Cauda Equina Syndrome
Raising awareness of a little known life changer
Damage to the spine can lead to debilitating and lifelong consequences. One of the most severe spinal injuries is Cauda Equina Syndrome (CES). If not treated immediately, CES can leave patients with irreversible and life-changing impairments.
What is Cauda Equina Syndrome?
CES is a serious condition that affects the bundle of nerves at the base of the spine. It can result in a range of neurological and physical problems, depending on how quickly it is treated.
Urgent surgery is required to prevent permanent damage, generally within the first 48 hours after onset. However, depending on how early the condition is recognised, surgery and further treatment aren't always effective in preventing permanent harm.
How does it occur?
CES arises when there is sustained pressure on the cauda equina nerve bundle at the base of the spine. This commonly occurs from herniated or bulging discs, narrowing of the spinal canal, or inflammation of the spine.
The cauda equina nerves aid much of the function in the lower half of the body. Sustained pressure on the nerves can induce bladder or bowel weakness, an altered feeling or reduced strength and mobility in the legs, sexual dysfunction, and severe lower back pain.
In the most extreme cases, lower limb paralysis and complete incontinence can result.
Who does it affect?
Anyone who suffers trauma, degenerative conditions or infections in the lower back may be at risk of developing CES. A handful of underlying issues can also increase chances of CES, such as trauma to the lower spine through illness or injury.
David - Gold Coast, Queensland
David was a social 51-year-old living on the Gold Coast with his partner. He enjoyed an industrious professional life, working as a successful entrepreneur, sales assistant and financier.
In the late 90s, David was treated for a disc protrusion that was causing pain and pressure on the thecal sac (the membrane around spinal cord) at the base of his spine. The treatment was successful in relieving the pressure and David returned to his busy life.
In early 2012, David's lower back pain resurfaced. After initial visits to the GP, he was taken to the hospital by an ambulance. There, he was provided with pain relief and advised to rest and exercise after his symptoms subsided.
After two further ambulance call-outs, David found himself in hospital again. He received MRI scans of his lower back, revealing potential pressure on the cauda equina nerve and disc herniation.
Doctors performed a nerve root block, delivering anaesthetic and steroids to the nerves at the base of his spine. Although the treatment alleviated some of David's pain, it returned a couple of days later.
Another nerve root block was performed but this time, David relapsed within hours. His condition continued to deteriorate. Within days, he was struggling to pass urine and required high doses of pain medication for his discomfort. A catheter was eventually fitted to manage his difficulty urinating.
Eight days after the last nerve root block, David developed numbness in the region between his legs and all down his left leg. It wasn't for another 24 hours before David received surgery to relieve the pressure on his cauda equina nerves.
Although the surgery was ultimately successful, the delay in treating David's Cauda Equina Syndrome (CES) left him with severe permanent impairments. He now relies heavily on mobility aids, endures chronic neuropathic pain, has lost sexual function and experiences bladder and bowel incontinence.
After his surgery, David faced a completely different future. The home he once shared with his partner was no longer accessible and returning to the work he was so passionate about was out of the question.
He has since undergone further surgeries but none have been able to alleviate the constant pain and discomfort he experiences every day. In 2013, a spinal stimulator was inserted in an attempt to assist with his severe neuropathic pain. This, however, did little to ease his discomfort, and he continues to wake several times a night in excrutiating pain.
Unable to drive because of his CES, David has become socially isolated and has developed depressive phase bipolar disorder. He can no longer travel to see his children and struggles to maintain the hobbies and interests he once loved.
The symptoms of Cauda Equina Syndrome (CES) can occur quickly or build gradually over a number of weeks, months or years. This forms the two broad categories of CES - sudden onset and gradual onset. With both types, it is crucial to seek immediate medical attention.
The following symptoms can be signs of CES:
- Altered bladder and bowel control
- Weakness in the legs and/or feet
- Recurring or severe back pain
- Sciatic pain in the lower limbs
- Muscle weakness or numbness in the lower limbs
- Saddle anaesthesia – a numbness or tingling sensation in the buttocks and inner thighs
- Recent and sudden sexual dysfunction, and
- Lower back pain.
One of the most common causes of CES is a disc herniation at the lower end of the spine (the discs at L4-L5 and L5-S1). In these cases, the disc may bulge through or rupture a weak area of the disc wall to put pressure on the cauda equina nerves.
Other causes of pressure on the cauda equina nerve include:
- Lower back trauma causing fractures and inflammation in the cauda equina region
- Degenerative disc diseases causing the spinal canal to narrow or bone spurs to grow
- Tumours in the lower back
- Inflammation around nerves from an infection, and
- Infective fluid in the spine, such as an abscess.
Often considered a medical emergency, CES requires urgent surgical management.
In cases of herniated discs, bulging discs or lower back trauma, a surgical decompression is generally required. This involves a surgeon operating on the spine to relieve pressure on the nerves.
The damaged disc will be treated at this time to prevent the issue reccuring. Common treatment methods include a laminectomy, instrumentation or fusion for stabilisation, and a discectomy. A discectomy involves removing bone and other material that may be causing pressure on the nerves, and stabilising the spine.
Alternative treatments may be required where the CES stems from different causes. Examples of this include:
- Cancer treatments for CES brought on by tumours (this too may involve surgery)
- Anti-inflammatory drugs in cases of inflammatory conditions
- Antibiotics in cases of infection, and
- Surgical drainage of any abscesses.
Often, extensive rehabilitation following surgery is required, involving a multidisciplinary team of neurologists, urologists, pain management specialists and physiotherapists.
The impact of delayed diagnosis
Immediate diagnosis and treatment is critical in cases of Cauda Equina Syndrome (CES). The longer the pressure on the cauda equina nerves, the greater the chances of severe damage and the longer any potential recovery.
While there is still some conjecture around the exact amount of time, it is generally accepted that treatment is needed within the first 24 hours of diagnosing CES, particularly with cases of sudden onset. Once urinary difficulties have been identified and CES confirmed, emergency treatment is paramount. At this stage, the syndrome is still considered incomplete and patients have the best chance of regaining any lost function.
Once the condition deteriorates to complete CES, the prognosis is less favourable. However, urgent surgery and decompression can prevent progressive neurological damage.
This narrow timeframe for diagnosis and treatment, coupled with the low frequency of cases, makes CES a difficult area for medical professionals. A doctor may go through their entire career without coming across a single case.
However, when health professionals do not appropriately prioritise the further diagnosis and treatment of CES, there may be elements of medical negligence at play, particularly where the delay has impacted a patient's outcome.
As delaying treatment increases the likelihood of some of the more severe symptoms, it is critical that any person who displays early signs of CES seeks urgent medical attention, and is diagnosed and treated as quickly as possible.
Bruce - New South Wales
Bruce developed chronic lower back pain in December 2014, having experienced intermittent discomfort over the previous four years.
For most of his working life, Bruce was a labourer and painter. He loved his work, but spent large amounts of time in awkward positions that placed considerable strain on his lower back.
Bruce sought medical advice for his back pain and a CT image showed degenerative changes to the lower part of his spine. This included pressure on the exiting nerves at the L5/S1 vertebrae and a disc protrusion causing spinal canal narrowing at the L4/5 vertebrae.
In March 2015, Bruce went to his GP after his condition worsened considerably. His pain had increased and he was now experiencing lower limb weakness and reduced mobility. Before he could see a spinal specialist, Bruce was taken by ambulance to the local emergency department.
After admission, Bruce had an MRI of the lumbar area of his spine that showed complete compression of the thecal sac and cauda equina nerve roots. Due to the severity of the pressure, the chances of Bruce progressing to Cauda Equina Syndrome (CES) were extremely high.
A decompression procedure was urgently needed but unfortunately, the findings of Bruce's MRI scan indicating CES weren't communicated to his treating practitioners. His cauda equina symptoms went undiagnosed for another 12 hours.
By the time the severity of Bruce’s condition was realised, it was too late to prevent paraplegia. Bruce is now an incomplete paraplegic from the L4/5 vertebrae.
CES also left Bruce with minimal bowel and bladder control, loss of reflex in the ankles, no sensation from L5 downwards, loss of sexual function and reactive psychological depression.
From an active person enjoying full-time employment, Bruce is now mostly wheel chair bound, unable to drive and no longer able to participate in community activities. He requires ongoing care for simple daily living - showering and dressing, changing his catheter, meal preparation, shopping and laundry all require assistance.
Bruce’s story highlights the need to carefully evaluate and treat every presentation of possible CES. Test results must be communicated as quickly as possible to ensure healthcare providers can make informed decisions on the best course of treatment for their patients. When it comes to CES, any delay however small can lead to devastating and lifelong consequences.
Living with Cauda Equina Syndome
Life after treatment
In many cases, treatment of Cauda Equina Syndrome (CES) is successful. Patients often make a significant recovery, particularly if CES is diagnosed and managed at an early stage.
However, in cases of permanent damage from CES, an individual may suffer a spate of associated physical and mental health issues. Lengthy rehabilitation and therapy is often required. As time goes by, those affected by CES learn ways to adapt their living, but both physical and emotional support are critical components of the recovery process.
Physical mobility is one of the most varied factors for those with CES. The syndrome affects movement from the hips down, and once damage occurs, it is mostly irreversible.
When diagnosed and treated early, CES may leave patients with minor and reversible mobility issues. This can include sore feet, leg weakness, and general pain and discomfort.
If there are delays in treatment, patients may suffer permanent mobility problems and lower limb paraplegia. Walking, moving unaided and simple daily tasks can become increasingly difficult. Physical therapy can improve mobility and help regain some of the lost function. However, where treatment has been delayed, improvement is limited.
Pain and numbness
Because CES affects the nerves in the spine, numbness and pain can be a constant part of life after treatment.
Many of the areas where symptoms are present beforehand experience numbness afterwards, such as the saddle region and the inner legs. Other areas below the waist may also experience sensory loss and joint reflex may suffer.
After treatment, those with chronic CES experience pain in the lower back. With nerve-type pain, strong painkillers are required to manage the discomfort. For some, this pain becomes centralised and moves into other parts of the body.
Individuals with severe cases of CES also report increased pain especially at night, negatively impacting upon sleeping patterns.
The nerves responsible for sexual function are situated in the area of the spinal cord affected by CES. As a result, sexual dysfunction is a common side effect. This can put a strain on relationships and often, additional counselling support is needed.
Urinary and bowel incontinence
Incontinence can be one of the most troubling outcomes of CES, as it impacts heavily on social and working life.
In chronic cases, bladder and bowel dysfunction from neurological damage is common. This is known as a neurogenic bladder and a neurogenic bowel.
Drugs may be used to manage both an overactive and underactive bladder by relaxing or stimulating contractions. Doctors may also provide a course of action for improving bladder function in the long term, which can include the use of a catheter, or training and advice on self-catheterisation.
Both bladder and bowel control may also be allayed by balanced, high fibre diets and monitored fluid intake.
CES can happen unexpectedly and many are not prepared for the drastic changes in lifestyle that result.
Suddenly having to deal with the physical side effects of CES is incredibly challenging, and ongoing emotional support is crucial for an individual's wellbeing and fulfilment.
Although each patient is different, mental health issues are most apparent in those with permanent damage. Effective mental health support for the patient and their families is a critical part of the recovery process, and can drastically improve an individual's quality of life.
Unfortuantely, depression is common for those with life-changing outcomes from CES. Counselling is considered a more favourable approach for those with depression, as some medication can exacerbate the physical health issues associated with CES.
Valuable online support services are also available for those affected by CES. Specialised support groups provide opportunities for individuals to share their experiences, and can help patients adjust to life with CES.
K - Queensland
K was 35 when she gave birth to her first child. Around two weeks later, she began experiencing lower back pain, which slowly increased in nature and intensity.
K went to her GP complaining of tender lower back pain radiating out to her buttocks. She was referred for a CT scan the same day.
The results of the scan revealed a significant disc protrusion with possible nerve root compromise. Despite the drastically abnormal results, when K returned to her GP the following day, she was advised to treat her symptoms conservatively with pain relief and physiotherapy.
K’s condition worsened overnight. The following day, her pain was so excrutiating that she could barely walk. When she started experiencing irregular bladder sensations, K returned to her GP, this time needing a wheelchair to get inside. She was told that because she had given birth some 6 weeks prior, this was normal. She was sent home for bedrest.
Her condition continued to deteriorate over the next two days. After completely losing control of her bladder and bowel, K sought advice from a different medical centre. She was urgently referred to the nearest hospital.
Once admitted, investigations into K's symptoms were delayed. It wasn't for another 24 hours before the cauda equina symptoms were recognised and K finally underwent urgent back surgery. Although the surgery was ultimately successful, the delay in diagnosing and treating K's Cauda Equina Syndrome (CES) has left her with lifelong impairments.
Since her surgery, K has continued to suffer sharp pain radiating from her spine to her lower limbs, causing a tingling sensation in her feet. She has no feeling in her left foot and the toes of her right foot have curled under. CES has also left K with urinary and bowel disturbance, numbness in the saddle region, and sexual dysfunction.
Her immediate family now provide round the clock personal care. K can't even care for her son without the help of her husband and parents. K's diagnosis has also taken a significant emotional toll and she has experienced depressive symptoms since her surgery. Returning to work is out of the question and she can barely leave the house without support.
Even where Cauda Equina Syndrome (CES) is treated, patients may still experience permanent and long-term damage. While some individuals make a complete recovery, others require significant and ongoing support.
Primary care is generally given by family, friends and loved ones. Medical practitioners can provide initial support in rehabilitation and therapy, most notably improving lower limb function, pain management and bladder and bowel control. But there are limits to the level of personal, physical and emotional assistance available.
Friends and family undoubtedly provide valuable support for those affected by CES. Adjusting to changes after CES and going through rehabilitation can take a significant physical and emotional toll. Quite often, daily tasks that were once routine become almost impossible without assistance. The support of loved ones through this period of transition is critical for a patient's recovery.
Counsellors can also provide important guidance for patients and their families. The physical impairments from CES and their flow on effects can be difficult to comprehend. Seeking psychological support can provide individuals and those close to them with effective coping strategies to help adjust to life with CES.
Compensation for medical negligence
Where CES was the result of medical negligence, a legal claim for compensation provides an opportunity for patients to access much needed financial support through this difficult time.
In successful cases, compensation can cover the cost of care needs, rehabilitation, therapy, specialist equipment and other medical expenses resulting from CES. It can also include payments for lost earnings and lost opportunity to return to paid employment because of the negligence.
Although the damage can't be undone, compensation is an important way for individuals to access the care and support they need to live a meaningful life.
Additional support options
For many with CES, primary support from family, friends and hospitals is enough. For others, it may be necessary to look further afield to national and international support networks.
The recently set up National Disability Insurance Scheme (NDIS) offers personalised plans, individually tailored to support each person’s particular needs - NDIS pathway: https://www.ndis.gov.au/participants/planning-process.html.
Where the NDIS is not available, there are many other state-based options across Australia. The NDIS site provides further information on additional resources and networks that may be available: https://www.ndis.gov.au/people-disability/other-services.html.
For individuals with limited mobility, there are many other services in both the community and private sectors. These include directory and advisory services online that help connect people with the relevant services for their particular needs – for example, Health Direct and Connect Care.
Unfortunately, due to the relatively low incidence of CES, tailored support networks are not available in Australia. There are, however, overseas CES communities that offer support via message boards and downloadable resources.
Support for all those affected
CES does not discriminate - it can affect any one at any time. In most cases, medical intervention is successful and patients make a complete recovery.
However, when CES is not recognised and treated immediately life can change in an instant, and not just for the affected individual. In cases of severe and permanent impairment, individuals endure an intense process of rehabilitation and recovery, while coming to terms with an entirely new future. Family, friends and loved ones often become primary caregivers, and shoulder much of the physical, emotional and financial burden.
For all those affected by a CES diagnosis, it’s important to know that you are not alone. Help and support services are readily available, both in and out of the medical sector.
Where CES was the result of medical negligence, a claim for compensation may be available. Compensation is about more than just the money. Through a legal claim, individuals can find relief from the significant financial burden placed on families and loved ones as a result of CES. By facilitating access to the highest standard of care, support and treatment, compensation can provide lasting peace of mind to all those affected by CES.
For more information on medical negligence cases involving CES, get in touch with Shine Lawyers’ Medical Law Department today. Together, we can help all those affected by CES live a life full of independence and opportunity.