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Spinal Cord Injury Awareness Day (SCIAD) – #EverydayMountains for people living with Cauda Equina Syndrome (CES)
In the lead up to Spinal Cord Injury Awareness Day 2022,we’ve been asking friends and clients who are living with CES, ‘What is your everyday mountain?’
Cauda equina syndrome or CES is a spinal cord injury (SCI) caused by compression of the cauda equina nerves at the base of the spine. When ‘red flag’ symptoms and signs appear, the patient must be referred for emergency neurosurgical treatment to prevent permanent disability, lifelong pain and loss of function.
Unlike paraplegia or tetraplegia, from traumatic or surgical accidents, disability from CES isn’t always immediately obvious and is commonly misunderstood. This leaves many people who are already struggling to adapt to life-changing CES disability feeling additional pressure to manage or comply with the unrealistic expectations of strangers, family or friends, and repeatedly having to explain their needs arising from their condition. Or they simply have to cope alone.
According to Allison Whitehorn, the founder of Cauda Equina Spinal Cord Injury support group, CESCI https://www.cesci.org/ , by far the biggest issue that brings new CES sufferers to the support group is seeking advice and support for their impaired bladder and bowel function. It’s often the same story. They’ve been discharged from hospital by the neurosurgeons after undergoing emergency surgery, on the assumption that any ongoing problems will be addressed by follow up care. Patients are then left to discover that, without a designated NHS care pathway for CES, there is no automatic follow-up to assess their ongoing needs. Many patients are discharged without anyone even checking whether they can pass urine. All they can do is seek help from their GP, who may provide short term help with catheterisation. They must then wait for referrals to continence or colorectal teams, pain clinics and other NHS services, all of which are under resourced and over-subscribed.
Reduced mobility from pain or weakness in the legs is common after a diagnosis of cauda equina but many people with CES can still manage to walk. Those who can walk, often feel they must, even when the effort of doing so and resulting pain is severely detrimental to their health. But those who have learned to live successfully and thrive despite their CES advise against pushing too hard to avoid the wheelchair at all costs. Allison Whitehorn recalls the constant pain she put herself through by insisting on walking in the first year after her CES diagnosis. Then someone at Spinal Injuries Association (SIA) told her to use her wheelchair and save her energy, and she found that she could achieve so much more. That advice changed her quality of life dramatically. She describes this realisation as a life-changing moment.
Sadly, many who need it don’t receive or accept that kind of ‘take-it-from-me-I’ve-been-there’ advice. Giving into limitations can challenge our own or others’ perceptions of ourselves or seem like failure. It’s a very personal choice and also depends on the level of pain and disability. However, pushing through unbearable pain daily rather than accept a wheelchair can cause huge, unnecessary suffering, social isolation, psychological symptoms and addiction to painkillers.
Unsuitable accommodation was another mountain that Allison overcame, although she admits that at first she fought the idea of needing adaptations to her home. It took years before she was ready to accept that she needed adapted, accessible bungalow accommodation, but believes her life started again when she and her husband bought and adapted their new home. Each visit to her daughter who lives in her previous home is a stark reminder of what she fought to hold on to. She can’t access the toilet and even struggles to get through the door. Carpeted floors and small spaces mean she can’t enter some rooms in the wheelchair. Now, her own home is open plan and fully adapted, with a wet room bathroom. Her accessible home allows her to live independently and also to socialise with friends and guests, including those in wheelchairs.
The key message from Allison and her friends in the CESCI community was that ‘everyday mountains’ are easier to climb if the need for change is accepted. Group member, Jon, said, “It’s about adapting and doing things a different way. It’s also about looking after your little wins.” Another group member, Lucy emphasised that being kind to yourself involves resetting some standards after a traumatic injury, setting small goals and celebrating each one you reach.