The cauda equina is a bundle of nerves in the lower back. The cause of CES is usually compression or impingement of the nerves of the cauda equina by a disc or following surgery to repair a herniated disc in the spine. The condition can also be caused in other ways such as by spinal stenosis (an abnormal narrowing of the spinal canal) or through trauma.
Cauda Equina Syndrome can lead to loss of bladder and bowel control, with the patients becoming doubly incontinent. Patients can also lose sensation in their “saddle area” (bottom and groin) and they can lose sexual function. Some patients are left with chronic pain, (most commonly in their lower back and legs) and lose sensation and strength in their legs, leaving them unable to walk. It is important to remember that no two patients are the same. Some people with CES will have all of these symptoms, very severely, whilst others will only have some of the symptoms and perhaps only very mildly. Patients can also have the symptoms on just one side of their body, known as Hemi CES.
Despite being such a catastrophic injury, it is still a little known and often misunderstood condition, not just in the general population but also in the medical profession. It is therefore essential to spread awareness about the symptoms and how to diagnose CES, in order to minimise the number of lives that are devastated by this most cruel of conditions.
The 1st October is the annual Cauda Equina Syndrome Awareness Day. A day to remind patients and health care professionals about the “red flag” symptoms of Cauda Equina Syndrome and the need for urgent treatment, once the diagnosis is made.
Red flag symptoms
There are guidelines on the Standards of Care for investigation and Management of Cauda Equina Syndrome endorsed by the British Association of Spinal Surgeons (BASS) and the Society of British Neurological Surgeons (SBNS). These guidelines set out that a patient presenting with back pain, sciatic pain, altered function or sensation of their bladder, bowel and saddle area or bilateral leg pain, should be suspected of having or be developing CES.
When patients have these “red flag” symptoms it should lead to an emergency assessment by an orthopaedic/spinal doctor and/or referral for an emergency MRI scan. Diagnosis is made when “red flag” symptoms are accompanied by an MRI scan showing compression or at least touching of some of the nerves of the cauda equina, by a spinal disc.
The guidelines state that there should be a low threshold for investigation with an emergency MRI scan and an MRI must be available at the referring hospital 24 hours a day.
As a solicitor with specialist expertise in CES cases, I have to say that it is soul destroying when you see the same mistakes being made in healthcare, leading to delayed diagnosis and ultimately a patient being left with life long symptoms as a result.
I have seen so many cases where surgery is delayed unnecessarily, even after the diagnosis of CES has been made. I am often reminded by spinal surgeons that the guidelines are clear, nothing is to be gained by delaying surgery, you have to do what is safest for the patient. Invariably the answer is proceed to emergency spinal surgery, to give the patient the best chance of recovery.
Suspected cauda equina syndrome pathway
There are reasons for optimism, however, that changes are happening in the NHS, to improve awareness about CES and to manage suspected cases. A new Suspected Cauda Equina Syndrome pathway has recently been introduced, to try to standardise how patients are assessed and the treatment they receive, once CES is suspected.
In the protocol guidance, there is a reminder that a patient’s ability to urinate, cannot be used as a reason to exclude CES as a diagnosis. Too often I have seen doctors waiting for urinary symptoms to develop, before they consider the patient has met the criteria for an MRI scan, disregarding other “red flag” symptoms. I have seen numerous cases where too much reliance is placed on bladder scans, to exclude a diagnosis of CES. By the time diagnosis has been made, the patient’s condition has progressed to leave them permanently incontinent.
The new CES pathway guidelines highlight that a bladder scan is a useful tool in the assessment of a patient with suspected CES. However, bladder scans should not be used in isolation in deciding against requesting an MRI scan or undertaking emergency surgery.
Post-void residual volume (PVR) is the amount of urine retained in the bladder after urinating and is used as a diagnostic tool, as inability to urinate is one of the “red flag” symptoms for CES. The guidelines point out that 60% of patients who underwent emergency decompressive surgery for CES had a PVR of 600ml. Doctors are advised to catheterise the patient and document if they have sensation of urinating and to perform a catheter tug test. If a patient is unable to feel the catheter tug, it indicates a neurogenic bladder, where the bladder does not function properly due to nerve damage. A neurogenic bladder is another “red flag” symptom for CES.
Post-operative care and management of symptoms
A swift diagnosis, followed by prompt surgery, is essential to try to minimise the Claimant’s residual symptoms and maximise their recovery. What is also so important is good post operative care, from healthcare professionals who are experts in managing and supporting CES patients. Patients are entitled to specialist support on the NHS, whether that relates to bladder, bowel, pain, mobility, sexual disfunction and mental health. Sadly, I have seen in my own cases and I have heard through speaking with patients, that far too often, this does not happen.
Bladder and bowel symptoms
Complete Cauda Equina Syndrome can leave patients with permanent bowel and bladder dysfunction, among other symptoms. In this article, I will focus on the management of bladder and bowel symptoms. So many clients have told me about a lack of advice and support on bowel and bladder management, after developing CES. It makes me very angry to hear this, when bowel and bladder management is so person and impacting on someone’s life and wellbeing.
All patients with ongoing bladder and or bowel symptoms should be promptly referred to local continence services which may include colorectal and urological services or spinal cord injury services. I frequently have to advise clients that if they have not already had a referral to their regional spinal cord injury centre, they need to chase this up with their GP to refer them as soon as possible.
Experiences such as this have prompted the Spinal Injury Association to champion a new campaign
This is #SeriousSh1t to give people better bowel advice and support, following the development of bowel symptoms after a spinal injury.
Patients with CES can have a wide range of bowel symptoms and these can vary hugely in their severity. Every patient is unique. CES bowel symptoms can include:
- Having the urge to go to the toilet but being unable to control the bowel movement (incontinence).
- Constipation and an inability to have a bowel movement at all.
- Being able to go to the toilet, but not having the sensation or feeling of moving your bowels.
Some CES patients need to use laxatives to help them pass bowel movements. Some patients will need to evacuate their bowels manually. As this is rather unpleasant, many patients will try anal irrigation.
Anal irrigation involves instilling warm water into the rectum and lower (sigmoid) colon , using a rectal catheter, through the anus to empty out the faeces. The warm water stimulates the bowel to work, so that when the catheter is removed, faeces and water can pass into the toilet in the usual way.
Anal irrigation gives the patient more autonomy and control, to empty their bowel when it suits them. It can also help relieve abdominal pain and bloating and also gives the patient greater confidence to leave the home, with less fear of humiliating accidents.
There is a range of specialist equipment available and it is important that patients are guided and supported by health care professionals to choose the most suitable system for them. Patients often find it takes some time for their body to get used to the anal irrigation system, before it becomes a normal part of their bowel routine.
Further information is available from the National Institute for Health and Care Excellence.
For some patients, anal irrigation is not sufficient to manage their symptoms and it is necessary to undergo a colostomy in order to deal with their bowel problems. A colostomy is an operation to divert one end of the colon through an opening (stoma) in the stomach. A pouch can be placed over the stoma to collect the faeces. A colostomy will often be considered as a last resort, as it is more restrictive and patients will understandably be self conscious of having a colostomy bag.
Management of bladder symptoms
As with bowel symptoms, bladder symptoms can vary hugely in severity and nature. CES bladder symptoms can include:
- Being able to urinate, but being unable to feel the sensation of urinating.
- Being unable to feel when the bladder is full and having a sensation of the need to urinate.
- Being unable to start urinating.
- Being unable to stop urinating.
Some patients are able to cope with their lack of bladder control by urinating to a timetable to ensure that they are emptying their bladder, to try to avoid having embarrassing accidents. However, patients with more severe and more unpredictable bladder movements need to use a catheter to control the passing of urine. Patients who struggle to manage their bladder symptoms can use intermittent urinary catheters.
A urinary catheter is a soft hollow tube, which is passed into the bladder to drain urine. These catheters can be manually inserted several times a day to drain the bladder, and then are removed. The catheter is usually inserted into the bladder through the urethra. It is essential that patients are taught how to insert the catheter themselves and a re-occurring complaint from patients is that they are given no advice or they have to wait months for advice on catheterisation, after developing CES.
Some patients will require an indwelling catheter, either temporarily, or permanently. They allow continuous bladder drainage, but are more restrictive and like a colostomy bag, they are more conspicuous.
The need for psychological support
It is difficult to overstate how devastating and life changing CES symptoms can be for patients. If a patient is left with loss of bladder and bowel control and loss of sexual function, this can feel dehumanising.
If patients are having to physically manage their bladder and bowel movements with a catheter and or anal irrigation system, this has a huge impact on their ability to work, travel, to socialise and to carry on with every day life. As well as the practical difficulties, the psychological impact can be devastating. Patients will often lose their self confidence and the fear of having accidents, deters them from trying to return to the work place or going out to meet friends and family. CES can leave patients feeling like prisoners in their own home. Unsurprisingly many marriages do not survive the severe pressure that CES puts on the patient and their family. In addition, many patients suffer severe anxiety, worrying about how they will cope as they age and their physical health deteriorates. It is so important that patients get the psychological support following diagnosis of CES, as well as support with their physical symptoms. Unfortunately many patients complain that they have received little or no psychological support and this picture must change.
If CES is diagnosed quickly, patients can recover some or all of their bladder and bowel function. As highlighted above, the difference to a patient’s life is immeasurable. We must do better for these patients. This is #SeriousSh1t
This information is for educational purposes only and does not constitute legal advice. It is recommended that specific professional advice is sought before acting on any of the information given. © Shoosmiths LLP 2023