Personal Perspective: Spinal Stroke
Posted in Personal Perspective on 14th Sep 2017
Provenance and peer review: Invited and internally reviewed.
To cite: Tween, R. ACNR 2017:17(1):37-38
Published online: 14/9/17
1st May 2013 started like any normal working day apart from one thing – I felt a sudden pain in my mid to lower back as I was getting dressed. It was sharp enough to take my breath away but barely lasted a couple of minutes and was quickly forgotten. It was a glorious spring morning as I set off cycling to work but I was barely half a mile from home when I felt my bike pedals weren’t moving around properly. I braked ready to get off and see what the problem was but when my feet touched the ground my weight just gave way beneath me and I collapsed in the road. I phoned my husband, David, who, with the help of a passerby, lifted me onto the back seat of the car and drove me to hospital. In the space of just over an hour I had lost power and sensation in both legs and my pelvis to just above my waist. I had been doubly incontinent having lost control of both my bladder and bowel. Was the creeping paralysis going to stop? Would it prevent me from breathing? I remember telling David that I loved him: I was terrified.
The staff in A&E were brilliant. In fact I couldn’t fault the medical attention and investigation from start to finish. Living so near to Cambridge University Hospitals meant that I had rapid access to an extensive team of neurologists, many involved in different areas of research within the University. The initial diagnosis was a collapsed central disc and I knew that this was a clinical emergency likely to require urgent surgery to prevent permanent damage to the spinal cord. But no such luck! The MRI drew a blank, as did another one of higher up the spine. The diagnosis was not looking so good.
I couldn’t fault the medical attention and investigation from start to finish
I was sent up to a ward where a urinary catheter was inserted and I was seen by the on-call Consultant Neurologist. He thought it most likely that I had suffered a spinal stroke causing a spinal cord infarction at thoracic level 10. Then, he told me that it was unlikely I would ever walk again. There isn’t really any way of delivering such devastating news that won’t cause distress. David was with me, and hearing it together helped; at least we could cry together. This provisional diagnosis had been reached as a result of taking a thorough medical history and carrying out a full physical examination. The MRI scan was also a key test; the absence of anything causing pressure on the spinal cord had been noted but I would need another scan a few days after the infarction or bleed to confirm that the blood supply had been disrupted. Spinal strokes are a rare condition, much less common than cerebral strokes: they account for about 1.2% of all strokes.
There were two other diagnostic possibilities: damage to the spinal cord through either an auto- immune response called Neuromyelitis Optica (NMO) or as a result of severe infection, bacterial or viral. My medical team began initial treatment modalities for both these possibilities. I started a short course of high dose steroids, a course of high dose intravenous antibiotics and high dose anti-viral treatment. A central line was inserted for five days of plasma exchange. I was seen by someone from the infectious diseases team who checked my recent travel history, any unusual contacts and requested various blood tests, which were sent to laboratories around the country. The specialist nurse did a lumbar puncture so that the CSF could be sent for full analysis, including an infection screen. I started to clutch at straws; as a regular rower and river swimmer, maybe I’d picked up some rare bug from the river water? An infective cause surely gave me the best prognosis. But I was well, had no fever and I think everyone knew it was unlikely. I’d had nursing experience of caring for someone with worst case NMO also known as Devic’s disease. It is characterised by relapse and remission, severely deteriorating vision and paralysis that can require long term management with immunosuppressant therapy. Less than five days after suffering the shock of a diagnosis where I was to be almost certain of permanent paralysis, I now found myself favouring that over an NMO prognosis which could be both severely debilitating and forever uncertain. Not being able to walk again at least gave me some certainty and a point from which to start planning for the future.
Less than five days after suffering the shock of a diagnosis where I was to be almost certain of permanent paralysis, I now found myself favouring that over an NMO prognosis
I was determined to be strong. From day one I reflected on how lucky I was – I’d already lived 56 years of a full and interesting life, my body above my waist was ok: I was still me. The unit psychologist worked closely with me helping me to acknowledge loss and to start to process my grief. But it was a long time before I could start to work through my over-whelming feelings of guilt. Spinal cord injury (SCI) is a life changing event and impacts on the whole family, as well as the injured person. As a wife, mother to three children, daughter, colleague and friend to many – how could I not feel guilt?
Persistent neuropathic pain occurs in 40% of people who have suffered SCI. In my case the severe pain is characterised by burning and tingling in my pelvis, perineum, legs and feet alongside tightness to the point of thinking the skin is about to tear. The pain has been severely debilitating, and has had more of a detrimental effect on my quality of life than the paralysis itself. Specialist pain units with access to both clinical and psychological services are not readily or uniformly available. Clinical Pain management is driven by drug therapy, although the possibility of more invasive approaches, such as spinal cord or deep brain stimulation, were discussed. These were unlikely to be effective and were not easily available anyway.
Psychological based pain management provides rehabilitative treatment, often in a group setting, and can help develop different coping strategies, such as learning to pace yourself whilst still living an active life. Being forced to alter my pace of life, which included retirement on the grounds of ill health, caused me huge emotional distress. Eventually I was referred to the local mental health service and received a course of Acceptance Commitment Therapy (ACT) over several months. This cognitive therapeutical approach, supplemented with courses in mindful meditation, proved a significant turning point in my approach to pain management. Acceptance has been the key to ownership and has reduced my dependency on the medical team, ultimately making me stronger and more able to define and use my own management strategies.
Rehabilitation plays a major role following SCI and I was fortunate to be referred to Stoke Mandeville Spinal Injuries Unit. My early experiences were bewildering, mainly because I suddenly realised that there were so many people who were there to learn how to walk again. Partly as a result of early diagnosis and intervention, complete SCI is now much less common than incomplete injury, which offers the possibility of at least partial recovery. My rehabilitation consisted of learning how to adapt to a different functioning body and to live independently from a wheelchair. It felt as though I’d been put in the remedial class – the group left to face the worst prognosis. Despite these overwhelming feelings of imminent failure, I did engage in an excellent rehab programme at Stoke Mandeville and eventually became fearful of being discharged home.
The real challenges began at home. Adapting to a real life environment, as opposed to the smooth hospital corridors with automatic doors, ramps to raised entrances and an accessible toilet on every floor, brought a new level of planning into every aspect of day-to-day life. Gone were the days of easy spontaneity. Each new tiny achievement was celebrated but there were many days when the exhaustion of just getting up, showered and dressed left me questioning what was the point of it all. The pain posed the greatest challenge and weakened me psychologically. Depression in chronic pain sufferers is well documented and the suicide rate among people with chronic pain is approximately double that for people who are pain-free. But I challenged those who questioned that I might be depressed; surely I was entitled to feel sad?
I challenged those who questioned that I might be depressed; surely I was entitled to feel sad?
Recently I visited a local Primary School to lead an assembly. One child asked me how I managed to get dressed, puzzled as to how someone who can’t stand can put on a pair of trousers. This question prompted me to tell the children that I can do almost everything I used to do before becoming wheelchair dependent, but that I sometimes need to do it a bit differently. Acceptance, a willingness to adapt and a good sense of humour have been key in enabling me to live a fulfilling and happy life again.
The charity Back Up1 helped me to realise that life after spinal cord injury was still full of pleasure and potential, and I now volunteer for them, both as a mentor and a wheelchair skills trainer. On 1st July this year I climbed Mount Snowdon in my wheelchair, pushing myself up alongside a team of 16 women who helped to push and pull me to the top and down again.2 We were the first all-female team to enter this challenge and raised over £20,000 for the charity. This was the highest amount ever raised by a single team and will help others who have suffered SCI to reach independence and fulfillment, as I have.
- The Back Up Trust – backuptrust.org.uk
- Just giving.com/fundraising/rosietween-womenofaltitude