Martin's journey: Overcoming intracranial subdural empyema

Intracranial Subdural Empyema is a rare and life-threatening infection of the brain between the dura mater (top layer of tissues) and the arachnoid mater (middle layer). It tends to spread rapidly. The Streptococcus A bacteria develop and transmits from nearby structures, most commonly nasal sinuses and middle ear. Due to the vague symptoms, it can be diagnosed too late.

In May 2022, with very little warning – terrible sinusitis and unbearable headaches. Then the first seizure and collapse at home, my wife, Lorraine found me immediately. The paramedics were only 20 minutes, then to Luton & Dunstable ICU. My body had swollen, my facial left side had dropped, and my left arm paralysed. My condition worsened, with more seizures.

I was transferred to UCLH National Hospital of Neurology in London. Lorraine took a call late at night, saying, “….if we do not operate immediately, he is unlikely to see it through to the morning….”. The assembled team of 6 were under the Professor of Neurology and Consultant Neurosurgeon. How tough that phone call must have been for Lorraine, my incredible Wife.

Craniotomy was performed and the pus flushed out. The Strep A bacteria had covered the whole right side of the brain, swollen the brain and damaged the right frontal lobe. My Wife and the NHS saved my life.

After surgery, I recall very little in the first two weeks and much of the same in the second two weeks. I was conscious with my eyes open, but talking nonsense and unaware of my left side, in body and mind space. With help, the left side body functions returned, slowly but surely. After a further 6 months of hard work, The Professor described my recovery as “stupendous” - never been called that before!

In my case, the right frontal lobe was damaged, which controls executive functions and cognitive behaviour. I have become obsessed with learning about the brain and functions. Two and half years down the line, I have been focusing upon behaviour, emotions and reactions, under the guidance of neuro specialists. The Professor warned it will take at least three years before we fully understanding the long term and what it may look like.

Living with the aftermath is tough and a very lonely place. I struggle with huge swings in sensitivity, crying, anger, perspective, consequence, detail, social pressure, sudden and loud noise, busy environments and fatigue.

I am scared, I am not the husband or person I used to be. I am often overwhelmed and cannot cope. The most important lesson I have learned is the value in spotting and understanding triggers – and using coping mechanisms to manage them.

Despite the fear, I try to be very positive and inquisitive. Onwards and upwards!

To anyone who has experienced this rare condition, you are not alone. Of all our varied the stories and experiences that I have read and seen, with common feelings that we share, means none of us are alone. We may be different, but we are super normal!

My very best.

Martin