Providing practical and emotional
support for all people affected
by brain haemorrhage

      Brenda's Story

       

      Monday 23 October 2006 was a very sad day for us.  We took our much loved 16 year old Burmese cat, Roger to the vets early that morning for what was a routine dental operation; whilst he was under anaesthetic, the vet saw that he had a very large tumour down the back of his throat.  She rang us right away and advised that the kindest thing would be not to wake him up.


      We were absolutely devastated but little did we know that later on that same day – in the afternoon, my life was about to change very dramatically.


      I was 58 years old at the time, happily married with 2 grown up children and with a good job as a manager in the Civil Service where I’d worked for the past 21 years.  I was looking forward to retiring when I reached 60 in 2008, when we would be able to spend more time visiting our daughter who lives down South;  she was  expecting our first grandchild in 6 months time so we had lots to look forward to.


      I worked 4 days a week and so I was usually at home on Mondays;  as usual Alex, our daughter rang for her daily chat around 4 o’clock. I was sitting talking to her on the phone when I got the strangest sensation in my head, and down the back of my neck.  I can’t really explain why – but I knew immediately that something was very wrong and said to her ‘something’s happening in my head!’ – she thought I was joking but my husband could see I was very frightened and took the phone, telling my daughter we’d ring her back.


      It was then I experienced a terrible crushing pain inside my head (the classic ‘worse headache I’ve ever experienced’!) – it felt as though someone was tightening a band around my brain, inside my skull.  I thought I was about to faint and my husband said I was pale and felt clammy but I held onto his hand and in some way that seemed to help.  I don’t know how long this lasted for – probably just a few minutes but it was very frightening;  my cousin had died 2 months earlier from a massive brain haemorrhage so the first thought that went through my head was that it was happening to me to too!


      My husband called an ambulance, which arrived in minutes and I was taken to Aintree hospital A&E. I sat in a wheelchair there for what seemed a very long time and was eventually seen by a young female doctor.  She did all the usual tests then asked if I was stressed in any way;  obviously, I told her that we were very upset over our pussycat being put down that morning;  I also told her that my cousin had died only 2 months earlier from a brain haemorrhage, after experiencing very similar symptoms to me. Her mother [my aunt] had also died of the same thing in the 1960’s so obviously, this was very much on our minds but she didn’t seem to attach much significance to it. 


      I was given pain killers, but as I was by now vomiting all the time,  I couldn’t keep them down and ended up being given them intravenously.  By about 11pm, the headache was a little better although I still felt very strange and my neck felt odd;  however, the doctor said I could go home – she thought that I’d just had a very bad migraine, due mainly to stress;  I was given painkillers, and told to see my GP or come back to A&E if the headache got worse again.


      Over the next few days the headache was still there and I couldn’t eat or keep anything down – including the painkillers – I was just being sick constantly.  On the Wednesday, I went to see my GP and told him what had happened - the headache was now unbearable and I was beginning to feel exhausted.


      He prescribed some tablets which he said would stop the vomiting and enable me to keep the painkillers down;  I also mentioned my concern about a brain haemorrhage and told him about my cousin and my aunt;  He looked at me and said “ I don’t think you’ve had a brain haemorrhage – I’m sure the hospital wouldn’t have sent you home if there was any chance of that” – famous last words!



      The tablets he’d given me didn’t make the slightest difference and I spent most of the Thursday and Friday in bed as the throbbing headache continued.  Looking back now, I really can’t believe that we didn’t go straight back to A&E, but I kept telling myself that it was just a really bad migraine  (I had suffered from migraines for a short period a few years back) and that it would eventually go if I just rested. 



      However, by the Saturday it was just too much and my husband said he was taking me back to A&E.  To be honest, that thought of spending hours waiting to be seen just filled me with dread and that was exactly what happened – because my blood pressure and ECG readings were normal, I just had to wait like everyone else.  We sat there for over 2 hours and I can remember asking my husband to stand behind me and support the weight of my head as the pain was now unbearable.


      I was eventually seen by a doctor who after listening to my story and doing all the usual checks, put me on intravenous pain killers again.  This time, they had no affect at all and after a few hours the headache was no better so I was told I was being kept in overnight in the Medical Surveillance Unit.  My husband later told me that there was absolutely no way he had any intention of taking me home anyway, until someone  found out what was wrong with me!


      The following day I was just the same so they did a CT scan of my head.  I later found out that it did show blood in an area of my brain but for some reason they still they didn’t think I’d had a haemorrhage!  The following day (Monday – exactly one week after the original ‘headache’) I was given a lumbar puncture – it took 3 doctors before they managed to get some spinal fluid and when they did – it was pink in colour which indicated that I’d had a bleed.  I was then told that they were transferring me to the Walton Centre and that they now thought that it could possibly be a brain haemorrhage; I was to lie completely flat (quite difficult when you’re vomiting all the time) and was started on the Nimodipine tablets right away.


      Once I was in the Walton Centre, I saw goodness knows how many different doctors, all of them asking me to tell them exactly what had happened – to be honest, I got really fed up telling ‘My Story’!  I was still being sick all the time and by then had become dehydrated and so was on a drip.  


      Around Tuesday lunch time I was told I was to have an angiogram, so that they could see exactly what was happening inside my brain.  I can remember the radiologist explaining the risks attached to this procedure – then saying ‘But I don’t think you’ve had a haemorrhage!’;  then afterwards rushing out and saying that I HAD had one and would need an operation right away - there was a slot in theatre in an hours time.  Just at that moment my husband arrived – he’d already been told the news.  I suppose it was better that it all happened so quickly as we didn’t have too much time to panic. 


      About 4 hours later I came round and was told the operation had gone well – the ruptured aneurysm had been sealed using the ‘coiling’ procedure.  I think I was still in shock but spent the next four days in hospital recovering;  however, because of the haemorrhage, I was still suffering from severe headaches - these lasted for many months afterwards.


      It took a long time to get my confidence back – and I know most people are the same following a haemorrhage;  I thought every little twinge in my head was the start of another bleed!! Eventually, I was able to go out again on my own and began to realise just how lucky I was to have survived.  I went for my follow-up appointment at the Walton Centre at the end of February 2007 and was told that everything had gone well and that ‘I should go and get on with the rest of my life’.  An appointment was made for me to have an MRI scan and then I would see the doctor again in a few months time.


      I had the MRI scan in April and at the beginning of May, I was contacted by the hospital and told that there was a problem – they weren’t really sure what was happening but the aneurysm was showing up on the MRI scan and seemed to have filled up with blood again.  Eventually, after seeing various doctors at the Walton Centre, I was told that I would need another operation but they were not sure if they would be able to ‘coil’ the aneurysm again as it had a wide neck and  there was a possibility that the coils would slip and block the artery in the brain which would be dangerous.  However – they would try.  I had the second coiling operation in June 2007 and when I came round I was devastated to be told by the consultant that they’d been unable to carry out the procedure - it would have been too risky;  he was passing me over to his colleague (a consultant neurosurgeon) as the only other option was open-head surgery to clip the aneurysm.


      I had my 3rd operation – a craniotomy – on 23rd July 2007.  The operation lasted for 10 hours – the consultant told my husband and daughter afterwards, that ‘I’d made him work hard for his money!’;  but it had been successful – he’d managed to clip the aneurysm.  I can’t really remember much about that time other than feeling quite ill and weak for a long time afterwards. 


      Over the following months I slowly began to feel better and gain confidence;  Gradually my strength came back and I began to realise how very lucky I’d been once again - I don’t have any obvious defecits  from the haemorrhage or the surgery, other than my sense of taste and smell aren’t what they used to be.  Also, damage has been caused to the optic nerve in my left eye – but after undergoing tests to check that this wasn’t deteriorating, I was told that there was nothing to worry about.  I can’t say that I have the same levels of confidence that I had before – I didn’t feel that I could cope with the the pressures of my job in the Civil Service and so I never returned to work afterwards, but remained on sick-leave and retired officially in March 2008.  


      I am now involved in the Brain Haemorrhage Support Group – which offers help and support to people who have suffered a brain haemorrhage once they are discharged from hospital;  Most of the committee members have either suffered a haemorrhage themselves or have been carers, so we can all appreciate what it’s like for newly discharged patients – I think most people come out of hospital in shock – not sure exactly what’s happened to them.  You’re told you’ve suffered a brain haemorrhage and very slowly, the seriousness of what you’ve been through sinks in – and with that, the realisation that you could very easily have died.


      Hopefully, coming along to the support group meetings and talking to other people who are getting on with their lives after a brain haemorrhage will help boost people’s confidence levels.  I’ve met some lovely people through my involvement with the group and made some good friends too.  There is life after a haemorrhage (although it might be a little different than before) - and we’re all proof of that!!