10th anniversary of my brain haemorrhage

On this day, around this time, one decade ago, I had a brain haemorrhage.

Every year, it is important to me to take the opportunity to thank all those who helped saved my life and who have helped and supported me. To my sister, Tiffany, who was with me and raised the alarm, to my ex-neighbour Jane, who called the ambulance, to my Mum, Pauline, and Dad, Gary, for their everlasting love and support, and to all my friends and family too.  Thanks needs to go to the Warwickshire and Northamptonshire Air Ambulance (WNAA) and the NHS at John Radcliffe Hospital.

Below is the chronology of the event and treatments since. There are a few photos, some which I have never shared before, and a couple of videos:

Ten years ago, at the age of 15, I was about to get ready to start the Friday of my half term from school. I was relaxed, and had really enjoyed the break from school but had lots of homework and some coursework to do.  It was a normal day. I remember waving goodbye to my Mum, and I’d gone upstairs about to get ready. A headache came on. It wasn’t like a conventional headache, or even a migraine, as it was a pulsing and instantly painful one. As a youngster, I had had migraines and the sequence of the pain, vomiting and then resting was expected. I therefore lay down to the toilet; I’d already gone to get my pillow.  I had alerted my 12 year old sister, Tiffany.  She called my Mum and explained that by this stage I was in great pain and had started sweating. Thinking it was just a severe headache, she got off the phone and called my Dad at work, telling him to go home as I wasn’t well. My sister called my Mum again just a few minutes later as I had suddenly stopped responding. I drifted into unconsciousness; I remember for a few seconds hearing my sister speaking but I couldn’t respond. My Mum rushed home.

Time, I imagine, stopped for my sister, and needing help she called my neighbour, Jane. She instantly came round. It worked out that Jane, my Dad and my Mum all arrived roughly about the same time. Jane, called for an ambulance. A fast response vehicle pulled up soon after and they checked me over. It couldn’t be established what was wrong; one eye was dilated. A normal ambulance came and took me to my Kettering General Hospital. I was scanned and a huge clot on my brain was discovered.

The air ambulance was called and thankfully it was available.  It flew me from Kettering General to John Radcliffe Hospital, in Oxford, the neuro-surgery specialist in only 23 minutes. The journey between the hospitals by land ambulance would have taken well over an hour – and that’s not factoring in traffic.

Once at John Radcliffe Hospital, they operated on me. They cut the muscle at the back of my head, pulled it open, and cut a circle in the skull. After removing it, they cleared the blood as well as the some of the abnormal vessels, the arteriovenous malformation, which had caused it. The haemorrhage consequently meant I had had a stroke.

A few days later, on November 5th, I was taken for my first attempt to surgically glue some of these abnormal vessels. This procedure meant going in the artery in my groin, and feeding a tube up to my head and into the brain and then squirting glue just in the right place.

Over the next few years I had this embolisation treatment a few more times as well as angiograms to check on the progress in between.

Here’s a photo of an angiogram taking place on 21st August 2008:

I had my most recent angiogram on 24th January 2017.

Here’s a video showing what the angiograms entail:

These subsequent embolisations just couldn’t fully remove the AVM (arteriovenous malformation). The surgeons managed to glue as much as they could but it was just too tricky to continue.  An alternative treatment was proposed.  On February 14th 2010, I had a procedure called stereotactic radiosurgery at Royal Hallamshire Hospital in Sheffield. The procedure itself was completely painless, but the preparation for it was not. There are a series of small laser beams which culminate at a very specific focussed point. The individual beams are harmless and so they travel through the skull and brain matter without having much of an effect. At this specific point however, the power is strong and somehow it spurs on growth over time to hopefully close up the vessels. In order to be completely accurate, my head was not allowed to move at all, and the only way to ensure this was the case, was to drill a frame into my head and lock me to the table. It wasn’t pretty.

Getting ready to go down:

I had the frame screwed in my head:

And here’s a photo of me locked into the machine:

Here’s the video of my stereotactic radiosurgery journey:

I have been back to hospital numerous times since the stereotactic radiosurgery for angiograms and consultations.

The hospital is eager for me to do something about it.  Initially, in consultation with a surgeon, he obviously, sung the praises of surgery.  The idea was that open head brain surgery would allow access to the vessels to cut them all out.  I cannot currently fathom the idea.  In the event of an emergency, or facing inevitable death, brain surgery would be an option.  But I am wondering how I could choose to go into theatre as a healthy individual and possibly come out not so healthy.  The risks are too high.  There is the risk of death, as what comes with any surgery, but there is also the risk that a healthy part of the brain may be damaged.  I love typing, talking, and using my legs (mainly to cycle).  The area of the brain where the AVM is located is the co-ordination part.

A later consultation floated the idea of having further embolisation treatment.  Stereotactic Radiosurgery was not effective, and the AVM has in fact since increased in capacity due to it recruiting other vessels.  There are risks associated with embolisation.  The abnormal vessels in my head are messy.  In order to get at them, must involve a very steady hand.  Without the guarantee that they can all be removed, I am not comfortable with proceeding along this route just yet.

For now, I will leave it as it is.  But no doubt, I will shortly have to make my mind up to take some kind of action.  Leaving it as it is has the risk of having another brain haemorrhage at a cumulatively of 2%.

Ahhh, decisions, decisions.  For now, I will enjoy life and make the most of it.  Remember, life can be taken away in the blink of an eye.  Grasp it and go.  Carpe diem.

Samuel x

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