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Brain Aneurysm Awareness UK
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Looking for some wisdom !!

Hi everyone, I am hoping for some words of wisdom from those of you living with aneurysms. A long story but at 56 years of age I have just found my birth family. Brain aneurysms feature in the family. My father had one, but died of other causes, and my sister died when hers burst at 61. I have a different mother to my sister. Current NHS guidelines is that I should have a scan as I might be at greater risk than the general population.

However, I am having doubts about doing this -- I was fine not knowing about this risk until 4 months ago, and am concerned that if one is discovered then I will have all the angst of worrying about it, difficulty getting travel insurance, possible issues with my drivers license and of course the risk of surgery if that were to be deemed necessary. But I am jumping way to far ahead. What I wondered was:

How many of you good folk would turn back time to not knowing and just live knowing that there is a slightly higher risk than the person next to me; and

Out of interest does the family link feature for anyone here?

I have been inspired by the resilience and bravery of everyone on this forum, and want to send all my good wishes to everyone living with this.

Thank you so much

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Hi, wow, well for me mine was found when I had visual problems and I didn't get a chance to think as I was admitted to hospital there and then and transferred for surgery asap, if it had ruptured I wouldn't be here now.

You have a chance to explore this as many don't unfortunately, talk to your gp and get more advise.

No family link for me and hospital test in the months after surgery could show no reason for it

Take care it's best to know rather than worry about something that may not exist, i'm told we are the lucky ones. X

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I found out incidentally almost 3 years ago, then after much angst discovered they could neither clip nor coil, so was offered a procedure for a stent - which was only partially successful.

I live with mine quite happily now - it has given life an immediacy and poignancy that it didn't have before. Every day I know I am blessed. But it has to be acknowledged that I am equally blessed in getting to this point - many people never get beyond terrified. And I had to do all I could, and explore every treatment avenue, before I could relax and accept that this is just the way it is. It is not an easy question to answer - we are all as unique in our emotional response as our annies are.

You don't mention any symptoms - you should be warned that your local NHS trust may not be happy to scan purely on the family connection if you are asymptomatic. Especially as they estimate that as many as 1 in 4 people have aneurysms, but generally use a figure of 1 in 80 for risk of rupture of the more common small ones - i.e. quite a lot of people have them but most are stable.

There is therefore no presumption that if they were to scan and were to find one they would operate - wait and watch is a common management programme for anything under 7mm in the UK. You need to try and weigh up how you would cope with finding out you do have one and being told to wait and watch.

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Hi thank you for your thoughts -- I have no symptoms at all. I have had a letter from our local hospital (Milton Keynes) and I think they may well conduct a scan. But I don't smoke, rarely drink and am not overweight. However, I am a bit of a stressy person and my bp is often over 140 -- which is not good. I need to do something to bring that down -- so have started yoga -- but am absolutely awful at it !!!

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You made me smile about the yoga .

There are wonderful relaxation meditation on YouTube which I find useful which don’t ask you do a sunrise salute 😀

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Hi,

Firstly I had a pretty large aneurysm discovered after suffering a continual very bad headache for 2 years. No known family links of aneurysms so it was a surprise. A 5 hour operation coiled and glued the pesky sod, I'm now left with continuous headaches, memory issues, bouts of confusion, mood swings and an inability to do strenuous activities due to the feeling of being shot in the head. The headaches started 2010, OP on 12/2012 when I was 39. I'm now unemployed due to my limitations BUT I'm still here valuing every moment with my family.

All the best.

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What a hard situation --- I do hope you make some progress and get to a decent quality of life,

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My sister had a brain bleed 17 years ago. She was lucky and survived and had a very normal life as a teacher. My grandmother, aunt and cousin all died from brain aneurysms, when I went to the doctor years ago they said that I wasn’t a candidate to be checked. Roll on to 2017 and one of my other sisters decided to get checked and it came to light that she has a 3m aneurysm on the front part of our brain. We were then encouraged to get checked. I had an mri in the September and discovered that I have a 5m basilar tip aneurysm. I had a angiogram 2 weeks later and now have an appointment with the consultant next month. And guess what I didn’t get life insurance , mine had expired. I really now wish that I had never gone down the road of exploration as I was living a happy normal life for 50 years .... everybody deals with everything differently and I am quite pragmatic.

I think only you can make the decision , I wish I had spent more time thinking about the outcome before I did and now totally unprepared for it ..... very best of luck in your decision and let me know . Ulf anybody has any words of advise for me I would be grateful.

I have watched three seminars on iTunes by us neurologist who go through all risk factors

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Thank you for taking the time to reply --- I am interested that you regret finding out. Trouble with names on forums is its often difficult to know if someone is male or female. I read a research piece from the US into family links -- and interestingly where the aneurisms occurred on younger generations -- it was nearly all females with a high percentage of smokers and narcotic users. As Im male, non smoker for over 10 years and not as much as a spliff in the past -- I hope that Im ok. But of course I might be clutching at straws. All I can do is weigh up the odds and make a decision. I hope everything goes well for you . Take care

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Hi, I suffered a SAH 15 years ago & was really lucky to survive. It took a few years but I got back to perfectly normal. Last December 2015 I felt rather poorly & the next thing I woke up in an ambulance on my way to hospital. To cut a long story short a rather large aneurysm was found which I had clipped in early August 2016. I HAD TO have the treatment as I just couldn't stand the thought of it bursting & maybe my Grandson or daughter finding me. I knew that would be a situation that neither of them would ever get over. After discharge from hospital I was in a really good place but started to go backwards for a little while. I think the time in theatre (8.5 hours) & the amount of anaesthetic used I really wasn't thinking clearly. The recovery really works the wrong way round as in initially your system is so overloaded with anaesthetic it covers any underlying symptoms. I started to get a little down hearted as I just couldn't think that this would be normal. It stands to reason had I been thinking CLEARLY that the more the anaesthetic wears off then yes you will have a dip in recovery but over the last few weeks it's really going the right way now & I don't have one single regret of having the clip procedure carried out. No more stressing about the Ticking Time Bomb anymore. I'm a 64 year old woman & I'm quite slim & average. I'm Self Employed & have been for 30 years. I've been back at work since a fortnight after the surgery & mine was in what I thought was a bad place. As low as my ear lobes & dead central so it was deep surgery. I did feel really lucky to have secured a young Portugese Surgeon who has since moved on from East Yorkshire (Where I had my surgery) to one of the top London Hospitals. He did GENUINLY care & I think it really helps if you feel you can trust your surgeon & build a good relationship with him/her. I honestly can't believe that knowing the problem exists you won't be thinking about it on a regular basis?? If you can then you must be really strong in character. Once I was diagnosed I just wanted to get on & get the operation DONE!! I know it's not an easy decision but it has to be 100% YOUR decision. I know for myself the decision I made was the right one.

Sincerely GOOD LUCK in whatever decision you make & I truly wish you well.

Lynda

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Ps - brain aneurysms risk increase if family history , it’s normay 3 direct eg sibling and parent or two siblings . So all of these things will be put into account when a neurologist decides on surgery or not .. so we don’t know Yet

But the thing that everybody says is the risk of smoking . It is the largest risk factor of a bleed so unfortunately my 3 cigarettes a day - no longer . Thankfully I had been of them for years and had recently started on 3 a day .

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2 direct not three

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Hi I am a 50 year old female and your right it’s more common in the fairer sex - lucky us . Finland has the highest percentage they don’t know why. Very neat of luck in your decision and let me know and I wil too when I see the consultant next month

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How strange about Finland --- wonder if there is potentially a diet connection ? Still pondering my decision - I do have high blood pressure so need to address that, given up salt and even wondering if I can quite my stressful job. Something I have been wanting to do for years - and might have found a legitimate excuse.

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Hi, I have just posted my first post on here and can 100% understand your dilemma. I am half thinking I wish I didn't know but should I be grateful it's been found? My family history has some bearing but when my sister had (and fully recovered) a Subarachnoid Haemorrhage 4 years they said it was of unknown cause and they could not find any evidence of an aneurysm, past or present. I am now wondering whether a ruptured Annie would always be obvious following a SAH or whether they missed it? She was treated at Addenbrookes so feel their reputation should reassure me. I will be interested to see other replies you receive. I hope you find some help on here.

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its not the easiest decision I have ever faced. If there is one and it is in danger of rupture of course I would want to do something about it --- if there is nothing there thats the best outcome. What Im concerned about is the middle path and watchful waiting - knowing there is a problem but not knowing if anything will ever come of it. I am a bit of a worrier - I know that it would play on my mind a lot and so not knowing is attractive

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Hi i have a famiy history my sis died in 2013 and my brother has one and recently discovered my uncle died years ago with the same. When my sis died the coroner advised that all us siblings should get scanned. At the time i thought nah whats the chances so didnt bother then in 2015 i had a seizure and when i eventually had a scan some 10 months later they found my annie it was 3mm then but had grown to 5mm spanning to feeds i was scared and anxious and i hated the fact it had been discovered esp after the awful non communication and losing me in the system numerous times but now ive had it clipped im glad . Im female 52 gave up smoking 6 years ago. My brother is still being monitored for his at 4mm he is pragmatic about his. Good luck i wish you well and that you make the right decision for you xx

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Thank you for taking the time to share your experiences --- Im still pondering - my appointment at the hospital is not until mid Feb so plenty of time to consider options. I hope all goes well for you.

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Well I have made a decision --- and I have decided not to take this any further so have cancelled out my hospital appointment. I know I am most probably at a higher risk than the general population -- but the prospect of finding something and living with the consequential worry is not something I want to do. Some might think Im burying my head in the sand ... but I am going to move on, but just be aware that I will need to take prompt action if any symptoms should emerge.

I really hope all goes well for other contributors to this board, which I have found immensely helpful in making my decision.

Thank you

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Well done in making a decision. There is no right or wrong decision, just whatever you feel is right for you.

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My brother aneurism burst but was ok they found mine after my stroke the best thing was finding out as now I'm in control of what happens I'm waiting my op which is shortly not knowing for me is worse because I spend so much time with my family it's brought us closer I'm dreading op but know after everything can get back to normal I won't have it niggling the rest of my life thinking what if it burst I hope this is helpful it was worse not knowing what I wanted to do

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For a long time i wished i hadnt been told

However, it spurred me on to get my affairs in order. I arranged power of attorney for financial affairs and mental health/well being.

Its also made me review whats important to me and become clearer in how i want to live the rest of my life.

Ive got through the freaking out stage (we all do that initially) and nowadays i hardly think about it.

As for travel insurance its not much higher. As i had a seizure (unrelated to the aneurysm) my license has to be reviewed in 3 years. As the consultant considers my 6mm aneurysm low risk then i dont think dvla were unduly concerned as they go on the specialists opinion on risk.

Hope that helps

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