The following other areas may be affected in CES patients:
- State of mind
- Walking and balance
- Skin care
State of mind:
CES is not going to go away but you will cope with all the problems, both physical and mental, over time. People approach adversity in different ways, so it can take time to find the solutions to your individual problems. Most of us with CES have had moments when it has been difficult to see our lives as normal. CES can strike anybody. Some people will have or have had jobs, others will have families and some will be quite alone. Coping with an invisible condition can be difficult as people may not know that you have a disability.
It is often said that you have to "come to terms" with your problem, but it may be that you have to adapt to it with a positive attitude, rather than accept it. When the initial shock of having CES has passed (this may take a year or more), you will want to inform yourself further.
It is normal to feel very low and miserable, especially in the early days, but talking and listening to others' experiences can help. There is nothing wrong in admitting that you need some extra support. It can be hard to talk to people who do not know what you are going through, but try to let someone know how you feel bottling it up will not help. Whatever you try is of value, worthwhile and important to you to gain confidence in coping with CES and lack of self-esteem.
Support from family and friends makes a lot of difference in how you feel about yourself. Involve your family right from the beginning in your care. Let them know what your problems are so that they do not feel excluded. You should also consider any suggestion from family, friends or professionals. Don't reject them out of hand without listening or isolate yourself, take their advice and see what happens. Try not to let the burden of care rest with your children if you do not have a partner.
Some CES patients find it hard to talk to family, particularly if they have bladder, bowel and sexual problems. If you feel embarrassed, speak to someone with specialist knowledge - psychotherapists, psychiatrists, counsellors, sex therapists, your GP, practice nurse or continence advisor (see Where to get help). If you are on the Internet you can join the CESSG group: firstname.lastname@example.org.
It is a free, confidential website where you can exchange your views and feelings with other CES sufferers, both men and women. When you feel confident about coping with your altered body, your mental state will improve.
Types of pain as described by CES patients:
Many people with CES have pain permanently after their surgery or cauda equina injury. The type of pain that people can experience varies in intensity and location. Pain can occur in areas of normal sensation (feeling) or where there is absent or abnormal sensation. These pains can be very frightening and upsetting for patients at the beginning and are very difficult to treat. The pain can come on suddenly, without warning or can be brought on by lifting etc. Patients can experience more than one type of pain. It is important to get as much help as possible to control your pain. In those with severe pain, mobility can be affected and patients can get depressed. It is important to remember that, because the sensation (feeling) in the perineum (between the legs) is absent or diminished, patients do not have pain as warning that something may be wrong (eg urine infection, vaginal thrush or anal fissure). Being overweight can aggravate back pain and will affect walking and balance.
Where pain may occur:
- "Short sharp stabs of pain either travelling from one area to another (down the leg) or confined to one spot (eg heel or rectum)"
- "Bursts of pain over small areas as though the muscle is fizzing"
- "Burning pain as though the area is very cold"
- "Pain that runs down through either the buttock or leg"
- "Heels that become very tender and aching, particularly when walking"
- "A tearing pain in the rectum that can be prolonged"
- "An aching pain in the toes"
- "An aching pain in the foot"
- Perineum/ vagina
- Upper thigh
- Lower leg
Methods of dealing with pain: Painkillers & Analgesics
Very often in CES the pain is periodic and comes on without warning, so it may be unnecessary to take regular medication. It is important to get advice regarding medication from your family doctor, pain specialists (who generally work in anaesthetic departments of hospitals) or pharmacists. Side effects are common with many analgesics, for instance opiate drugs can cause constipation whilst others can cause loose stools.
Pain will affect each person differently and each individual has to decide with help and advice how to manage this aspect of their disability. Doing any task, whether at home or at work, needs to be within your capabilities. Some people with CES can tolerate a great deal of pain and still walk, undertake a job or even play sports. Know your limits and don't exceed them or you'll feel miserable and regret physical activity. For example, if you like to garden but find it painful, then do it for short periods. If you like to play golf then just play a few holes. It can very difficult for young patients with CES who have small children. It may be very painful to lift your children. Try sitting down before you give them a cuddle.
Most people have anaesthesia (loss of sensation) or paraesthesia (altered) sensation in the perineum (between the legs) and saddle area. Some people have more loss the area of numbness can extend over large areas, such as the buttocks, down the back of the legs to the feet and heels. Despite the fact that you are unable to feel "touch" in these areas, you may still have heightened awareness of these regions. There may be hypersensitivity or altered sensation such that a gentle touch may result in discomfort. You may also have very cold feet.
Patients can describe very unusual sensations. We can't provide answers but be reassured that it is a shared experience:
- "It's as if I'm sitting on a balloon"
- "When I'm in the bath I can feel right through to the bones"
- "I have to touch my bottom to make sure it's still there"
- "I often feel as if my bottom has grown and become huge"
- "When I go to the lavatory, I feel as if my bowels are hanging down"
- "I feel as if I've very tight socks on, especially in the heel area"
- "I have a constant burning sensation in the inner thigh and heels, but also get darting pain in these areas from time to time"
- "It's as if an ice cube was put on my skin"
- "I get the feeling of ants crawling on my skin"
- "I feel as if I'm walking on broken glass"
- "I feel as if I'm leaking urine when I'm not"
Walking and balance:
Nerves (or the 'wiring') that control both the strength and feeling in the legs are damaged in CES, so walking and balance will be affected. For example, the legs or part of the legs might be weak (eg dropped foot) and the muscles can waste over time. The degree of difficulty with walking is different in each person some are able to walk immediately after developing CES whilst others will need the help of specialists, such as physiotherapists or occupational therapists.
A gait assessor may help. Physiotherapists will advise regarding exercises to strengthen the legs and also help with walking and balance. Occupational therapists can help by making ankle or foot supports and supplying aids (eg frames, callipers, and sticks). It is important to persevere with exercise as soon after surgery as possible progress will be gradual. Your posture may change so be aware of putting strain on unaffected areas. Exercises improve circulation and can retrain your muscles to help you walk again. You might have to discover a new sport to suit you. Be adventurous and positive.
It is important to wear sensible clothing and shoes to protect areas of numbness you can easily be burned by a hot water bottle, get a blister or develop 'chilblains' without realising. It's important to regularly inspect your back passage for haemorrhoids (piles), fissures (tears) or broken skin. Some patients have even developed pressure sores in the numb areas during their convalescence. The skin of the legs and heels can also become dry and break down check the skin in these areas and use a moisturiser.
If incontinence of urine or stool is a problem, regular gentle cleansing is important to avoid skin damage. "When I came home from hospital, I was very numb around my back passage and I was afraid of being dirty as leakage was a problem. I became obsessed with wiping and eventually the skin broke down."
Page Last Updated: 10 June 2004