My experience of Cauda Equina Syndrome

Brain and nerves
21

Hi

I developed pain in my lower back when I was 29 ish and like many of the stories on here, I was ignored and sent away with pain killers by my GP..

Even when I started going numb in my saddle are, I was ignored and only asked if I had had any incontinence, to which, I replied, "No".

On the 5th of September 1994 I completely stopped urinating and haven't even realised that I hadn't emptied my bowels for a while. I had my bladder emptied at the doctors surgery and was sent to A and E. I had an emergency operation at 2am the following morning.

To cut a long story short, I didn't recover my bladder or bowel function immediately and had to self catheterise for the next 6 months or so and told I had to manually evacuate my rectum. After 6 months of seeing a bowel nurse and trying every laxative she could think of, I was sent to a bowel specialist. He prescribed the strongest laxative and at last something worked! However, it wasn't gentle as it stated on the bottle and I would have to spend all day indoors until the effects of it wore off and my bowels were completely empty! I found that I started emptying my bladder myself after that!

11 years I took that laxative for and one day, I was camping and felt a sudden urge to go to the loo! I sat there for a minute and a little bit of poop came out...Oh my Gosh!!!....I was delighted!

Over the period of the next few months the feeling to go to the loo improved. I changed my diet, as I could see that eating certain things would make me more constipated. I found drinking a glass of Tropicana really helped to keep my bowels going!....

Although the function has never been quite the same as it was originally, I feel fortunate to have recovered enough not to self catheterize or take laxatives any more! I still have ALL the numbness I had before the operation to remove my prolapsed disc, but, I believe my nerves somehow repaired. It took 11 years, but they either found another route or something!

I wanted to post this, as I'd like others to never give up hope of recovery. I still have manageable pain, but I won't allow that to stop me doing things!

I hope it can be of help to others!...X

22

Hi Lynne,

Can you tell me how long was it from when you started going numb to when they actually did something.

I am so worried about my Ces. The doctor has told me to lose weight and I have to go back on the 9th May.

The pain is really bad and it stops me from walking. I am completely numb in my right leg and he also tested me for a hip labrel tear. I dont know what he did but the pain is so intense , it is like a knife sticking in my groin.I am concerned no one is listening and I would rather have an elective surgery than an emergency.

I feel let down

23

Hi Jacquie

I'm sorry if I haven't spelt your name correctly..

I had the actual back pain for about 18 months, but it became far worse just before I was operated on. I saw 3 different GPs in 5 days and although I couldn't walk from one room to the next without a crippling burning sensation, that was so bad, that the tears just ran down my face, I still wasn't listened to! It was only that I went into retension and it became life threatening, that something was done.

My experience was over 20 years ago now, so it is difficult to recall the exact amount of time.

There was another relative within our family network that also had back pain and rather than wait to be sent for an MRI by the GP, she decided to pay for one herself! The results lead her to an operation to correct her disc problem with no lasting effects! With the benefit of hindsight, I would now demand an MRI scan, or if I could afford one, pay for it myself!!......One usually finds, that most things come down to money!

I hope this has been helpful!....X

24

Jacquie

I had saddle numbness and I think it was about a fortnight, as far as I can remember!..It then started going down my legs as well. Yours could be completely different. I think my disc was L5....It was prolapsed and had spread over the spinal chord, hence the numbness!

25

Hi Lynne

I have spinal stenosis. My right leg has been numb for four years, it started in 2010 when they also diagnosed rheumatoid arthritis and fibromyalgia. then I had a bad bout of sciatica the following year and my big toe is now numb. I kept going back to the hospital and my rheumatologist just said it was all part of the arthritis.

In December 2013 my husband came with me to see the rheumatologist and he insisted I have tests done.

Jan 2014 I had an Mri and a week later I was referred to a spinal surgeon who looked at me and said "oh dear we are in a pickle". He then told me that I had Ces and that was the cause of my numbness and that I needed to lose weight before he would operate. L1 2 3 4 5 and S1 are all affected. I cried.

Although the news was BAD and I did cry a lot , he had actually told me there was actually something wrong and it was not just a back ache. I have had trouble walking for ages and it is getting worse , so a visit to see him on Monday is on the cards.

26

Hi Jacquie

A diagnosis is headway in itself. The doctors would just look at me as if I came from another planet!!

I would agree that being persistent with the medical profession until all avenues have been exhausted, is probably the right thing to do! I can empathize with how frustrating it all must be for you. At the end of the day, you still have a life to get on with, regardless.

I hope you still smile and laugh as laughter is a brilliant tonic!!! I know that's difficult at times when you are always in pain. I'll think of you and hope you get some positive news soon!.....X

27

Hi Lynne

I will post on here and let you know what happens..x

28

Ok....I'd like to hear...Thanks...x

29

Hi All

It's good to hear your voices.

I went through the process of getting a CES diagnosis earlier this year. I was lucky in having a GP that didn't just look for the obvious and a consultant who made quick decisions. The subsequent bilateral discectomy was at least partially successful in halting the loss of sensation and now all i have to do is learn to walk properly again - I remain positive and manage to go a little further if not each day then at least each week.

My main reason for writing is, having read your stories, I realise how lucky I have been with the medical team I had - I am sorry that some of you have not been so lucky. Anyway, back to my point, I read a paper written by Gardner, Gardner and Morley, published in 2011 titled "Cauda equina syndrome: a review of the current clinical and medico-legal position"; it describes cases, outcomes and all things CES related. If you can get through some of the jargon, i would suggest it is well worth a read for those of you who went through the mill to get anything done.

The URL is http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3082683/

Good luck to you all

Chris

30

Hi Rose thank you for sharing.  

31

I have been reading your post. My Granddaughter has the same problem but not quite the same. When she was in the 6th grade she fell from the monkey bars at school. After a week or so, her legs would go numb. Took her to the doctor, they done x-rays, and MRI. I was told that they could not find nothing wrong with her. The only thing they found was that she has an extra lumbar. Okay, then the neouroligest done some test on her and found nothing wrong. They finally told me that she has Conversion Disorder. Well, to make this short. As time went on she is now 16yrs old and her legs seem to be getting more numb as time goes on. To this date I have not been able to find a doctor that actually tell me what can be done for her. If anybody can give me some advise I would be very grateful. Thanks

32

Hello all CES fighters!

My name is Rosa, I'm 28 and got CES in January 2014. 

Firstly would like to say how reassuring it is to see all of us sharing as it's such a scary and painful lifechange having CES. I've been hiding from looking on the internet until now to see what all our sharing and to also add my own contribution and journey...

Very similarly, I have suffered years of back pain in L4 and L5, I had a disc hernia but was manageable with swimming and yoga. I also used to be a yoga teacher which helped with times of stiffness. In January 2014 after suffering a lot of pain, difficulty in walking the disc came out and gave me CES. I went numb, I couldn't urinate, I had foot drop on both of my feet and in utter agony, morphin didn't relieve any of the pain. 

I had an emergency operation that took 4 hours. I came out and could only move my neck and arms and still in pain. It felt like my legs were cocooned in concrete with intensive pins and needles. I could move my legs and lost all strength.

I started slowly moving and doing physio. Everything was scary and my body very weak, all muscles went and my whole body sagged. i had a cathertar in but when then incontinece nerse showed me how I would have to urniate I meditated on my bladder for 24 hours and amazingly I was able to wee the next day on the toilet. From this point I realised that the power of the mind is the most important tool that we have, waiting for nerve recovery is painful and slow so the next thing is to do is to believe and fight.

I was sent to rehab where there was little physio, 30 minutes a day, I started swimming as soon as I was allowed in the pool. I was wheelchair bound and was learning to walk. I was discharged and could barely walk with my two sticks.

My mother is Hungarian, she sent me straight away to Budapest and I went back to rehab/hospital. 

The physio and movement was seen as crucial to recovery, I was doing strengthening and physio for 4-6 hours a day. Exhausting. My body started to tone up, my foot drop was getting TENS (electric therapy) and the sole of my foot still numb but there I was learning to walk. Training the muscles will also start signalling to the nerves so excercise is crucial and in Hungary they were not shy of overworking you. How else are you meant to protect your back or learn to walk without muscles? 

The nerve pain is unbearable, Pregablin/Lyrica is the worst drug I have ever taken, it gave me the worst side effects and started to give me anxiety amongst other things too. I slowly stopped taking it and the pain remained but without the awful side effets. I started going to accupuncture x3 a week and I can confidently say that it has helped a tremendous amount with pain and now I rarely have nerve pain. The accupuncture has helped with sleeplessness, stress, anxitey, bowel function but most of all the pain. I was amazed at the results.

I also take a complex vitamin B that feeds nerve growth and supports the nervous system, Cod liver oil and evening primrose oil. I take psyllium husk for bowel function and movement. The key is to go as natural as possible as your body is a natural shell and filling it with pharmaceutical drugs will almost always give added negative side effects. 

The numbness in my saddle area is still there however slowly improving tiny bits each month. I wear keigal balls/geisha balls to excercise my pelvic floor and help with incontinence, I go to the gym and do physio for my pelvic floor and buttock mucles. I had electro therapy in my bum (in Hungary) that closed my weak rectum that was leaking smelly gasses, it's also helped with evacuating too.

For my foot drop and difficulty in walking I went to the Peto Institute in Budapest where an incredible conductor has given me exercises to stregthen my feet and balance, this is still a work in progress that I measure and can see slow improvement in. 

I'm starting to see the light and hope in my recovery. The key is to exercise, remain a certain weight (overweight/fat is the worst enemy for your spines) and to support my weak spine with muscle because the discs are now so weak. I want to be independant again, live my life freely, be able to point my toes again and stand on my tiptoes and one day have a family. For this I have to look after my spine the best I can. Exercise, breath, smile have hope and continue the fight to recovery!

33

I've had CES for 9 years now, and in terms of nerve function there's been a slight improvement, but I stil have to mannually evacuate my bowels and self-catheterize, along with difficulty walking, and sexual function damaged but still working fully (thank God lol). Anyway, for anyone with CES, they should know that a company called Urovalve have developed an alternative to catheters. The device is inserted once a month, and uses a small powerful magnet held against the skin to open, allowing the bladder to empty. When the maget is pulled away, the device automatically closes. The device is being developed / sold with another company called Ingenion Medical. The device launches sometime in 2014, so really it could be a matter of weeks or months when it becomes available. It offers people with CES and other injuries with similar symptoms real freedom and dignity. Ask your district nurse / GP to contact Ingenion Medical.

The biggest change to my health has occurred over the last year, when I decided to lose weight. I was at 22 stone and I thought enough is enough. So, I eat three meals a day, 1800 calories a day, nothing with refined sugar, no red meat, no alcohol, and I've lost more than 8 stone since last May. Another 2 stone and I'll be at my ideal weight of 11.5-12 stone for a 5 ft 11 man. I feel lighter on my feet, my hips  and back aren't under so much pressure, my bowels movements are less frequent and much more manageable, and my sleep is better. I look better than I did 9 years ago !! lol 

34

My 24 year old Grand-daughter had an accident last year and hurt her lower back. After that she developed Sciatica . In July this year my Grand-daughter lost a stone in weight in three weeks without trying, couldn't pee, couldn't open her bowels, fell on the floor when both her legs gave way, had numbness when she was able to stand and walk, and has had severe abdominal pain which is there constantly. We have only just had her results of her MRI and one of her discs is missing!!! Well us 

non-doctors all know where that is don't we ? but guess what A&E said ? They said she had Colic, yes you read that right - COLIC I told the Doctor to excuse me as I had to leave the room. !  There seems to be no urgency in treating her at all I am so fuming I have spoken to a Manager who is trying to get her seen quickly. They won't even drain her bladder as she is retaining urine and she had an infection but when we ended up in A&E again, they said that she probably did not have a urine infection but it could be an STI !!!!! Her GP had tested her urine and given her antibiotics for it but no-one wanted to listen at A&E. I was not with her that time, and perhaps just as well because I think I really could have lost it. I can only say that never being a materialstic person I wish I could win the flaming lottery and bypass all these so-called  NHS Doctors - at least she would get instant care.

 

35

hi emma i am lookng to get  some information i am hoping you can me. my husband and ces back in april2014 his bladder is working  with some discomfort passing it he also has trouble with his bowel but is able to go wiith using senicot. my big concern is he can walk with a walker easly but when try to walk on his own he has trouble movinghe also tends to fall everyone once an awhile did you experience any of these problems and did it get better in time i would appreciate it if you would email me back thanks

36

hello i was wondering if your mobility is improving at all my husband  had ces in april 2014 he had bowel and bladder problems but hes off balance with out walker did you experience any of this

37

I was not so lucky. I was sent home from hospital after being sent their with a gp letter. I was one that if they had operated I would have had a lot better outcome. My nerve conditions got worse wee 1st I had a cat her for that then my poo I could not feel to go colostomy in the same year I at to have a I leal conduit a permanent wee bag. My right leg goes dead completely I had loads of feels. I have a stick I use. I was expected to end up like I was. My nerves never joined in the right places. Funny I see my surgeon a week ago my last mri scan shows the whole spin as degeneration changes. He said they thought I would not walk again . My disibility is worsening. . Still I will be ok

38

I was not so lucky. I was sent home from hospital after being sent their with a gp letter. I was one that if they had operated I would have had a lot better outcome. My nerve conditions got worse wee 1st I had a cat her for that then my poo I could not feel to go colostomy in the same year I at to have a I leal conduit a permanent wee bag. My right leg goes dead completely I had loads of feels. I have a stick I use. I was expected to end up like I was. My nerves never joined in the right places. Funny I see my surgeon a week ago my last mri scan shows the whole spin as degeneration changes. He said they thought I would not walk again . My disibility is worsening. . Still I will be ok

39

The disc might have gone to the bottom the spine where the all the nerves branch our like a horse til that why is call caudal equina in Latin horses tail.she needs at least a catheter that goes through the left middle of the tummy. That's what I had first my was done with urgently in a ae. I was about to go bang lol. All my thing I end up with where after the urgent back surgery. If she as this done it will feel better at least. My catheter was changed ever 6 week but after 2 years the infection in it would not go so I end up with a I leal conduit wee bag. I think she should take legal advice plenty of good firms out their. I am the worse caudal equina established syndrome I have a colostomy a wee bag I have no bladder I have had a massive hernia operation I am anemic I have a bleed they are trying to find also I have a incisional hernia which as to be operated on. All this would not have happened if I had the urgent back surgery instead of being turn away and only after I was admitted and scans were done. It was urgent I was rushed in the middle of the night to a neurological unit. Where I was operated on straight away. I miss my old active life had a good job played golf. I get about but in pain the numbness is like when u wake up u have pins and needles where u have laid on ur arm. That feeling never goes away my right leg when stand gos dead with out warn. Back pain is worse now then before the operation. Hope she does get the right treatment.

40

Dear Rabbit and others in this forum.  I've never joined a forum before but after reading your comments, felt compelled to join in and see if anyone can offer me some advice.

Like many of you I have suffered back pain (anything from a dull ache to severe) for a number of years both in my back and down my right leg and foot  I have previously been treated with phsyio and a steroid injection all of which did the job.  Over the past 6 months the pain returned, intitally as a dull ache but has gotten progressively worse.  In the past week, I've have noticed numbness in my saddle area (which comes and goes) and some (not always) diffiuclities passing urine or stools.  I visited the physio who did some work on my back but was concerned about the difficulites passing urine etc.  I visited the GP (actually saw the Nurse Practitioner) who prescribed me stronger pain relief but also said that if i had another episode of numbness or difficulties weeing then to go straight to A&E.  That evening, although i had a few more episodes of numbness, I was able to wee ok.  During the night and as usual I was in a lot of pain from my back to my feet and when I got up in the morning found a slight difficulty weeing but could but whilst showering noticed that had hardly any feeling down below.  I went to work as normal and looked up information.  I decided then to go to A&E as the 'permanent incontence' scared me.  I was seen very quickly at A&E by an on duty GP and then referred to an Orthopedic Consultant there and then.  By this time my numbness in my saddle area had gone (but not my leg which is almost persistent).  After many tests it was decided that as I didn't have full bladder loss and that most of the tests were positive (there was some slight things such as reflexes) that I could go.  I am now awaiting an MRI which they said would be requested as urgent but this could take several weeks.  I've been given advice about when it would be an emergency - such as full bladder loss or pain in both legs not just one etc.  My concern after reading all of your posts is that I could wait for the MRI and in the meantime develop full CES and take the same journey as some of you.  I know what a Drama Queen I am, hence my nickname, so I don't want to over-react but I think now I truly believe that I have early symptoms. Any advice would be welcomed.