Cauda Equina - Advice for sufferers

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Welcome to our Cauda Equina website, which has been written to provide practical, relevant and patient-friendly information to sufferers of the Cauda Equina Syndrome (CES). This site has been written by four CES sufferers namely, Jane Ross, Mary Knott, Denis Begley (who are themselves nurses) and Suzy Gillett, and by clinical research fellow in Uro-Neurology Ciaran Brady. We also include a chapter on CES written by Iqbal F Hussain FRCS, former research fellow in Uro-Neurology. This website provides information on what to expect and how to cope with a diagnosis of Cauda Equina Syndrome.

Dr Clare Fowler MB, BS, MSc, FRCP, Consultant Uro-Neurologist at the National Hospital for Neurology and Neurosurgery, London, provides an introduction to this website.

Dr. Clare FowlerDr Clare Fowler MB, BS, MSc, FRCP
Consultant Uro-Neurologist
National Hospital for Neurology and Neurosurgery
Queen Square
London WC1N 3BG

During the years in which I have seen patients with Cauda Equina Syndrome (CES), I have often been struck by the tragedy of the condition. Patients have told me how, over the course of a few hours, damage has occurred to the nerve roots innervating their pelvic organs, and since that time they have been left with impaired control of their bladder and bowel with loss of sexual sensation.

I have learnt that the extent to which these three disabilities worry the patient is unpredictable. Some cope well with their bowel and bladder problems but are most distressed by loss of sexual sensation. Others say that loss of sexual function matters relatively less but that it is impossible to live a normal life with faecal incontinence.

Patients with CES undoubtedly have a difficult lot in life. One of the particular difficulties they face is that very often their disabilities are invisible to others. If the nerve root damage affects only the sacral roots, it is possible to walk almost normally, and yet have a profound neurological impairment of pelvic organ function. More than one patient has said to me that they had wished they had been in a wheelchair as a visible sign of their disability.

A further problem is that, once the medical emergency surrounding the cause of cauda equina injury has resolved, the team who care for them, be it orthopaedic or neurosurgical, is unlikely to be able to offer any further support. My advice to such patients is to ask their consultant to refer them for help with their persisting problems of bladder, bowel and sexual dysfunction. No one can resolve nerve damage, but there are many things that can be done to make the symptoms of Cauda Equina Syndrome more tolerable.

I hope that patients will get some assistance from this website, particularly in learning to cope with their problems. Equally, I hope that it will be informative to all health professionals who have patients suffering from CES. The people who have contributed to the website are three patients who themselves have suffered cauda equina injury and also two doctors from the department of Uro-Neurology at the National Hospital for Neurology and Neurosurgery, Queen Square. I think their advice, based on personal experience, is of immense value and I hope that you will find your contact with them through reading their accounts supportive.

Clare Fowler

Page Last Updated: 10 June 2005

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WelcomeAbout Cauda Equina SyndromeWhere to get helpPatients' Personal StoryLiterature ReviewWeb Links