My story: Life after a subarachnoid haemorrhage.

Lots of people ask what happened that day, that week, that month, and lots don’t really know how to ask – so I’ve put pen to paper so to speak, and documented the sequence of events leading to my rupture and subsequently what happened that dark dreary November afternoon back in 2012 – a process that helped with coming to terms with what happened that day, and ultimately what might have been – if it wasn’t for the extremely quick reactions of my husband and parents, I would never have survived the massive subarachnoid haemorrhage I suffered that day.

Here is my story: We had friends staying, they live in a little place just outside Falkirk, really good friends, who we met while on holiday in Mexico maybe 10 or 11 years ago, and have always kept in touch. Lorraine is a fabulous cook and always likes to visit the local Chinese Supermarket when she’s up visiting us. So after spending a lovely weekend with our friends, they left about half past one on the Sunday afternoon, my husband, Stuart went with them, to direct them! You would think she would know how to get there after all her previous visits!

I was going in a nice hot bubble bath, to ease my broken body, I had suffered 3 broken ribs and 2 fractures in my right shoulder, caused by a fall the previous weekend! Yes, we now know that the fall was because of the SAH, but not what caused it.

After a visit with the fracture clinic the Wednesday after the fall, I really should have been referred for more tests, as people do not just FALL – I clearly did! The fracture specialist asked if I suffered from epilepsy, or if I’d had any seizures – no & no – he asked if I tripped over something, slip on something, got my heel caught, again the reply was no, I just fell, one minute I was crossing the road, I turned to see if any traffic was coming, the next thing I was lying face down in the middle of the road.  He let me go without further investigation, I don’t suppose they can refer everyone who “just” fell for a scan, although I obviously really wish they had in this case!

I can only describe what happened next “as an explosion in my head”. It was crippling, I couldn’t see, I could not move, it was like my neck was locked! I was home alone and in the bath, although I knew Stuart would be coming back any minute, I’m not really sure what happened next, but Stuart was in the bathroom helping me out the bath, he wrapped me in a towel and he put me to bed, typical man, he couldn’t find any of my 100 or so pair of pyjamas, so he dressed me in his!  The next thing I remember is my mum being there. Stuart, Mum and my step-dad – I know I have said this a million times, but their promptness that day saved my life!

Within minutes, paramedics were there and I was taken by ambulance, blue lights and sirens so I’m told, to Ninewells A&E, where I was admitted to Neurosurgery Intensive Care, barely conscious, this all happened within 40 minutes. I was aware that the three of them were there, I knew my Auntie and Uncle were there too, and as damaged as my brain was, it must have been working to some extent, as I was apparently more concerned about not spoiling my two cousins (who are like sisters to me) trip to New York!  Although I can’t really remember seeing her face, I have a hazy recollection of telling my Aunt NOT to tell them, to wait till they got home.

My husband has since said, it was my colour that initially concerned him most, I was grey, a horrible sickly colour of grey, he later likening it to the colour of the woman in “The Impossible”, the film about the 2004 Thailand Tsunami, he said that the scene where she is lying on a hospital bed, hooked up to all the machines, tubes everywhere and that colour – was ME, a bit of a flashback for him, we only went to see this film about a 6 weeks after I was discharged from hospital – It was all still very fresh.

When he found me in the bath, he thought I was in pain with the injuries I suffered from the fall the week before, or that the neck pain I’d been suffering on or off for the past year was back!  But no! It wasn’t quite as simple as that – unfortunately!  I wasn’t scared; I somehow knew that I’d be ok, probably my bloody determined stubborn temperament shining through, even if the looks on all off my family’s faces said otherwise. I knew that it was bad though, as the consultants had taken my family into the “relative’s room” … That happens on the telly, not in real life, not to my family!

My mum told me, weeks, or maybe months later, that when they were in the relatives room being told how gravely ill I was, that the next 24 – 48 hours would be critical, a woman in the room next to the one they were in, was screaming, my mum said that she was so grateful, that although she had been given some pretty horrific news, she wasn’t getting news that was going to make her scream like that.

I very vaguely remember being given and taking a tablet, pretty much the moment I was rushed through the doors of A&E, but I have zero recollection of an injection in my stomach, which was supposedly administered a very short time after I was admitted, the first of dozens of injections, I still have scars.  This injection was in a bid to prevent the haemorrhage causing a stroke, which with a bleed such as mine, would happen, it was only a matter of time, so the main challenge for the medical team was to stop it before it happened! So I suppose I can let them off for treating me like a pin cushion! This time!!!

One of the scans, an angiogram, was a very strange experience; they injected a dye through my veins, so it can show up more clearly where in my brain the bleed was, it felt like I’d “pee’d” myself, a totally bizarre crazy sensation! Thank god the medical team had pre-warned me about this sensation! After all the scans, I was taken to Neurology ICU. Ward 23B! Even in my hazy state, I could tell it was a hive of activity, I had my own nurse and I remember thinking “Sh*t, why do I need a nurse to myself, what’s wrong with me”. I remember the fancy ceiling in the elevators, while being wheeled in my bed from one scan to another and then to the ICU – little circles, really cool I thought, they might have been a figment of my imagination though!

Then some of my best buddies appeared, Denise and Angie, and I remember their terrified sobbing faces above my bed, and me asking them what was wrong! I remember asking them if I was dying. Fat lot of good they two are in a crisis, but I thank them both for being there all the same.

The next thing I remember its Monday and I’m in another Ambulance, more blue lights, more noisy sirens, and going at what felt like a hundred miles an hour, mad dash to Edinburgh!  This journey was mostly spent unconscious, as was the first week after my rupture. Hello Edinburgh’s Western General – Scotland’s Home of all things Neurosurgical!  My time here, 5 days in total is at best, sketchy! I’m reliably informed by my husband, that I was conscious, maybe 10 minutes a day, at a stretch 15, and believe it or not, out of the 8 critically ill patients in the neurology intensive care ward and despite myself being at deaths door, I was in the best “nick”!

I had 4 major advantages on my side:
1. I don’t smoke and never have
2. I wasn’t over-weight
3. I don’t suffer from high blood pressure
4. I’m relatively young (I was 37 the day my life changed)
These are the 4 major factors that contributed to saving my life.

I have virtually no recollection of that first Monday, through in Edinburgh, I know my husband, my mum, my step-dad, my mother-in-law and father-in-law were there, but only really because I’ve since been told they were there, I was unconscious most of that day! I was mostly unconscious for the first 5, 6, 7 ish days to be fair! My “Brain Surgery” was scheduled for the following day, my family were told that the surgeons would not operate on me on the Monday due to the trauma of the journey getting me through to Edinburgh.

My family were given 2 options:~
1. Go in through the artery running through my groin, or
2. Shave my head and go in through my skull!

What a decision, thank god they opted for number 1, I seriously could not imagine myself with a shaved head!!!!  My friend Lorraine said the first thing I said to her when they brought me round after surgery was “do I still have my hair”, her reply “Seriously Col, that is the least of your problems!” I off course have zero recollection of this!

So Tuesday, first thing, I was taken to theatre, and operated on for just over 5 hours! While my poor family waited for news of my surgery. My husband said that he had to leave the hospital that he couldn’t bear to be there while I was in theatre; he didn’t go far, just walked around, until he got the call to say I was in recovery! The procedure performed is called Endovascular coiling. My families patient wait was worth it, my surgery I’m told was a complete success, and 6 “Platinum” Coils later the haemorrhage was closed up! I don’t bleep when I go through airport security – something I’m mildly disappointed about!

As in all coiling procedures, my brain was accessed via the main artery running through my groin, using a microcatheter, they went through this vein, back & forth 6 times at least, to repair the damage caused by the haemorrhage. I cannot describe the pain, as it is completely indescribable! Like nothing I’ve ever felt before, and nothing I ever want to feel again!  On a scale of 1 to 10, it’s a good 40! I am not kidding! It was completely unbearable, and no amount of morphine can dull this kind of pain!  I have a very vague recollection of screaming and pleading “please please please please make it stop”, that went on for days, tears running down the side of my face I’m told. I was begging with anyone who would listen to make it stop – my uncle and my father-in-law couldn’t bear it, they couldn’t stay by my bed and watch me like that. I remember opening my eyes one day and seeing my Uncle Mike and his wife Elaine, and the looks of absolute helpless despair on their faces scared the living day lights out of me.

I hadn’t been on my feet since the Sunday lunchtime that my rupture happened, so by the Thursday night, I’d been bed bound and mostly unconscious for over 5 days, but with the assistance of the nursing team I managed to get up out of bed and I took two steps, what an achievement when you have been confined to a bed for 5 days, flat on your back, mostly unconscious! It was like learning to walk again, it was quite possibly the worst thing for me, as I was so disorientated and nauseated, very unsteady, I hated it, but then I’d pass out shortly afterwards – for several hours or so! I’d try again the next day! It was just something else to contend with, I felt that the end of this nightmare would never be in sight.

What felt like every half an hour the nurses, doctors, anybody and everybody, would ask me questions such as – what is your name, your date of birth, your address, where was I, what day it was! I must have been asked a 100 times a day what my name was – it was so infuriating! I think I told them my name was Jemima once – it is the bloody same as the last 500 times you’ve asked! Well that was clearly one of my more stroppy days! On the Friday, my family were informed that I would be transferred back to the Neuro ICU at Ninewells. Yah, I’m going home.  Not that I can fault the care I received at the Western General, it was second to none, truly amazing, very gifted caring personnel, and I can’t thank them enough, they certainly went above and beyond.

I was happy to be going back to Dundee, I knew it would ease the situation for my family, it was a long long journey to and fro each day. I was still pretty much mostly unconscious but what I remember of the journey back to Ninewells was horrific! Through Friday night teatime/weekend traffic, despite blue lights and siren, it taken near two hours!  I have no recollection of the rest of that day, despite being woken every two hours, to check my name hadn’t changed and to take a prescribed drug, also to prevent a stroke from happening, I had to take this medication every two hours for 21 days.

Then it was Saturday, I was still in Intensive Care, still in complete agony with crippling headaches, my family was there, my Auntie Margaret was there, she made me laugh, but I can’t remember what she said to make me laugh. And very sadly, she’ll never be able to tell me now, as she herself suffered something very similar in April 2013, she sadly did not survive it. 4 years on and I have finally accepted that I will never see her again. They say time helps grief; I’m not completely convinced on that score! I don’t know if we’ll ever get over losing her, she was a larger than life character.

That Saturday afternoon, I was giving my first lumber puncture – and I never felt a thing, they drained 35ml of the bleed from my brain – that is a lot of liquid floating about in places that it shouldn’t be! The liquid was in a little glass beaker, it was a cloudy liquid, not at all what I thought it would look like. On the following day I was moved in to a ward, thankfully – yippee – I must have been getting better.  It was snowing outside, lightly; it was the first I’d saw outside in over a week, my bed was positioned so I could see up the River Tay & over to Fife, with its light dusting of snow it was just beautiful. Christmas was fast approaching; everyone should have been getting excited. Unfortunately not for us, the road laid out in front of me was a very long gruelling one, and one that would take a considerable amount of time to walk, a road I am still walking.

More visitors appeared, friends & family, some people I didn’t expect to see and others I knew would come. It was so lovely to see everyone, exhausting, but lovely nonetheless.  On the second Monday I was transferred into my own private room, hey – party time. My mum and Aunt decorated my little side room with various Christmas Decorations, it made it slightly more festive.

There were lots of things happening all the time, multiple tests for this that and the next thing, physio, cognitive assessment, speech therapist sessions, as the aneurysm affected the speech and memory part of my brain – you name it, I was doing it, or attempting to do it, I fell in the bath while attempting to convince the Occupational Therapist I was ready to go HOME – it wasn’t me it was my slipper, it slipped – ha!!! It was gruelling – I won’t bore you with the details!

Following the first lumber puncture that Saturday, I had a second one on the Wednesday. Oh Jesus! I sure felt that one! I was still pretty much out of it, so the first one didn’t really register on the pain threshold! But the second one ………. help – 33ml was drained the second time, and there was still a lot of liquid left! Which is what causes the headaches, as the liquid aggravates the brain tissue, and until such time as this tissue has absorbed all the liquid, the headaches will remain! The second lumbar puncture was excruciating, bearing in mind that I was still totally out of it on all sorts of drugs including high dosages of morphine, although they did inform me that the needle they used the second time, was 3 times the size of the first one! I most certainly do not recommend it!

One night I had 19 visitors in my little room, had to hid them in the shower when the nurses came in on their rounds! My cousin joked that it was like a night in the local nightclub!!! She wasn’t far wrong!

We’d had several major things happen – and on the Friday, we had another setback! A massive one – my husband’s employers went bust! So in the space of 3 weeks, I had fractured my shoulder in 2 places and broke 3 ribs, had a brain aneurysm, nearly died, “lost” my brand new I-phone (it was stolen from my room, but thankfully I got it back), my husband had lost his job – hey life could only get better – yes? Well actually no! There was a catalogue of disasters one after the other!  In the 22 years we’d been together at that time, I can’t ever remember having such a “trying” time! But we’re made of strong stuff and have come out the other side even stronger!

After 15 days in hospital, I was discharged, after begging them to let me out, they wanted me for 21 days, nope, couldn’t do it, I felt I was going mad. I planned on going home and sleeping on the sofa or watching Christmas films, not running a marathon! So they relented, thankfully.The medical team at Ninewells were, well let’s say, almost all of them were amazing, with the odd couple of exceptions – they taken really good care of me, but I really really hope I never have to see any of them again, in the nicest possible way of course!!! I most certainly don’t want to ever go through that again!

With Christmas fast approaching no one was taking on, my husband was out of work for about 6 weeks in total, which to be honest, was a bit of a blessing for me. My mum, Auntie Cath and Auntie Margaret were amazing, they were here most days, but Stuart was here all the time and I 100% depended on him, I had zero energy to do anything, getting up & down the stairs was a complete nightmare! Thankfully, being little Ms Organised I had all my Christmas shopping done, something Stuart used to moan about, as I’d normally start it in the June, sometimes even earlier – but now he says I can start it in the January if I want, it was a blessing having it all done and my Auntie Margaret came and wrapped it all for me, she was another blessing in my life.

So, people have asked, were there any symptoms? Yes, is the quick answer, a little bit more in depth – just short of a year previously, I had woke during the night, unable to move, it was like my neck was locked, that’s really only the way I can describe it, that and it was absolute agony, I managed to rolled out of bed, and managed to swallow some pain-killers, I tried to go back to sleep, but failed, so I got up and went in a nice warm relaxing bath, thinking that would ease it, wrong!

Anyway, the pain lasted the whole day, without any let up, but by the Saturday it had eased, this happened several times throughout the year and I just put it down to the way I’d been sleeping and purchased new expensive pillows. I’d become quite sensitive to noise, my husband would pick me up from work, and it seemed like the car radio/stereo was blaring? It wasn’t, and I’d always have to turn it down. I’d had a couple of dizzy spells, but again I never really thought much about them. I was always in a hurry, doing everything at 100 miles an hour! Everything was put down to stress!

So there you have it – 4 and a half years on – I am still recovering – but I would say I’m about 90% on the road to full health, this might be as good as it gets for me, any future improvements will be slight. Not bad considering 4 and a half years ago it was touch and go. My main gripe is the fatigue and of course the headaches! I sound like a broken down record player – all you hear me say is “I’m knackered”, “I’m sleepy”, “I am really tired”! It is literally exhausting!

I have weaned myself off the powerful opiate OxyContin that I was on for 3 and a half years – I have been morphine free for 10 months now, the symptom withdrawal was quite subtle for me, I realise that is not always the case and I was very lucky with this.

I have had a few setbacks since my initial rupture, the sudden stiff neck & major headache came back, I immediately called my neuro nurse, who got me a consultation with Mr Lim, my Neuro Specialist! I went for an MRI & MRA the following day. My aneurysm is closed, but there is a flow behind it that necessarily shouldn’t be there and unfortunately there is a possibly that there is a further small bleed. Since this I have spent a further night in hospital, again complaining with headaches and neck pain, that time I had 5 lumbar punctures, I guess this is my life now!

Like all SAH survivors, I have to continue to go for scans for at least the first 5 years, probably longer in my case due to flow behind my aneurysm.  After the first 12 months I had “the biggie”! It was called a cerebral angiogram. They went back in through my groin, into my brain, and “schooshed” dye in it, while I was awake! It was quite possibly the most bizarre experience / sensation I have ever had!

I went back to work after 5 months, I started off doing 2 half days, building it up to 2 full days, then up to 4 full days, until I was back full time, my employers at the time were pretty amazing, completely 100% supportive, and accommodated me in any way they could, so I thank them, it was a pretty difficult and highly emotional time, they even employed my husband after the company he worked for went into administration!

I still maintain a pretty hectic social life, I have a large family and an even larger circle of friends, who mostly all get I have my limitations, all the while working a very stressful and demanding full-time job while still fitting in time to enjoy my travels – as often as possible – the world is a big place and I intend to see it, where my story will continue …

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One Comment Add yours

  1. Colleen, I’m sitting in bed reading your story with tears running down my face…tears firstly for you for what you’ve been through…but secondly for Stuart and your mum and rest of your family and friends who must have been so scared watching someone they love going through so much pain, not knowing if they would come through it or even if they would still be there come morning. I know through years of nursing it was usually the patient who was “braver” than the relatives looking on…I think that’s because the relatives feel so helpless, sometimes they would sit and pray, sometimes cry, often both together….just hoping that their loved one would pull through and they could all wake up from the horrible nightmare they were all having. You Colleen, Stuart and your family and friends have been in that nightmare….and thankfully woke up. Life is precious, every day we go about our dailly chores having a moan about being stuck in traffic, working or the weather, it’s only when you realise these things can be snatched from you in a blink of an eye that you are so grateful to be alive.
    You obviously enjoy every waking moment now Colleen…your pictures on Facebook prove that! And why not!! Let’s hope your nightmare is in the past and you travel round and round the world until you get dizzy or Stuart credit card crashes….whichever comes first…till then…have fun!!!😁👙👜🍹🌎🗻🗼🗽💳

    Liked by 1 person

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