ME AND MY NEUROLOGICAL ILLNESS
Just what is going on in his head: a patient’s journey after a severe traumatic brain injury James Piercy,1 Angelos G Kolias,2 Peter J Hutchinson2 1
Science Made Simple Ltd (East), Norwich, Norfolk, UK 2 Division of Neurosurgery, Addenbrooke’s Hospital & University of Cambridge, Cambridge, UK Correspondence to James Piercy, Science Made Simple Ltd (East), 303 Dereham Road, Norwich, Norfolk NR2 3TJ, UK; james@ sciencemadesimple.co.uk Published Online First 15 April 2014
To cite: Piercy J, Kolias AG, Hutchinson PJ. Pract Neurol 2014;14:198–200.
198
A BURST TYRE It was an ordinary day on 30 January 2011; I got with my ordinary family into my ordinary car and went for an ordinary drive along an ordinary road. At around midday, things became anything but ordinary. A burst tyre threw the car off the road into a tree and my world changed. My wife was killed and I suffered, what I later learned was called, a traumatic brain injury (TBI). With the next 3 weeks lost in posttraumatic amnesia, it has taken helpful staff and close reading of the many pages of notes to try to make sense of what happened to me. My good luck began very soon after. A police officer was, by chance, very close to the scene and able to keep my airway open. Within 30 min I was attended by a doctor carried by the East Anglian Air Ambulance. I had sustained a severe head injury with my Glasgow Coma Scale score established as 3–5. After removal from the wreck, I was anaesthetised to reduce the risk of secondary injury and flown to Addenbrooke’s Hospital approximately 60 miles away. With resuscitation ongoing, I was rushed for a full body CT and found to have a cracked rib, pneumothorax and bruising of my lungs. The CT head showed evidence of diffuse brain damage (figure 1).
THE NEUROINTENSIVE CARE UNIT Monitoring to prevent secondary injury was the priority. At 01:30 on 31 January 2011, the neurosurgical team inserted a triple bolt device looking for any signs of increasing brain swelling and hypoxia. My intracranial pressure (ICP) rose rapidly but was controlled well with firstline treatment.
My family needed information and support. Staff and Headway supporters did what they could. In these situations it is very difficult to give an accurate prognosis: the only advice given was not to assure anyone ‘it will be OK’. I was indeed in a grim condition. Entering my condition into the Corticosteroid Randomisation After Significant Head Injury (CRASH) model gives worrying predictions (figure 2).1 THE LONG JOURNEY TO RECOVERY With short-term memory still shaky but improving and a yearning to be closer to home I was transferred to Norwich. A battery of cognitive and psychological tests looked for functional deficits. Even then it struck me that there was no baseline for these tests. The Addenbrooke’s “Cognitive Examination is no doubt a valuable tool for assessing decline or improvement in function over time but how clever was I before? What was my verbal fluency like before? I read a great quote:
“You’ve seen one brain injury … you’ve seen one brain injury.” The therapists were not just assessing function they were assessing my function.” “I stayed in the rehab unit for just 10 days, four of these by choice to give me space after the funeral. My time was spent in light gardening, making interminable cups of tea and trying to spell ‘world’ backwards.” I was driven to get better, sometimes working myself too hard, falling asleep in libraries, graveyards and even standing up but I was determined to get back to the way I was before. Just 6 months after my accident I travelled, with help, from Norwich to Bristol. I stood on a stage and spoke to friends and colleagues
Piercy J, et al. Pract Neurol 2014;14:198–200. doi:10.1136/practneurol-2014-000830
ME AND MY NEUROLOGICAL ILLNESS
Figure 1 An emergency CT scan of head showed evidence of multifocal intraparenchymal injuries with small foci of haemorrhage in the right frontal lobe (A), left basal ganglia (B) and left occipital lobe (C). There were also multiple facial and skull base fractures with significant extracranial soft tissue swelling. A MR scan of the brain ( panel D) almost 1 week post injury showed several petechial haemorrhages in the right frontal region (short arrows) and in the corpus callosum (long arrow). These findings are consistent with diffuse axonal injury (D).
about my experience thus far. I’d given thanks to those who helped me, answered many questions people were too afraid to ask and most importantly proved to myself that I could still work. I could still do the job that I loved. I believe this was hugely important in my recovery. I have since had support from the Wellcome Trust to refine the talk and deliver it at venues across the UK. The project has led me to Cardiff University Brain Research Imaging Centre, to meet the air ambulance team and I shared a stage with leading consultants in Acquired Brain Injury to shed light on the ‘hidden disability’. I have presented at a number of venues including the British Science Festival, where I was joined on stage by leading experts in neurosurgery and rehabilitation. I have also been involved—as
Figure 2 Prediction of outcome. Even though prognostic calculators—such as the CRASH calculator—are not used in clinical practice for individual patients, the individual predicted scores for James show that he had a relatively low risk of mortality but a substantial risk of an unfavourable outcome at 6 months.
Piercy J, et al. Pract Neurol 2014;14:198–200. doi:10.1136/practneurol-2014-000830
a patient representative—in a new study for patients with severe TBI.2 It is now 3 years since that awful day. I still suffer the effects of fatigue, struggle with my speech on occasion and deal daily with the frustrations of being slower than I used to be. The greatest challenge to me remains not in the inability to function but in living with the minor deficits that remain. I have met many Acquired Brain Injury sufferers with recovery at varying stages, many much worse off than me, but a continuing theme is frustration. Knowing that you cannot function in quite the way you did before can be hugely upsetting and doctors would do well to recognise this and to offer reassurance where possible, and encourage a positive outlook. “See how far you have come, not how far there is still to go.” As a speech therapist put it too me “You are good, you just need to lower your standards a bit”. THE MEDICAL PERSPECTIVE James suffered a severe TBI as determined by the low admission Glasgow Coma Scale score (
Just what is going on in his head: a patient’s journey after a severe traumatic brain injury James Piercy,1 Angelos G Kolias,2 Peter J Hutchinson2 1
Science Made Simple Ltd (East), Norwich, Norfolk, UK 2 Division of Neurosurgery, Addenbrooke’s Hospital & University of Cambridge, Cambridge, UK Correspondence to James Piercy, Science Made Simple Ltd (East), 303 Dereham Road, Norwich, Norfolk NR2 3TJ, UK; james@ sciencemadesimple.co.uk Published Online First 15 April 2014
To cite: Piercy J, Kolias AG, Hutchinson PJ. Pract Neurol 2014;14:198–200.
198
A BURST TYRE It was an ordinary day on 30 January 2011; I got with my ordinary family into my ordinary car and went for an ordinary drive along an ordinary road. At around midday, things became anything but ordinary. A burst tyre threw the car off the road into a tree and my world changed. My wife was killed and I suffered, what I later learned was called, a traumatic brain injury (TBI). With the next 3 weeks lost in posttraumatic amnesia, it has taken helpful staff and close reading of the many pages of notes to try to make sense of what happened to me. My good luck began very soon after. A police officer was, by chance, very close to the scene and able to keep my airway open. Within 30 min I was attended by a doctor carried by the East Anglian Air Ambulance. I had sustained a severe head injury with my Glasgow Coma Scale score established as 3–5. After removal from the wreck, I was anaesthetised to reduce the risk of secondary injury and flown to Addenbrooke’s Hospital approximately 60 miles away. With resuscitation ongoing, I was rushed for a full body CT and found to have a cracked rib, pneumothorax and bruising of my lungs. The CT head showed evidence of diffuse brain damage (figure 1).
THE NEUROINTENSIVE CARE UNIT Monitoring to prevent secondary injury was the priority. At 01:30 on 31 January 2011, the neurosurgical team inserted a triple bolt device looking for any signs of increasing brain swelling and hypoxia. My intracranial pressure (ICP) rose rapidly but was controlled well with firstline treatment.
My family needed information and support. Staff and Headway supporters did what they could. In these situations it is very difficult to give an accurate prognosis: the only advice given was not to assure anyone ‘it will be OK’. I was indeed in a grim condition. Entering my condition into the Corticosteroid Randomisation After Significant Head Injury (CRASH) model gives worrying predictions (figure 2).1 THE LONG JOURNEY TO RECOVERY With short-term memory still shaky but improving and a yearning to be closer to home I was transferred to Norwich. A battery of cognitive and psychological tests looked for functional deficits. Even then it struck me that there was no baseline for these tests. The Addenbrooke’s “Cognitive Examination is no doubt a valuable tool for assessing decline or improvement in function over time but how clever was I before? What was my verbal fluency like before? I read a great quote:
“You’ve seen one brain injury … you’ve seen one brain injury.” The therapists were not just assessing function they were assessing my function.” “I stayed in the rehab unit for just 10 days, four of these by choice to give me space after the funeral. My time was spent in light gardening, making interminable cups of tea and trying to spell ‘world’ backwards.” I was driven to get better, sometimes working myself too hard, falling asleep in libraries, graveyards and even standing up but I was determined to get back to the way I was before. Just 6 months after my accident I travelled, with help, from Norwich to Bristol. I stood on a stage and spoke to friends and colleagues
Piercy J, et al. Pract Neurol 2014;14:198–200. doi:10.1136/practneurol-2014-000830
ME AND MY NEUROLOGICAL ILLNESS
Figure 1 An emergency CT scan of head showed evidence of multifocal intraparenchymal injuries with small foci of haemorrhage in the right frontal lobe (A), left basal ganglia (B) and left occipital lobe (C). There were also multiple facial and skull base fractures with significant extracranial soft tissue swelling. A MR scan of the brain ( panel D) almost 1 week post injury showed several petechial haemorrhages in the right frontal region (short arrows) and in the corpus callosum (long arrow). These findings are consistent with diffuse axonal injury (D).
about my experience thus far. I’d given thanks to those who helped me, answered many questions people were too afraid to ask and most importantly proved to myself that I could still work. I could still do the job that I loved. I believe this was hugely important in my recovery. I have since had support from the Wellcome Trust to refine the talk and deliver it at venues across the UK. The project has led me to Cardiff University Brain Research Imaging Centre, to meet the air ambulance team and I shared a stage with leading consultants in Acquired Brain Injury to shed light on the ‘hidden disability’. I have presented at a number of venues including the British Science Festival, where I was joined on stage by leading experts in neurosurgery and rehabilitation. I have also been involved—as
Figure 2 Prediction of outcome. Even though prognostic calculators—such as the CRASH calculator—are not used in clinical practice for individual patients, the individual predicted scores for James show that he had a relatively low risk of mortality but a substantial risk of an unfavourable outcome at 6 months.
Piercy J, et al. Pract Neurol 2014;14:198–200. doi:10.1136/practneurol-2014-000830
a patient representative—in a new study for patients with severe TBI.2 It is now 3 years since that awful day. I still suffer the effects of fatigue, struggle with my speech on occasion and deal daily with the frustrations of being slower than I used to be. The greatest challenge to me remains not in the inability to function but in living with the minor deficits that remain. I have met many Acquired Brain Injury sufferers with recovery at varying stages, many much worse off than me, but a continuing theme is frustration. Knowing that you cannot function in quite the way you did before can be hugely upsetting and doctors would do well to recognise this and to offer reassurance where possible, and encourage a positive outlook. “See how far you have come, not how far there is still to go.” As a speech therapist put it too me “You are good, you just need to lower your standards a bit”. THE MEDICAL PERSPECTIVE James suffered a severe TBI as determined by the low admission Glasgow Coma Scale score (
![[Severe traumatic head injury].](/assets/img/hold.png)
