My experience of Cauda Equina Syndrome

I thought I'd post about my experience of Cauda Equina Syndrome (CES) in case it's of any use to anyone. I'm a 30-year-old woman.

In spring 2010 my lower back suddenly became painful. It didn't get better. Over the summer I tried various things - painkillers, the chiropractor, the gym, swimming, pilates - but found nothing gave lasting relief. Towards the year end my back became increasingly stiff and sore and one evening before Christmas I fell on the snow and felt a disc slip in my back.

Instantly I was in agony. The doctor seemed to think my level of pain was pretty standard and put me on Voltarol. I carried on with work with out pain but feeling electric shock sensations down my legs every so often. When I came off the Voltarol a week later, I had the most excruciating sciatica and was almost crawling up the walls with pain. I was put back on painkillers and told repeatedly by several very kind, but essentially uninterested doctors that the sciatica would likely wear off.

After about 3 weeks I had upped my dosage of painkillers (dangerously, I later found out) to cope with the pain. My GP told me that no investigation of sciatica was warranted until I had had it for at least 6 weeks. After 4 weeks I started to have difficulty walking. After about 50 yards I would need to crouch down to get the feeling back in my legs so I could continue moving. My feet would point in odd directions sometimes, as if I had a disability. When I lay down, a feeling of coldness would fill my bottom area. I experienced some difficulty in peeing though I was still able to go to the toilet and had no incontinence until the day of the operation.

I called the doctor after a week of this and he said if I wasn't incontinent, there was no need to worry about CES. I later learnt that once you are incontinent with CES, your prognosis for recovering nerve function is significantly worse. I was in the pre-stages of urinary retention, which he didn't seem to think was at all related. He said the leg weakness was most likely muscle wasting from the sciatica (which I thought odd - my muscles looked and were behaving perfectly normally) and that if I felt coldness, not pins and needles in my saddle area, it did not sound like CES (which I'd heard about after typing my symptoms into Google and finding that unanimously, they came up).

A week later I got another doctor's appointment as my leg weakness and inability to pee were getting worse. This time I saw a different doctor who instantly realised what the problem was, tested the sensation in my saddle area which was worryingly absent (it's horribly easy not to notice that bits of you are going numb) and sent me straight to A&E. After various tests and an MRI I was diagnosed with CES with a very large disc herniation at L4-L5 and was operated on that night.

After the surgery the leg pain and weakness resolved instantly. When the nurses removed my catheter though I couldn't pee and couldn't feel anything much in my genital area. I was utterly terrified that I might have ruined my sex life and lost the ability to pee normally. They sent me home with a tap catheter to try and remind my body of what it should be doing.

A couple of weeks later I was lying in bed and suddenly felt a wave of feeling in my saddle area, as if all my nerve endings were suddenly alert. It was the most wonderful feeling as I knew it meant that my nerves were repairing and that I hadn't lost sensation here. I could feel that I needed to pee, which was also wonderful. The catheter came out soon after and I could pee normally most of the time, with a slight delay at other times.

It's now a year later. I'm often in pain with my back still. I've had several episodes where CES symptoms have come back and I've been MRIed again, showing that whenever any disc of mine in that area slightly bulges out, the nerves damaged by the first herniation go on the blink again, but with time the numbness goes away again, though it's always nerve-wracking. I pee normally most of the time but am still seeing a neuro-urologist at times to assist with this. I've currently got sciatica for the first time since prior my operation which is worrying, but I'm keeping an eye on it and will contact my brilliant consultant if it doesn't go away after a month or so, or obviously if I develop any more worrying symptoms.

The point of this essay is really to explain what happened to me, as when I got the syndrome I couldn't find details of another case quite like mine online. I hope this might be helpful to someone who is worried their nerves won't repair, because there is often hope that they will - when I was in hospital, the doctors kept telling me my nerves wouldn't get better as I had had pressure on them for longer than 48 hours - in fact 3 weeks! But they still did, so there is hope.

The other point of this story is that I needn't have ever developed this distressing syndrome had my back problems been taken seriously by my GPs. The other day I went back to the GP to get their advice about this new episode of sciatica and they said "Let's wait and see how it turns out." I think in this instance they're probably right - it probably will wear off with painkillers and physiotherapy. But this is exactly the same advice they gave me a year ago prior to my operation. If my GP had ordered a scan after my disc first slipped, or after my sciatica first started, my consultant says they would have straight away seen that I would need surgery as the herniation was too big to ever repair by itself. But they didn't think it was a big deal, and I don't like to be pushy.

And as a result of their inattention and delay I developed CES and now have permanent nerve damage.

I understand that back pain is a fact of life for many, and it looks like I'm going to be one of them. I also understand that in the vast majority of cases, slipped discs and sciatica go away by themselves. But it seems to me that whenever there is the chance of some underlying pathology that will lead to outcomes like (or worse than) mine, GPs should err vastly on the side of caution.

Hi there, I also suffer from Cauda Equina, although thankfully, quite mildly. I was operated on within 24 hrs of being diagnosed which really helped. Unfortunately I think I'm the exception as all too often diagnosis is late or missed completely.

I am currently volunteering for a new charity which has been set up by 2 CES sufferers and a specialist nurse. The aim of the charity is to raise awareness of the condition and to find and support people with ces. The website is www.cesukcharity.org.uk and we are also on facebook and twitter. We are currently in the process of getting our registered charity number so we can really get things started. Anyway, I just thought you might like to know that there are people out there who want to support and help change things. You may already be aware of us but if you want to get in touch please do.

Hi , my name is Rose (age37) and I also suffer from Cauda Equina Syndrome , my disk collapst and the delayed treatment and operation led me to suffer from this , I m now 6 years into my legal battle : neglect

If they would of done their job within 48 hr I would of had a better chance of recovery. Maby you should also seek legal actions

Do you suffer from more back pain than before? I do and of course they say its not because of the delay , they say I had back problems before and therefore take no responsibility , how ever they admit to my bladder and bowle disfunktion but also dispute my numbness in my left leg and weakness of my leg which I now have support with a crutch (it gave way a few times in the past and made me fall)

I m happy to tell you my whole story , I also have a blog on here , thank you for your time

Rose

Hi my name is Karen i also have CES. I have just got out of the hospital and iam not sure about alot of things. I have lost feeling in my left foot leg and buttocks and private areas.It has damaged my bowels and blatter, The Drs said because of the 5 days i had it ...it has done the damage is it possible it will come back ? Plz someone reply iam so scared .

Hi Karen, I have lived with CES for over 2 years and I also work for the Cauda Equina Syndrome UK Charity to support sufferers and raise awareness. Please try not to be scared, you are not alone. We have a site where you can register and speak to other people with CES at www.caudaequinauk.com or you can send me a message with your contact details and I can call you. That goes for anyone on here who is concerned or just wants to have a chat about ces. It usually much easier to chat over the phone as CES can be so complicated it's hard to discuss in depth and hopefully we can advise you in more detail.

Kind Regards

Emmax

Hi Emma,

I have removed the phone number and email address as these are available from your web site. Users can send you a message directly by using the Message button under your name if they wish to send you their details.

I will also ask for your site to be added to our support directory here https://patient.info/selfhelp/c.htm.

Regards,

Alan

Emis Moderator

Hi Everyone, i have been sat here reading all the posts and feel alot better but still kind of worried. I have had 2 prolapsed discs for aprox 8 years, the past two years have been quite hard with the frequent spasms and sciatica, i fell in sep and was layed on the kitchen floor for over two hours, since then the pain has been constant, from my hips to my feet and to cough or sneeze is a definite no no ive been back to the doc and the sensation in my right foot has neally gone and as for sleeping i must get 2 maybe 3 hrs a night, the doc examined me the other day and sent me straight to the hospital i was there for 9 hrs (8 of these was sat waiting) it got to late for the mri so i was sent home and have to wait for a letter to go back, i told the doc that i have had two accidents in the toilet dept where i didnt even know i had been, im at the end of my tether, im so fed up of being in pain, i have lost two jobs and maybe will lose a third as im of sick again, im struggling to drive, im 46 and feel 90. has anyone any advise of what i should say when i go back for the mri because at the hospital the other day they was so rough and pushy they just kept saying everything was normall and i know its far from normal.. sad

CES can present with one, or with a combination, of the following red flag symptoms. The more common symptoms tend to develop suddenly and often rapidly worsen, within hours or days, in other cases though symptoms can develop gradually.

Saddle Anaesthesia:

Loss of feeling between the legs

Numbness in or around back passage and/or genitals

Bladder Disturbance:

Inability to urinate or difficulty initiating urination

Loss of sensation when passing urine

Inability to stop or control urination

Loss of the full bladder sensation

Bowel Disturbance:

Inability to stop a bowel movement

Constipation

Loss of sensation when passing a bowel movement

Sexual Problems:

Inability to achieve an erection or ejaculate

Loss of sensation during intercourse

Nerve Root Pain:

It is quite common to have a combination of back pain, leg pain, leg numbness & weakness. However, these symptoms are also common in people who have a history of back problems but do not necessarily have Cauda Equina Syndrome.

If you have any combination of the above it may be CES and urgent treatment is needed - go back to A&E and show then that you understand the Red Flags of CES - and also be aware that CES does not always show up on an MRI. The fact that you are having bladder issues is the key thing here, pain on it's own generally doesn't mean CES but the bladder problems are an indicator so make sure they are aware of this - also if you are having any numbness around the anus/genital area, this is a significant sign.

You can always call us at the charity on the link above if you'd like to talk it through.

Regards

Emma

Hi Karen,

I was in your shoes last Christmas. The important thing at your stage is to bear in mind that a lot of ces patients see significant nerve recovery within the first couple of years, it just takes time. Keep hopeful and cross each bridge as you come to it

Best wishes

I am 6 months post surgery for CES in the USA. I was one of the lucky ones who was able to have it caught quickly, not without months of extreme pain and years of pain that preceded my diagnosis and surgery. I am 31 years old female (30 at time of surgery) and am so thankful my husband is very supportive of me and my condition. I still deal with pain, numbness (of which some has come back, or at least i have grown to be used to it) and remains in my groin area, some of my butt, back of my legs, calf and food of my left leg. I am in the process of trying to loose weight to make this all easier.

With my case they removed the entire disk leaving nothing there and not sure if that is common for this syndrome or not. My doctor was the best in my area and was lucky for that (and he is two hours away). The day of surgery, I went for an MRI to see what the problem was and was rushed two hours away to the best surgeon who knew the situation and knew exactly what was wrong. I have no fusion and only had some "blood matter" put in where the disk was, is anyone else familiar with this?

Unfortunately there is not a lot of information about this online and have found that most of the info is found from the UK making it a little more difficult to find some answers. My biggest battle now is that my husband and I want to have children within the next year and am not sure how that is going to effect my syndrome. I know that my pain level has decreased substantially and that i am fine with the numbness, am dealing with sex that is just not the same, fortunately i do have bowl and bladder control back now, but am concerned because we do want to have children of our own and not sure how this will integrate with us now.

Does anyone have any feed back or experience with this? Any advise? There is no one that can relate to me with this around here and will be mention it to my doctor the next time I see him. Thank you for everyone's feedback.

Hello, my name is Mary D. I underwent emergency caude equina surgery May 10, 2010. My life has been changed forever. I started to experience severe pain down the back of my right leg into the knee area. The pain became unbearable. I found it very difficult to sit. I remember being at work and when I went to the bathroom I could not feel the entire right side of my crouch area. It was totally numb and it was continuing down the back of my right leg and buttocks. I went to my primary doctor that same day this occurred (May 10, 2010). She sent my for an MRI and told me not to eat or drink anything. I went for the MRI straight from my primary doctor appointment. They were waiting for me and I was taken asap. When the MRI was done, I was told the same thing (not to eat or drink). Within one hour my doctor called and said he recommended I go immediately to Boston to Mass General Hospital. I was about to undergo very serious surgery.

I went into the emergency department at MA General Hospital and took my films of my spine with me. They

told me that I may never walk again. Off I went into surgery. Evidently the doctors could not keep me still on the operating table, even with the restraints used. They put Mayfield Pins into my head - several of them. I woke up from surgery screaming from the blood from my head and extreme pain to my head. (My surgery was L4 and L5 not my head) The surgeon denied using anything on my head and an internal from MA General showed the use of them and also that I had a bleed when one of the Mayfield Pins was out and required stitches, I learned to walk again and live relatively with minimal pain, No more numbness and my bladder seems ok. I however have a TBI and PSTD from what they had to do to my head. I have numerous neurologists and lots of doctor appointments. I understand the doctors did what they had to do to get me to walk again, but my life is so altered. Everyone in my family has undergone therapy to understand how to help me live wit h my brain trauma and I go as well. I hope this may help someone with caude equina or TBI.

Hi

I am new to this forum. I had an Mri in January and I received a letter last week from my Rheumatologist who has been treating me for Psoriatic Arthritis. In it she said she has referred me to the spinal surgeons for review as my Mri showed abnormalities.

Ii have suffered with excruciating pain in my lower back now for weeks and have a numb right leg and numb toes. I did have really bad sciatica a few years ago.

Anyway I phoned the spinal surgery dept and they said they did not have a referral. I called my Gp and made an appt. saw him and he said the Mri showed Ces. Said he would do a referral and said to phone the hospital and chase them up.

I am so unhappy with the way this has been handled and worried for the future.

Jacqui, I am so sorry to hear about your diagnosis with CES. Please keep us posted on your surgery and recovery. If you have any questions, please don't hesitate to ask. Wishing you the best! Maryrose D.

THANK-YOU! Your story sounds similar to mine and I am going for decompression surgery on Friday, 3.5 weeks after my discectomy that took away the pain, but not the numbness in "all the right places" that developed 36 hours before the first surgery (after years of trying everything else) and left me retraining my bladder. Only cathing 1-2x a day and so SCARED that the laminectomy will do something terrible and put me backwards or do more harm, but I need to take the chance. Your story gives me some HOPE and I thank you so much for that!

It's nice to know that we are not alone. After my discectomy in August of last year, my pain is now starting to come down. Still have numbness and weird feeling in my left leg and foot but I can deal with that instead of the pain that I had prior to the operation. I am two days off of my Vicodin for the first time since July which is a feat within itself. The withdrawal is horrible but I hate being on the pills and relying on them.

I am also trying a new feat for someone with CES. I can not find much info of anyone giving birth after having a L4/L5 discectomy but after talking to my surgeon, he has given me the approval to move forward and now we are trying to conceive. I'm 31 and my husband is 34 and know we are not getting younger to have kids. I realize that my pain level will increase and I will need to be extremely careful but we are willing to try.

I am trying to deal without having the heavy meds for me as well as if I do get pregnant and am not sure what medication I CAN take. I know I will have to talk to my OBGYN and they will tell me as well as for them to know my situation and how to handle it. My surgeon has already told me when I find an OBGYN he will be happy to talk to them which is great.

If anyone has advise on this I would appreciate any feedback on this and any advise is appreicated.

Hi everyone. I also suffer from ces. I had surgery in October 2013 disc herniated L4/L5 L5/S1. 16 days delay from onset of symptoms. I have problems with walking and balance and feel tired after just 5 minute walk. My foot get swollen and I am in constant pain. My back has started to ache as well and I get sudden spasms. Excruciating pain!!!! I take tramadol 50mg 4x daily and paracetamol 500mg x2 4 times daily but get very little relief. People look at me walking with a limb and struggling and they think I am making it up. Anyone here struggling with mobility? I am still doing physiotherapy and use a walking stick. Thanks everyone. Lets keep our heads up and not lose heart.

Hi Jasmine

I suffer with very poor mobility. The pain is too much sometimes and meds are not helping. I take paracetamole ...which is pretty useless and Lyric 600mg which makes me feel odd.

I am awaiting surgery and have seen the surgeon who wants me to lose 20kg.! I can and will do that. My discs affexted are L12345 and S1..... Not good. I was told by my GP that it was serious but never imagines this. The hospital call me every day to check that I dont have any change in feeling in my limbs etc.

I have a numb right leg which I have had for the last four years which is probably linked to what I have now.

It is all abit horrid really. The only relief I get is when I lie down.

We have fo keep smiling otherwise we would cry.

Healing hugs to all((((( x)))))

Hi Jacqui

Thanks for your reply. Its a shame you haven't had surgery. Pain is just too unbearable at times and people around you fail to understand the intensity of it. I hope your surgery is soon. Im also trying to lose weight as I have gained some weight because I haven't been mobile and was slightly overweight to begin with. Will continue to check the thread to see how everyone is going. We are not victims of ces we are survivors and conquerers of ces!!!

Jasmine

Hey all,

I ran across this site and want to thank everyone for the support and the stories that are being shared here. I am new to this and by reading this thread, it has given me a ray of hope that I needed to get through the dark days of depression that hit me in these first days of post op.

I am a 33 year old male who has Cauda Equina Syndrome. I just had emergency surgery last week on 3/19/2014 after 3 days of having the symptoms (numbing and slow loss of bladder control). I reinjured an old low back injury and my herniated disc shot out and was extruded 15mm and completely pinching my nerves. I had a discectomy and laminectomy at the L5-S1.

After a week post op, I feel a little stronger with me walking around the house. I use a walker and sometimes a cane to help. I also use a flexible back brace to help give me that extra support during this fragile state of recovery. I've also recently quit the pain meds and feel normal again (which is such a relief). I hardly have any pain and am taking Celebrex to help control the swelling along with the occasional ice pack. So far, things are looking pretty good, but I am still dealing with the tingly/numbness feeling in my left saddle area and semi-loss of control in my sphincters.

Just trying to get through these first few weeks without re-injuring myself or aggravating my nerves (which take FOREVER to heal). Thanks again for the support and I will update you with any changes.