Cauda Equina - Advice for sufferers

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Patients' Personal Story

Patient 1:

"Looking back, it is difficult to describe how much my life has changed since I developed CES. It began with severe lower back pain soon after having a baby. I thought the pain was due to stretching of the ligaments. Also, I couldn't stand very well, but thought that this was part of the post birth experience. Although I didn't know it, damage to the cauda equina was occurring. Finally, I had an intense sensation of pins and needles, which spread over my legs and saddle area. This happened very quickly, but it wasn't until later in the evening that I realised I couldn't pee.

In my case, emergency surgery was required and was successful as far as the sciatica (pain down the leg) was concerned, but there was permanent damage to the cauda equina. As a result, I have to use a catheter to pee, my bowel movements are irregular and I can only tell if I have passed a bowel motion by looking in the toilet bowl. Whilst several doctors spent time discussing urinary incontinence, there was little or no discussion about sexual issues. I had no sensation in my vaginal area or clitoris but nobody told me that sex was going to be very different. In the beginning, I could not even tell if my partner was in me, but slight improvements took place over time. After a year and a half, the sensation had returned enough that I felt part of the occasion!

It took me 18 months to discover that my condition had a name - Cauda Equina Syndrome. I informed myself using the Internet and joined the cauda equina support group ( CES is often an invisible condition; people will not necessarily know you have a disability. It can be hard to talk to people who have no idea what you are going through. The support group is full of sympathetic people with CES, who knew exactly what is felt like to go through CES. Try complementary therapies (alternative medicine) such as homeopathy, acupuncture, herbal remedies or reflexology. Aromatherapy can make you feel really relaxed. Something can be done, even after doctors have 'given up' trying to help. Whatever you try is good, whatever you try is worthwhile, everything is important. Find someone to talk to. A positive attitude can make all the difference."

Patient 2:

"The following outlines the sudden change in my life that followed a fall, which left me with CES. Nobody explained that CES would have an enormous effect on my life. I had a hint of how serious CES was when a consultant described my situation as 'the best it gets'. At that time I was walking with crutches and in constant pain.

I had to cope not only with bladder, bowel and sexual problems but I also financial difficulties and I had nowhere to turn for help. I had to agitate and put a lot of pressure on my hospital doctor to refer me to the local neuro-rehabilitation unit. However, when I finally attended the unit, the doctors were very sympathetic but had to refer me on to a specialist hospital for neurology and neurosurgery, as they did not normally treat patients with my condition. My family doctor dealt with my problems very compassionately but I still had to wait for local authority funding to pay for my admission (more anxiety). I had numerous tests, saw several consultants and the pain management team (at last a result). I felt I was getting somewhere and that my problems were finally being addressed. There was light at the end of the tunnel. Over the next few years, things improved a little, both physically and mentally, but I still have significant long-term problems with bladder, bowel and sexual function.

Bladder: At first I found it difficult to cope with my bladder problems. I had to pass urine frequently, yet my bladder never emptied completely. I also dribbled offensive-smelling urine and I isolated myself from my friends to avoid the embarrassment. Because I was constipated, I thought that my bladder would recover if my bowels were treated but there was no improvement. Eventually, I was taught Crèdes manoeuvre with some beneficial results but the situation deteriorated again. Despite increasing my fluid intake, my urine was still very offensive. It was at this stage that I learned intermittent self-catheterisation. I now pass a catheter four times a day and am on long-term antibiotic therapy. I am a lot happier and more confident with my bladder now but I always have to carry spare catheters and find somewhere clean and suitable to use them, but it is convenient to empty my bladder whenever it suits me.

Bowel: It was very difficult to cope with the sudden change in my bowel habit, especially given that I also had bladder problems. Following the injury I immediately had bad constipation. I did not have the normal sensation of needing to open my bowels or abdominal discomfort. I dealt with constipation quite well, using a combination of manual evacuation, laxatives (senna) and liquid paraffin. I got a tingling sensation in the outer aspect of my right foot whenever I need to open my bowels, but I had to have two toes amputated so I lost a lot of this sensation. I am never sure whether my bowels have emptied completely.

Sexual function: When other aspects of my life started to improve, my partner and I started to address the problem of weak erections (which had previously been a taboo subject for me). As with everything else, I was determined to overcome this problem. Although we have an excellent relationship, my erections are not the same as before CES, and this has put pressure on both of us. I have no sensation on the right side of my penis, so I was prescribed injections, which were effective but quite painful. The act of sexual intercourse is enjoyable but, at the point of ejaculation, it is extremely painful and I have the sensation that I need to open my bowels. This was a great cause for concern - but one that I hid from my partner for a long time.

Erectile dysfunction medication should be prescribed for people with spinal problems but my family doctor's practice procedures did not permit the treatment of my sexual difficulties. I found myself without any treatment or advice for this problem. In order to obtain a prescription, I had to change my doctor."

Page Last Updated: 10 June 2004

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