Cauda equina syndrome - Life after diagnosis (PART ONE)

I am a medical negligence solicitor and have been working on cases involving cauda equina syndrome for the last 6 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 facet of their life.

More recently I have become acutely aware of the poor follow up support and treatment available to people who suffer with cauda equina. The available support and treatment options as limited when compared to those available following, for example, a spinal injury or an amputation. They are often afforded specialist treatment in specialist centres, whether that be in the form of general rehab, physiotherapy, occupational therapy or prosthetics.

For people with cauda equina syndrome, no such support network exists.

This was highlighted recently again to me, when I visited a client who has been through a diagnosis of cauda equina, and is now having to learn to cope with the symptoms she has been left with, after there was a delay in diagnosing and treating her condition.

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 for it. I will also be talking about the type of symptoms you can be left and how these 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
• Radiating pain from other areas of the body
• Numbness and/or weakness and/or pain in the legs
• Loss of sensation in the buttock and pelvic region
• Bowel or bladder dysfunction
• Sexual dysfunction

Cauda equina syndrome can be difficult to diagnose because not all of the above symptoms will be experienced. The symptoms can be of varying degrees and over different timescales.

Cauda equina syndrome is a rare condition but doctors should be aware of the “red flag” symptoms and must ensure that there are no significant delays in providing medical treatment. An early diagnosis of cauda equina syndrome is vital.

Cauda equina treatment and recovery

It is becoming more apparent to me, with each new cauda equina medical negligence case that I am approached about, that the level of after care and support available to people suffering with cauda equina is considerably lacking, given the significant impact this can have on a person’s everyday life.

Cauda equina sufferers require urgent and complex surgery to remove the pressure on the spinal nerves. Often, until then, they might have only suffered with what is colloquially known as “mechanical back pain” or sciatica. Urgent neurosurgery is a daunting prospect for anyone, but especially someone who has been in such sudden and extreme pain.

Once the neurosurgery has taken place and the recovery is underway, the patient is discharged from hospital. Unfortunately, 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 there is unlikely to be much improvement in the bladder and bowel function. 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. People don’t understand the full catalogue of their symptoms.

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. So after undergoing major spinal surgery, an individual may not really notice that much improvement in their symptoms overall and that can be difficult to come to terms with in itself.

Typically, people who have suffered with cauda equina syndrome are left with a urinary urgency or even full incontinence, a difficulty to distinguish between flatulence and the need to pass a bowel motion, and even more concerning, symptoms of numbness in the saddle or groin area.

Not symptoms that people generally want to talk about!

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. Think about having to manually evacuate your bowel.

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 are dealing with these difficulties every day, and the support available to them is woefully inadequate.

Why is a quick diagnosis so important?

Time is never more of the essence than in a case of cauda equina syndrome. The condition can progress at different speeds in different people and it is possible to have a partial cauda equina syndrome or full cauda equina.

If you are diagnosed while you still have only a partial cauda equina lesion, you stand a good chance of making a full neurological recovery. This means the urinary and bowel symptoms are likely to be less severe and thus easier to manage in everyday life.

However, with every passing hour without treatment, more and more damage is being done to the compressed nerves in the spinal column. Once that damage reaches a certain point, it becomes irreversible. Once a patient reaches this point, it is categorised as complete cauda equina. Sadly this means that the symptoms at the time of diagnosis and surgery are not likely to resolve or spontaneously improve after surgery. Surgery is still however required to alleviate the compression in the spine.

Cauda equina diagnosis usually involves an MRI scan, so that the level of the compression in the spine can be identified. Surgery is usually carried out as an emergency, by either a spinal surgeon or a neurosurgeon.

In the second part of our cauda equina series I will discuss the impact of that the symptoms of cauda equina can have upon everyday life.