Cauda Equina Syndrome (CES)
Discussion
Can't find another thread by PHers with CES so, seeing as I've had a recent baptism by fire, thought I would start one.
Essentially I was a reasonably healthy 34 year old suffering some mild lower back and sciatica pains over a period of 3-4 months. Last weekend I woke up with partial numbness in the buttocks and perineal / scrotal region. I had no idea at the time but this was an early manifestation of cauda equina syndrome.
Fast forward a few days and having been fobbed off and sent home by A&E I end up in an ambulance with searing pain in both thighs, inability to stand and also retention of urine. Fortunately this got me straight into the hands of spinal specialists and I had both an MRI and spinal cord decompression (by removing some disc material) on am emergency basis within hours.
6 days later I'm walking, feeling good but with some neurological damage - I'm being taught how to manage bowel incontinence, it also takes me 5 minutes to empty my bladder under straining and sexual function (albeit yet untested) is likely to be impaired too. These issues may resolve in days/weeks/months/years or they may be permanent.
All in all a massive shock to the system but I'm practically minded and determined to crack on and deal with it as necessary. I'm a contractor so compelled to get back to work at the soonest opoortunity - of course integrating these new issues with working successfully on client sites is my biggest anxiety.
Just wondered if anyone has had the same or similar neurogenic bladder or bowel issues.
Essentially I was a reasonably healthy 34 year old suffering some mild lower back and sciatica pains over a period of 3-4 months. Last weekend I woke up with partial numbness in the buttocks and perineal / scrotal region. I had no idea at the time but this was an early manifestation of cauda equina syndrome.
Fast forward a few days and having been fobbed off and sent home by A&E I end up in an ambulance with searing pain in both thighs, inability to stand and also retention of urine. Fortunately this got me straight into the hands of spinal specialists and I had both an MRI and spinal cord decompression (by removing some disc material) on am emergency basis within hours.
6 days later I'm walking, feeling good but with some neurological damage - I'm being taught how to manage bowel incontinence, it also takes me 5 minutes to empty my bladder under straining and sexual function (albeit yet untested) is likely to be impaired too. These issues may resolve in days/weeks/months/years or they may be permanent.
All in all a massive shock to the system but I'm practically minded and determined to crack on and deal with it as necessary. I'm a contractor so compelled to get back to work at the soonest opoortunity - of course integrating these new issues with working successfully on client sites is my biggest anxiety.
Just wondered if anyone has had the same or similar neurogenic bladder or bowel issues.
Sorry to hear about your experience. CES is a tricky one as the clear red flag signs are often late to present and by that time the situation is often critical.
Spinal physio has improved hugely recently and that will be the key to recovery - neuro-rehab if your spinal team can arrange it.
Unfortunately it can be a slow road to recovery with neuropraxia symptoms and hopefully things will improve with time. Where I am (currently on a T&O job including spinal admissions) they have a high k-series of CES patients and there is still some difficulty diagnosing clinically and getting people into theatre within the magical 6hours as its hard to identify the true cases early on.
Fingers crossed for your recovery and getting back to work.
Spinal physio has improved hugely recently and that will be the key to recovery - neuro-rehab if your spinal team can arrange it.
Unfortunately it can be a slow road to recovery with neuropraxia symptoms and hopefully things will improve with time. Where I am (currently on a T&O job including spinal admissions) they have a high k-series of CES patients and there is still some difficulty diagnosing clinically and getting people into theatre within the magical 6hours as its hard to identify the true cases early on.
Fingers crossed for your recovery and getting back to work.
I wish I knew what I now know about CES, barely 10 days ago.
Essentially for the first A&E visit I presented symptoms of incomplete CES (CESI) with numbness in the saddle area but also crucially (which I explained clearly) very slow/strained passing of urine.
This degenerated to CESR with overflow incontinence approximately 36 hours later when I was already in a second A&E, and I was operated on within 12 hours of that point.
The first A&E doc spoke to and then referred to an orthopaedic consultant with an appointment offered some 48 hours later, by which point I had jusr been operated upon.
As I understand it, if the first A&E docs had escalated to emergency MRI and I'd had the discectomy whilst still in the CESI stage, my prognosis would be much better.
If the paralysis impairing bladder/bowel (and potentially ED - not sure yet) persists then you can bet I'll be thinking litigation - but I'd rather just hope to get better at this stage.
Essentially for the first A&E visit I presented symptoms of incomplete CES (CESI) with numbness in the saddle area but also crucially (which I explained clearly) very slow/strained passing of urine.
This degenerated to CESR with overflow incontinence approximately 36 hours later when I was already in a second A&E, and I was operated on within 12 hours of that point.
The first A&E doc spoke to and then referred to an orthopaedic consultant with an appointment offered some 48 hours later, by which point I had jusr been operated upon.
As I understand it, if the first A&E docs had escalated to emergency MRI and I'd had the discectomy whilst still in the CESI stage, my prognosis would be much better.
If the paralysis impairing bladder/bowel (and potentially ED - not sure yet) persists then you can bet I'll be thinking litigation - but I'd rather just hope to get better at this stage.
HughS47 said:
Sorry to hear about your experience. CES is a tricky one as the clear red flag signs are often late to present and by that time the situation is often critical.
Spinal physio has improved hugely recently and that will be the key to recovery - neuro-rehab if your spinal team can arrange it.
Unfortunately it can be a slow road to recovery with neuropraxia symptoms and hopefully things will improve with time. Where I am (currently on a T&O job including spinal admissions) they have a high k-series of CES patients and there is still some difficulty diagnosing clinically and getting people into theatre within the magical 6hours as its hard to identify the true cases early on.
Fingers crossed for your recovery and getting back to work.
Interesting post and thanks for your support. I've spent my first day at home and its comforting to be back in familiar surroundings.Spinal physio has improved hugely recently and that will be the key to recovery - neuro-rehab if your spinal team can arrange it.
Unfortunately it can be a slow road to recovery with neuropraxia symptoms and hopefully things will improve with time. Where I am (currently on a T&O job including spinal admissions) they have a high k-series of CES patients and there is still some difficulty diagnosing clinically and getting people into theatre within the magical 6hours as its hard to identify the true cases early on.
Fingers crossed for your recovery and getting back to work.
Ive just read this post with fear! I just started my own post about a disc bulge, and have read a lot about CES when trying to deal with my issues. Hopefully I am nowhere near that stage now, fingers crossed.
I am also 34. Did it all come out the blue for you or did you have a history of back issues? I have found the doctors and NHS during all of my problems to be absolutely awful, I can only assume they get so much back issues that they reject all of it but for the worst cases. I struggled to get anywhere, even getting pain meds was difficult. Getting any sort of referral seemes impossible. I was lcuky to get an MRI when I did, but that;s the only thing I benefited from. I feel like I have just been sidelined and tutted at whenever I seek medical help from them. Plus the NHS physio has been next to useless.
I am also 34. Did it all come out the blue for you or did you have a history of back issues? I have found the doctors and NHS during all of my problems to be absolutely awful, I can only assume they get so much back issues that they reject all of it but for the worst cases. I struggled to get anywhere, even getting pain meds was difficult. Getting any sort of referral seemes impossible. I was lcuky to get an MRI when I did, but that;s the only thing I benefited from. I feel like I have just been sidelined and tutted at whenever I seek medical help from them. Plus the NHS physio has been next to useless.
Hi Dizeee. I had mild lower back pain and sciatica in my left leg for a period of 4 months or so... probably by a 'bulging' disc rather like yours although at the time I knew very little about these things.
The transition to CES, which must have coincided with the disc extrusion suddenly becoming much more severe, was very rapid - I literally just woke up with partial numbness in the groin and to a lesser extent in both legs. My first real 'WTF' moment came when sitting for a number 2 and realising I couldn't actually tell when it was coming out.
I gave this a little bit of time to recover thinking I may have just slept in a funny position - then came the bodged A&E episode whereby I was examined but sent home - it was 36 hours after this that things got *really* bad and I developed full blown CESR - characterised by urinary incontinence and it just so happened the most agonising pain I've ever experienced - what is termed as neurogenic pain, like an intense burning from the base of my spine down the back of both thighs. It was like the sciatica I had experienced but with the pain dial turned up to some piss-taking new level. Paramedics turned up, didn't really seem to know what to do with me, but eventually injected morphine and got me out of the house.
This rapidly worsening symptoms got me straight into a spinal unit after which MRI and a discectomy took place on an emergency. My diagnosis by the consultant reads "L5/S1 large disc extrusion with severe cauda equina compression in the presence of a transitional level and congenitally tight canal."
All I can say is, if you ever get any worsening of your symptoms to the point where there is suddenly numbness and any sort of bladder or bowel issue - don't f
k around. Don't bother with your local hospital either - it was only when I got referred to a spinal injuries unit that things happened quickly - but may have been too late. I didn't appreciate the severity of what I was dealing with, in the time period which was most critical to the long term outcome.
The transition to CES, which must have coincided with the disc extrusion suddenly becoming much more severe, was very rapid - I literally just woke up with partial numbness in the groin and to a lesser extent in both legs. My first real 'WTF' moment came when sitting for a number 2 and realising I couldn't actually tell when it was coming out.
I gave this a little bit of time to recover thinking I may have just slept in a funny position - then came the bodged A&E episode whereby I was examined but sent home - it was 36 hours after this that things got *really* bad and I developed full blown CESR - characterised by urinary incontinence and it just so happened the most agonising pain I've ever experienced - what is termed as neurogenic pain, like an intense burning from the base of my spine down the back of both thighs. It was like the sciatica I had experienced but with the pain dial turned up to some piss-taking new level. Paramedics turned up, didn't really seem to know what to do with me, but eventually injected morphine and got me out of the house.
This rapidly worsening symptoms got me straight into a spinal unit after which MRI and a discectomy took place on an emergency. My diagnosis by the consultant reads "L5/S1 large disc extrusion with severe cauda equina compression in the presence of a transitional level and congenitally tight canal."
All I can say is, if you ever get any worsening of your symptoms to the point where there is suddenly numbness and any sort of bladder or bowel issue - don't f
k around. Don't bother with your local hospital either - it was only when I got referred to a spinal injuries unit that things happened quickly - but may have been too late. I didn't appreciate the severity of what I was dealing with, in the time period which was most critical to the long term outcome.Edited by theboss on Tuesday 12th April 14:04
Thanks for reply.
I never really got as far as pins and needles in the leg stage so I'm hoping v much my bulge is nowhere near your level. The hospital weren't that bothered by ut saying it was small and I have never to my knowledge had neural compression. That's not to say it's bloody painful though and 10 months of symptoms have really got to me.
Having said that I'm on the way out of it now hopefully with minimal painkillers and regular stretching and core work.
The whole thing has given me a long term fear of relapse and an anxiety that I can't see going anytime soon.
I never really got as far as pins and needles in the leg stage so I'm hoping v much my bulge is nowhere near your level. The hospital weren't that bothered by ut saying it was small and I have never to my knowledge had neural compression. That's not to say it's bloody painful though and 10 months of symptoms have really got to me.
Having said that I'm on the way out of it now hopefully with minimal painkillers and regular stretching and core work.
The whole thing has given me a long term fear of relapse and an anxiety that I can't see going anytime soon.
Rest assured the MRI should tell them pretty much everything they needed to know at that time and would have highlighted any compression - I have no doubt the constant pain and discomfort wears you down though.
That's probably the only good thing about CES - the numbness can completely mask pain and discomfort. The only time I squealed like a girl in hospital was when I had a surgical sticky thing ripped off my back
That's probably the only good thing about CES - the numbness can completely mask pain and discomfort. The only time I squealed like a girl in hospital was when I had a surgical sticky thing ripped off my back
Yes, interestingly I had a conversation with a friend of mine who was a doctor, funnily enough in orthapeadics many moons ago.
He was explaining to me that nerves have 3 layers so to speak and 3 consequent symptoms depending on the level of problem. 1st being pain where the nerve is touched or bothered by nearby activity, 2nd being pins and needles where the nerve is being compressed in some way and 3rd numbness, which in his words, means your nerve is in trouble and needs serious attention. It seems ironic then that the worse condition your nerve is in, seemingly the less pain you have.
The weird thing for me is that my first issue was out of the blue in June whereby having been asleep all night and woken up in the morning, my entire left leg shut down and went into spasm, it was some sort of sciatic nerve trap. It is to date the worst pain I have been in, and showed me how much pain a human being can actually physically be in. I was unable to stand straight or walk, and had to concentrate conciously in order to breathe. It was pure fluke this happened 2 hours prior to a pre planned GP appointment. I was carried there pretty much by my wife, and had to crawl through the surgery into the GP room. I couldn't have cared less what people there thought, all I knew I was in serious trouble, and needed help fast. Within a few hours the diazepam and codeine had released the "lock" and within days I was mobile. It has never happened since, and the guitar string ping like sensations I had just prior to the lockup have never re surfaced either. I was fine for around 3-4 months until my current issues started, although that all came about because of a definitive injury through lifting a cabinet and the symptoms have been very different to that day in June.
Nobody has ever been able to explain what happened to me that day. All I know is I did nothing to cause it hand had been enjoying 3 days off work in the sun prior to it. Literally, something pinged at the base of my spine, then down my leg and left me tooth ache feeling in base of my spine. The lock up then happend the next day as I woke. All I did was lift my leg in bed.
He was explaining to me that nerves have 3 layers so to speak and 3 consequent symptoms depending on the level of problem. 1st being pain where the nerve is touched or bothered by nearby activity, 2nd being pins and needles where the nerve is being compressed in some way and 3rd numbness, which in his words, means your nerve is in trouble and needs serious attention. It seems ironic then that the worse condition your nerve is in, seemingly the less pain you have.
The weird thing for me is that my first issue was out of the blue in June whereby having been asleep all night and woken up in the morning, my entire left leg shut down and went into spasm, it was some sort of sciatic nerve trap. It is to date the worst pain I have been in, and showed me how much pain a human being can actually physically be in. I was unable to stand straight or walk, and had to concentrate conciously in order to breathe. It was pure fluke this happened 2 hours prior to a pre planned GP appointment. I was carried there pretty much by my wife, and had to crawl through the surgery into the GP room. I couldn't have cared less what people there thought, all I knew I was in serious trouble, and needed help fast. Within a few hours the diazepam and codeine had released the "lock" and within days I was mobile. It has never happened since, and the guitar string ping like sensations I had just prior to the lockup have never re surfaced either. I was fine for around 3-4 months until my current issues started, although that all came about because of a definitive injury through lifting a cabinet and the symptoms have been very different to that day in June.
Nobody has ever been able to explain what happened to me that day. All I know is I did nothing to cause it hand had been enjoying 3 days off work in the sun prior to it. Literally, something pinged at the base of my spine, then down my leg and left me tooth ache feeling in base of my spine. The lock up then happend the next day as I woke. All I did was lift my leg in bed.
Dizeee said:
Yes, interestingly I had a conversation with a friend of mine who was a doctor, funnily enough in orthapeadics many moons ago.
He was explaining to me that nerves have 3 layers so to speak and 3 consequent symptoms depending on the level of problem. 1st being pain where the nerve is touched or bothered by nearby activity, 2nd being pins and needles where the nerve is being compressed in some way and 3rd numbness, which in his words, means your nerve is in trouble and needs serious attention. It seems ironic then that the worse condition your nerve is in, seemingly the less pain you have.
The weird thing for me is that my first issue was out of the blue in June whereby having been asleep all night and woken up in the morning, my entire left leg shut down and went into spasm, it was some sort of sciatic nerve trap. It is to date the worst pain I have been in, and showed me how much pain a human being can actually physically be in. I was unable to stand straight or walk, and had to concentrate conciously in order to breathe. It was pure fluke this happened 2 hours prior to a pre planned GP appointment. I was carried there pretty much by my wife, and had to crawl through the surgery into the GP room. I couldn't have cared less what people there thought, all I knew I was in serious trouble, and needed help fast. Within a few hours the diazepam and codeine had released the "lock" and within days I was mobile. It has never happened since, and the guitar string ping like sensations I had just prior to the lockup have never re surfaced either. I was fine for around 3-4 months until my current issues started, although that all came about because of a definitive injury through lifting a cabinet and the symptoms have been very different to that day in June.
Nobody has ever been able to explain what happened to me that day. All I know is I did nothing to cause it hand had been enjoying 3 days off work in the sun prior to it. Literally, something pinged at the base of my spine, then down my leg and left me tooth ache feeling in base of my spine. The lock up then happend the next day as I woke. All I did was lift my leg in bed.
I had that some 10 years ago. It felt like I'd been stabbed in the back. I too was on all fours. I had tests on sensation in my legs and passed and then was given pills. Ibuprofen makes me vomit so I was in the situation of once having to crawl through my own vomit to the toilet.He was explaining to me that nerves have 3 layers so to speak and 3 consequent symptoms depending on the level of problem. 1st being pain where the nerve is touched or bothered by nearby activity, 2nd being pins and needles where the nerve is being compressed in some way and 3rd numbness, which in his words, means your nerve is in trouble and needs serious attention. It seems ironic then that the worse condition your nerve is in, seemingly the less pain you have.
The weird thing for me is that my first issue was out of the blue in June whereby having been asleep all night and woken up in the morning, my entire left leg shut down and went into spasm, it was some sort of sciatic nerve trap. It is to date the worst pain I have been in, and showed me how much pain a human being can actually physically be in. I was unable to stand straight or walk, and had to concentrate conciously in order to breathe. It was pure fluke this happened 2 hours prior to a pre planned GP appointment. I was carried there pretty much by my wife, and had to crawl through the surgery into the GP room. I couldn't have cared less what people there thought, all I knew I was in serious trouble, and needed help fast. Within a few hours the diazepam and codeine had released the "lock" and within days I was mobile. It has never happened since, and the guitar string ping like sensations I had just prior to the lockup have never re surfaced either. I was fine for around 3-4 months until my current issues started, although that all came about because of a definitive injury through lifting a cabinet and the symptoms have been very different to that day in June.
Nobody has ever been able to explain what happened to me that day. All I know is I did nothing to cause it hand had been enjoying 3 days off work in the sun prior to it. Literally, something pinged at the base of my spine, then down my leg and left me tooth ache feeling in base of my spine. The lock up then happend the next day as I woke. All I did was lift my leg in bed.
The pain went, rather too gradually for me, and within two days I could stand, a day later unaided. I ended up with a weakness in my back which meant having to sell my TVR as I couldn't depress the clutch.
After five years or so I noticed my toes were numb, I had constant tingling in my right leg and a numb area. Doctor was OK, putting me through tests, but they obviously had something in mind. I had, and have, no reflexes.
I had occasions of sciatica that kept me awake at night.
A new doctor - I moved - tried something else and I'm now under treatment. Two visits to a physio and with changes to lifestyle and lots of exercise, things are improving. That said, I was told to get an ambulance if I was ever incontinent or had numbness and I've got a letter to give to the doctor. I'm to do it at once.
It is a bit worrying but there's little I can do about it except lose weight and exercise more.
theboss said:
Rest assured the MRI should tell them pretty much everything they needed to know at that time and would have highlighted any compression - I have no doubt the constant pain and discomfort wears you down though.
That's probably the only good thing about CES - the numbness can completely mask pain and discomfort. The only time I squealed like a girl in hospital was when I had a surgical sticky thing ripped off my back
sounds like A+E may well have missed some red flag symptoms That's probably the only good thing about CES - the numbness can completely mask pain and discomfort. The only time I squealed like a girl in hospital was when I had a surgical sticky thing ripped off my back
have you been referred to the relevant Regional Spinal Injuries service ... as the RSICs are NOT just for people who are paralysed and they are the experts on the continence and sexual stuff ....
Shropshire ( based on your location given in your profile ) would likely be Oswestry RSIC's patch http://www.rjah.nhs.uk/Our-Services/Spinal-injurie...
Edited by mph1977 on Tuesday 3rd May 00:28
Yep, I was dealt with at RJAH in Oswestry and have a 6-week follow up with my spinal surgeon this week.
So far mobility has improved noticeably in the last week or so, people have observed I am walking more normally and have been able to do so sans sticks over even surfaces.
Bladder and bowels will require ongoing care - no discernible improvement in sensations yet but its too early to know if it'll be permanent. I've started using the Peristeen irrigation system which flushes out ones descending colon and buys about 36 hours without any worries, but its obviously far from normal and I certainly won't be on the vindaloo any time soon.
Sex life doesn't really come into it at present but will almost certainly be impaired owing to significant desensitisation; the wife of 12 years wants to separate but thats another "private detective" thread in the making I'm sad to say.
So far mobility has improved noticeably in the last week or so, people have observed I am walking more normally and have been able to do so sans sticks over even surfaces.
Bladder and bowels will require ongoing care - no discernible improvement in sensations yet but its too early to know if it'll be permanent. I've started using the Peristeen irrigation system which flushes out ones descending colon and buys about 36 hours without any worries, but its obviously far from normal and I certainly won't be on the vindaloo any time soon.
Sex life doesn't really come into it at present but will almost certainly be impaired owing to significant desensitisation; the wife of 12 years wants to separate but thats another "private detective" thread in the making I'm sad to say.
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