About Cauda Equina Syndrome (CES)
CES occurs when the nerves at the base of the spinal cord become compressed, often due to a slipped disc but it can also happen for other reasons. Prompt diagnosis and treatment are crucial to prevent permanent damage to the nerves, which affect the bladder, bowel, sexual function, and mobility.
Key symptoms include lower back pain, numbness and altered sensation in the buttock or between the legs also known as the saddle region (your private parts), problems with bladder or bowel control, leg weakness or pain, and sexual function.
The onset of symptoms can be sudden in some cases and gradual in others. Back pain is often associated with CES, but it is important to understand that back pain does not always result in CES.
CES is a rare and life changing condition. It is a surgical emergency, so speed is of the essence. Acting quickly may prevent potentially serious permanent damage. It is important to note that once nerves are damaged, they usually do not recover.
You may hear the symptoms of CES be described as “red flag symptoms”. If you suspect that you have any of the red flags of CES you should seek URGENT medical help.
Red Flags of Cauda Equina Syndrome
Bowel Problems
- Constipation and an inability to have a bowel movement at all.
- Being able to move your bowels, but not having the sensation of moving your bowels.
- Having the urge to go to the toilet but being unable to control the bowel movement.
- Loss of sensation of needing to have a bowel movement.
Bladder Problems
- Being unable to urinate.
- Being unable to start urinating.
- Being unable to stop urinating.
- Being unable to feel when the bladder is full.
- Being able to urinate, but unable to feel the sensation of the urine coming out.
Saddle Numbness
- Loss of feeling or numbness in or/and around your anus or genital area.
- Unable to feel anything when wiping yourself with toilet paper.
Sexual Problems
- Unable to achieve an erection.
- Unable to ejaculate or orgasm.
- Loss of sensation during intercourse.
- Loss of sensation in the clitoris or penis.
Nerve Root Pain
- Sciatica (pain affecting back, hip or outer leg – in one or both legs).
- Back pain.
- Leg pain in one or both legs.
- Leg weakness in one or both legs.
- Loss of sensation in one or both legs.
Client Stories
Causes of Cauda Equina Syndrome (CES)
CES is caused by damage to the nerves. This can be caused by impingement or pinching of the nerves, compression of the nerves or surgical complications.
When the Cauda Equina nerves are compressed, they can cause lasting or permanent damage as the injury to the nerves is usually irreversible.
Bowel, bladder and sexual function, and mobility can be permanently affected, with sufferers left with incontinence and sexual dysfunction.
Diagnosis of Cauda Equina Syndrome
Diagnosing Cauda Equina Syndrome (CES) usually requires a combination of clinical symptoms and a scan that is consistent with those symptoms.
If you have suspected CES, you should expect to have an MRI scan.
There have been cases where the scan and clinical symptoms do not match up and this can lead to difficulties in diagnosis.
Your medical team will want to check what the cause of the symptoms is. Based on the findings on the scan and the clinical presentation, the medical team will decide the best course of treatment for you.
It is very important to monitor how your condition progresses and you MUST tell your medical team how your condition has changed over the preceding days/hours.
Be as clear as you can be about your symptoms and describe what you feel.
Some of the descriptions we have heard from our clients about their condition before they were diagnosed are:
- “I had a long history of back problems but this pain was unbearable; I could not stand up”
- “I have never had back problems but I reached up to get something out of the cupboard and my back just went”
- “It felt funny when I wiped myself when I went to the toilet”
- “I could feel the need to pass urine but when I actually went to the toilet I could not feel it coming out, even though I could stop and start OK”
- “I had numbness and tingling down my legs”
- “I could not go to the toilet without pressing on my bladder with my fist”
- “I lost control of my bladder and wee was just coming out”
Treatment of Cauda Equina Syndrome
Treatment for Cauda Equina Syndrome (CES) usually involves surgery to decompress the nerves. This involves an operation to open up the space surrounding the nerves and relieve pressure. Timing of surgery is crucial. The sooner the surgery is done, the better the outcome.
Sometimes, however, irreversible damage has already been sustained and in such cases, any delay in surgery will not make a difference. Without treatment CES can leave the patient with a range of severe permanent disabilities.
It can cause lasting pain in the lower back, pain and / or weakness in the legs, pain in the buttocks and between the legs. It can also cause bladder and bowel incontinence and sexual dysfunction. This can be severely detrimental to a patient’s quality of life.
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