MY TALK ON CAUDA EQUINA SYNDROME

I have not been around much today. I was asked to give a short talk to some students about CES and thought I would share it with the forum. This is only my side of the story - it may be different for others.

During the years in which I have suffered Cauda Equina Syndrome (CES), I have often been struck by the tragedy of the condition. Over the course of a few hours, damage occurs to the nerves. In the 18 years since my accident, I have been left with impaired control of bladder and bowel with loss of sexual sensation.

I have learnt to live with these three disabilities. Some days I cope well with bowel and bladder problems and am most distressed by loss of sexual sensation. Other days the loss of sexual function matters relatively less but I am more concerned with faecal incontinence. You cannot just run out of an operating theatre when the call of nature arrives!

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, (as it does in my case) it is possible to walk almost normally and yet have a profound neurological impairment of pelvic organ function. I sometimes wish I was in a wheelchair showing the world a visible sign of my disability. Some folk see 2 sticks and just assume that I have a "simple problem." If only they knew.

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, are unlikely to be able to offer any further support 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.

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.

Nerve regeneration will depend on how long those nerves were crushed and how much damage has been done. The only way to know is to wait. Doctors tell us that if the nerves are going to regenerate it can take as long as two years.

When a nerve is crushed there are three possible outcomes. The nerve may be "asleep" when there is enough pressure to cause it to completely shut down. It will come back if the pressure is removed soon enough.

The second possibility is when there is a little more pressure and the nerve branch, called an axon, is destroyed, but the insulation, called the myelin is still intact. The nerve can re-grow it?s axon if the myelin sheath is still there to give it a guide back to where it is supposed to go. The rate of growth under the best conditions is 1mm per day. That is about one inch per month.

The third condition occurs when the axon is crushed and the myelin sheath is disrupted. The nerve will try to grow its axon, but doesnt have a guide to find its way back to where it belongs. In this case nerve regeneration is not possible, at least not at this time.

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 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.

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 When you feel confident about coping with your altered body, your mental state will improve. In my case, I belong to a spinal injury forum from which I get immense support and there is always a willing ear to listen to any problems that I have.

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).

In my case, I improved most dramatically within the first 2 years, however, due to my work in the NHS, I was able to attend a programme of functional electrical therapy which improved my legs a great deal. Special exercises involving standing and stretching also helped. Until my recent accident in January, I was actually doing very well considering. However, various injuries sustained in January have set things back a great deal.

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.

	Author	Topic: MY TALK ON CAUDA EQUINA SYNDROME (Read 2035 times)
0 Members and 1 Guest are viewing this topic.