I am a medical negligence solicitor and have been working on cases involving cauda equina syndrome (CES) for the last 14 years. I have dealt with a number of cases involving delays in diagnosis and treatment of the condition and seen first-hand the impact that it can have on an individual, and how it can affect every part of their life. With each case that I work on, and each person I come into contact with who is living with CES, I become more acutely aware of the lack of follow up support available to this group of people. There is no clear onward referral pathway for those living with bladder and bowel dysfunction. Individuals have to seek referrals to urology and other services via their GP which can often result in delays in accessing proper continence care. The difference between the available support and treatment options compared to those who have experienced an amputation, for example, is stark. Amputees are often afforded specialist treatment in specialist centres and have access to rehabilitation programmes including physiotherapy, occupational therapy and prosthetics. If you sustain a spinal cord injury, you are transferred to a spinal injury rehabilitation centre after your immediate treatment to recover and learn how to adapt to life after injury. For people with cauda equina syndrome, no such support network exists, despite the fact that cauda equina involves damage to the nerves in the spine and is becoming more widely recognised as a spinal cord injury. This is highlighted to me time and again, when I meet new clients who have been diagnosed with cauda equina, and are now having to learn to cope with the impact of their spinal cord injury on their lives. In the first of this two part series on cauda equina, I will discuss what cauda equina is, how it is diagnosed and what treatment is available. I will also be talking about the type of symptoms you can be left with and how these can affect everyday life. What is cauda equina syndrome? Cauda equina syndrome (sometimes known by the abbreviated letters CES) is a term that you will likely never come across – unless you become affected by it, or you know somebody who has been. Cauda equina is a rare neurological condition, where the nerves in the spinal column are compressed. The nerves that are affected by the compression are those that control bladder and bowel function and sexual function as well. The nerves are collectively known as the cauda equina nerves because they hang down from the spinal column and resemble a horse’s tale. What are the symptoms of cauda equina? Symptoms of cauda equina syndrome include: Lower back pain Numbness and/or weakness and/or pain in one or both legs Loss of sensation in the perineal area (the buttocks and forward into the genital area) Bowel or bladder dysfunction Sexual dysfunction Cauda equina syndrome can be difficult to diagnose because in the early stages it is unlikely all of the above symptoms will be experienced at any one time. The symptoms can be of varying degrees and often occur on a background of significant back pain. It is widely accepted that CES is a progressive condition that can worsen over time, as the compression of the nerves gets more severe. Cauda equina syndrome is a rare condition but doctors should be aware of the “red flag” symptoms when someone presents with lower back pain, and must ensure that there are no significant delays in providing medical treatment or arranging onward investigation of the symptoms. An early diagnosis of cauda equina syndrome is vital. Cauda equina treatment and recovery Cauda equina sufferers require urgent surgery to remove the pressure on the spinal nerves. Neurosurgery or spinal surgery is a daunting prospect for anyone, but especially for someone who has been in such sudden and extreme pain and then noticed a worsening of their condition such that they might experience problems passing urine or a lack of sensation in the perineal or saddle area (named as such because it covers every part of the body a saddle might touch if you sat on a saddle). Once surgery has taken place and the recovery is underway without any complications, the patient is discharged from hospital quite quickly – usually within a day or two. People are relieved that the excruciating back pain is reduced, which is often the case, but do not have a full understanding of any ongoing dysfunction or neurological injury at the time of discharge. This means people are left to learn about the longer-term effects of cauda equina syndrome on their own. One of the complicating factors of the syndrome is that, if a certain amount of time has passed since the onset of the compression of the nerves, only limited function may be restored with surgery. In these circumstances, where before surgery people had a degree of bladder and bowel dysfunction, there is unlikely to be much improvement in these symptoms. A full assessment of the extent of the neurological injury is required before a patient is discharged, but sadly this does not appear to happen routinely. It is then only on returning home that people realise the extent of the continence and other issues, and these can have a profound impact on the way people live their lives. Sometimes a small amount of recovery and restoration of function can occur, but this is often minimal. People often don’t appreciate that their ongoing symptoms are actually as a result of the nerve damage that has occurred because of the compression of the cauda equina nerves. Ongoing pain and incontinence There is usually some immediate relief of the excruciating back pain symptoms following surgery. However, patients are often left with some degree of ongoing, low level, back pain as well. Typically, people who have suffered with cauda equina syndrome are left with urinary dysfunction, and this can range from urgency to full incontinence. Bowel dysfunction is common too, and people report a range of symptoms from a difficulty to distinguish between flatulence and the need to pass a bowel motion and extreme constipation requiring irrigation of the bowel. Another common injury with cauda equina compression involves symptoms of numbness in the saddle or groin area, which can also cause sexual dysfunction. These are not symptoms that people generally want to talk about openly! These symptoms in isolation may not seem to present too much of a problem to you and I. But think through the practicalities. Think about having to perform intermittent self-catheterisation at work and the time that might take. Think about having to manually evacuate your bowel a couple of times a day before you leave the house. These are all issues that we generally shy away from discussing and don’t form the topic of polite conversation. Unfortunately, people with cauda equina syndrome and spinal cord injuries are dealing with these difficulties every day. Why is a quick diagnosis so important? The longer the nerves of the cauda equina are compressed, the more neurological damage can occur. Surgery as quickly as possible to relieve the pressure on the nerves is the best way to preserve function. It is widely accepted that treatment for cauda equina syndrome should be performed on an urgent basis. If treatment can be carried out promptly following the onset of the condition, then relieving the compression on the nerves can result in a full or nearly full recovery. However, at some point the compression of the nerves will be so severe or have gone on for so long that the person loses autonomic control. They will experience bladder and/or bowel incontinence and whilst more recent medical studies suggest some recovery can still be made with surgery at this point in time, it is understood that on balance the level of incontinence will continue for the long term. In the second part of this cauda equina series, I discuss in more detail the impact of that the symptoms of cauda equina can have upon everyday life. Our cauda equina syndrome cases Our medical negligence solicitors have secured millions of pounds in compensation for those with cauda equina syndrome. You can see our previous cases here. If you or a member of your family have suffered disability from delayed diagnosis or treatment of cauda equina syndrome and would like to find out more about making a claim, contact us by email at email@example.com.