Life After Brain Trauma

Neuro Surgery

The following text is the injury diagnosis by my neurosurgeon after operating on my brain, which you can see in the adjacent image:

Right pneumocranium (air inside skull)
Fracture right parieto-temporal skull
Large 1.88 x 8.5cm right temporal extradural haematoma (blood clot)
7mm left temporal subdural haematoma
1cm contusion (bruise) right midbrain
Small traumatic subarachnoid haemorrhage right precentral sulcus
Multiple small contusions: Both frontal lobes & left temporal lobe
Base of skull fracture: right greater wing of sphenoid, extending into left middle cranial fossa & both superior orbital walls
Scalp laceration

Air Ambulance

I unwittingly tracked my helicopter journey from Nantwich to the Royal Stoke NHS hospital in Stoke-on-Trent via the GPS tracking app I used on my mobile phone when cycling. This link takes you to an air ambulance charity article which displays the flight path and duration.

During

I needed assistance to walk safely, not due to any physical impairment, it was simply because my brain couldn't send messages to my limbs to do what I wanted them to. I was fed intraveneously and had been doubly incontinent while in critical care. I made the Lego rabbit in the adjacent photo while at the Haywood - it was intended for seven year olds, whereas I was aged forty-six. I was exhausted from making it, we still have it to remember some of the challenges we faced. Following my discharge from the Haywood Hospital, my NHS rehabilitation consultant sent a discharge diagnosis letter to my GP, it can be viewed by following this link. I lost 42lbs (19kg) in weight during the nine weeks following my TBI.

A Story of Hope

My Journey from Traumatic Brain Injury (TBI) through Recovery

Before

After

Road Traffic Collision

My name is David, I was a forty-five year old cyclist on a leisure ride from my home in Newcastle-under-Lyme, Staffordshire (England) on 31st July, 2015. While near to Nantwich in Cheshire, I was struck at 40MPH by a car whose driver didn't see me. In the following police incident photos, my head made the impression on the car's windscreen and my bicycle is underneath the front grill. I lay comatose in the carriageway, foaming at the mouth and bleeding from my right ear. Following this link takes you to a page containing police information about the collision, which was reported in the local newspaper - see link.

The surgeon needed to saw away part of my skull, starting at the upper right side of my forehead, to facilitate requisite drilling to relieve the clotting of blood in my brain. The pressure was monitored using an Intra-Cranial Pressure (ICP) bolt, this link takes you to a page about ICP. After surgery the detached piece of skull was re-attached and secured with four nylon screws; three are under my hair - one is still (2020) partially visible on my forehead.

Black Friday

My life partner, Ruth, kept a diary of my first nine weeks in hospital. Ruth recorded 7th August (a week after my TBI) as "Black Friday", when the expectation was that I wouldn't make it through the night following complications. This link takes you to the transcribed diary, furthermore, this link shows my neurosurgeon's own assessment of black Friday.

Glasgow Coma Scale (GCS)
"GCS, or Glasgow Coma Scale, is a measure of conscious level. You get a mark from 1–4 for eye response, 1–5 for verbal response and 1–6 for motor response, giving you a maximum total score of 15 if completely normal and a lowest possible score of 3 if you’re dead." The preceding paragraph (the last statement was sarcastic humour) was taken from a diary / novel by a former NHS doctor - see link. Between 31st July and 15th August 2015 I was assessed as GCS 3. I've logged my various GCS values on a page reached via this link - there's also general information about GCS.

Locked-In Syndrome
My natural coma was followed by an induced coma, it was twenty-eight days before I emerged from a comatose state. The following words are taken from email dialogue I had with Ruth in January 2018 regarding this time period in the critical care unit. "People's general perception is that you just woke up and started asking about simple matters such as sports is very different from mine. I went through a week when you were awake and looking at me but not talking or responding - and the nurses talking to me about the potential of 'locked-in' syndrome. Then, when they finally had you 'sitting up' it was slumped in a special chair staring at the floor. When finally you stuttered some words, the first thing I can remember you saying to myself and Chris was "it's been terrible..." Follow this link for clinical information about the syndrome. Furthermore, this link takes you to a BBC documentary about a person with locked-in syndrome - it has a happy ending.

Cognitive Function and Memory Evaluation

A neuro-psychologist assessed me in May 2016 (ten months after my TBI), producing a report which can be viewed in PDF format by following this link. I have noted below some observations which I personally found fascinating:

The learning disabilities range extends from the 2nd percentile to the 9th percentile.
David achieved a mental arithmetic evaluation indicating 99.9th percentile.
David’s scores for both immediate and delayed recall regarding his day-to-day memory ability were at the 5th percentile.

The observations were accurate: my short-term memory is dreadful, but I never lost my very good maths skills. This link takes you to a PDF of the maths exam paper I took at university in 1993; I graduated with a first class honours degree in mechanical engineering.

Things I've Learned about TBI

You're unlikely to recover as you were prior to a TBI - accept yourself. In the words of a friend I made during my recovery: "Things are still normal, it's simply a new normal".
Stop apologising to people who care about you. People around you recognise and accept your limitations; in the simplest of terms - they get it!
You don't need to keep explaining how your forgetfulness is the reason you've not done something. After the tenth time, your friend / partner / family doesn't need to be told again!
You'll probably experience many worries regarding your future, don't be afraid to share your anxieties. This link takes you to a page listing some anxieties I noted prior to a meeting with my rehabilitation consultant.
If doctors discuss coping strategies with you for your condition or ailment, listen to them intently and be prepared to give them a try.
Make notes of everything you plan to do - either on paper or your mobile phone. Don't ignore items which seem unimportant, or convince yourself that you won’t forget - you WILL! This link takes you to a page of my thoughts regarding short-term memory challenges.
Sleep is as important to well-being and general health as diet or exercise, ignoring tiredness is counterproductive.
Set realistic (low) goals and expectations; baby steps is the sensible approach. It is expected to want to get better rapidly, that is probably unrealistic. This link opens a discharge note I wrote for the NHS in 2019, it mentions managing expectations.
Recovery is non-linear (not a straight line). You can have three good days followed by a rubbish day, it doesn't mean that you are back at square one.
You'll probably be a little different, but you WILL make it. Following this link takes you to a page describing some remaining limitations following my TBI.

You can view my thoughts on being a TBI survivor by following this link, I personally prefer the term "recovering person" to TBI survivor (the clinical term often used). When considering my own particular outcome, the rationale is that the term survivor only relates to the short term (say a few weeks) after the TBI, whereas recovering person relates better to the ongoing months and years.

I Needed to be Needed
The name of this web site came unwittingly from my mother when she was articulating what she saw as the biggest influence on my recovery. My mother had seen me find purpose in life through the various volunteering roles I became involved in, her exact words were: "You needed to be needed". My recovery approach could also be stated in a very short sentence: I desperately wanted to feel useful again.

Follow this link to view some of my thoughts on the importance of having a fulfilling purpose during recovery, and my hopes for what this web site might achieve.
I have a positive outlook on life and consider every lived day beyond my TBI as a bonus. I can sum up my recovery in a single word: contented - see link.
A simplified chronological timeline of my hospitalisation, recovery and return to work can be viewed via this link.
A page leading to descriptions and viewpoints of the post-discharge progression of my recovery can be viewed by following this link.

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Rehabilitation Centre

Adjacent to my bed at the NHS Haywood Hospital, the note written by Ruth (adjacent image) was pinned to the wall, I probably read it at least twenty times each day. It helped enormously to know that people were out there who cared about me. I didn't know why I was in hospital or what year it was, but my cognition was still intact as I was able to use my mobile phone to take a photo of the note. There was so much the rehabilitation unit staff did for my recovery, I will always be enormously grateful to all of them. The work they do may not be as glamorous as other clinical disciplines, however, they are as important as anyone to a successful recovery outcome. I felt especially close to the rehabilitation folks as they were the first people I properly engaged with post-TBI.