Raising awareness of rare condition of Cauda Equina Syndrome on International Day of Persons with Disabilities

Posted: 03/12/2018

International Day of Persons with Disabilities takes place each year on 3 December to raise awareness of disability issues and rights and to promote the fact that disability should equal diversity, not disadvantage.

The clinical negligence team at Penningtons Manches acts for a number of clients who have been diagnosed with Cauda Equina Syndrome (CES), which can be an extremely disabling condition if surgery is not performed promptly. As the condition is relatively unknown to the general population, we are using International Day of Persons with Disabilities to raise awareness. 

What is CES?

The Cauda Equina nerves are located at the lower end of the spinal cord where the nerves fan outbehind the lumbar discs of the spine. If these discs prolapse, they can trap the Cauda Equina nerves. In younger people this often happens quite suddenly but in older people the process can be more gradual and therefore the symptoms can sometimes be mistakenly put down to ‘old age’. CES is a medical emergency as the longer the nerves are trapped, the more likely the damage is to be permanent.   

What are the symptoms?

There are a number of 'red flag' symptoms to look out for, including:

• severe back pain;
• weakness or numbness in one or both legs, particularly in the feet and ankles;
• the inability to urinate or to hold urine or faeces (incontinence);
• numbness or tingling in the crotch and/or buttocks; and
• sexual dysfunction.

If you experience any combination of the above, whilst it may not necessarily mean that you are suffering from CES, you should seek immediate medical treatment. 

Treatment and recovery

If you have been diagnosed with CES, you will need to undergo urgent decompression surgery to release the Cauda Equina nerves, ideally within 24 hours of the onset of symptoms. The sooner the decompression surgery takes place, the more likely you are to avoid permanent bladder, bowel, sensation and sexual function issues. 

Unfortunately, surgery is not always performed in time and the permanent symptoms can be very disabling. Individuals affected by delayed CES treatment often struggle to return to work in the same capacity, if at all. Many require ongoing treatment for their bladder and bowel issues and assistance from friends and family to do daily tasks. The condition also affects people psychologically, meaning they may need antidepressant medication and/or counselling therapy.

Emily Hartland, an associate in Penningtons Manches’ clinical negligence team, comments: “As it is a relatively rare condition, sufferers often feel embarrassed and unable to talk about their symptoms. We do not want our clients to feel alone, so as well as providing them with as much support as we can as part of pursuing a medical negligence claim, we refer them to charities such as BackCare and the Spinal Injuries Association. These charities provide advice and support for people living with the long-term symptoms caused by CES, and forums which enable both those suffering from the condition as well as their friends and family to talk to others who have been affected.

“Some medical practitioners, including GPs and A&E consultants, will not have come across CES in clinical practice before and this is one of the reasons why delays in diagnosis and treatment can occur. In addition, many people do not appreciate that their symptoms are a medical emergency and do not seek advice quickly enough to avoid long-term symptoms. We hope that by spreading awareness of the condition, people will be more alert to the symptoms to look out for and know when to seek medical attention. The rarity of the condition also means that many people can feel isolated and unable to talk about their symptoms. However, thanks to charities such as the Spinal Injuries Association, there is a way for sufferers to share their experiences and to obtain advice and support on how to cope with the condition.”  

For more information on CES and / or pursuing a legal claim for the management of the condition, click here.

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