , i have them now so some days i wish i had not had the operations but everyone is different , please keep us informed on your progress and if you need more help ring the headway helpline there great x
Hi Ellidhmac.
I have a large brain AVM which is quite similar to an aneurysm. It was diagnosed at 14 and it caused a secondary issue. But I'm 48 now and it hasn't ruptured. I regard myself as very lucky because I suffer little in the way of everyday deficits that get in the way of other's lives here. And because of that I haven't pursued any treatment. Well that and because its position means any attempt at removal is very risky for me. So I'm living with it. I won't lie, it isn't always easy. But its important I think to stay as positive as possible, focus on what you have (rather than on the condition) and be kind to yourself. Finding out you have a condition like this is truly shocking and takes a while to come to terms with. But take time to reflect, do your research if that helps and take it easy. You have made it so far without a rupture and chances are you might never have one. In which case any worrying will have been for nothing. Surround yourself with the people that love you and be thankful for every day. Best of luck to you...
Lulu x
Thank you so much for taking the time to reply. Think that I am still in shock tbh!! I was sent home from A&E , just told that I will get a clinic referral but not really given any advice. My Dr was a bit abrupt on the phone and didn’t explain the report from the hospital, so I am imagining the worst.
I have had headaches for the last 5 days and of course worrying about them more than usual.
I am so pleased that you are well and getting on with life… at the moment I am just worrying about life never being the same and being a burden to people. Also worried that they will take my driving licence away as I am on my own and a bit isolated without a car.
Thanks again for replying, you don’t know how much it means as I just feel abandoned at the moment.
M
Ahhh, bless you. Thanks so much for your kind reply. Its no problem at all and if you ever need a friendly ear or just someone who might be a little more understanding please do say. I can completely understand how you feel and about your anxieties. I too worry about my driving licence as for me it signals independence and although I'm married my husband spends a lot of time away. However although it can be frustrating dealing with the DVLA my experience is that they don't take your licence unless something happens - medically I mean. Then they might take it for 6 months or put some restriction on. But I have lost mine a few times now and got it back. So hopefully you'll be fine. Unfortunately I have been on the receiving end of some not-very-understanding doctors as well! I find that GPs know very little about brain injury and really shouldn't judge (but do try to!) My advice is to take them with a pinch of salt. Its their problem not yours. Hold your head high, you're still you. I know its difficult but do try not to stress too much though. It can only make things worse. Have you spoken to Headway at all yet? If not you might want to try calling their helpline for some advice. With best wishes
Hi. .. and thank you again. I couldn’t get through to Headway but have spoken to someone at The Brain Charity who was very helpful. I know that no one can really help me until I know exactly what I am dealing with. Of course at the moment zi am judging myself… my headache in a particular place that I have had on Andover for years suddenly becomes sinister and my eye orbital eye pain signals imminent disaster! 😳 Trying to keep it together but not easy. Thank you sooooo much again and hope that you are okay and feeling well. M
Sorry about the mistakes in the above! It’s just that I am struggling to see on my iPhone at the moment. At least I hope that it is that!! 🤣xx
Hi,
I too have an unruptured aneurysm which was found when two others exploded a week apart. When the first one went I collapsed and needed cpr and have no recollection of anything of the first few weeks in intensive care. After a long spell in icu they said they wanted to wait until I was over the first before looking at the leftover one. When they did look two years later it was large and they offered surgery.
I’ve regained so much after my original ruptures that I’ve decided not to have any more surgery. I think coming to terms with this takes a while but for me, and I’m a similar age to you, quality of life is more important than length. I don’t want to take the risks associated with surgery and possibly be left in a worse state. I think once you are in this position there is a lot of thinking and some pretty bleak days to go through, but eventually, my own experience is that I am in charge of the decision and now I’m happy with it (we’ll, I wish I didn’t have to make it but hey!) I’m unlikely to survive another SAH, especially with the current nhs takeover/pandemic situation, so, in a way, this is my get out of jail card.
You could’ve had that aneurysm for a long time already, so you've survived so far. If it’s small it may stay as it is and never grow. Maybe your neurologist could refer you to neuropsychology. Even if you had to go privately it might help you coming to terms with it.
Wishing you all the best. Xx
I originally had aneurysms burst but due to high blood pressure I had an aneurysm for on the cerebellum.
To stop it bursting it was injected with glue to block it.
I was given a stroke to save my life
Hi Redclutter and SpideymanThank you for sharing your stories and I hope that you are both doing well.
I still haven’t had a first appointment with the neurologist yet! That has been nearly 3 months.I have kind of stopped thinking about it … just now and again. I am sure that they will not offer surgery anyway at my age so will just have to live with it…. My understanding is that many people have an aneurysm but don’t know it( sort of wish I didn’t!) I get episodes of high blood pressure with anxiety/ panic attacks but
normally it is under control. I would like at least to see a neurologist though!Take care
I’m 40 and have multiple Anurysms that they won’t do anything about- it’s scary
I know how scary it it it something you have no control I know sometimes they say it best to leave alone but you are the one living with it not them I know it depends on age if they will do anything I had one clipped at 42 and one burst right before I turn 43 and I’m 65 now do watch your blood pressure . I hope you get to talk to your doctor more I know when I was going through it I talk to a neuro therapist and she help put me at ease I had to get neurosurgeon to refer me to her I know there aren’t a lot in that field but if you can find a neuro therapist I would highly recommend.
If you ever need to message someone feel free to message me I can always listen
Thank you for taking the time to add valuable info to this thread. I was sent home from A&E in august after being told that they had found it and have not yet spoken to a neurologist , neurosurgeon or Neuro therapist. I have just had to try to come to terms with it myself. It is frustrating and difficult… no one to answer questions or give advice. The lovely people on here do help so thank you all again for replying .
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