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
david60673 Rabbit
Posted
I think there should have been an emergency GP referral to specialists when you experienced the 'coldness/numbness' along with the trouble mobilising; there is a 3-year Limitation period for Court proceedings and, on the face of it, you are well outside of that. There are other technical considerations though...if you are interested.
reza77 Rabbit
Posted
Hi
My name is reza I read your story and found it similar to mine some how and your guidances
After my surgery may 29 th ,I Got Urinary retention , I have the feeling of full bladder but can't urinate, so I have been using self urinery catheter it's really annoying and
I have numb feeling in saddle region ...half of my hips ,scrotum and penis
I was diagnosed with cauda Equina syndrome ...
according to your experience Could u please give me some tips what to do and How long does it take usually to be recover from urinery retention and be able to pee normally?is there any way or medication etc to fix my problem faster? Actually I read in this website
There is small device which might be helpful
Thank you in advance
Best regards
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maryanne45 reza77
Posted
Hello Reza,
It is good to hear you had surgery. Recovery from CES can be a long slow process. You may not know what you are left with for some time. Have a read of the experiences of others, we are all different. I can recomend you spend money if you have to, to now , to find health professionals that can support you to get your best recovery. I have found physio, tens machine , OT and a supportive GP to be very helpful. In my experience there is not a 'quick fix' to get functions back. It is hard waiting to see how your body will be. This has been a supportive forum for me to access, which is good with CES being 'rare'. Start a new thread if you have a certain question or want replies on the question as the post of 'rabbit' is now very old. Best of luck in your recovery & learning to live with CES.
donal03912 Rabbit
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I hope you brought a medical negligence case against these hopeless doctors. Cauda equina should be checked once there's urinary retention and back pain radiating in buttock area and down leg
Foxyminx Rabbit
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I tried to bring case against them, but solicitors tyell me they need diagnosis of CES to do that, diagnosis of Sciatica Red Flags wasn't good enough :-( even though it means CES suspected
maryanne45 Foxyminx
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Hello,
Did you recieve some surgery or find a helpful physician yet? your story sounds similar to mine. The symptoms were intermittent but predictable in that they just got worse and worse.
I don't think I did recieve a 'CES' diagnosis verbally or written from the nuerosurgeon whom performed the laminectomy before the surgery, he skipped my follow up appointment also. But it stopped the progression so I am also grateful, but mostly to my gp who advocated for me.
Reading back it has been some time you are posting on here with multiple CES red flag symptoms. As I may have said before, I am coming to see Arachnoitis and Chronic Cauda Equina nerve inflammation share the same symptoms. I have been reading more Dr Forest Tennant and ' Arachnoiditis hope' website which has alot of useful public non profit information for chronic CES sufferers too even though it has a different name.
I hope you are getting the help you need now. Don't be afraid to get second and third opinions or ask for help & travel to acess someone, anyone who will listen. It is very hard I know. It also sounds very wrong to me for you to be being brushed off as your nerves deteriorate and you lose verious functions. Good luck to get the help you need soon & meet a sensible doc who will listen.
Foxyminx maryanne45
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Sadly no. I cannot get anyone to help. I wrote to the DR who diagnosed the red flags, asked him to help, but all he said was you need to see your own GP, he should do what YOU ask him to, that is what he gets paid to do. I said well he won't do anythign I ask. But I went back to see GP to try again. All he's done is send me for x-ray of lumbar and left knee both are very painful on walking. I get the results next week.
Even though when GP examined me I could not walk on heels and had NO relflexes in ankles and knees.....he refused to accept I need surgery. He said I wouldn't let anyone cut my back open. They cant operate on those tiny nerve, and lots of other useless phrases he came out with.
?I am going to GP on Monday and I'm taking a packed lunch with me, I am going to sit in that surgery until they do what I ask!!! And if they regard that as viloence then I'll shall say call the Police, then I can tell them how you are leaving me to waste away. I am on the violent patient scheme cos I got angry with a GP pracrtice I used to be at, when they refused to help me. I sent an email saying I ought to shoot you for what use you all are! Leaving my nerves to die-back, not helping me. So the surgery threw me oout and put me with one 20 miles away! So now I have a 40 mile round trip to go to GP!! It was a figure of speech, mre than an idle threat. But the surgery had been trying to get rid of me for ages, so that was their opportunity.
No reflexes in ankles and legs is classic sign of nerve compression. Yet they ignore. Unable to walk on heels is classic sign of L4 nerve compressed, yet they do nothing. I am losing power in my legs, the other day in a shop i squatted down to get something off the bottom shelf and I just couldn't get up. I almost fell over backwards. Then had to push myself up with hands.
On Monday I am going to insist on MRI under general anaesthetic and get them to scan brain and full spine, legs, and feet!
I have a MRA on 15th august as I have Rotational Vertebral artery occlusion too, when I move neck it traps arteries. I had to come on net to get diagnosis from top Neurosurgeon, Dr Corenman, after GPs left me 19 years suffering with misdignosis.
maryanne45 Foxyminx
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Sorry to hear of your troubles, sounds like a very rough time. Have you not even had a recent lumbar MRI lately with these multiple red flags you describe? I can hear you already know time is of the essence if the compression is there in your cauda equina. Severe sciatica can be an emergency too, if it is leading to progressive to 'nuerological deficit' or weakness in legs in english.
Is there someone that can go with you as an advocate to support you? Or as a witness to medical care you do or don't recieve? It is so hard to stay calm advocate for yourself objectively when in pain and being 'fobbed off'.
I think in the UK I have read there are now rules for screening when CES symptoms present, in hospitals anyway. I don't know which country your in. If you are experiencing episodes of numbness, deteriorating motor functions as you describe and loosing bladder function would attending an ER be a way through to help? Or is this a way you have tried? If you are somewhere in care of a doctor and showing signs of CES surely they would have an obligation duty of care to at least do some imaging to screen for CES or severe compression. Sounds very challenging. Good luck in getting some help.
Foxyminx maryanne45
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No I haven't had MRI recently. They were supposed to do one but they didn't. I wish there was someone to go with me, that might help, but I only have my son, he would go I think?
I'm in England, yes when the red flags were diagnosed I was supposed to be seen by a Surgeon, but I wasn't, instead he sent a young man not qualified, and just reported back to surgeon, to me that is not good enough in such a serious issue the surgeon should be seeing me. The guy wrote in report that I needed to be seen by Neurosurgeon, which I was but the last time they still insisted there's nothing they can do, nothing wrong. I told him I have Sciatica, pain right down left leg, hip, to foot, numbness, and the dr said oh you haven't described anything that sounds like Sciatica! What? I thought he was joking. I was gob-smacked, I couldn't believe he could sit there and say such things to me. Unreal.
Foxyminx maryanne45
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Well I did go to emergency room that last time it was bad, but all they did was as I said above, they wrote that they had safety-netted me, in other words checked me for CES, but I had no reflexes in ankles or knees and they still sent me home, I find that appalling. I had foot drop, but as I had to sit on a hospital trolley for hours waiting to be seen by the time they got to me I had rested and the foot drop had eased abit, but I am still to this day unable to walk on heels, that is L4 compression! Why won't they help me? Grr!! So frustrating.
maryanne45 Foxyminx
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Hi,
yes it does sound very frustrating. I read back through your post 2 months ago. It said you were having loss of bladder control? Is it still happening? Surely combined with leg weakness this would warrant an MRI by any doctor that came across this then. Let alone a doctor in a ER part of hospital.
I am sure I had read online about a Cauda Equina support group in UK 'Cauda Equina syndrome UK charity' it is a website for people to ask questions & get support. I just had a look & its still there online & there are also UK numbers to call for help & advice for help to navigate system. Maybe youve already tried that but maybe they could help you now if not.
It sounds very distressing and I understand, trying to accept what might be happening and living day by day is hard enough without getting help. It also sounds very wrong to me that you've not had an MRI to date if you are losing bladder control and power in your legs. Even if you have been somehow a 'difficult ' patient by a gp medical people have an obligation to give medical care. That is not an excuse to withhold basic imaging like an MRI for progressive loss of bladder control with (pain?) and leg / foot weakness. I would try the ER again , or call an ambulence next time you are losing bladder control.
I am no doctor, just a person that has been through something similar. The things I have read about in UK health system make it pretty clear that there is a protocol in the public health system around this with MRI's. I was admiring of this for that country but it doesn't sound like the message is out to the people you've seen. Surely a hospital would have obligation to screen for CES compression with an MRI when any the red flags are presenting in combination.
I am no doctor , but I do understand how your symptoms could come & go but be getting worse as I have experienced it myself. If your getting more weakness in legs day by day and losing bladder control worse day by day you might still be in that window where you might be able to change things and not lose more. It moves slowly but that is not any less an emergency. Good luck getting the help you should have already had with an urgent spinal MRI. This story sounds very very wrong to me.
Foxyminx maryanne45
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Thank you for your helpful words. Yes it is very wrong. I don't know how they can leave someone like this. I shall go back to GP today if possible and will take my son with me, he can stand up for me and say look what is wrong with you people? She needs this sorting!! I did try writing to the Dr that diagnosed the re flags but he says he cant help, I have to see my own GP, they have to do what I ask them, but they dont, they patronise me and dismiss everything I say, apart from he did send me for x-ray of lumbar, what use it that? I need mri!
Foxyminx
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keith94082 Foxyminx
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I was left for 6 days with a major compression. I sued and the nhs paid out after 5 years. I won't go into detail as I have done many times. I have been left with a disibity right side weaker I have foot drop. Both feet drop . I have a colostomy and a ileal conduit a wee stoma. I have at to have my bladder removed as it went septic. I hace had 2 bad hernias removed and a revision of my colostomy stoma it went bad. All this indirectly because of the left compression. They settled before i had the hernias and the revision. I have been told by the back trauma doctor at guys in london that my spine is curved and as numerous problem most caused by not having support put in the back when i had the urgent compression. My solicitor as again to ask why they did not support the back.
Why don't u keep a record have u had Mir scan that will she the lot.
Foxyminx keith94082
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Sorry to hear that, but glad you got compensation eventually. Yes I've had 3 MRI's over last 3 years, all showed prolapsed discs, wear & tear, nerve compression. but when i go to neurosurgeons they say no nerve compression. uh?
I would sue if i could afford to. I've been left 3 years with numb feet.
Foxyminx maryanne45
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Well, I have been to fight my case at GP. I came out more disgusted than when I went in!
I got told all this nerve compression is ..........cos I'm fat!!
I got told to lose weight and all my troubles will go away.
I said No, I have lost 5 stones, but I am still getting worse if it was my weight causing it I'd have got better, not worse. So it's not my weight.
But the GP just argued and argued with me, she sat and found Dr's letters from hospital, and said look it says no nerve compression, I showed her my nerve conduction studies, I said this proved I have nerve compression...my neurologist said I have, that is why he sent me to see a neurosurgeon, all your troubles are neurosurgical he said. Every dept I've seen in hospital say oh it's your spine.
But no, this stupid GP today just insisted she was right, ignored all the evidence, all the test results, and said I will put you on pills to relax muscles in back that will help with pain, and I will give you pills for the bladder, what you describe is reactive bladder some women get after the menopause. I had already told her we tried every pill under the sun and nothing helped!! I told her it is all brought on by exertion.
She wouldn't listen.
So I said sorry I disagree, goodbye.
Then I went to speak to the practice manager but she was on the same vibe, so I got nowhere.
Disgusted isn't the word!!!
I felt like driving into an oncoming bus and ending it all. I cried all the way home.
They are just programmed to recite drivel to us, NHS is screwed, well done government you did it, you stole our nhs!!
All I got was go swimming, lose weight, do pilates. I said fat doesn't compress nerves!!!
I know extra weight will not be good for spine, that's why I'm on a permanent diet, I lost 5 stones, but like I say it has not fixed spine.
keith94082
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Are u in the UK. If so go through ur house insurance or book a appointment with citizens advice they will help u. The Nero surgeons don't like operating have u tried what I did go to another hospital u need a back trauma doctor. They are better then Nero surgeons. I was completely compression it crushed and severed a few.. you must try different places they all can't be idiots. I have had this problem since I have a nerve being pushed so I have arm and neck pains numbness I am biding my time.
You must push ring up firm that do no win no fee. It won't hurt get a 2nd opion they might say yes if they all say no ask for letter explaining why. Hope u have success tours keith keith me inform I like to share and talk.
Foxyminx maryanne45
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GP today....she even thought Lumbosacral Radiculopathy meant `backache` omg!! How are they allowed to be GP's when they know nothing!
No, it means compressed nerves in spine!!
https://www.uptodate.com/contents/acute-lumbosacral-radiculopathy-treatment-and-prognosis
keith94082 Foxyminx
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I know what your feeling u have to keep going. I was nearly 16stone but very fit. I knee in the June 08 that the disc where out that was the 1st 1 of them failing me the hospital I was in done a Mir scan on th 5th of Aug. The sent it to kings when they see it I was taken from my bed at 2am tranfered by blue ambulance. I had bloods taken a nurse went in the show with me I was in a chair the back In to a theatre gown signed form straight to theatre. If the had admitted me on the 1st done a urgent scan then it was there to see. I had no painkillers I could not stand. I remember the pain.
I understand you keep going pain killer are no good when ur nerves are being crushed. Right find out who and were is you clinical commisionairs office is speak to them.. try another approach say the pain is making me emotionally unstable. It very depressed and have thought of ending it. All they got to do is relieve the compression that well help u in every way. 2nd way bluff say u can't poo and wee drag the leg side u get the worse leg pain. It's worth the wait in a&e they must do treatment if u have these clinical red flag the have to follow up.
I have not at to so that but it could work. Keep losing weight believe me u will feel good in ur self. Keith
Foxyminx keith94082
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Thank you. I shall ring citizen's advice today. I need to bring a case against NHS and sue them.
Foxyminx keith94082
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I did ring the clinical commissioning group yesterday and asked if I need to get my GP to put in for funding request for them to do my operation, they said no, your GP should be doing what you need. I said well he isn't. So today I shall ring CCG back and report GP's for abuse/discrimination/negligence because this is appalling to say the least
keith94082 Foxyminx
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Mental cruelty just keep pushing
These people don't realise how painful and debilitating ces is.
I fear for ur out come the long it's left. The recovery is harder. My pain is worse now i hardly go out i fight with my weight. But I try I have had no help the after care was bad no physio. Nothing I have pushed all the time. But I all ways get what I need in the end. You will also get what u want.
maryanne45 Foxyminx
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Sorry to hear that. So rude & ignorant from medical people! I have become somewhat wary of any new ones and if I come across an ignorant or rude condescending one, I avoid them for future if I can and seek out the ones that listen instead of talk at you. I have the support of a good gp who is my allay for many many years. I also use money if it will help me to access care, after all what can we do without helth or quality of life. I am so sorry to hear this support is not happening for you.
I too lost a good percentage of my body weight before. In the case of nerve damage it sadly did nothing when I got much smaller. What helped was the decompression surgery, followed by dedicated medical care- physio, ot, pain management. I try to attack the ongoing management from all angles.
I can hear your still stalled at the start of journey to get the medical help and am so sorry to hear it is so difgicult due to obstructive sounding gp by the sounds. I sincerly hope you find the right person in the right time to get some help. It just takes one good person sometimes. Bye
This said, I do find a small help with regular small protien based meals help keep exhaustion and weight gain at bay. And we need all the help & tools we could possibly get the hands on. I am not suggesting these would fix your issues like your ditzy sounding docs. Good luck with things, sounds too rough still.
Foxyminx maryanne45
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Well to update, what has gone on in last few days is me trying to get help, GPs being useless, me trying to complain, but we do not seem to have complaints system that's any good. NHS just emailed me back and said cant you just do what GP said, lose weight? GP has written lies on my notes saying I can do all the neurology tests fine, when I cannot!! The most important one is walk on heels test, I used to be able to do it now i CANNOT, and this was my point of going to see them to tell them something had changed. but they won't listen. I tried chat with practice manager, she just agreed with GP, lose weight. I put complaint in with NHS england about the GPs and like I say they have done nothing useful yet. I went to GP practice yesterday with eye infection, they refused to give me any ointment, on way out manager saw me at reception desk and said I need a word with you! she told me I have upset the GPs and staff with my complaint, she was not happy at all and had right go at me. so me and her fell out and i left in tears, feeling suicidal.
Foxyminx maryanne45
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Patient_Mod Foxyminx
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Hi Foxyminx
We note from a recent post which you have made to our forum that you may be experiencing thoughts around self-harm. If we have misinterpreted your comments then we apologies for contacting you directly. But if you are having such thoughts then please note that you are not alone in this, and there are people out there that can help.
If you are having these suicidal thoughts then we strongly recommend you speak to someone who may be able to help. The Samaritans offer a safe space where you can talk openly about what you are going through. They can help you explore your options, understand your problems better, or just be there to listen.
Their contact details are on our patient information leaflet here: https://patient.info/health/dealing-with-suicidal-thoughts, which also offers lots of other advice on how you can access the help you may need.
If you are having such thoughts then please do reach out to the team at the Samaritans (or the other people detailed in our leaflet) who will understand what you're going through and will be able to help.
Kindest regards
Patient
Foxyminx Patient_Mod
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keith94082 Foxyminx
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Don't give up if u really feel suicidal u need to get help u need to have someone to listen to u try
Samaritans they will listen a try and help please keep fighting keith
Foxyminx
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Oh panic over folks it's just the site moderating me cos I said I felt suicidal, well what do they expect when I am being left with serious symptoms. scared!
Foxyminx keith94082
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Thank you for your concern, I am ok. I have spoken to nhs England, who are launching a complaint for me. We'll see how we get on. I spoke to Samaritans when I was down, I'm feeling better now, thank you though, appreciate your concern and help.