I had a SAH/bleed on the brain/ruptured Aneurysm on my birthday in April during Covid. I know, what are the odds! Anyway, they found another Aneurysm but smaller than the one that ruptured. Then they monitored it for a few years and then they explained I wouldn’t be having any more scans and if I have any worrying symptoms go to A&E. So I went back to work, working with children who have emotional, behavioural, learning challenges and Autism. Time has gone on and I just would like to see what’s happening up there, not because of any worrying symptoms other than the odd headache, but just to see if it has grown or changed? It feels wrong to ask if I can have scan just to see what’s happening, when there are people being rushed in to hospital as I was once to have life saving brain surgery, however, I can’t help but wonder? I can’t afford to pay for one either. Anyone out there having any similar experience? Or not and just want to comment or advise? Hope you are all doing well I haven’t written for a long time but I often read all of your posts.
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JoannaHelen
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Hi Joanna, I've not been in your situation, I have had scans periodically. If it is beginning to niggle you it might be worth expressing your thoughts to your GP, they maybe able to put your mind to rest, or arrange a scan. No harm in having a chat.
Thanks so much for your response, really appreciate it. I think maybe I’ll give it a few more years to grow or not and then do as you have said and what deep down I would have done anyway. How often are your scans? How does your brain injury affect you on a day to day basis? I seem to process things differently and noisy places with lots of stimulus are not great places for me anymore, but my short term memory which was not great after the brain surgery seems to have improved and I don’t seem to get as tired so quickly as I used to? I hope I’m not asking you too many questions?
My scans have been about 5 years apart. Memory is a problem to a point that dementia was suspected, just been through 4 years of tests, scans, prodded and poked, to be told yes it was dementia, then to be told no it's not. I have difficulty structuring activities, planning, even simple tasks can become overwhelming as my focus wonders, excessive noise just shuts down any thought process, supermarkets are confusing, mobility isn't great. It probably sounds worse then it is really. I get by, it is what it is, life goes on. I could look back with regret, but who knows what is round the corner....
It sounds like you have really been on quite a journey, like so many people on here! It’s interesting that your scans are 5 years apart and good that you are still receiving them, As for the 4 years of tests to investigate possible dementia that must have been to say the least ‘challenging’. It’s quite a thing living with something that cannot be clearly seen by others? Like you I find noisy environments overwhelming and yes thought process just shuts down. I had to fight to be taken off playground duty with 400 children as the headteacher who I worked for couldn’t quite grasp why I found that difficult? I had to ask to be sent to occupational health for support which was a godsend and had to through around in conversations the ‘2010 equality law’. Anyway, my short term memory was terrible after the brain surgery but that seems to have improved so much. My processing has definitely changed and I have to ask people to slow down when talking or giving instructions. I am defo a one to one person. Any more people around becomes extremely exhausting. After work, I literally force myself to cook something and then sleep for 10-12 hours to recover! I find working full time saps every ounce of energy and is all I have time for. Can I ask how your brain injury began? Did you have surgery? How long ago? Did you give up work? Yes, regrets seem futile. and rain injury’s certainly emphasis the living in the moment as who knows what the future holds? A family member said to me once ‘ It must be like walking around with a ticking time bomb’ Which was not the most comforting words I could of heard! Lol A neighbour said to me after my near death experience ‘ Oh yeah, bleed on the brain, my brother had what you had and he was fine after surgery but then died 5 years after!’ (May he rest in peace) I do have to laugh as it’s the only way to deal with it for me! Maybe we should start a group and call it ‘ Inappropriate yet funny things people say to you whilst living with a Brain Injury’ Another thing that infuriates me is when you are telling people how your memory is affected and the response is ‘ Yeah, I get that all the time!’ Lol
Thanks again for your response, please ignore my questions if they are too personal.
Mine was a dissection of the vertebral artery, so no surgery, I was treated with clot busting drugs that I now know didn't do a lot of good. I thought I'd be back to work after about a week, but I never did. Initially my recovery seemed to go well, but something went wrong, I deteriorated over the next couple of months, not sure what happened but my recovery was termed as incomplete. Occupational health signed me off as unemployable as did the DWP.I can't imagine coping with a school of children, if they are anything like when I was at school, I can't remember any lessons where we sat down quietly except RE, that was taught by a psychopathic teacher who scared the hell out of the toughest of kids, what is it with RE teachers? Hope that is not your speciality? Sorry, just my old experience of school.......
I used to say that I had a memory of a goldfish, until some boffin proved they have quite a good memory, and yes I have had many people with the phrase "oh, that happens to me........." and "I know someone......." or "you look ok......"
I know that mark 1 version is very different from mark 2 version. Mark 1 could stand in front of people and teach theory and physical skills to dr's, nurses, care staff, etc, mark 2, can't retain the process of boiling an egg consistently, but can bake a loaf of bread (having said that, I nearly incinerated a loaf yesterday because set the timer wrong ). I find it difficult now to pass the time of day in conversation, and I can't trust my memory to recall anything with any accuracy. I can start to make a shepherd's pie, and end up with spaghetti Bolognese because I loss my train of thought three times from starting, or I can end up aborting the whole process before starting (because the process is too overwhelming) and settle for a packet of crisps. Every day starts with good intentions, but results little or nothing happening. I love it, on rare occasions when family visit, but pray for it to be over quickly because I end up feeling like a performing monkey.
It is a type of stroke, in my case it was right side, and effected my right side affecting the lower parts of the brain, including the hypothalamus, as well as the frontal lobe. What caused it I'm not sure, possibly undiagnosed high blood pressure, but I did read a paper that suggested that people who regularly participate in the type of exercise I did within my job increased the risk of this type of injury, I unfortunately didn't save that search, so when I tried to cite this as a possible cause I couldn't find it again and haven't found any similar literature. I guess there are a number of factors that individually are innocent enough, but in combination they add up. I suppose this is a long winded way of me saying I don't really know the cause, and I probably got my affect and effect back to front. A dissection is when the lining of an artery collapses, which is why the thrombolytics didn't help.Ian
Hi Joanna, I like you was having my aneurysm monitored until I had surgery, I had coils and stents fitted, they continued to monitor for further two years and said they found if nothing moved in that time it wasn’t going to so stopped scanning. I went back to my doctors few years later as I was getting severe pain especially when I bent down or sneezed etc, my doctor sent me for a scan due to my previous history, and it was found my aneurysm had grown. I was due to go back in have more coils fitted and it ruptured, I had a large bleed, that was 2017, and since then they have continued to monitor because it has remained very unpredictable, growing so big was pressing on my brain stem, then a blood clot has blocked it off and my aneurysm has shrunk, so that’s where I am up to now. They continue to scan me yearly, at one point they gave me up to five years to live when my aneurysm was pressing on the brain stem, and that was six years ago, so I am extremely relieved to get this far, take care love Alice xx
Thanks so much for your response. It sounds like you have been through quite a journey! Thank goodness you went in and got that pain checked out! The unpredictability and the not knowing what’s going on up there is quite a thing isn’t it? It sounds like from what I am learning from yourself and others, two years seems to be the standard time to monitor Aneurysms and brain activity after rupturing. Then it was a case of being told, If I experience any symptoms similar to my rupture or otherwise go straight to A&E or call my GP. Which I totally understand. You have had a whole load of activities happening and would need consistent monitoring. How is the pain now? Are you off work? Do you have noise sensitivity? How are busy places for you? Thanks again for your reply.
Hi JoannaHelen, I did return to work after the rupture, I was a senior care assistant, in a residential home so was in charge when on duty. Work was very good with me taking it slowly, but I struggled with memory issues, I had to write everything down so I didn’t miss anything, which made it even more tiring, I decided to step down and become a carer, physically harder but mentally less stressful and I loved it. I managed until the aneurysm grew so big and was pressing on my brain stem. I went on holiday to Majorca, and ended up spending it in hospital, they were fascinated with my brain and wouldn’t let me out, I was determined they were not going to touch my brain, so I discharged myself and came home, never to fly again lol. Anyway that was also the last time I worked, I was over sixty, so had to take early retirement. I was very lucky I had no physical weaknesses, but mentally my brain struggles I have a blackboard to remind me, medication times etc, or if I cook something, I write the time down otherwise I forget, I still suffer with head pain, I know when my analgesia is due, and have difficulty bending down, balance issues, and mobility, I use a stick, my son and daughter look after me so I’m very lucky, I just miss being able to do the jobs I use to do and enjoy like decorating and gardening etc, but I am soon to be 68, and lucky and grateful to be so, so I shouldn’t complain. The one saying that use to irritate me was people used to say, well you look well, people not understand brain injuries are for life, we laugh now, I say we’re the only garden in Manchester that has penguins in the garden, that’s what my brain used to change the pigeons to lol, you take care to I’ve rabbitted too much, you’ll get lots of support on here love Alice xx
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Tough decision 
What do all or some of the abbreviations used mean! Can Headway explain please.
No apparent reason for blackout.
Post Brain Surgery Anxiety
Just been told I have a 'small brain Aneurysm'... but that's all I know?!
