Portrait: Dan
In 2011 I was young (35), very fit, healthy, happy and planning to get married the following year in June 2012. In January 2012, I went into King’s College Hospital for a foramen magnum decompression to treat Chiari malformation (brain surgery No. 1). I was told it would involve 1-2 weeks in the hospital and another 2 weeks at home to recover. I thought, “Easy!” Little did I know that this is when my nightmare would begin.
I experienced complications after surgery
I had a bad reaction post-surgery and became very ill. I was told I had hydrocephalus (a condition where there is fluid in the brain) and needed a brain shunt inserted into my brain and a draining tube to be ‘mined’ down the inside of my body to my stomach (brain surgery No. 2).
I have never been more scared in my life.
I was certain something would go wrong....and it did! After the surgery, I was in more pain than I ever thought would be possible. The tube meant that every movement and every breath hurt in a way that I find hard to describe. I spent another couple of weeks in a hospital bed, vomiting every day.
I was sent home but my health deteriorated
After 2 weeks, I was sent home, and things went really bad. The back of my head had swollen up like half a football. My partner, Elaine, and my parents called the hospital. I was sent back up to King’s College Hospital in an ambulance and told that “the shunt had failed”. I needed emergency surgery to have it removed (brain surgery No. 3). I was then told that I had chemical meningitis.
They told my family that I would be in hospital for some time; the risks were very high. Another surgery was now needed (brain surgery No. 4) to fit an external brain shunt. For the next couple of months, I was so ill. I couldn’t stay awake for more than an hour, couldn’t eat, couldn’t get out of bed and I couldn’t see that I would ever recover. I spent my entire time lying in a bed, being given IV drugs every 4 hours and with a tube sticking out of my brain to drain my excess CSF (cerebrospinal fluid).
My family and friends helped me through this incredibly tough time
I have thousands of stories I could share about this long stint in the hospital. All the highs and lows, the people, the care, fear, loneliness, sadness, happiness: I experienced it all. I had lots of memorable visits from friends and family and my best mate, who is a very talented musician, wrote and recorded a song for me to listen to.
After a couple of months, they told me the chemical meningitis had cleared enough for them to remove the external shunt (brain surgery No. 5). Remember at the beginning I said we were planning on getting married in June 2012? Well, I was determined I would make it even though time was getting close. I needed another surgery (brain surgery No. 6) to have an internal shunt fitted to the other side of my brain. I experienced the same crippling pain as before but this time I was much weaker. I had lost almost 4 stone in weight and hadn’t moved out of bed for months. This surgery really knocked me down.
I was determined to get better and make it to our wedding
Slowly but surely and with the determination to marry Elaine, I pushed myself to eat a little more and to get out of bed. On the first day, I managed 5 steps. On the second day, I walked to the end of the ward. On the third day, I managed the stairs (It felt like I’d climbed Everest!) I was soon ready to go home with just a couple of weeks left before our wedding.
Fast forward 11 years: June 2023
Elaine and I are now proud parents to an amazing 2-year-old little boy called Owen.
On the weekend of June 24, 2023, I took my son to the local village fete and then to a friend’s house. I felt tired but what parent of a 2-year-old doesn't?
It was like I just blinked and woke up 3 days later in a hospital bed, with my head shaved, a head dressing, unable to move my left leg and unable to focus my vision (brain surgery No. 7).
I have no memory from that weekend. On Monday, I didn't go to work as I had a headache and stayed in bed all day. On Tuesday afternoon, my wife came home as I ‘didn't feel right'. She called 111 and I was sent to King’s for emergency surgery as my shunt had blocked.
When I woke up, I was very disorientated and in a very dark place mentally. I was sure I was not going to survive. I tried to text my best mates to ask them to look after Elaine and Owen, but I couldn't see to use my phone. I got very frustrated and upset with this until the next batch of medication sent me back off to sleep.
When I woke, my lack of vision was my first concern. I had a bleed on the brain during the surgery to remove the failed shunt and replace it with another one. This caused a condition called fourth nerve palsy. I can see fine out of each eye individually but when using both eyes, I have very nauseating double vision.
As for my mobility, movement in my left leg came back albeit weaker, but I was moved to a Neuro rehab hospital in Orpington.
I was finally discharged at the end of July, feeling weak, useless and vulnerable. After 2 days of being home, on my son's birthday, I was taken back into the hospital as I had caught an infection.
Finding light in the dark days
I came home and have been recovering since. I was offered some physio from the NHS which really helped.
I had to surrender my driving license for 6 months. This, along with the vision and mobility issues, has led to some very dark days. Thankfully my son, wife, family, and friends have kept me positive and helped to push me on.
I am still nowhere near where I need to be recovery-wise, and I am told it will be "months and years rather than weeks and months". I find this hard to take. I will, however, keep pushing myself every day. My next goal is to be able to run around after my son without falling over.
Reflecting on what happened to me
I feel the trauma has aged me. To this day I have had no support or explanation of what really happened or why. Being a bloke, I don’t feel I need to talk about it, but I do believe that I can genuinely help others by listening to them and explaining how my journey has affected me.