Ben Hay's story: My aneurysm

My story begins in October 2009. My life was much the same as any twenty-six year old. I had just started a new job teaching photography, my own photographic practice was beginning to take shape and I felt in good health and high spirits. I have always suffered from headaches, but I had never been concerned by their frequency or prolonged nature.

Something significant


One evening in early October I was walking past a mirror in my house and glanced at my reflection, stopped and had a closer look. You look at yourself a lot (well, I do!) day to day, but on that evening I noticed one of my pupils was significantly larger than the other. Part of me thought nothing of it and in all honesty the thought of a David Bowie-like eye was quite appealing, but a smaller part of me knew this was something significant.

I called NHS Direct, who sent me to my local Accident and Emergency. By the time I arrived my pupils were reacting the same, and after an examination I was told my eyes were fine. Before I left a doctor took me to one side and urged me to see a GP and book a proper examination.

Aneurysm


A week later I was seeing a specialist, and after another examination she too was baffled. My pupils and eyes seemed in perfect condition, yet one was reacting differently to the other, but only some of the time. Before sending me home she advised a CT scan to be on the safe side and managed to sandwich me in between two other patients. At this point the whole ordeal had been a bit of a laugh, but all of a sudden it had become quite serious.

That evening the phone rang and a technician told me that they had found an aneurysm. Firstly, I had absolutely no idea what an aneurysm was, but after a brief discussion with the technician the seriousness of the situation hit. I was told my CT scans were being sent to another London hospital for a neurosurgeon to see, but that I should prepare for the possibility of surgery that evening. Phone calls went back and forth between various hospitals and myself all evening and it was decided I would be reviewed on Monday after the weekend.

Consultation


On Monday a surgeon called and informed me that I did indeed have a 8mm carotid termination aneurysm (a balloon-like swelling that results from a weakness in the wall of one of the blood vessels supplying blood to the brain), but it was smaller than initially thought, seemed to be stable and could therefore be treated as an incidental finding. I was told I would be seen for a consultation in a month to discuss the surgery.

During the consultation I met both surgeons that perform the different operations. The amount of support I received was second to none, but there still remain difficult choices that no amount of advice can rectify, which in my case was choosing between coiling (where small metal coils are inserted into the aneurysm through the arteries that run from the groin to the brain, to prevent blood flowing into the aneurysm and therefore reduce the risk of a bleed) and clipping (where a cut is made in the scalp, burr holes are drilled into the skull, and a piece of bone is cut out like a trap-door to reveal the brain beneath; the surgeon then permanently closes the connection between the blood vessel and the aneurysm using a small plastic or titanium clip).

Both options were explored and explained, and so were the risks of ‘non-treatment’. The surgeons explained the likelihood of a rupture (subarachnoid haemorrhage) (0.2-0.3%), but also explained the problems with these figures. My aneurysm was smaller, therefore considered more volatile; I had slightly raised blood pressure and the main clinical study conducted in the US was with patients considerably older than myself and often in different circumstances.

They also concluded that the symptoms I had been exhibiting could not be connected to the aneurysm, so it was simply a lucky find. It was finally explained that in their opinion, neither operation had in my case any more benefits short term, but in the long term clipping could perhaps be more suitable.

Living with a time bomb: the psychological impact


Its often hard to explain to someone what its like to live with an aneurysm, but the most obvious analogy is to imagine living with a time bomb strapped to your head but you can’t see the countdown timer.

For me, the psychological impact of the aneurysm far outweighed the physical symptoms. My mind began to play cruel tricks on me. I would read literature on the internet about the symptoms of a rupture, then in the evening would convince myself I was exhibiting them.

Physically I felt fine, but psychologically I felt paranoid, distraught and isolated. My life very quickly fell apart. Your brain is such a vital part of your body, it defines everything you are so when it goes wrong it's devastating to how you perceive yourself and others around you.

I had always been a confident outgoing person, but increasingly felt that my illness was overtaking my life. Leaving the house was always difficult. I never felt safe unless I knew how far a hospital was, the route and whether or not they had a neurosurgical team.

Fear of ‘the headache’ simply took over my life. I could see the irrational behaviour I was displaying, I could recognise and understand the statistics and likelihood of having a bleed, but frustratingly could do nothing to remedy my behaviour. I used to fantasize often that it had been a mistake, that someone else's scans had been mixed up with mine.

Relationships finally crumbled under the pressure. By Christmas my life was unrecognisable from what I had been four months earlier.

Taking control


Being afraid for any extended period of time is gruelling, and finally around January I began to take control of my life again. One day I think I simply decided that I physically and mentally could not be afraid any more and if I wanted to have some form of a life I had to face up to the reality of the situation.

Between December and January I thought long and hard about which treatment to undergo, and decided coiling was the better option for me. I found the idea of a less invasive treatment more appealing, firstly because of the often quicker recovery period and secondly because this meant little to no scarring.

Coiling the aneurysm


On 19th April 2010 I had the procedure. The last thing I can remember is having a pre-med, and noticing how tanned one of the nurses was. I awoke and was asked whether or not I had a headache, which I didn't. I spent 48 hours in a high dependency unit and was then transferred to a normal ward.

In total I spent seven days in hospital. That was now almost three months ago. The operation was a success, except for a single coil left hanging into the artery, which meant an extended course of aspirin to avoid the possibility of blood clotting on the coil, flaking off and causing a stroke.

Post-aneurysm life


I have no physical scars, but I think the mental ordeal will take some time to get over. Sometimes I get angry over the lack of public awareness of aneurysm, the unfairness of the situation and the seven months of my life I lost.

Most of the time though I feel grateful. I think about the luck in finding it to begin with. I think about how lucky I am to have recovered with almost no physical impairments, to be able to go back to work, to be able to do what I like, when I like.

For all the turmoil that it caused, there was a 'silver lining'. I don’t believe that its always possible to stop your life dead in its tracks and reflect extensively on what you have done so far.

Hours before my operation I sat on a hospital bed and decided who and what I would bring into my post-aneurysm life. I could choose how to begin my life again, and that is a very rare opportunity, and one I will always treasure.

Find out more: related links


If you have any questions about brain aneurysms, or any other neurological topic, call the Brain and Spine Helpline on 0808 808 1000 or email helpline@brainandspine.org.uk.

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