Personal stories

As you can read elsewhere on this website, the time for recovery for the cauda equina syndrome is roughly one-and-a-half to two years. But no doctor can tell exactly how much and when you will recover. On this page you can read the stories of a few patients. If a conclusion can be drawn from these stories, it is that no-one has exactly the same symptoms and the same amount of recovery. It is very difficult to predict how this condition will develop. The stories of these people provide examples of how the process of recovery can be. And maybe these stories in itself give hope to people who haven't got this syndrome for long yet, because it is clear that people who have this condition a little longer, are generally able to get their lives back together with the fysical limitations they have.

Man, 27, cauda equina syndrome for 2 weeks
Man who had surgery within 60 hours, with relatively mild symptoms and hope for a quick recovery.

Woman, 28, cauda equina syndrome for 1 month
Experiences and thoughts of a woman who had surgery just one month ago.

Man, 50, cauda equina syndrome for 4 months
This man had surgery just in the nick of time and reports a good outlook on recovery.

Man, 39, cauda equina syndrome for 8 months
The diagnosis 'caudasyndroom' was made relatively quickly and surgery was performed also quickly.
The story of a man who almost completely recovered.

Man, 47, cauda equina syndrome for 10 months
The story of a man who had surgery 12 hours after his lower body got paralysed,
he was in a wheelchair after the operation, but after 10 months he can walk again without aid.

Woman, 36, cauda equina syndrome for 1 year
She had surgery within 48 hours after the first signs of dysfuntion,
recovered relatively quick at first, but her condition worsened after 8 months.

Man, 39, cauda equina syndrome for 1 year
Man, who did not get surgery on a herniated disc due to mis-communication with the hospital,
and developed CES with severe, probably permanent symptoms, tells his story.

Woman, 31, cauda equina syndrome for 1 year
After two operations on a herniated disc this woman can walk again, but still has problems
with bladder, bowels, skin and balance. Luckily, there still is slow progress.

Man, 42, cauda equina syndrome for 2 years
Personal story of a man who had surgery on a herniated disc within 24 hours after having acute severe symptoms
and since then has recovered almost completely, to about 95% of the level he was on before CES.

Man, 38, cauda equina syndrome for 2 1/2 years
Man who had surgery about 10 hours after dysfunction of his lower body,
has since then slowly and partially recovered and now works 32 hours a week.

Man, 40, cauda equina syndrome for 3 years
Story of a man who had surgery within 12 hours after the onset of the cauda-symptoms
and almost fully recovered in 2 years time.

Man, 47, cauda equina syndrome for 3 1/2 years
This man got CES as a result of a bleeding in the spinalcanal after surgery on a herniated disc.
Although his recovery has been partial, he is now working 40 hours a week again.

Woman, 40, cauda equina syndrome for 8 years
A woman, who had sugery about 60 hours after the dysfunction of her legs,
tells how she recoverd fairly well since then. Her recovery carried on right through the third year after the operation and one year ago she delivered a baby daughter without any problems.

Man, 27, cauda equina syndrome for 2 weeks:

On Sunday July the10th 2005 I drove back home after visiting my girlfriend in Brabant. After a two hour drive I got out of the car and had a terrible back ache. As I had been a back patient for about 5 years, I didn't give it much thought. The next morning I wanted to walk the dog. At the streetcorner I got a paralysing feeling in my legs and at that moment I couldn't go on. I called in sick at work but I stil didn't worry very much.

During the day the symptoms got worse and during the night I noticed that the strength in my legs declined.

In the night from Monday to Tuesday I had intense pain in my lower body and I didn’t feel my legs from time to time. At 6 a.m. I called an ambulance and they said I had to call the doctors night service. They referred me to my GP who would start at 8 a.m.

Tuesday at 8 a.m. precise I called my GP. He would have muscle relaxants delivered. Luckily my girlfriend was able to come and she supported me really well, but the pains were so intense during the whole day that it wasn’t any fun for her, too. I moved through the house with a desk-chair with wheels so that I could at least go to the toilet.

On Wednesdaymorning I called my GP again. He would come and visit at 6.30 p.m. to see what was going on. The muscle relaxants only helped to relieve the pain when I combined them with strong painkillers. Finally, at 7 p.m., my GP came and after I told him I couldn’t urinate and had obstipation, he diagnosed me with the cauda equina syndrome. He immediately called an ambulance and I was at the hospital at 8.30 p.m. After an MRI scan I got surgery at once.

On Thursday I was still dull from the anaesthesia. On Friday a physiotherapist came by and I started physiotherapy on Monday. On Tuesday, after getting an indwelling catheter, I was discharged from the hospital. I am now rehabilitating with my mother because I can’t do many things by myself.

At this moment (one-and-a-half week after the operation) I walk rather well, at most one hour a day. For longer distances I use the wheelchair. I go to physiotherapy twice a week. We do some exercises for stretching my back and legs and that is tough. These exercises I also do at home. At the physio I also practice on apparatus for stomach- and backmuscles. Per session I walk 5 minutes on the crosstrainer, 5 minutes on the conveyor-belt on very low speed and I sit on a bike for 10 minutes. My bowels are practically normal again, but the urine still mostly goes through the catheter. Sexually it is okay, I am able to get an orgasm, but the feeling in the penis is still a lot less than before.

All in all I can say that I have cought this on time and therefore haven’t got all the symptoms other people with the cauda equina syndrome have. I hope that my recovery will be swift and that in time I’ll be able to do a lot more.

Woman, 28, cauda equina syndrome for 1 month:

Four weeks ago I had surgery for a herniated disc with dysfuncion, in other words: the cauda equine syndrome. My life is upside down at the moment. It all happened very quickly. Over six months ago I got trouble with my back. My GP sent me to the fysiotherapist, who treated me until last month. But nothing worked and nothing pointed to a herniated disc. On Wednesday the 17th of November the pain got so bad that I went to the fysiotherapist again. On Thursday the 18th of November my legs gave way while I was in the shower. At night, my GP came. He said I had an acute hernia. Nine hours later I was paralysed from my hips until my feet. My left leg was the worst. Luckily I was on the operating table within 24 hours. I had surgery for a double hernia. In a situation like that you don't realise what is happening. Now I am in a rehabilitationcenter in Friesland. The worst are my bowels, I don't feel anything. Absolutely nothing. I am a 28 year old woman and I constantly think: " Do I have to go through the rest of my life like this?" " Will I ever have sex again?" I know I must not think like that, but I do. Still, I am a very positie person with a lot of perseverance. So I know for sure that I shall learn to walk again.

Man, 50, cauda equina syndrome for 4 months:

I was having severe problems with my back for years, but during the christmas holidays of 2004 the situation got worse. My holidays fell through and even treatment from my chiropractor could not bring any relief. But stifling the pain, like I had done the previous years, was not possible anymore at the beginning of March 2005. I took 6 to 8 muscle-relaxing pills and painkillers a day when the maximum you are allowed to take is 3 in 24 hours. On Monday the 14th of March I called in sick at work because I could not put on my socks and pants anymore, and lying down, sitting and walking were very problematic. That afternoon I stumbled to the hospital in my neighbourhood with a referral note from my GP. X-rays were taken, but they showed nothing abnormal. Because I was unable to move, the neurologist decided to keep on the safe side and he wanted to take an MRI from my back. Unfortunately, this could happen only a week later. On Thursday the 17th of March I could not do anything without help and the pain got really unbearable. No matter how many painkillers and muscle-relaxing pills I took, it did not help anymore. In the evening I noticed that I didn’t feel my left lower leg and foot. My wife called the night doctor. He didn’t come and advised to “take an extra aspirine, that will get him through the night”. On Fridaymorning I had totally lost control of my lower body (I didn’t notice that I let go of my stools) and my wife called our GP. He came at once and he was very alarmed.

I was taken by ambulance to the Westeinde hospital, where I got emergency surgery. Before the operation, the surgeon told me that the chance of a full recovery was only 70% at best because a good many hours had passed between the disclosure of the first symptoms and the operation. Taking action within 24 hours is the best and in my case I was balancing on the brink. After the operation I was in intensive care for two days and after that another four days in a normal care unit. On Tuesday the 22nd of March the catheter was taken out because my bowel- and bladderfunctions were recovering. On Wednesday the 23rd of March I shuffled through the hospitalroom and up and down the hall with a walking-device. The surgeon that had operated me told me, just before my release from the hospital, that I truely had had a narrow escape.Now, 14 weeks after my surgery, I still have dysfunction (numbness) in my left lower leg, in three toes of my left foot and in my right thigh and buttock. The neurologist has told me that the recovery-process will be slow and that I have to be patient, but that he expects most functions to return within 1 to 2 years. It is also pleasant that, after my rehabilitation (which is rather difficult and sometimes painful) I’ll be able to return to my job. That is a big relief because my job as an architect means that I have to be able to climb stairs, stoop, crawl, etc. Climbing a scaffolding in a wheelchair is not possible and if things had gotten the wrong way, I would not only have been permanently disabled but I would also have lost all the things I am very much attached to: my house, my social life but also my job!

As far as work is concerned I am very lucky because my colleagues have supported me from the moment I was in the hospital. Many employers hurry their ill employees and even fire them because they are “not useful” anymore for the company or the organisation. Because of what has happened to me, I now realise every day how vulnerable a human being is, and when I read the stories of fellow-patients, the twinges, the blocking and cramps I still have are nothing compared to the burden some have to bear. Those people I can only wish all the best and all the strength in the world.

Man, 39, cauda equina syndrome for 8 months:

It was on Friday the 23rd of December 2005. While I was pushing a table, I got a sudden pain in my back. I felt immediately that something was not right. My back and legs hurt very much. That night, at home, I lay down on my bed. I slept badly and called the doctors-station on Saturdaymorning. I could come immediately. The doctor thought I had a herniated disc. I got some painkillers. Between Christmas and New Year I went to my own family doctor, the pain had lessened a bit then. My right leg and also my right foot were a bit numb. I could not stand on the toes of my right foot. My doctor sent me to the neurologist and the fysiotherapist. I got a nerve test. Result: no deviations. I also got an MRI scan. Result: a huge herniated disc!! The pain had already decreased then. Because of this, the neurologist thought the neurosurgeon would decide not to operate, the numbness in my leg and foot would just need time to recover. With the help of fysiotherapy I got the strength back in my foot.

At the end of June 2006 the pain in my back suddenly returned. After a few days I made an appointment with my family doctor because my back and legs hurt more and more. I also had a numb feeling in legs and bottom. The doctor suggested fysiotherapy again, but the pain got worse and unbarable. The next day I called my family doctor again. He sent me to the neurologist. Surgery was the only solution. It was Thursday the 29th of June then, and I could go to the neurologist on Wednesday the 5th of July. He asked if I could still go to the toilet. Due to the pain in my legs that was hard, but I could still do that. But once I was back home, I couldn’t anymore. At night I tried to sleep, but didn’t succeed because of the pain and a full bladder. I called the doctors-station. Luckily I got someone on the phone who acknowledged that I needed a doctor right away. The doctor put in a catheter and my bladder was emptied. This doctor mentioned the word ’caudasyndrome’ and said I had to call my family doctor in the morning. I did, and had to go to the hospital straight away. The neurologist had me taken to another hospital by ambulance. I got surgery that same night for the herniated disc with caudasyndrome. After the operation, the pain had gone, but my legs and bottom still felt numb. The next morning I could stand next to my bed, but I could not urinate and relieve myself and the catheter was still in my bladder. A few days later I could go home, but I still had problems with my bowels.
A few days later I could empty my bladder by selfcathing. My bowels were soon functioning better. With the help of a rehabilitationcenter I exercised. The strength in my legs took a while to get back so I was not allowed to drive a car. But my recovery was rather swift, I was allowed to drive a car again mid September. At the beginning of October I could work again for 50%, in November for 75% and on the 1st of January 2007 for 100%. The numbness in my right leg and foot is still there, but it doesn’t interfere with my daily work als a field-work employer, with lots of driving. After consulting my rehabilitationdoctor I have been skiing mid February, without any problems. The tight ski-shoes supported my numb foot perfectly.

Conclusion: because, in June last year, my family doctor reacted adequately on my problems and because I got a quick surgery, I was able to recover fairly well from my herniated disc with caudasyndrome. So, fortunately, it is possible to recover quickly from a caudasyndrome. The question remains how long I still have to deal with the numb feeling in my leg and foot. Maybe that numbness will never go away.

Man, 47, cauda equina syndrome for 10 months:

I had experienced some sciatica on the left side/left leg on and off for a year or so, and more severely a day or two prior to the CES. One morning I woke up totally bilaterally numb and totally paralyzed/numb below the waist. I had surgery 12 hours later with a very good neurosurgeon.

I went from wheelchair to walker to crutches to cane ... and I now walk without the cane. I still limp, although that is improving steadily. If I am indoors on a level surface I can, with care, walk so that one would not notice anything odd about my gait. If you were to see me one day, and then not see me for a week, you'd notice the improvement. My right thigh is largely recovered. I can press 350lbs with it now. I can't stand on my toes yet, though, although I can stand and walk on my heels. My left leg is about halfway back. There are numb parts in the calf and shin, although I can feel heat, cold, tell the difference between sharp and dull touch, itch from bug bites, and so on, so the numbness there is now only partial. The feeling as well as the strength are steadily returning to my left foot.

Bowel/sphyncter function, while nowhere near normal yet, is returning. I am steadily gaining control over flatula (wind) and function. I now rarely take laxatives or fiber. Urinary function, while not back to normal, is also steadily improving. I still 'push' to fully urinate, but can now initiate urination and rid myself of perhaps two-thirds of my bladder content by merely 'releasing', as before the CES. I do use the toilet more often than before, though. I tend to have, say, two or three smaller bowel eliminations when, pre-CES, I would have had only one. Sexual function is returning these last few weeks, and I expect that things in that department will be fully functional before much longer. I am about 70% of the way there now in terms of sensation and function.

I still have residual loss of feeling in the saddle area, in the left foot (lots of tingling lately, though; my right one did that as feeling returned), and in the left calf and shin. It's no longer total numbness, though, even in the worst areas, and it is still returning. I dislike sitting on a hard surface. It bothers my back and seat, still. Padded or cushioned surfaces are much better. If I am going somewhere where there are only hard seats and I intend to spend more than a short time sitting, I sometimes bring a lumbar cushion that can double as a seat cushion. My wife found a great seat cushion for my car. It plugs into the cigarette lighter and provides lower back, upper back or lower thigh massage, separately or in combination, in variable intensity. Great for longer drives. It is so nice for loosening up the lower back after a long day in the office!

I am an attorney. I have been back to work since a week after the surgery, working from the hospital rehabilitation unit, and then from home. I began going into the office for short periods about 4 weeks post-surgery, while still in a walker. I was back in court after about 3 months, although that was perhaps a bit soon: I was exhausted a lot and may have slowed my recovery by working too soon. I am fully up to speed now in terms of my ability to work. My energy level is returning, although I am still much more tired at the end of the day than pre-CES, because just everyday activity takes lots more effort than it used to. There is definite incremental improvement, though; it's tangible.

I can climb stairs without a handrail, but only if I lead with my right leg exclusively. The left one is not strong enough to lift me on it's own. With a handrail, I can put the left leg forward going upstairs, as well, but still with difficulty. Going downstairs with one handrail, leg-over-leg, is no problem. I am not unduly unhappy with this, because 6 weeks ago, I could not "lead" with the right foot going upstairs, at all. I am fully independent in most of my daily life, although one of the kids will sometimes retrieve things from upstairs for me, rather than having me make the climb. In addition, I am not ready to go backpacking quite yet...and conserving energy is still something of which I am very aware.

Given my recovery thus far, I expect to start hitting a racquetball again in 1-2 months time. I will accept nothing less. My goal is to play competitively, at least in recreational doubles, within 4 months. From the research I have read and from the stories I have seen on the site, I appear to be damned lucky. My neurosurgeon thinks so, as well, and is writing a medical article on my case. From the beginning, I would accept nothing other than full recovery: "Winning isn't everything, it's the ONLY thing". My neurosurgeon thinks that this sort of approach is very beneficial...who knows? All I can tell you is that the last thing I said to my neurosurgeon as I went into surgery was "I'm going to walk in 5 days". I actually "walked", using the walker, in 3 days, mainly on my hands...but being an invalid was unacceptable. That has been, and remains, my attitude about this.

Woman, 36, cauda equina syndrome for 1 year:

I got the cauda equina syndrome from a doublesided herniated disc on L5-S1. I had had low backpain for several months then, stabbing pain in my left leg through to my small toe, numb spots on my skin, saddle area, I didn't feel it if I had to urinate, I had to go to the bathroom a lot (hypersensitive bladder). The last two days before surgery I could not urinate anymore and I also had loss of strength in my right leg, the inner side of my upper legs was numb and I couldn't walk anymore. I was operated on within 48 hours, at 2.30 a.m.

Right after the operation I didn't have any feeling in both my legs, no reflexes on the left side and I couldn't urinate (only with a catheter). After a few days I could urinate a little on my own. Walking got a bit better after about 8 weeks and a lot of training. At the left side I still have weakness in my leg and a dropfoot. The pain and weakness in my right leg has quickly gone away, but that has come back about 4 months ago. I also sometimes have problems voiding fully and my walking got worse (falling over). I don't have heavy backpain anymore, just a very tired feeling in the lower back.

About training/rehabilitation: I start every day with 20 minutes of exercise (stretching), I walk 3 times a day 10-30 minutes (depending on the dysfunction) and at night I do half an hour of fitness-exercises to strengthen my muscles. About 6 months ago I started working again, first on a therapeutical basis, then half-time, and then 32 hours a week. It got worse and worse, I work in health care and stand/walk 7 of the 8 hours I work. For about a month now, I am home again and new tests are being done. It looks like I have to search for another (sitting) occupation. I have trouble accepting that I am not able to run anymore (hobby!) and that, since about a month, I am on health insurance again because my legs won't cooperate. Apart from that I am quite positive and optimistic, I keep telling myself that the cauda equina syndrome is tough and brings fysical limitations, but that I won't die from it!

Man, 39, cauda equina syndrome for 1 year:

That day, I had been at home laying parquet on the floor and that night I went jogging. Suddenly both my legs gave way and I fell. I didn't have any feeling in both my legs, faeces and urine just run down my legs, I didn't even feel it, I saw it later. The terrible pain in my lower back was indescribable. After having lain there for about 10 minutes, I got up and managed to get home. The next week I contacted the neurologist. I got the assistent on the phone. Because I wasn't clear enough, she thought it was about my neck (I had been treated for a neck-hernia HNP C6/C7 left by a neurologist). I could come two months later. After an MRI the neurologist concluded that there possibly had been a big disc prolaps on lumbar level with a cauda equina syndrome as a result with partial recovery and a bulging disc at L4/L5. And also current pseudoradicular problems on the basis of S1 strain. At the time, I had pain in my lower back, numbness of the legs, I couldn't move my toes, waggled like a pinguin, didn't have any feeling with the last bit of urine, so that I didn't know when I had finished urinating, pain in my bottom, under my scrotum, numbness of my thighs, I could hardly lift my left leg, I hardly had any sphinctertone anymore, so that I was incontinent, numbness in the sexual area, not being able to have an erection anymore or not being able to keep one for long, spermproduction almost stopped, this is because of the sperm vesicle that isn't really pulled in anymore, you can compare it with a balloon, if you squeeze it hard, the water quirts out, if you squeeze gently and gradually, the water leeks out.

I didn't have surgery. When I had the MRI after 2 months, the bulge had disappeared, so surgery wasn't necessary then. Later tests have shown that I will be faecal incontinent for the rest of my life. My sphincter-tone can't be fixed, the nerves are so damaged that recovery is impossible. Partly because my sphinctermuscle doesn't function, I have a bursa that comes out after every stool. Removing it is not possible because then something else will come out. Walking is almost impossible, I have a scooter so that I am as mobile as possible around the house. I still can't feel the last bit of urine, according to the urologist that is because of my bladder muscle. I still have horrible pains in my lower back, my right leg also feels more and more uncomfortable. If I have rode my bike and I want to get off, I don't have any feeling in both legs, I have to stand still for a while before I can walk. Also when I get up, it happens that I get a shooting pain in my right leg. Both my knees give way sometimes, I also have problems with my pelvis, I still have pins and needles in my feet,I can't lift my small toes in my left foot. In my leg and in the saddle area the colour of my skin is different and there still is numbness of the skin the size of a boxershort. Recently a caudogram was made, but that showed nothing, so where these symptoms come from, the doctors don't know.

I haven't had any rehab yet, I had therapy to be able to use the bladdermuscles and the sphinctermuscle as well as possible. Unfortunately I didn't have any result although I got some useful tips. At the moment I don't work, although changes are being made at my workplace. I sometimes feel like I take two steps forward and then three steps back. People are surprised when you say that you don't want to receive any social benefits, that you want to work. You have to find the right people first who understand you and then maybe a small miracle will happen. It doesn't matter if you have been working for a boss for a long time. I have been working for the government for 20 years, they recite the laws for other people, but don't abide by them themselves. I don't want to do another job. I have an office job and there is nothing wrong with my brains or with my fingers to type. Mentally I especially encountered the lack of understanding of other people. On the outside I look normal. On the men's toilet there usually are no sanitary towel bins. At my office they are in the men's toilet, especially for me, but my colleagues make remarks about it, even though they know it is for medical reasons. The bins are put outside the toilet or they hang notes on the door saying: ”We real men don't need this”. I feel like I am no man anymore. Anticipating on everything, not being able to go away spontaneously, guarding what I eat. Losing my self-worth. I haven't accepted yet that I have the cauda equina syndrome. From one day to the next you don't count anymore and you are dependent on others. The thought that I will be incontinent for the rest of my life, probably won't have an erection ever again, no more spontaneous sex, I always have to remove the sanitary towels and wash myself. Not knowing when I have to go to the bathroom, my stools can come out any time.

From one moment to the other I have become a totally different human being. I still have problems accepting my situation, I often am very unpleasant company for my family. Many things I can't do anymore, like playing with my kids, playing soccer, jogging, certain sports. I am not the father I wanted to be, I feel like I have let down my family. But I keep on fighting and I will work 36 hours a week some day. Because me and my family will get through this. I love my children very much and my dear wife to which I owe so much.

Woman, 31, cauda equina syndrome for 1 year:

I got an acute caudasyndrome as a result of a doublesided herniated disc at L5-S1.
It started at the 5th of July 2006 with muscle-pain and a stiff feeling in my back. After that, the backproblems got worse and I also had radiating pain and dysfunction in my rightleg and rightbottom, sometimes together with numbness. My GP thought it was ischialgia. I had to rest for 2 weeks and I got painmedication and muscle-relaxants. The days after, the numbness got worse and I had longlasting, severe nervepains.
Accidentally, I had an appointment with a neurologist at the 11th of July for problems with my wrists. I also told him about my severe backproblems and dysfunctions, and that I had the urge to urinate but that I often wasn’t able to. After a quick test, he neurologist diagnosed me with ischialgia. So it was not a herniated disc, what I began more and more to suspect it was (so, in retrospect, the neurologist had got it wrong!). That night I got dysfunction of the muscles of my left bottom and I called my GP. I got stronger painkillers. The pain was now unbearable. On the 12th of July there was dysfunction of my left leg. I was incontinent twice without noticing it. There was also urine-retention. I could still walk slowly, I didn’t give at the knees despite that I almost didn’t feel my legs anymore, which was a nasty feeling. I went to my GP again and now he diagnosed me with caudasyndrome. I got an MRI and had emergency surgery that same night. On the 14th of July I had a second operation because not all the pressure was relieved from the nerves. Three quarter of my vertebra was removed. After the operations I was very relieved that I could move my toes and I was very glad that the pain had almost gone.
At the 24the of July I got released from the hospital. After that, I had rehab for 3-and-a-half month at the hospital. Starting with three times a week, which was slowly reduced. I also had therapy to train my bladder- and sphinctermuscles for a while. I was glad that I was able to walk in the end, that was the most important thing for me! But apart from that, I still have severe dysfunction. In the beginning, I had to cath 7 to 8 times a day, now twice a day. Apart from that, I can urinate fairly well, with the help of pushing my bellymuscles. I have an urge to urinate and to relieve myself. For my bowels I get laxatives. I now also have medication to prevent bladderinfections (which I got time and time again). In the saddle-area it seems like some feeling has come back, but the progression is very limited. The skin at the back of my legs has less sensation. I still have some problems with my balance. And sometimes I got a stinging feeling at the edge of my right foot when I am standing of walking for a long time.

Given the circumstances I am doing fairly well, there is very slow progress. I have to start at the bottom with a lot of things. What I can do on a day, depends on the tiredness and the pain in my back. I do fysiofitness twice a week with the aid of a physiotherapist and I go swimming once a week, I have to say that helps me to feel good. Though I am still very tired when I have exercised, every effort still asks a lot from my body, this still interferes with my everyday life.

But all in all I shouldn’t complain about how I am doing at the moment. I realise that it could have ended differently and that I am lucky to be able to walk again. The neurosurgeon, that performed the surgery, didn’t expect that to happen.

I worked as a nurse in a nursing-home and I now perform light tasks twice a week for 2 to 3 hours. Unfortunately I can hardly do anything because of my lack of energy.

The surgery is almost a year ago now and I have to be patient and wait and see what I can achieve in the long run. As for work, I hope to be able to do something in health care again, but that will probably be in a different position. In general, I am fairly positive and optimistic, but of course I also have a bad day now and again. I really have had to lower my ambitions and still have trouble accepting that. Also there is the unsecurity about what the future will bring. But we keep up our courage.
Before, I never had any problems with my back. My story shows that in one week a lot can happen and your life can be turned upside down. I now realise how vulnerable a human being can be and that it isn’t all that self-evident that you are healthy.

Man, 42, cauda equina syndrome for 2 years:

Monday the 6th of May 2002 I wanted to tie my shoes. I couldn't reach them because I had backpain. I thought "Just push a little", and while I did that, I felt a twinge going through my back. I already took painkillers and musclerelaxants then bacause of backpains. These pains had started around my 15th and had varied ever since. The rest of the evening I hung in a chair. In bed I couldn't lie down due to the pain. That night I sat in a chair and watched television. The following day my GP visited me at home. He did some tests: I had to stoop, stand on my toes, etc. That went well. That night I felt I wasn't standing very firm on my legs anymore and I couldn't sleep again because of the pain. I slept in a chair again. When morning came, I noticed that walking got more difficult. When my wife and children got up, we had breakfast and I sent them to the zoo, it was a holiday. Looking back, I see now that that was pure denial, from myself as well as from my wife. When everybody had left I wanted to go to the toilet and I noticed that I could just go on all fours. I have pulled myself up a desk-chair and rolled to the toilet. While urinating I noticed that I didn't feel anything, I just heard the sound of the urine falling in the toilet. I then called the GP again. He came a bit later and by that time my lower body was completely paralysed. The GP had me taken to the hospital by ambulance. In the meantime my wife had come home; the children were staying with friends. It was only until I couldn't get on the stretcher and the ambulance-nurses had to lay me on it, that I realised that something was really wrong.

In the hospital the neurologist on duty suspected quickly that it was CES and he had an MRI made. When the result came - I was just installing myself in a hospitalbed - he came to tell me that I had to go immediatly to another hospital to get surgery. The quicker the surgery, the bigger would be the chance of recovery. That night I had surgery at 1.30 a.m. In the morning the doctor asked me if I could move my toes. I couldn't. I asked him how my prospects were. Answer: "It will take time, but it will be allright." That was very reassuring for me and my wife. A day later, back in the hospital in Ede I got the same information: "It will take time, but it will be allright." Reassured, I have given myself over to the treatment and enjoyed my rest that weekend (funny, isn't it?). The next day, monday, the neurologist came to me with bad news. The recovery was so slow (in fact, there wasn't any recovery), that he didn't dare to predict the end-result. "It will be somewhere in between where you are now and where you once was", he said. The funny thing is that I can't remember anything about that conversation except the tone of it and the anger I felt towards him. Later that week we have talked again in the presence of my wife and her sister; you yourself are too emotionally involved to be able to listen well and to ask questions. The doctor then explained that the first 48 hours are a good forecaster for how well you'll recover. Since my condition hadn't improved in the first 48 hours, the doctors didn't know how it would go. At the end of that conversation I tried to explain to the doctor how I had experienced our first talk: no memory, my anger towards him. He totally overreacted and got angry at me. I discussed this with him in a third talk and then he understood what I mean. I can't understand why a man like him, with so much experience, has so little notion about what you go through as a patient when you hear such a diagnosis/prognosis. You can't digest such things coldly, the emotions run too high, the denial is too deep.

From the hospital I went to a rehabilitationcenter. Everything goes so fast: one week you're in the daily routine of your job, the next week you are in a rehabcenter. In the meantime my wife was alone at home with two kids (7 and 6 years), a job, the household and with a husband in a rehabcenter. It is remarkable that I was so self-absorbed with my recovery that I haven't thought about how she would get by at home. Luckily, there were two other people in the center that also had CES. One was progressing quicker than me, the other less quick. From day one I had, with help from my wife and kids, looked for information and found it on www.cauda.nl. From most stories I understood that recovery can be good in the first year, less in the second year, and that you have to count your marbles after two years; that's it. That helped me enormously. From the start in the rehabcenter I have held on to that. As long as the first year wasn't over, I could still have progress. I gave myself completely to get as much recovery as possible, without thinking about how it would end. In that year I got a lot of support from the mailinglist that goes with the website. You get practical tips, a ready ear and you can sometimes have one's cry out. Tips from fellow-CES-people have saved me from buying an expensive tricycle. I wanted to buy it, but was dissuaded, and a few months later I rode a bicycle.

Two months after the surgery, mid July 2002, my wife came to the rehabcenter for a full day to see the programme I was having and how I was doing. As proud as Lucifer I showed her that I could take one step without holding the parallel bars. That was such a contrast: I who was proudly showing what I could do, and my wife who wanted to burst into tears seeing her husband like that; at home I was always in a wheelchair.

From August, about three months after the surgery, my recovery speeded up. First I went from being an intern to doing a day-programme in the rehabcenter. Then I went less and less to the rehabcenter and more and more to a fysiotherapist near my home. From the 1st of October I started carefully with working, but that was disappointing. I found it very tiring. Normally, going to the coffeecorner was a moment of pause, of thinking. Now I was merely busy with just walking and how I had to do that. I remember that the train in Utrecht (I was working near to the station then) one day stopped at the other side of the staion, so that I had to walk through the whole station to the exit. I was exhausted and I still had to start my workingday. But slowly things got better and in May 2003 the first year ended. After that year I was able to walk, cycle, drive a car and motorbike and I had returned to working fulltime.

The second year I started sports: tennis, volleyball, skiing-gymnastics. Especially the skiing-gymnastics has helped me very much in that second year. The training until then was mainly focussed on my hips and legs. They functioned pretty good again. My feet were a problem: weak ankles, not able to stand on my toes, pain in my footsoles. The exercizes during skiing-gymnastics are partially aimed at your feet and ankles. That's why I have made more progress. In October 2003, 18 months after the surgery, I had another MRI of my back. According to my neurologist the place where he has done the surgery has recovered fine (there are two other weak spots in my back who are a bigger risk). I am allowed to do everything again except lifting more than 15 kilogram and trialling. Trialling is a game of skill on a motorcycle, a sport I did before I had surgery. It has a too high risk of falling. But apart from that I can do anything as long as I listen to my back.

At the moment I only have slight symptoms. In the morning I have a little pain in my back, but that is gone after 10 minutes of moving. And my left leg/feet feels strange and is sometimes painful, probably due to the damage of a few sensory nerves. My feet are not back to normal yet, I have to concentrate while putting on my pants or else I'll loose my balance and fall. I estimate that I am on 95% of my old level. Sometimes I feel that I am still recovering, but I'm not sure. If I, as mentioned before, count my marbles, I say that I am very lucky with this recovery. I hear and read very different stories. I function normally in daily life, just don't ask me to move a washingmachine (or better, don't ask me to help moving at all). I am driving my motorcycle and have much more fun doing that then before. I enjoy my family, my work and I realise, every time I see someone in a wheelchair, that I could have ended up like that. Luckily that didn't happen. Everything that has happened has made me believe even stronger that you have to enjoy today and the people you love, and that you have to do the things you like to do today. Because tomorrow the world can be totally different.

Man, 38, cauda equina syndrome for 2 1/2 years:

I got the syndrome acute as a result of a herniated disc on L2-L3 which had been there for a few years. At that moment I had no control over my bladder- and bowelmuscles (but no incontinence), dysfunction of almost all muscles and sensory nerves in the saddle area, no strength in my thigh-muscles, shin-muscles, calf-muscles, flex-muscles, strong pain in my back, bottom and legs, and I was in agony. I had surgery on the same day. The GP on duty diagnosed rather quickly a plural acute hernia/cauda and sent me to the hospital, he also said that I would have to have surgery that same day. Having been fysically examined by a neurologist in Haarlem, I had an MRI and then was operated in the academic hospital in Leiden, within 10 hours after the symptoms occurred. The herniated disc was straightened out and the space in the vertebra was cleared out.

Right after the operation I felt euforic: I was happy that the pain had gone. But the lower part of my body, from the navel down, was totally paralysed. The day after the operation I was told that I would have to recover for a long time and that I might have permanent limitations. I was also told that I had CES. I didn't fully realise what that meant. Within a few days I was the subject of a clinical lesson for learning fysicians and my medical status became clear to me then. It was only until a few days after I came back to the hospital in Haarlem that I got emotional and that I began to realise the situation I was in.

The first week in the hospital I was in bed, I needed help with everything. I didn't have control over my bladder (I had a catheter) and bowel (I got laxatives). I was not incontinent, but kept everything inside. I also had pain from the operation (muscles). I could hardly move my legs (my right toe a little bit) and they were numb. I spent 5 weeks in the hospital (there was no room in the rehabilitationcenter). I got help from a physiatrist (30 minutes per day) and from the occupational therapist. I learned pretty quickly how to get from my bed into a wheelchair and how to take care of myself (also how to catheterise). At the end of the 5 weeks I was able to urinate again (with a lot of pushing), my bowels got a bit better and I could walk about 10 meters with a rollator. Only my right-outside-bottom-muscle had come back, also the feeling at the front of my thighs.

About a month after the operation I could urinate without a catheter, but I had to push hard on my bladder. This is still improving. My bowels functioned rather normal, without any help, after about 6 months. I could ride a bike after 7 months. At first, my maximum was 500 meters. Now I can cycle up to 3 hours, depending on my physical condition. After 8 months I could walk without aid, and that kept improving; now, I can walk up to one-and-a-half kilometer. The sexual function recovered after about one-and-a-half year. I can ejaculate, but the erections are still not very good, even with the use of Viagra. I still have problems with my balance. Sometimes I am able to stand still for a few minutes, but this depends on how tired I am. I still have sensoric dysfunction in the saddle area. My buttom is quite allright, but the skin of my feet is almost numb. My muscles get weaker from my buttom to my feet. The muscle-power on the back of my lower body is about 60% of the power I had before my hernia.

In total, I stayed in hospital and rehab-center for about 5 months. At the rehab-center, I had physiotherapy, occupational therapy, fitness, swimming. After that, I came to the center for 3 mornings/afternoons per week, for 6 months. Now, I have physiotherapy (balance/walking-practice) and I do fitness (to strengthen my muscles).

I started working again 5 months after the operation, half a day per week. After 1 year it was 2 days a week. After 2 years I worked 32 hours a week and I still do. At first, I just drank coffee and chatted with colleagues, and slowly I did some small jobs. I did a temporary job for about a year, but now I am back in my old position, with a small adjustment, so that I don't have to sit in a car very often.

What I find the hardest to cope with mentally, is the loss of functions. I can't sport actively anymore, having a holiday where I visit a city for a few days is difficult, sex is a problem, and I had to adjust the goals I have in life. I find it hard to deal with living with a handicap and sometimes I am gloomy and down.

Man, 40, cauda equina syndrome for 3 years:

I got the cauda equina syndrome as a result of a piece of cartilage that broke off when I sneezed. At that moment I already had a herniated disc. I suffered severe pains in my lower back and had cramps at the back of my legs. Furthermore it was not possible to urinate. There was also dysfunction of my legs. At 8.30 a.m I called my GP, at 9.30 a.m I was taken to the hospital and was examined with photos and scan. At 2.30 p.m I was taken to another hospital and at 4.30 p.m I had surgery.

Right after the operation I suffered severe nerve-root pains in my lower back and at the back of my legs. The first few days the pain was suppressed with morphine. During walking I partly had a drop foot, and there was muscle-dysfunction in my bottom and at the back of my upper legs. What I found astonishing was that my achilles-tendons seemed to have disappeared and that my ankles had adapted a strangely round shape. And all this happened in only a few hour's time….

Both the physiotherapist and the rehabilitation-doctor were astonished about how quickly I recovered. My recovery was, in my opinion, greatly due to a homeopathic medicine I had been given by my GP. I think that that medicine has been the solution for me. For a long time I have taken this medicine, also when I got cramps in my legs, and then they disappeared for the most part. This medicine is called ¨hypericum perforatum¨. It is given on prescription through the pharmacy.

As far as my rehab is concerned: at first, I got physiotherapy at home. Later I went to the physiotherapist myself. After that I have taken it easy for quite some time bacause my body asked for that. Since a few months I do medical fitness. And again my performance and my condition improve considerably. Now, about 3 years after the operation, I am able to do everything, just running is not possible because of lack of strength in my feet. But I am also training for that. What is remarkable, is that I still see improvement. It is not so much in the physical performance, but more on the mental level. I notice that thinking, concentration and the power of reaction is getting more and more like it was before the operation and sometimes even better. This is a result of the things I went through (every disadvantage has it's advantage).

I was back at work not long after the operation. After 6 months I was present the full 36 hours. I wasn't able yet to do 100% the same amount of work, though. It took at least 2 years before I got to the level I was on before the operation. At the moment, however, things run smoothly again.

Mentally I haven't had many problems. My motto has always been: "It isn't the problem that matters, but the solution!" From the first day at the hospital I have said that (sometimes to the annoyance of my girlfriend), but I believe that and it has helped me to this day. I think it is good to take some distance from your problems at some point and go on (as well as you can).

Man, 47, cauda equina syndrome for 3 1/2 years:

In 1996 I had surgery for a herniated disc at L3-L4, an unsuccesful operation. I had much trouble recovering then, it took several months before I could walk somewhat normally. At the end of 1997 I got problems again, at the same level L3-L4, but now I was diagnosed with HNP. In March 1998 I had surgery. The day after the operation I got out of bed and just had pain from the wound. But during the day the pain in my back got worse. The surgeon said that was normal. At the end of the day I began losing the feeling in my right leg. At night around 4 a.m. I got an excruciating pain, so bad I wouldn't wish it on anyone. I was unconscious for a while. When I regained consciousness, I was paralized from my waist down. A haemorrhage in the spinal canal. The cauda equina syndrome was born. That same morning I had surgery again, but without much success. Two days later the surgeon found a laminectomy necessary. Only after that I noticed that the pain got better.

The two weeks in hospital were mainly used to learn to walk again, with a rollator and later with crutches. The rehab-doctor thought a further recovery in a rehab-center was necessary. There I have trained hard to get fit: swimming, walking, hometrainer. After 6 weeks I went home. I could walk without crutches for about 1 kilometer.

Backpain I only have at night, after too much fysical strain or after a busy day. After the operation I could hardly walk and had big problems with my balance. Due to training and exercising my leg-muscles slowly got much stronger. Calf-muscles stay behind, I can't stand on my toes and heels very well. Walking: 5 minutes without crutches, if I want to walk longer, I have to use crutches. Sitting: ½ hour to 1 hour. Walking stairs: well with rail, without rail still difficult because of balancing problems. Standing: up to 10 minutes. My balance has improved, I can stand for a little while without getting into trouble. I am very good at riding a bike, distances of 50-100 km are no problem at all. Overall I am in better shape, but I still am too tired too fast. I still often feel completely worn out at the end of the day and that is tough, I always was very fit. After the operation I didn't feel when I had to urinate, which resulted in a bladder that got too full. I had to cath more times a day and could only urinate by pushing very hard. But already in the first months after surgery the feeling that I had to urinate came back. I can urinate without pushing now. But controlling my bladder is much more difficult now, if I have to go, I really have to go, and that has caused some embarrassing moments. My bowels didn't function after the operation, I got a clysma more times a day and had Lactulose, which caused a lot of wind. Since then my stool has improved a bit. I still use extra fibers daily to keep my bowels going. My sphinctermuscle hasn't recovered either. And when I have diarrhoea, that is still a problem, I can't hold it up, so that I am forced to stay at home. The skin of the saddle-area, the back of my legs and feet were completely numb after the operation. This has improved slightly, it seems like there is more feeling, especially in the saddle-area. But that improvement is minimal. I have got more problems with warm feet. After the operation, due to the numbness of my penis, I couldn't have an erection or orgasm for several months. From the moment I got home, so after two months, being in the safety of my own home, I could start experimenting. Nowadays I can have an orgasm again, although sexual intercourse is out of the question, my erection is too brief for that. I have discussed this with a urologist and asked if Viagra was a possible solution to my problem, but he said that that wasn't suitable for CES-patients. He proposed, however, to do more tests regarding my erection, but I refused, I had had enough hassle with my body. So now we're having sex without sexual intercourse and my partner, after some adjustments, hasn't got a problem with that.

The cauda equina syndrome has had a big impact on my life. But after 3,5 years I have accepted it, I rarely talk about it anymore. Although I still have problems accepting the fact that I can't sport the way I used to, I limit myself to bike-riding. Also I can't do jobs in and around the house, I loved doing that, but I have given that up because it gives me a constant back-pain. But there is enough left to do, family, two kids, wife, etc. I searched on the internet for partners in distress, searched for a psychotherapist, started working again, did a driving test and passed, and that makes life easier, also because I have a disabled parkinglicence. Now, so many years later, I don't have many problems with my situation, I have stopped the international internet-contacts, just the Dutch contacts remain valuable.

Eighteen months ago I started working again, 18 hours a week, advised by the company-doctor. I wasn't happy with that, but I didn't have much choice. I accepted this scenario and got back to my daily routine. I thought, and so I was told, that this would be a permanent situation. At a new medical examination by another insurance-doctor, that wasn't the case. She said I should get back to work 100%. I figured it was time I took back control over my life. I started applying for jobs and found another job immediately. I work 40 hours a week now, that is tough, but I am glad that I am not dependent of others anymore.

Woman, 40, cauda equina syndrome for 8 years:

How am I doing?
Fine! I still have some limitations. Not a day goes by that I can forget about them. They are annoying, but I can live with them. That is, after 8 years of CES, the balance-sheet, drawn up in three sentences. The result of a long struggle, with my body and with my feelings, that began on May 26th 2000.

That day I got an acute doublesided herniated disc at the level L4-L5. I collapsed on the street, suddenly could not walk anymore. It took about 60 hours before I was diagnosed and got surgery. Before the operation, I already had all the symptoms of CES. The operation ended the horrible pain in my legs, but the other symptoms were still there: muscle weakness, numbness of my skin, bowel- en bladderproblems, sexual dysfunction.

It is difficult to describe eight years of CES in a nutshell. How do I briefly tell about the dependent situation I suddenly was in because I could hardly walk and could not ride a bicycle anymore, let alone drive a car? About the strength it took to keep on training for years, also at times when I did not see any progress? About the difficulty I had at first accepting help from all those sweet people who helped me with pleasure? How do I explain how it felt to live with the chance that I could suddenly get diarrhoea with my badly functioning sphincter muscle. That often, still, when I am sitting on the toilet, I think back to the first months of my rehabilitation, when, time and time again, I tried unsuccessfully to urinate spontaneously, without pushing? How do I tell that, as a young single woman, I lived 8 months with the fear of never being able to get an orgasm again? And about the nerve-pains in my leg every night? And my feet, cold as ice?

I would rather tell about how it slowly got better, about the small and big victories. About how I still made progress longer than three years after the operation, against the predictions of my doctor. How I discovered that, mentally, I was stronger than I thought. That I could get support, time and time again, from people who were close to me: family, friends, colleagues, partners in distress. I would rather tell about the highlights. The moment I was able to work 32 hours a week. My first orgasm. My walking holiday in Ireland, two years after the operation: 5 days of walking 10 kilometers. Or the day I could stand on my toes a bit. That I was able to run a few meters to catch my train. The discovery, a few years ago, that my bowels kept functioning fairly well without the help of extra fibres (powder). Or my pregnancy and the birth of my daughter over a year ago, without any problems. Each and every one are milestones in my recovery period that I cherish.

At the beginning of my rehabilitation period it helped to focus on the things that went better, and less on the things I could not do anymore. But the monster of frustration still got to me regularly. Sometimes, it still does. Then I hate it that my body does not do what I want. But those moments are rare now. The feeling of joy is stronger, and also the sense of wonder: look how far I have come! I can still enjoy the times that I cycle to work or in the woods with my daughter sitting in front of me, because there were times when riding a bike and working again and having children seemed so far away. I realise very well that this could have been different and that notion gives my life a dimension that was not there before.