My problems first manifested themselves on a hot summer day in 1960. I was 10 years old and enjoying a game of cricket when suddenly I experienced a strange tingling down my left side rather like pins and needles. Initially I thought nothing of it but when it returned numerous times over the next few weeks and more strongly than before I decided to talk to my mum and dad. Before I knew it I was in front of my GP who sent me to a consultant and following numerous tests I was informed I had a mild form of focal epilepsy which was apparently caused by some kind of birthmark on my brain but the condition was never given a medical name.
The epilepsy was mainly controlled but in 2009 I suffered a severe bout of labyrinthitis and subsequently had an MRI scan to establish the cause of my continuing dizziness. This showed an abnormality in my brain, a result which didn't surprise me as it was obviously the birthmark referred to above, only this time it had a name. I was informed I had an arteriovenous malformation (AVM), a condition I had never heard of before but it had something to do with the lack of a capillary bed linking the arteries and veins in my brain resulting in a tangled mess.
My doctor explained it had probably been with me since birth but now needed treatment;he likened it to a ticking time bomb because the chances of a bleed were high, a diagnosis soon confirmed by a neuro surgeon.Treatment options weren't good-gamma knife, embolisation or removal. Size and location were crucial so following an angiogram I was referred to Sheffield hospital where it was decided that gamma knife was the best way forward.
The main advantage of this procedure was its non invasive nature but the main disadvantage was it took at least 2 years before the AVM could be destroyed. However the consultant was encouraging and thought there was an 80% chance of success which was good enough for me and so in July 2010 I spent couple of days in Sheffield where the gamma knife treatment was performed. This wasn't a pleasant experience although it was more uncomfortable than painful even if they did screw a Darth Vader type mask to my head.
2010 was always going to be a big year for me because I was also preparing for retirement after working for 39 years and as a few of us were leaving at the same time a joint leaving party was arranged for 17th September-a date I will always remember because everything changed, not only were my working days over but I was also about to begin a new life as a disabled person. How ironic that on my last working day my 'luck' finally ran out as that dangerous bomb exploded in my brain.
At the end of the evening I went to the toilet as I was feeling a bit strange although I don't remember any headache. The next thing I experienced was a vague,trance-like state where the world and people moved in slow motion. I had suffered a sub arachnoid haemorrhage(SAH), and my wife P found me in a pool of vomit on the toilet floor. This dream world was my introduction to the critical care ward in the local city hospital.Here was a stroke (excuse the pun) of luck because this particular hospital was the regional centre for brain injuries. Nevertheless I was close to death for several days, drifting in and out of consciousness.
The first bleed was bad enough but then I suffered a second a few days later, both from aneurysms in the AVM. After this second bleed I needed a drain to relieve the pressure, following the onset of hydrocephalus and something called a mass effect and shift.The surgeons decided the best way to try to stop the bleeding was by gluing the aneurysms. In the meantime P had that dreaded discussion with the consultant who told her she should prepare for the worst.
I had suffered complications including klebsiella pneumonia and at first I was unable to regain consciousness without serious epileptic seizures. I therefore had to be sedated a number of times until these ceased. The first voice I really remember was a nurse repeatedly asking me if I knew my name,where I was and the name of the prime minister. If I was asked once I was asked a thousand times.
To cut a long story short I somehow survived thanks to the incredible skill of the surgeons,the dedication of the nursing staff and the support of P,friends and family.I remember very little about those first days and initially couldn't speak. However when my voice returned and P told me we couldn't go on our proposed trip to Australia to see our children and grandchildren,I apparently replied in typical fashion 'who says?' My delirium continued and because I couldn't feel my arms or legs I assumed I had lost them and I asked P where we were going to store them as our house was only small!
I hadn't lost my limbs but neither had I survived unscathed. Sometime in October following my stay in the critical care and high dependency wards I was moved to a local rehabilitation hospital nearer home. Here the long,painful physical and psychological recovery process began.
Physically I was in a bad way. I could hardly move because of severe left sided weakness and my brain was confused and slow. My speech was affected,I couldn't lift my left arm or hand and my left leg was swollen and very painful. Strangely it also felt numb. Initially I needed a hoist to move at all but gradually some movement returned and eventually ,following intensive physiotherapy,I learned how to move to the bedside chair.
From there I managed a few painfully slow steps holding on to a corridor rail and a quad stick.I also suffered severe constipation which was incredibly debilitating. When I eventually managed to relieve myself I swore I would invent a more comfortable bed pan and name it after the nurse who unblocked me.My generosity knows no bounds! Exhaustion was overwhelming although sleep was always fitful and disturbed. In fact I haven't slept completely through the night since the haemorrhage.
Apart from the discomfort in my leg I cannot explain this but perhaps my brain is just traumatised and suspicious of sleep.The bright hospital lights disturbed me and I began to understand what it meant to be 'blinded by the light.'
The psychological effects of brain damage are just as difficult to deal with as the physical and of course the two are inextricably linked as you try to come to terms with what has happened.My plans and dreams had been instantly shattered and I was trying to understand what it all meant. Everyone will deal with this differently but for me the most important thing was the support from P and the family. I also soon discovered that looking back and thinking about what might have been was really destructive . Too much of that and depression lurked.Instead it was vital to look forward at what was possible in spite of the severe limitations. How glib that sounds-it's so easy to write and so incredibly difficult to achieve. Nevertheless I will leave it in for now although I may feel completely differently tomorrow!
Some light crept into this gloom when in October two of our children flew over from Australia and one of our home based daughter's gave birth to a baby boy. It all helped take my troubled mind off things and focus on others for a change.
If the care in the rehab hospital was excellent the food was grim and I often couldn't eat but I was kept going because P regularly brought in home cooked meals. Without her I simply would not have made it.She visited me everyday, often twice, in spite of the awful snow that year and always with a smile and words of encouragement. If you think critical illness is difficult for the patient then spare a thought for the carers and families. In so many ways life is much harder for them.
During December I made my first home visit and home had changed following recommendations from the occupational therapist. Grab rails at the front door, new stair lift,new bathroom with no bath but a walk in shower and seat and more grab rails.This was home for a disabled person-me!
I was finally discharged on 23 December 2010.P had spent ages preparing our house with welcome home banners, balloons etc-it was such a warm welcome home.Incredibly our other home based daughter gave birth on Christmas Day to a premature baby girl and our lives were in a whirl once more.
In February 2011 there were setbacks and 2 further hospital visits. Firstly I was rushed in following chest pains which turned out to be a pulmonary embolism(PE) and a few weeks later I suffered a deep vein thrombosis (DVT) in my left leg which further restricted my mobility. My leg was massive and I was in excruciating pain. I had to learn to walk all over again and the first steps were unbearable. The clots were difficult to treat at first as it was felt too dangerous to use anti coagulant drugs following my haemorrhage. Instead I had a filter fitted in my abdomen to stop any further clots moving to the heart and lungs. I had to let my leg heal itself and it's still healing.In April 2011 my consultant neuro surgeon decided I could take warfarin as long as my INR level was kept low. I hope this will stave off further clots.
There is some good news following this litany of disasters because in August 2012, 2 years after the Gamma knife treatment, I had an MRI scan which could find no trace of the AVM and I therefore underwent an angiogram in September which confirmed the AVM and associated aneurysms had indeed been obliterated .The Gamma knife treatment had done its job but was it the cure that almost killed me? after all I hadn't bled for 61 years and within 2 months of the procedure I suffered the SAH-I suppose I will never know.
We have had a tough two and a half years but there should no longer be a risk of haemorrhaging and the epilepsy is completely under control once more. I continue to have severe mobility problems and left sided weakness but I have reapplied for my driving licence and the veil is slowly lifting from my brain as it begins to function more normally. I couldn't have written this 6 months ago . Somehow,miraculously I am still alive and although I am not as fit as that cricket loving 10 year old I will continue to rebuild my life with the help of P and the family.