My experience of Cauda Equina Syndrome
Posted , 103 users are following.
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.
27 likes, 319 replies
shaun13247 Rabbit
Posted
Hello all have been reading through all the comments and I know this was posted like a year ago but am kinda worry il tell you my story
I am a 23 year old lad.I had a major car accident just over a year ago now which lead me to be in hospital for over 6 months with many injuries which one was a spinal fracture I can now not walk without a frame and even when I do I put a lot of weight through my arms I have not very good balance now and I also believe I have foot drop on my right foot, I have numbness down the fronts of my legs and the back of my left leg but have feeling down the back of my right leg can have numbness in my left arse cheek. I do have a stoma but no trouble peeing. The thing that most annoys me is that I can't push up through my legs very well. Would just like an insight of this because my hospital have never really spoke to me about this. And also I more thing I am having physio but will that help
Thank you very much for your time
faye70665 Rabbit
Posted
only reason I
will do it is so many people say it has helped them.
maryanne45 Rabbit
Posted
alan5691 Rabbit
Posted
I'm a 74 yo male and think I may have this CES symptom.
My problem is with a "cold" or "damp" feeling in my groin area which includes buttocks. I feel like I have to "wipe" often but in reality nothing is there. This is so annoying that doctors cannot fix it. I will see a second neurologist on 9/14/16 for a second opinion. The first neurologist did an MRI and he said it was "numbness" or pinched nerves. After surgery of L2, 3, 4 and 5 fusion I still have same "feeling" and left leg feels numb now also. I've contenplated taken a gun to myself, but fortunately I'm not at that stage yet, besides I love my wife enough to not do that to her.
God I hope this can be fixed SOON. I can't take much more after 5-6 years now.
Stupid1 alan5691
Posted
Alan5691,
Don't give anyone pleasure by doing what u r suggesting to urself.
Get out and fine a mall and walk for therapy, get in a group and play games, talk to ur minister this is what they r there for.
You know there r hotlines u can call when u get those thouhts.
Love is all u need. Fake it and turn the bad thoughts Into good thoughts and do things with the wife.
Go to Church kneel down and pray. Go fine other doctors until u get a real one, if the don't know then walk out that door. U don't need referrals. That is what this health care reform was all about, not letting doctors rule
Our healthcare.
God bless
Us and keep us and give us peace
jade52209 Rabbit
Posted
I wonder if anyone out there with same case I'd ces I have had 6 ops now and no longer can wee have to use a catheter now and waiting to have a permanent one done soon!
I am 30 this started 2 years ago I am yet to speak or meet anyone who's had as many ops am also in process of court case with hospital as they treated me rather badly and my life is a total mess have carers everyday and have trouble looking aftet my kids alone they have me on Huge amount of drugs oral morphine fentanal vallum and naproin and press gabalin am at this moment waiting for a amberlance to return to hospital as right leg that has foot drop is completely dead anyone had anything like mine at please get in touch
keith94082 jade52209
Posted
I won my case in 2012. I have been left a mess I was left for 6 days in major compression I have a colostomy and a ileal conduit urostmoy to my wee stoma. I have right leg foot drop I had a house converted ground floor my wife is disabled I was her carer now my youngest daughter and my son in law and the 2 little no live with us I had the top attic converted so they have a lounge computer room and store room it's only 20 years old the house is in mock tudor style on the village green as 6 7 bedrooms it's big. I still own my other house as well I won a lot of money which I have used to make my life bearable. I have pain all the time at to have my bladder removed I have had hernias 3 big operation then I had my colostomy stoma revision. My whole back as got problems. My c6 c7 will be next to be done. I am on a 2 Week assessment stay in St Thomas's I am going to have a disc and battery put in my back its called neuromodulation it breaks the pain signal to the brain. It's the pain that is breaking me even if it reduces the pain it will help. I am suffering with physiological issues because of ces. I still have falls but I get up. This all started in August 2008 I have spent 2 years out of the last 8 in hospital. It help that all 4 of my daughters help us. I am 58 now. I was fit had a good job in the mod security. I played golf maintain my house. Now it's a fight to keep going
dale01979 keith94082
Posted
I had an epidural steroid injection back on May 97 2015 and my entire butt went numb. The facility won't admit it was because of the shot. Although one doctor did put that on my records. My butt still aches really bad.
maryanne45 keith94082
Posted
Stupid1 Rabbit
Posted
Rabbit,
I am on the trigeminal neuralgia forum, I have been having problems with numbness on my
Thigh, lower leg and my labia (private area where women hair grows )
What is call MVD surgery, I was in hospital from July 27, 2016 to August 8, 2016, I started feeling a sharp pain in my both sides off buttock.
ICU for 3 days and a half and one that was moved into the room about two days after I moved in there the therapist tried to get me up out of bed once they tried to get me out, this was 2 days after to my private room.
I complained of really sharp pains in my hips
when they tried to get me out of bed.
I'm allergic to anaesthesia and my doctor said that he was going to give me a different kind something new.
I believe that a lot of problems that are going on with patients who have surgery it's because of anaesthesia
My whole point is that now I have this numbness moving up the right side of my body.
I had the surgery my head was in some kind of surgical brace, my doctor never informed me about any kind of hip brace any kind of head brace.
Once I started complaining about the numbness in my thigh I was ignored. Big boy did they take me on a stretcher to have my back x-ray, the doctor ordered the back scan because I was complaining about my back, but I was complaining about my buttock.
After they did scan
Saud I had a minor disk that maybe was the cause of the numbness.
I never complained about back pain.
I don't know why they gave me a scan of my back.
I believe something happened in the operating room with the gear that they fitted on on my head and they did something to mess up a disc in my back back pain. I have very good insurance but they will not be operating on my back.
I am at home now still have that numbness in nose area and my back has not hurt me know one day,
I believe that sometimes the doctors make excuses in order to get money from the insurance company.
Have a good day
God bless
us and keep us and give us peace
Stupid1 Rabbit
Posted
Some doctors r just in this 4 the money.
Thats my opinion
You noticed I said some.
God bless
us and keep us and give us peace
Cest_la_V Rabbit
Posted
This has been fascinating reading for me, 21 years ago I had a severe slipped disc. My GP had himself under gone a disctectomy and was certain that I too needed this operation. A year later I had a partial disctectomy on my L5S1 - subsequently I have a dent in my left calf that gets deeper if I work the leg, I have little to no sensation from the waist down on the left hand side. Atrophy in my left foot, calf muscle and ham, no left ankle reflex, no crossed extensor reflex (so remaining upright in slippery conditions is hit & miss) I've no temperature control in lower left leg (can have the sensation of feeling so bitterly cold that it can wake me up from deep sleep), my balance is poor and I suffer with electric shock syndrome, usually to my left heel but sometimes can be left side of foot, back of knee & ham, the longest bout lasted for 33 hours straight. My left ankle has the sensation that it is constantly being throttled and whilst I have no actual idea of what this would feel like - when walking, I feel like I'm walking on a stump! I cannot stand for long, sit for long or walk great distances and lying down has to be done on my side so as not to annoy the damaged area. Also my bowel would now appear to be intermittent although I have full control of my bladder. I was swept under the carpet and could get no answers from medical people no matter how many doors I banged on, that is until I was lucky enough to find a really good physio therapist who has now been treating me for over 4 years and recently mentioned partial cauda equine syndrome as an explanation of my condition. It's a bit strange having a label after all these years! thank you
maryanne45 Cest_la_V
Posted
Hi ,
I'm glad you found a good physical therapist. It sounds like it took you a long time of living with CES until it was diagnoised. I was diagnoised by my physio with CES and she helped me understand why it was neccesary to have laminectomy surgery and move mountains to get it in time.
I have just been reading about pain management for arachnoiditis. It seems to share some traits of living with aftermath of slow onset CES as I do. The same kinda loss of function things happen now when I have flares of inflammation with the CES the same as original poster here mentions and as you mention. Reading this thread, we 'partial' ones as you call it, which I've not heard before, are the lucky ones.
Cest_la_V maryanne45
Posted
I want to wish you the very best with your operation. I did not have ces before my spinal surgery so I just want to say, gather as much information as you can, ask questions and maybe even journal the whole experience. I'm not out to frighten you, as my physio therapist says, I was just unlucky!
?Best wishes and let me know how you get on.
maryanne45 Cest_la_V
Posted
Thankyou,
My operation was two years ago. I had slow onset CES as described by 'rabbit' and was gradualy losing sensation in legs and had got to the stage of urinary retention before it was picked up. It was hard to accept I needed surgery but it stopped the progression of CES.
Sorry to hear your CES sounds like it may have been caused by a surgery? That is good advice you give for those considering surgery. I am in the process of accepting where I am at now, as from reading here and my own experience, there may be no magic recovery coming 2 years in. I have lost weight and do physio. I nourish myself and try to stay healthy in other ways. It is hard to accept this cannot always 'fix' damage of CES. But I am grateful to be walking and have the (mostly) functioning body systems. Pain is a part of life now but it is much better than going numb.