Cauda Equina Syndroom

What is CES?

Contents of this page:

General information

Cauda equina is Latin for 'horse's tail'. The cauda equina syndrome (CES) is a rather rare neurological condition, named after the bundle of roots of all spinal nerves below the first lumbar vertebra. These nerve roots spread out like a horse's tail. When the nerves get compressed, this results in all kinds of dysfunction.
Possible causes of the cauda equina syndrome are:

Symptoms

CES-patients have the following symptoms, in various degrees:

Nerve damage

The cauda equina syndrome is caused by compression of the cauda equina nerve roots so that they get damaged more or less severely. Especially these nerve roots are sensitive to damage because they have badly developed connective tissue. Well developed connective tissue protects against compressing influences. The possible recovery of damaged nerves depends on a lot of factors: the amount of pressure on the nerve, age, nourishment, state of health, etc. Because of this, is it hard to give guidelines. Although we might say that, in general, there are three possible situations:
  1. Firstly, the situation that the nerve is just "asleep". The nerve is temporarily shut down when the compression is not very substantial. If the pressure is removed, the nerve function will come back quite soon.A nerve consists of two parts: the axon, which is the inner part of the nerve, and an isolating layer (myelin sheath) around it. When there is a little more pressure, it is possible that the axon is destroyed, but the myelin sheath is still intact. The nerve can regrow its axon if the myelin sheath is still there to give it a guide back to where it is supposed to go. Under the best conditions the axon grows 1 millimeter per day, that is about 3 centimeters per month.
  2. It is also possible that the axon has been crushed and the myelin sheath is disrupted. The nerve will try to grow it's axon, but doesn't have a myelin sheath to guide it's way back. Recovery is unlikely in this situation.
While reading what has been written above one has to consider that recovery is taking place on a cellular level. A nerve consists of many cells. Some nerve cells will come back right away, others take more time, still others won't come back. If there are enough nerve cells combined coming back, there can be return of nerve function. With some patients, nerve recovery appears until 3 years after the injury. Often it is very difficult to predict how much recovery will occur, especially right after the injury.

Treatment

Treatment exists of surgical decompression of the compressed nerves. In the medical field there is a controversy about the time that this surgical decompression should take place. Depending on the cause of the compression, decompression has to be performed as quickly as possible, or it can wait. Earlier literature supports surgery as soon as possible. However, recent literature shows variable results. It turns out that there is not much difference in recovery when the operation takes place within 24 hours or within a few days. It is agreed, however, that every sudden loss of bowel- and/or bladderfunction is a medical emergency that requires immediate treatment.

After the operation the symptoms often don't (immediately) disappear. In many cases a long period of rehabilitation is needed. In general, most recovery takes place in the first year after the operation. In the second year there can also be recovery, and even in the third year. After that, the chance of further recovery is very small. The degree and pace of recovery strongly depend on how much nerve damage there is. More about that further down this page.

Rehabilitation

The treatment of a cauda equina syndrome (CES) takes away the cause, but the consequenses can remain afterwards. If the nerve is able to recover by regrowing, these consequenses are temporarily. If this does not happen (completely), the consequenses are permanent. In both cases it is wise to treat or compensate the consequenses as well as possible. This is the field of rehabilitationscience.

The nerve roots that are damaged by the CES are named after the vertebra under which they leave the spinal canal. Most common it involves the nerve roots L3, L4 and L5 (named after the lumbal or loin vertebra) and the nerve roots S1, S2, S3 and S4 (named after the sacral vertebra or the fused lumbarspine).

The following part contains information about rehabilitation after a CES.

Mobility disorders
The movement of a joint in the leg is brought on by a teamwork of different groups of muscles. These groups of muscles are powered by three nerve roots. So the subjoined schedule is a simplification of the more complicated reality.

Nerve root Movement Consequences of disorder while walking
L2-L3-L4 Stretching and stabilising the knee The knee is overstretched to prevent giving at the knee
L4-L5 Lifting foot Drop foot
L5-S1 Stabilising hip Giving at the hip or "Trendelenburg-walk"
S1-S2 Stretching foot Heelfoot

Wanneer een spiergroep gedeeltelijk verlamd is, zal worden geprobeerd door oefentherapie deze op optimale sterkte te brengen. Leidt dit niet tot een aanvaardbaar looppatroon, dan zal men dit verder compenseren met hulpmiddelen zoals een aangepaste schoen, een beugel, een rollator, stokken, krukken, etc. en eventueel een rolstoel. Deze hulpmiddelen kunnen ook tijdelijk worden gebruikt wanneer er van neurologische verbetering sprake is. Is de uitval blijvend en is er geen kans op verdere verbetering, dan kunnen sommige verlammingen gecompenseerd worden door een operatie waarbij de aanhechting van pezen verplaatst wordt.

Bladderdisorders
In the bladderwall a thin layer of muscles pushes the bladder empty. Near the exit of the bladder there are sphinctermuscles to hold the urine. The bladdermuscle and the sphinctermuscles are powered by the nerve roots S2, S3 and S4.

Paralysis of the bladdermuscles
A disorder of the nerve roots S2, S3 or S4 can cause the bladdermuscle to get (partially) paralysed, so that urine remains in the bladder. This can cause urinary tract infections and/or stones in the bladder.

Right after the onset of the CES, treatment usually consists of putting in an indwelling catheter, also to prevent overstretching of the bladder. This indwelling catheter can not stay in too long because it gives a higher chance of urinary tract infections. If the bladder, after removing the indwelling catheter, can not be spontaneously emptied, one passes to intermitting catheterisation. This means that the bladder is emptied four to five times a day with a disposable catheter. If the bladder recoveres and it is possible to urinate spontaneously, the number of times of catheterisation is gradually lowered and can sometimes be stopped completely. If catheterisation remains necessary, the CES patient learns how to do it by him- or herself.

Some people with a CES do not need a catheter, but are able to urinate on their own by pushing with their stomach muscles. This method can only be used if it is established that the bladder can be emptied completely this way.

Paralysis of the urethral sphincter
When the urethral sphincter is completely of partially paralysed due to the damage of the nerve roots S2, S3 or S4, one is not able to retain the urine and is incontinent for urine. To prevent this, the most important thing is to empty the bladder on time by urinating spontaneously or by cathing, even if there is not any urge yet. If this is insufficient, one can use absorbent products. For men there are condom catheters or urinals which can, for instance, be put around the penis. For women there are many different kinds of diapers. If the dysfunction is permanent, for women there are operations to improve the continence.

Boweldisorders
Obstipation
Dysfunction of the nerve roots S2, S3 or S4 leads to the decrease or disappearance of the sensation of getting full bowels in the last part of the intestine (the rectum). Because of this, there is no reliable urge to go to the lavatory anymore and the reflex of the bowels to empty themselves does not get going anymore. The bowels gradually get too full, which causes the bowelmovement to decrease. This causes stomach-ache and can lead to faecal incontinence.

When the relief problems are relatively mild, sometimes a high fiber diet and drinking an adequate amount of fluids is enough to keep the bowels going, possibly combined with taking extra fibres (for example powder which is dissolvable in water). If this leads to relief at least twice a week, stronger methods are not necessary.

With more severe problems, treatment consists of stimulating the motion at fixed times by giving a stimulus in the rectum. This evokes the motion. One can try this with microclysma's which give a relief reflex five to twenty minute after putting in. This method can be supported by a diet and laxatives, taken orally.

If one does not succeed in getting a regular reliefpattern with microclysma's, one can try bowel washouts. This means putting a certain amount of water in the rectum with a pumpsystem. After that, the faeces get flushed out together with the water. There are different types of pumpsystems and flushing techniques. To find the right system and the best technique, one can turn to a rehabilitationteam which is experienced in this field.

Paralysis of the sphincter
If the sphincter does not function well anymore, this can lead to flatulence or, in more severe cases, to faecal incontinence. Flatulence can not be helped. Maybe a diet can help to prevent the forming of gas. In the case of faecal incontinence, regulation by microclysma's or flushing the bowels can offer a solution.

Sexual disorders
Sexual disorders in men
CES can cause the erections, the ejaculations and the orgasms to be completely or partially disturbed. Erections are caused partially by seeing or remembering erotic images (psychogenic erections) and partially by touching the penis (reflex erections). The psychogenic part of the erection leads through the spine above the cauda equina and therefore is not disturbed by a CES. Reflex erections go by way of the nerve roots S2, S3 and S4 and they are disturbed by a CES. Because the psychogenic part of the erection remains intact, erections after a CES usually have not disappeared completely, but are weaker and more briefly than before. If one wants treatment, there are erection-improving medicines (for example ViagraŽ) or injections which can be given into the penis. There are also vacuumpumpsystems with which the penis can be erected.

Ejaculations can get seriously worse or even absent due to a CES. If this does not improve spontaneously and there is a childwish, there are techniques to artificially evoke an ejaculation and artificially fertilize the partner with this seed.

Whether or not an orgasm is possible, depends on the seriousness of the damage of the nerve roots S2, S3 and S4. With partial leasions sometimes an orgasm is possible with the help of a vibrator.

Sexual disorders in women
CES can cause disturbance in getting moist, in sensation in the vagina and in the strength of the pelvic floor muscles. These dysfunctions can or can not be accompanied by disturbed orgasm. Orgasms can be evoked with the help of a vibrator. To do something about the lack of getting moist, there are lubricants on the market. In cases of partial dysfunction of the pelvic floor muscles and during recovery, training the pelvic floor muscles can improve the situation.

Getting help
The described sexual disorders can lead, for men as well as for women, to problems in making love and in the relationship. Specialised rehabilitationteams have experience with such problems and are able to get people with a CES and their partner on the right track. With more complicated problems they can fall back on the advice of a sex therapist.

Revalidatie, where to get it?
As stated earlier, the neurological recovery of part of the dysfunctions is temporarily, but another part can be permanent. That is why some rehabilitation measures are temporarily and others are permanent. In all cases, early specialist rehabilitation advice is recommended. Try to find a rehabilitationcenter that has specific knowledge about paraplegias.

Mental aspects

CES is a relatively unknown condition that has a big impact on the daily life of the person that suffers from this syndrome and often also on the lives of the people around him or her. For the outside world, the motor dysfunctions are visible and easy to talk about. However, it is often embarrassing to talk about the things that don't function inside (bladder, bowels, sexual organs). The experience of patients is that doctors will rarely initiate talking about the subject 'sexual dysfunctions'. Whilst from CES patients' stories it is known that especially the "internal problems" cause much grief and limitations. For example the patients who, sometimes in the prime of life, have to accept that they will never have an orgasm again or that they will have to use incontinence-pads for the rest of their lives. And it is hard to run the risk, wherever you are, to have a sudden attack of diarrhoea.

Apart from these CES-specific problems there are of course the problems every patient encounters: being dependent of the generosity of others, not being able to go wherever you want to go and to do whatever you want to do, feeling like you are a disabled human being and no longer a worthy member of society, not being able to carry out your occupation. For CES-patients, as for many people who have a condition, the sharing of experiences with fellow CES-patients can help in the fysical and mental process of recovery. On this website, different possibilities are mentioned to email with fellow CES-patients.