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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

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:
PermanentTemporary · 03/03/2023 07:34

My mother had one diagnosed at around 65. She was obviously very scared at first but her consultant said essentially 'meh, no biggie' (to be technical about it!)

I have to admit it did eventually rupture - when she was 86. She is still with us...

JT69 · 03/03/2023 07:38

My mum had an aneurysm that burst - they think she had it all her life. The family legend is that despite all this going on she never stopped talking! Treated at the JR in Oxford and is still fine to this day. It’s good they’ve found yours now and can start treatment. Take care OP.

Thepollonator · 03/03/2023 10:01

I had a rather large one (SAH) that burst, I was fighting for my life! I had it coiled then had a stent put in as it burst again exactly 6 months later. They also found that I had 4 other aneurysms, I've now had them all coiled!
This was 11 years ago! I'm now almost but not completely back to normal!
My wholehearted thanks go to Dr Celerini, the surgeon at JR hospital Oxford.
There is life after aneurysms!
Good luck op, you'll be fine as they found it early!

Thepollonator · 03/03/2023 10:04

Beyond the grey is an excellent forum for advice and reassurance!

BiddyPop · 03/03/2023 21:02

As it happens, there is a news report on the journal.ie tonight about a DJ recovering in Dublin from this so that may also be positive for you. I often listen to his shows!

Sorry I can't link but it's one of the latest articles.

Original poster
Stunned1 · 05/03/2023 19:27

Thank you for the advice and good wishes 🙂

I don't suppose anybody has an inkling as to how long it's likely to take to see a neurosurgeon? I know my case is going to be discussed at the next MDT but that's all I do know.

I just have a few questions I want to ask IE the size and placement of the aneurysm and I can't get in touch with anybody in neurology for the life of me. I have a call scheduled for 6 weeks time to discuss the migraines but I don't really want to go so long without any answers at all. I'm in daily pain at the minute and my eyesight is being affected (I wear lenses and the prescription is fine so I'm concerned it could be aneurysm related)

OP posts:
Original poster
Stunned1 · 05/03/2023 19:30

Also I watched the documentary mentioned - great watch!

OP posts:
Zanatdy · 05/03/2023 19:32

A friend had one and was due to have surgery but never has, maybe they decided it didn’t need doing. But she’s had it around 12yrs plus now

MavisMcMinty · 05/03/2023 19:42

There may be a neuro nurse specialist at the hospital, who’d be able to keep you in the loop, @Stunned1 . Phone the hospital switchboard and ask to be put through. They can act as your representative at the MDT.

Wantanytoastwiththat · 05/03/2023 19:56

My MIL had a aneurysm that burst 10 years ago. She also had a heart attack at the same time. The doctors said to my DH that they do not know how she survived but she did.
We were walking back from town when it happened. I remembered the day like it was yesterday. My MIL collapsed onto me and the hospital said, if she was on her own she wouldn't of survived as we called an ambulance straight away plus a doctor was driving past and stopped to help. Everything happened so quickly. She was taken to our local hospital, they scanned her and then she was blue lighter to the London hospital. Had a 7 hour brain operation. She made a full recovery. The specialists at the London hospital sent his medical students round to see my MIL as she shouldn't of survived. They asked us if they could use her medical notes in the future for the students. Not sure if they ever did. The hospital was amazing and after around 9 months she was back to herself.
I hope everything will be fine OP.

thestoryteller · 05/03/2023 20:10

NC for this. My husband had an unruptured but suspected leaking brain aneurysm detected on an MRI nearly twelve years ago. It was very close to the optic nerve. He was rushed to a neurological wing of a London hospital and had it embolised through a small entry point in his groin. He was in intensive care for 24 hours post op, back on the ward and then home three days later told not to do any contact sport for three weeks. Our children were six and eight. It was a frightening time but he has been in excellent health ever since, touch wood. They did regular scans for a couple of years and told to just get on with his life. I remember the neurologist saying to him when he discharged "when you are back in the gym, just look at all the people on the other treadmills and think that you are probably healthier than they generally are as so many people are walking about with enraptured aneurysms but just don't know about it. You were one of the lucky ones." Really hope my little story helps OP and wishing you all the very best.

thestoryteller · 05/03/2023 20:11

Not enraptured (blooming spell check!) unruptured.

Original poster
Stunned1 · 06/03/2023 09:58

I'll give the hospital a call today and see if I can talk to anybody, good idea about asking for a neuro nurse specialist. I imagine there are thousands of people in the same boat as me atm so i don't want to be a mega nuisance I just think I'll feel a bit better for being able to ask the questions and hear the answers iykwim.

Another big thanks to those of you sharing your experiences it really has helped 🙂

OP posts:
Original poster
Stunned1 · 17/03/2023 22:53

I received a letter today informing me of a telephone appointment that has been scheduled with neurosurgeon for Tuesday.

There was a separate letter sent to my GP and copied to me detailing the size and location of the aneurysm. Its a 10mm "right internal carotid artery termination aneurysm" so alot bigger than I expected.

It looks like it will be surgery after all 😔

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MavisMcMinty · 17/03/2023 23:10

How are you feeling about that, @Stunned1 ? There’s been a lot of very positive stories on your thread, hope they’ve helped reassure you? xx

Original poster
Stunned1 · 17/03/2023 23:18

MavisMcMinty · 17/03/2023 23:10

How are you feeling about that, @Stunned1 ? There’s been a lot of very positive stories on your thread, hope they’ve helped reassure you? xx

Pretty worried I'll be honest. I had already half convinced myself it would be small and they'd simply monitor it.

I have been back here a couple of times today to re read the replies and they're definitely encouraging. Hopefully before too long this will be over and done with.

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MavisMcMinty · 18/03/2023 00:20

The waiting’s the worst, honestly. Once you know what you’re dealing with you can deal with it. The uncertainty prevents you getting your head round it, too many possibilities and outcomes to contend with. Roll on Tuesday! x

thestoryteller · 18/03/2023 00:22

Hi again OP. It is so very natural to be worried. I understand that. I was petrified when my DH was diagnosed with an aneurysm and he was rushed straight to hospital from the diagnosis appointment. However, I swear that within a month or so of the bombshell being dropped, it really did feel like it had just been a bad dream as it was dealt with and life went on as normal and that was well over ten years ago. You will be fine. It will be dealt with. What is terrifying for us is just routine surgery for neurosurgeons. Sending love.

ElonsMusky · 18/03/2023 00:24

My dad was having a scan for carotid artery issues where they suspected a blockage. There was none, but the CT scan showed a dangerous aneurysm in his brain. He was scheduled for surgery to address it.

While in there they found 3 more. All 4 were "fixed" with a coil or whatever it is. He spent like 2 days in the hospital and was released as soon as all the swelling subsided and was 1000% fine after.

It's horrifying to us, brain surgery, but so very routine for these doctors.

Honestly, finding an aneurysm before it ruptures is great. I suspect you'll be fine. The surgeon told my dad that tons of us are walking around with aneurysms and most of the time they never rupture and we never know we had them. But when they do find them, they treat them as if they could rupture and mitigate that risk with surgery.

Hope that helps.

Original poster
Stunned1 · 18/03/2023 16:46

These posts most definitely do help, I really appreciate all of you taking the time. The good outcomes are encouraging.

It's unfortunate that it would be discovered now and not years ago when the NHS was functioning better (though I know underfunding has been a problem for a long time)

The fact it took them well over a month to give me my MRI results, how they were unreachable for discussion after i got those results over the phone, now the telephone appointment instead of one in person. It doesn't fill me with confidence. Hopefully they take good care of me.

Thank you for the well wishes, I'll try my best to relax about it a little.

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Batcountry8 · 18/03/2023 17:14

You must be very scared and I understand that fully having had a rupture 4 yrs ago.
It's very unfortunate that the NHS is in the state it is, hopefully on Tuesday the neurosurgeon will have some positive news to get this coiled or a stented v soon.

Xxx 🫂

Original poster
Stunned1 · 19/03/2023 11:00

I'm really sorry that happened to you, Bat. I'm so glad you and the others survived. It's really scary stuff💐

I'm wondering how soon they'd opt to do surgery on something like this given that it's so symptomatic. I can't bare the thought of being stuck on a waiting list for years 😐

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purpledalmation · 19/03/2023 11:07

If you've given birth naturally and the aneurism didn't rupture then, that's a good sign. The rise in blood pressure and stress of childbirth puts huge stress on the blood vessels, so you're in good hands with a neurosurgeon

Original poster
Stunned1 · 19/03/2023 11:20

purpledalmation · 19/03/2023 11:07

If you've given birth naturally and the aneurism didn't rupture then, that's a good sign. The rise in blood pressure and stress of childbirth puts huge stress on the blood vessels, so you're in good hands with a neurosurgeon

That's a really good point!

I've had 3 natural births (most recent natural birth in 2019) and one later cesarean, plus some really stressful events, lifting heavy weights etc and it didn't rupture during any of that.

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gogohmm · 19/03/2023 11:28

They featured the surgery on a programme on the tv recently (I was watching on iPlayer so not sure when it aired) it was successful! As scary as it is for you, this is a neurosurgeons job, wait lists for such surgery are obviously prioritised according to risk but should not be long like orthopaedics etc.