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

      Jackie's Story

      Hi my name is Jackie and this is my story...........

      I was 51 years old when I started to suffer with bad headaches.  I ignored them for a while and put them down to the normal headaches that we can all suffer from time to time, however I took heed and paid a visit to my GP when my vision became blurry. As luck would have it, my normal GP was on holiday and a locum doctor was taking his place. I say this because I don’t have a lot of confidence in my regular GP. She looked in my eyes and decided from that  she would send me to a neurologist.

      Within weeks I found myself at the Royal Liverpool at Dr Endvolsens clinic. He did some basic motor examinations and decided that all seemed well but he wanted to do a CT scan of my brain at the Walton Centre just to rule out certain things.  I remember at this point for the first time in all of this I felt uneasy and a little worried, but Dr Endvolsen tried his best to put my mind at rest. I had my scan and was told I would get the results in two or three weeks, it was December so I had plenty to do with Christmas being just around the corner and I put my fears on the back burner.

      Christmas came and went and myself, partner Tony and my 3 children all enjoyed it. we travelled down to Surrey immediately after Christmas to see Tony’s family. We travelled back home on the 30th December 2008 feeling refreshed, happy and totally unaware of what lay ahead for me. We had only been home for about an hour when I received a phone call from Dr Endvolsen to say they had found an abnormality on my brain scans.  I remember feeling sick and very very scared at this point, he went on to describe this abnormality as little pockets in the artery. I knew exactly what he meant as my husband had had a massive brain haemorrhage.   I won’t go into detail but he lost his fight. So I’m sure you can understand my fears.

      On the 31st December 2008 I found myself at the Walton Centre again for a more detailed MRI scan.  It was New Year’s Eve and here I was beginning a very long scary journey that I couldn’t comprehend but I was soon to learn.

      Just a few days later I got a call from the Walton Centre asking me if I could pack a bag and get there as soon as possible.  This sent me into sheer panic.   I felt so scared for myself but more for my partner and my kids. On arrival at the hospital I was taken to a ward and given a lumbar puncture.  All the nurses where wonderful, but nobody could ease my mind of the dreadful feelings I had.  

      Eventually I saw Mr Javapour and Mr Nahser, the specialist Neurovascular surgeon. They both explained to me that I had a huge aneurysm on the left side of my brain and that they wanted to perform a trial occlusion this is a procedure where they  go in through your  groin and up into your brain and they can investigate inside your brain using a small balloon. They needed to do this so they could find the best way to deal with my particular aneurysm.  

      What I was truly worried about was that I needed to be awake and fully aware of what they were doing.  

      I underwent this procedure but Mr Nahser could not conclude his investigations as he found not one aneurysm but six!!!!!!!  

      He decided it was far too dangerous to proceed further. I was taken back onto the ward and left to think about things for a few hours till Mr Nahser came to see me with his intentions, he had decided to occlude three of my aneurysms but leave the other three till a later date.

      I awaited surgery, and I might add at this very difficult time in my life I was strongly advised to pack up smoking, which consequently I actually managed to do and remain a non smoker to this day, although I’m not quite sure how I managed it.  Maybe sheer terror made me think about the consequences of smoking 40 a day for 37 years.

      My surgery day arrived.  Myself and my family were advised that surgery would probably last 3 hours and I would spend 24 hrs in High Dependency Unit, however,  the surgery lasted 9 hours.  I actually spent 14 days in High Dependency, it was the most scary time in my life,  I was on neuro drenilin given through IV.  This was to help with the blood flow inside my brain and to help with the carotid artery that Dr Nahser had occluded, but every time they tried to wean me off the drug my speech would go and my face would drop like a stroke victim.  It was like a dream and a very bad one at that, but all of this felt like it wasn’t happening to me.  I just felt like a zombie.  I couldn’t even think for myself and I didn’t care if I lived or died at this point.   I felt a terrible emptiness inside and my body felt like it wasn’t mine.

      Eventually they succeeded and got me off the adrenaline and everything was uphill from there.  Dr Nahser has told me since that I actually scared him a bit, as things were a lot more complex than he first anticipated, so much so that he doesn’t feel it worth the risk of a second operation to occlude the remaining three aneurysms.

      So I have to live with them, I’m afraid, well at least for now, until maybe science has evolved and there is a less risky way to operate on me. This in itself terrifies me because as we all know an aneurysm can burst at any time with no warning and the consequences can be quite devastating.

      Once home from hospital a different journey was about to start… `The Recovery`. This was to be very difficult and sometimes hard to understand.  I suffered personality changes, strong emotions, lack of confidence, and uncontrollable crying.

      Nobody could have prepared me for the black moods I had, but with the support of Tony and Leanne, my daughter, and the Brain Haemorrhage Support Group, I am getting there, and after 14 months I’m starting to feel like ME again. I will always be an outpatient of The Walton Centre  and I am very grateful to have regular brain scans to keep check on my remaining 3 aneurysms.

      I am now 15 months on, and things have certainly got easier.  I now have a little more of my fight back and am feeling stronger.  I know I still have three untreated aneurysms and this can be difficult to cope with at times, but I try hard to stay positive and get on with my life as best I can.

      I have my good days, but I sure do have my bad days.

      It’s been a long road and I had to see a neuropsychologist as I was diagnosed with post-traumatic stress, but I’m here to tell my story and for that I will always be in debt to Dr Nahser and the wonderful Staff at the Walton Centre, and of course my wonderful partner and my caring children.  I’m still recovering and I now know how much of a long tough journey it is.

      I hope my story can help and maybe inspire others who may find themselves in a similar situation.

      Jackie Leyland.