Experience 3

My name is Ros. I'm pleased to be able to tell you about my sub-arachnoid haemorrhage and subsequent brain surgeries.

Pleased, of course, because I survived. Pleased, too, because I survived with no adverse consequences or deficit. And pleased because, now, there are more ways to read about, or to meet and listen to the experiences of fellow sufferers. I hope my story will give a little heart to those of you who have had similar events and to know that there can definitely be a worthwhile and fulfilling life after an SAH.

On 24 March 1998, during a routine early-morning gym visit before work, I had the odd sensation that my head was filling up. Although I felt weak and very unstable, I made my way back to the changing rooms where I passed out. If this sort of thing has to happen, a fitness centre is probably one of the best places to be. Within minutes, a qualified first aider had checked my blood pressure (alarmingly low) and had arranged for me to get to my GP soonest. As my symptoms were not typical, diagnosis was difficult. I didn't feel I'd been hit round the head with a cricket bat, which I understand is typical. I had made a reasonably quick recovery from the faint; an ECG showed no abnormalities. It wasn't surprising that the GP sent me home to rest, with instructions to call if there was a repeat incident or worsening condition. I think everyone put it down to stress!

Within hours, a severe headache did develop, and I couldn't move without feeling nauseous and dizzy. Another visit to the GP and this time, within hours, I was admitted to the local hospital where a CT scan was performed. No abnormalities were detected. My husband, Peter, in close attendance all the time, saw the screen and swears that no brain was detected, either! A lumbar puncture revealed the leakage of blood into the spine.

I was instructed to lie completely still and, after spending the night in this way (agony for me, a lifetime fidget), I was taken, extremely carefully by ambulance, to the Wessex Neurological Centre at Southampton, where they made the diagnosis of sub-arachnoid haemorrhage. A cerebral angiography confirmed two aneurysms but, unfortunately, during the procedure I had a large rebleed and lost consciousness for some hours. Once again, I made a good recovery and on 28 March was well enough to have a craniotomy, and the ruptured aneurysm was clipped.

I said I'd rather not see my face, thank you. Even in my befuddled state, it didn't take much to imagine what I looked like, particularly when I was told I had an attractive arc of staples, ear to ear.. and no front hair at all. Visitors passed the bed, not recognising me through my Panda-face disguise and, at times, I confess I didn't recognise them. The painkillers were having a peculiar effect on my cognitive abilities. However, the nurses never caught me out with the daily "who's the prime minister" interrogation! "Disraeli," I said. Nobody laughed.

I'm told I made a remarkably good recovery from what was described as a major neurosurgical insult and, after about two weeks, I was discharged, but with the grim knowledge that I would be back in 12 weeks. The second, unruptured, aneurysm had to be clipped via the same procedure.

What joy.

How quickly we came to depend on the professional strength of the specialists in the centre of excellence that is the Southampton Neurological Unit! And how we missed them as soon as we got home. After such an attack on the system, the recovery process seems dramatic ... peculiar vision, creaking sensations in the head; did they insert a steel plate? It felt like it. Lopsided eyebrows, uneven ears – or so I thought. Why didn't the excellent surgeon do a facelift while he was at it? I could certainly have done with it! My nails and skin began to look very odd. Would my hair ever grow back? And where was my energy? I used to have loads. My GP was very supportive and reassuring, but even he must have felt impatient with the endless stream of questions about these weird symptoms.

Unfortunately, I didn't respond well to the anti-convulsants; they caused nausea, drowsiness and lethargy. A change of drug produced the even more alarming result of making my tongue and ears swell. My skin looked like a pink duvet and it itched dreadfully. There were disturbances in the liver function. The drugs were stopped.  All too soon, when I had begun to feel so much better, the twelve weeks were up and it was time for the second surgery. I asked the GP, more than once, if it was really necessary for me to have the operation. And, anyway, my hair had grown back, albeit a different colour and curly! The doctor kindly and patiently explained the consequences of risking a rupture of the second aneurysm. I had a ticking time bomb in my head. Could I expect to be so lucky again?

Unlike the last admission, this time I knew what was to happen and was extremely nervous about the surgery. The operation was the day after admission, so thankfully not long to wait and no time to do a runner! I really should have had more faith. After another very long operation, the second aneurysm was successfully clipped. The surgeon said he thought there might have been the beginnings of a leak from this aneurysm. How lucky I had been, again.

But .. on the day after the surgery, I suffered a grand mal convulsion, followed by a brief left-sided paralysis. My aversion to anti-convulsants dealt the cruellest blow. After the fit, I remember saying when I came round "well, that's goodbye to my driving licence, then." And it was, for almost eighteen months. The one thing I had dreaded most of all.

The fit delayed my stay in hospital, but not for very long. After only seven days I was discharged and, once again, placed in the excellent care of my husband. However, we did feel isolated at times, and were desperate to talk with someone else who had experienced this kind of surgery.

The second time around, the reactions were greater, although not so surprising. I couldn't believe how weak I felt, and how quickly I tired doing the most unchallenging jobs. This time, it seemed taste and smell were affected, but intermittently. And ... I was so bored. Not being able to drive was, I think, the worst punishment, even though I completely understood all of the reasons. We live in a rural area, with very little public transport. And I didn't really trust my strength in public places. What if I collapsed? Because of my growing insecurity, dependency on others had become a significant issue, unnecessarily.

During the recuperation period after the second surgery, I think I experienced the very worst of times. The physical repercussions of the surgery were to be expected, but I fell into the mindset that more drama was to come. It was explained to me, in very simple terms, that the worst that could happen in my head had happened. The brain had undergone very close scrutiny, a thorough MOT. I was in the clear. All that was needed was for me to regain my strength, and gradually return to normal.

I felt incarcerated. Unable to drive, to be creative or even to sustain energy for the most menial tasks. And unable to compare notes with a fellow sufferer, to be properly understood. It wasn't long before anxiety and depression took over. I felt I didn't have the stamina needed to return to my demanding job, and would I still have a job when I could return? After all, it would be about 18 months, in all, before I could. I had a short series of sessions with a psychiatrist for "psychological support", but I sincerely felt that all I needed was to be active, useful. I wasn't equipped to meet my own needs.

And, now, there was to be a further reversal to my neurological condition, because I was having severe headaches, with nausea - again. Back to the Neurological Centre and, this time, the CT scan showed evidence of encephalomalacia (I had to look that up!). If the condition didn't improve, it may be necessary to insert a shunt to relieve the pressure inside the brain.

I was very, very low. I began to think of suicide.

I have a caring and loving husband and family. They were all endlessly tolerant of my uncharacteristic whingeing, self-pity and self-obsession They had realised, long before I did, that I simply needed to be active. I wasn't helping myself by believing I was incapable of anything worthwhile. I was afraid of being alone in public, so wouldn't even consider using buses and trains.

Finally, Peter snapped. He'd had enough and, essentially, he blackmailed me into using the local bus service to do some shopping, or to meet friends. One uneventful trip later, with no collapses, headaches or humiliations, I was converted to public transport. I had not expected liberation.

Things began to look up!

I hadn't, by any means, made a full return to health BH (Before Haemorrhage). It was still obvious that it would a long time before I could go back to my old job and, after much debate, it was decided I could take early retirement.

I was then 55 years old. The retirement decision turned another corner for me, and some months later, joy of joys, the DVLA re-issued my driving licence. My mental and physical health improved rapidly. Depression completely lifted. I involved myself in local charity work and village activities.

I began to look for other, more demanding, work and it dawned on me that this could be the time to pick up a career for which I had trained in youth. I would return to the acting profession. One of the most demanding, punishing and unpredictable occupations, next to politics! For the last five years, I have been working hard at getting jobs in this vastly overcrowded profession. I've had a fair degree of success, too, thanks to the support of Peter.

The brain haemorrhage and its effect on me, and my family, taught many valuable lessons. One was to recognise that this dramatic event could be seen as the most treasured gift of all – that is, recognising the need to live life for the moment, for all that it is worth. So many people have told me how they took stock of their lives after such a dramatic intervention. I certainly re-evaluated my life in terms of fulfilment and in relation to others dear to me. I believe we are all the better for it.

I do realise how very fortunate I have been not to have some deficit after such an awful illness. Many have far worse experiences then mine. I hope I'm still able to empathise with the plight of those people in the process of recovery from any form of brain injury, and wish them the patience needed before they can return to some semblance of a normal life.

Ros Liddiard
29 July 2004