It has taken a while to write but I wanted to post my story which started back in 2002:
I recall having had problems months earlier whereby I experienced sudden spells of dizziness and headaches which seemed to last for weeks. It was like having a permanent hangover. It was quite disconcerting at the times, but I put it down to an inner ear thing or perhaps stress and I didn’t think any more about it. I had been in my new job as an OT for three months now but I was still learning the ropes. One week before the SAH, I was walking along the seafront with my partner. I had felt overwhelmingly tired and was irritable with it. I really couldn’t imagine how short a walk like this could be so draining. The day before the haemorrhage I was assisting my manager with interviews for support staff at the hospital where I work. As it was my first time interviewing I was quite nervous and I had a thumping headache throughout. I felt dreadful but I just imagined that it would pass. I was so pleased when we finished and all I could think of now to go on holiday to Dartmoor for the week and I had only three days to go.
It was June 12th 2002 - In the background England was playing in the World Cup while I was eating my breakfast. I was catching a bus today as my partner was unable to give me a lift. Usually we travelled together by car. We worked across two hospital sites on the opposite side of town. I was quite miserable at the prospect of going on the bus. I was feeling exhausted and headachy. It felt as if the bus was taking forever and weaved around every back street before reaching my destination. As soon as I got off the bus I lit up that final cigarette to accompany me on my short walk to work. On arriving, I managed to catch a glimpse of the England football game on the patients TV and it wasn’t looking good for them but I couldn’t stick around to offer encouraging noises as I was due in a ward round meeting at 9 o’clock.
At the ward round there where roughly 10 people sitting in a circle; tightly jammed into a small dark room with only enough oxygen for a couple of golden retrievers. There was a Psychiatrist, Specialist Registrar, junior doctors, nurses and a depressed man with his family sat by his side. It was my turn to contribute to the discussion from an Occupational Therapist's point of view. I uttered a few words and then it happened. A powerful whooshing sensation made my head spin so hard I moaned with the pain and seconds later that’s when the lights when out. I woke up minutes later on the floor in the middle of the circle – I could not open my eyes as the light was painful, my head hurt so badly. The room was empty now. I felt sick, shaky, stunned! Then I felt pins and needles down one side of my body and the lights went out again. Apparently when the lights went out I was having seizures. On waking and moving onto my side I started to be sick and a man in a green uniform asked me my name but I couldn’t tell him – I was in shock. He reassured me in the ambulance that I would be home soon and it looked like I had had a panic attack. I thought to myself, Yes, I’m sure he was right but I knew myself that I was also having a stroke.
I was wheeled into A&E on a trolley and was parked in the corridor. I understand that I did not see anybody for ages. I recall yelling for help and what I thought happened was that they gave me an injection of lorazepam which they did but it was for the sole purpose to shut me up. I recall trying to see but everything was too bright and fuzzy. 6 hours later, I understand that a doctor from my work telephoned A and E and visited to try to emphasize the need for me to have a head scan. I was still on a trolley in the corridor waiting to see someone. Although he was a mental health doctor he also had a neurosurgical background and was concerned I was not being scanned. I don’t recall having the scan but it showed a ruptured brain aneurysm. I was still on this trolley when I heard a familiar voice which was my partner, but I did not care much and drifted in and out. My partner had noticed that I had been given a saline drip to keep me hydrated but I did not receive this until 24 hours later. My partner went home for a few hours sleep while we waited for me to be transferred to the neuro unit 30miles away. I was still on a trolley but in a cubicle now. My partner had returned and it was about 36 hours since the subarachnoid haemorrhage and she noticed that my saline drip had not been switched on. My partner said that my personality had changed, I was confused and paranoid. I was said to be dis-inhibited and was over familiarising myself with people saying I worked with them.
I am very grateful to A & E for their help in assessing me but I was said to be seriously dehydrated and allowed to walk to the loo which could have led to a further bleed but thankfully it did not. Looking back on it now, the whole A&E experience was fraught but thankfully I was not sent home with a diagnosis of a panic attack.
36 hours later I was on another winding journey but this time not to home but to Hurstwood Park. An angiogram showed a ruptured middle cerebral artery aneurysm which required a craniotomy and clip. I had the op four days later and all went well but I became hypoxic and was diagnosed with multiple pulmonary embolisms. I was given warfarin to treat this. My parents had flown back from Greece at this point cutting there holiday short to be with us. The two weeks that followed felt quite muddled and I struggled to physically and mentally get going, however, with the nurses and physio support I was up and pottering around the ward. The headache and nausea continued for a while and I had been left with weakness and pain in my left side. What can I say? Hurstwood Park staff were amazing and very patient with me. I was discharged back to the original hospital for one night and I then to my home. This hospital stay was not the West Country holiday I had in mind.
My mental and physical body had slowed down to the point where I was asleep more than I was awake during the day. This continued for sometime. I also was left with central hemi body pain which is still present to this day. I had fears around this and fears of collapsing and my partner helped enable me to build confidence and strength going out and about. We borrowed a wheelchair as I could not go far. I had been told 6 weeks post op that the surgeon had difficulty clipping the whole aneurysm which left me feeling rather out of control not knowing what would happen next. A few months later, I had a further CT scan as my pain and headaches continued. This test showed no problems and 8 months post op, a further angiogram was clear. I was referred to the neuropsychologist due to these anxieties and she reassured me that I was ready to embark on a phased return to work. I returned to work 6months post op and I was still having problems concentrating and absorbing new information. My partner had serious health problems too and just at this time was diagnosed with ME and had to stop work. My phased return was a very stressful and anxious time for both of us but I managed to increase my hours up to four days a week over a period of a year. My partner was unable to return to her work. The pair of us, both in our early 30’s meant to be in our prime, living life to the full but instead, frail, pained and fatigued. I decided to try some counselling to help with my anxiety and to help me adjust to everything that had happened. I later saw a pain specialist for central pain but medication was unhelpful. I then saw a pain psychologist and physio who really helped in my recovery. This was over a period between 2004/05.
In 2008, I saw a neuropsychologist for cognitive testing as I have been having difficulties with work based tasks, including writing reports. The assessment indicated some difficulties with information processing, semantic fluency, concept definition, abstract reasoning and consolidating new information. I was able to advise work on what I needed to help me carry out my duties. I needed to consider my case-load management, assertiveness skills and practical stuff like a quiet place to write my reports. Finding a quiet space in the hospital always proves to be a challenge and sometimes I have to work from my home.
Its now 2010 and the pain and cognitive problems are very much apart of me now and I cope as well as I can with this. The anxiety has lessened and I have gained a few extra pounds. My partner and I have been on a roller coaster ride for last 8 years. We are holding on tight together and not letting go.
Apologies for my lengthy narrative - I also have problems with editing. Most of the medical information I talked about I gathered from my medical notes kept with my GP. My partner and parents filled in the rest.
I just want to say what a great website, thank you, and thanks to Hurtswood Park.
Best wishes to you all here.