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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

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Original poster

Unruptured brain aneurysm, positive stories please I'm so frightened

61 replies

Stunned1 · 02/03/2023 15:59

It was found during an MRI with contrast. The neurologist thinks it was an incidental finding and not the cause of my symptoms (migraines)

My grandmother died from an undetected aneurysm which ruptured so whilst I'm fortunate to have had mine detected before a rupture I'm still really scared.

I'm being referred to a neurosurgeon who will likely do some more examinations before deciding on a treatment plan, if one is possible.

I would so love to hear some positive stories about people in my position as right now I can't even look at my lovely children without wanting to burst into tears :(

Thank you for reading

OP posts:

Pottedpalm · 02/03/2023 16:03

There was a program on tv last night which showed an operation for just this. Successful 🌺

MavisMcMinty · 02/03/2023 16:08

I don’t know much about them, thought they were rare, but on googling apparently 1:50 people might have one! What I DO know, as a former cancer nurse specialist, is that the waiting for a diagnosis and treatment plan is much worse than finding out the diagnosis. The uncertainty is horrible, but soon you’ll know what you’re dealing with. Best wishes, xxx

Original poster

Stunned1 · 02/03/2023 16:16

Thank you so much for the replies. I've been told explicitly not to Google as I'll just frighten myself so I've resisted the urge to do that but definitely feel like I need to talk about it so posting here instead.

My DM has developed migraines too so she may need to be checked herself. What crap luck.

OP posts:

TheVeryAngryCaterpillar · 02/03/2023 16:20

My mum has exactly the same- she was having an MRI for unrelated issues and the consultant just casually mentioned it, thinking she knew about it! They decided hers needs no treatment; my understanding is that most do not rupture or even cause symptoms, and once they have further examined it, chances are that it can just carry on going about its business without ever giving you any trouble. If it does need treatment, you and they are aware of it now so it can be looked after and you will know what to do if you have any symptoms. If it helps, my mum has now known about hers for several years and they said it likely had been there for 10 more years before being found. I hope yours turns out to be equally non-threatening. x

Bubblepanda · 02/03/2023 16:21

Hi My DM had one that did rupture, she survived thankfully but a further two bulging but un- ruptured were found. It is a family 'thing' and some family members have not been as lucky as DM. She had stents put in to try to prevent further issues. It was a very successful op, they went through her groin to do the procedure. She was reviewed very closely for 5 years or so without any issues. They now just closely monitor her blood pressure and general well being. Wishing you well

Veryfaraway · 02/03/2023 16:21

My dad had one when I was a kid. It was about 30 years ago, he had an operation and whatever they did was successful.
He's a healthy 75 year old now.
Best wishes, I hope you find out more soon

MavisMcMinty · 02/03/2023 16:22

Oh indeed, stay off google, leave that to the rest of us, like the “1:50” stat I gave above, to reassure you how common they are.

Dartmoorcheffy · 02/03/2023 16:25

My SIL had one that ruptured when she was 23 it was a bit scary at the time and she had surgery, but she is 32 now and has had two children, has had no side effects and is in perfect health.

Pottedpalm · 02/03/2023 16:28

The patient who was operated on in the program shown last night looked fighting fit the next day. The surgeon said that aneurisms deemed in
need of treatment were prioritised on the waiting lists. Such incredible skill.

Original poster

Stunned1 · 02/03/2023 16:34

My goodness so much positivity so quickly. Thank you all so much. It really helps!

It's almost funny, I've spent the past 4ish years having such frequent and debilitating head (and now upper back) pain I worried that it might be a brain tumour. An aneurysm never crossed my mind dispite the family history. I may have had it for years and years and been oblivious. I do heavy weight training in the gym and all sorts.

Thinking back I've had a few episodes of weird stuff like vertigo and aura going back to being adolescent.

I'm really interested in watching the documentary about the surgery if anybody has a link? Neurologist did mention surgery but I was that stunned I didn't take much in really.

OP posts:

Fortheloveofgodwhy · 02/03/2023 16:46

Not a huge help, but i had a scare on an MRI for migraines about large lesions in my brain. I spent weeks terrified I was going to develop Alzheimers or a degenerative condition. I had however had an MRI a decade before, I was able to raise the images and send them to a consultant to check.
Low and behold nothing had changed. So the worry was for nothing.
My brain has always had holes and no one knows why.. the fact is we still don't know a lot about the brain, and many findings are incidental. I hope you get a similar reassurance soon.

uncomfortablydumb53 · 02/03/2023 16:46

I don't have a link but the programme is called " Saving lives in Leeds" and it's on BBC iplayer now
Its incredible what is possible nowadays

Pottedpalm · 02/03/2023 17:00

uncomfortablydumb53 · 02/03/2023 16:46

I don't have a link but the programme is called " Saving lives in Leeds" and it's on BBC iplayer now
Its incredible what is possible nowadays

It also features a remarkably chipper chap having a double hand and arm transplant, and two little boys needing hip surgery. The skill, warmth and empathy of the surgeons was very moving, I found.

RandomMess · 02/03/2023 17:13

Colleague had a very large far reaching one that needed surgery.

First op they couldn't do the approach they had wanted to. 2nd op an overseas specialist was brought over to perform it.

Back at work in no time afterwards. I think the worst was waiting for the surgery.

Carriemac · 02/03/2023 17:31

You want an interventional Neuroradiologist to treat it in a minimally invasive fashion. I don't know what the neurosurgeon was doing on that programme last night in Leeds , that shoudl not have been open surgery !!

AgnesSi · 02/03/2023 17:33

i had an aneurysm in my brain that was discovered when it burst, it was quite large and they think I could have been living with it for 30 odd years… I had been suffering headaches, eye issues and neck aches for some time and thought my GP would have sent me for a scan but unfortunately they didn’t. I was lucky, the aneurysm was coiled as an emergency and I am doing pretty well two years on…the brain bleed did cause some deficits but I am thankful everyday and enjoying life.

I think you are in a very good position, they will monitor you closely and can treat if needed in a controlled way.

I wish you all the best and try not to worry the Neuro Team that looked after me were brilliant.

Batcountry8 · 02/03/2023 17:37

Op it's a shock I know.

Mine ruptured and I was fighting for my life. Life isn't the same.

I'm glad you will have a plan going forward.

I'm sure you'll be ok
Xx

HyacinthineMacaw · 02/03/2023 17:43

My dear dad was hospitalised with what was first diagnosed as a migraine when I was 14, which turned out to be a unruptured aneurysm.

A couple of weeks later, he was home with us right as rain.

I am now 52, he’s in his mid-70s, and has been hale and hearty ever since, despite ongoing high blood pressure.

I would say that, however frightening things are now, you have found out in time to have successful treatment, which is the overwhelmingly most likely outcome, and you can now trust in the medics to do what’s needed for you.

Take care, breathe, keep calm, and let everyone around you look after you now. 💐

donttellmehesalive · 02/03/2023 17:48

My dad had an operation after an I ruptured aneurysm was found in his brain whilst scanning for a different reason. I'm afraid I don't remember the details but they put something around it so that it couldn't get bigger. He has scans every 6 months to make sure everything is ok and it is, three years later.

ThereItIs1 · 02/03/2023 18:57

My DC had one when they were born. They did have to have an operation to put in a shunt as the aneurysm caused a condition called hydrocephalus, but they're absolutely grand now, you'd never have known that they went through! Remember, neurosurgeons are amazing, but more importantly the BRAIN is amazing. So resilient and its ability to adapt and heal is incredible! I'm so sorry this is such a scary situation, hope this gives some comfort xxx

nonevernotever · 02/03/2023 19:03

Our next door neighbour had this, had surgery and made a full recovery. Sending positive thoughts for a similarly good outcome for you.

MissVantaBlack · 02/03/2023 19:05

Karren Brady (from The Apprentice) was diagnosed with this nearly 20 years ago. She had surgery and seems to be fine. Good luck!

BiddyPop · 02/03/2023 19:10

The DD of the house next door to my DGM had this when she was in her late 30s. They clipped it and she's still knocking around happy in her 60s with 3 grown up DCs.

Original poster

Stunned1 · 02/03/2023 22:31

Thank you all so much, my friend is watching the thread and he too said how encouraging these accounts are 🙂

I've thrown myself into reading as much about the condition as I can, thanks ADHD hyperfixating!

I've noticed that alot of stuff that comes up on Google is about aneurysms that have already ruptured so I'm conscious to remind myself that I'm not at that stage right now and hopefully never will be.

Sending good wishes to those of you who have been through ruptures, I'm so sorry.

OP posts:

Batcountry8 · 03/03/2023 07:30

Brain aneurysm awareness is a Facebook page I belong to and may be worth looking at.

I tend to read the posts about ruptured aneurysms as that's what happened to me.
Yet there are many on there with unruptured ones.

It could help to get familiar with this situation?

Thanks xx

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