Cauda equina - can you recover without surgery

[greenberet]

I recently had an urgent MRI as I have been suffering with lower back pain which is extremely rare for me and was concerned that the big C had returned.

I received an email message from my GP who had been unable to contact me by phone telling me to either contact him before close of surgery or go straight to A & E . Needless to say I was in a bit of a panic even though email said no signs of cancer. The MRI picked up L4/5 discal protrusion with a large focal central component causing compression on the thecal sac and cauda equina

I was seen by emergency team and a young neurologist came to speak to me. I did not require urgent surgery but was told that if I suffered any numbness or incontinence issues to go straight back. Otherwise I would be seen in the clinic in 4 - 12 weeks and have pain killers to manage.

Due to many other issues going on in my life I have been trying to just get on with things but I have been in constant pain which has got increasingly worse and is now mostly in my left calf and ankle -although sometimes it will be in my left hip and back of leg. I have tried not to rely on painkillers as feel the pain is there for a reason and if I mask it I am fearful of doing myself some damage.

However to function I need the pain relief and have so far restricted this to 4 tablets a day but I am still in pain and not able to do much as a result and think I will need to increase these.

Yesterday after much suffering I googled to see if there was anything I could do to help myself and was a bit concerned to come across solicitors specialising in cauda equina negligence.

I have spoken to them today not so much in relation to a claim but to try and gage the severity of my symptoms as I am still waiting to hear with an appointment.

I do not think I have any numbness in the saddle area as such and I am not incontinent however I do have some urine leakage which I had put down to age and menopausal symptoms however I am now wondering whether this is due to c e. I have had a couple of instances of overnight incontinence but nothing continual and again just put this down to age.

I have suffered with left hip pain on & off for most of my adult life but have managed it with yoga exercise but now think this may have been the start of things.

I basically want to know whether this is something that Can clear up on its own with physio and time or whether it will eventually require surgery but from what I have read the NHS will only do this when symptoms are severe and is the nerve damage irreversible if you are incontinent at this stage.

If you have had surgery how long did you have to wait and how did you manage Day to day prior to this.

My home life is chaotic without this and I need to know what may be in store. I am going to try and see my GP to get the appointment chased up.

Thanks for any advice

Did you talk about the incontinence at the time or is it a new development?

Take the flipping painkillers - they don't mask anything and might actually make you feel better.

Get medical advice from medics not solicitors (would you go to a doctors for legal advice?!).

Cauda equina syndrome is a neurosurgical emergency but is not quite the same as having imaging evidence of compression of the CE. Neuro/spine surgeons are very risk averse when it comes to CES so the fact they sent you home means that they do not think you had it at that time. If your symptoms have changed then you should take their safety-netting advice and see someone again. Did you tell them about the urinary symptoms when you saw them?

Yes I spoke about the incontinence - I mentioned that I had thought it was age/ menopause related and the numerologist wasn't sure - I'm trying to establish whether the leakage could be related to this - whether when they say incontinence it is only full on wet your knickers that they are concerned about or whether this is something that gradually gets worse.

I am taking painkillers but obviously if I don't feel the pain I want to
know if I could do damage if I am lifting heavy boxes for example or wielding a hedge trimmer ( both things I have done previously) or whether I need to be careful about my activity.

From the medical evidence I have read it says that this can be an emergency and quick treatment is necessary. I do not want to get to this stage if there is anything I can do to help myself but at the same time I cannot sit around on my arse all day when I need to pack up a house ready for an impending move.

I will be speaking to my Gp but MN is normally helpful with people having experienced most things

Just to add had a recent spell of falling over over nothing - a small stone or a dip in the pavement and would end up flat on my front - put this down to extreme stress at the time As have been under a lot of pressure but I have noticed my ankles have got a lot stiffer (do yoga so very body aware) and now not sure if this is also related.

If it wasn't for the fact that I could not bend to touch my toes I probably would not have even gone to my Gp as I said I have had ongoing hip pain and just thought everything else was stress and/or age/ menopause related - I'm 53
.

As has been previously mentioned cauda equina syndrome, The surgical emergency, is different from a scan showing compression of the cauda equina. At the moment I would assume the risk of surgery outweighs the risk to your spinal cord, hence the decision to ‘watch and wait’. Disc protrusions can and do resolve with time, but you’re talking months rather than weeks. Staying mobile will help, using ice will help, it’s possible some specific exercises would help so I would pursue physio referral if you haven’t had one. Are you just on painkillers or also anti inflammatories? The latter will be helping to reduce compression as well as helping with pain.

Incontinence with cauda equina syndrome is usually ‘trickling’ as you lose the sensation your bladder is full and get overspill. If that and your other symptoms aren’t worsening you can assume the compression hasn’t either.

I think you would benefit from some more support as you recover so I’d go back to the medical team with your questions and seek reassurance and possibly referral for more active management of your recovery if it can be offered.

In addition: absolutely no lifting/ lifting and twisting and avoid bending without bending the knees-no toe touching stretches! And don’t stretch in the first 30mins after waking as your discs rehydrate overnight and risk of increasing protrusion is greater.

Thank you moreismore that is exactly the information I needed to know - I am just on painkillers - I think I am probably suffering with the "trickling" which occurs mostly at night but as I also get night sweats from menopause it has been hard to tell what is what.

You see keeping mobile to me would mean doing exactly what I normally do with the painkillers to mask the pain - but from what you have said even yoga now may not be right as that does involve a lot of twisting and bending.

And lifting I assume means no carrying the Hoover up the stairs, carrying wet washing to the line, lifting boxes in and out the loft all of which I have been doing with the help of pain killers.

Even walking the dog at the moment may be a Nono as he is young and pulls even with a harness on (typical cocker) and this is putting pressure on my back not to mention the pain with walking.

None of this was explained to me and I do not want to do myself more harm as I have no idea how I got this in the first place as my back has always been strong.

I'll try and give my experience! Long, sorry! But it might help

Sciatica for years, occasional severe flare ups. January 2017 my back "went" but it felt different to a usual flare. Gp, painkillers
Work referral to physio and I had 5 sessions. On session 5 she refused to treat me and sent me for an MRI (I owe her everything for this!)
While waiting for MRI results it flared again and I ended up in a&e who did an immediate MRI and referred me to neuro
Neuro said I needed a discectomy and put me on the list, I got an op date of May 2017

March 2017 I went off work sick, I was on diazepam, paracetamol, naproxen, morphine and dihydrocodeine and still crying in pain. I did nothing for the whole of April except stand or lie down

April 2018. I go numb, pain goes

May 2018 and 36hrs before op date. I'm in bed and it feels like water trickling down my legs. I drive(!) myself to a&e and tell them I think I have cauda equina where they ask me to do a straight leg raise. I've lost the ability to feel my foot, or to lift my leg, have foot drop and numbness in saddle area. They try to admit me, my surgery now is 24hrs away and I discharge myself (long story)

I have my op. It takes 5hrs because my herniation (L5/S1) is 15mm, tenting the thecal sac and they have to decompress all the nerves. I walk an hour after surgery, eat all the food and discharged 22hrs later with the surgeon telling me I am wilful, stubborn and need tying down because I did 5000 steps after surgery

6 weeks of no bending, lifting or twisting and no sitting for longer than 45 mins. I realise surgeon didn't say I couldn't squat so adopt that position for feeding the cat. Live alone and wasn't easy. Drive after 8 days, practice emergency stop and feel fine

42 days later. Back on my horse, up to walking 2-3km daily. Surgeon is still at me. Have physio and do loads of core/balance work

3 months later. Back in the gym, spin classes, lifting lightish weights, riding for 45 mins or more

A year on. Lots of back pain. No leg pain but I have scar tissue on the nerve. Surgeon says I am best patient he's ever had and to keep moving is the most important thing. Referral to pain management clinic (next month). Some loss of feeling in foot and leg, surgeon tells me back pain is common but that frankly I am lucky to be able to walk and ride after the worst herniation he's operated on for some time

Ollivander84 thanks for replying - gosh I'm not really sure what to say - were you lucky do you think? I'm also assuming you were pretty fit before all this - seems like everyone has different advice

I went back to GP Friday as pain has moved to front calf and into ankle and painkillers were not helping - he's saying I should have heard - 4 weeks since a&e - so chasing -and given me something else to take at night.

Yesterday pain is back at bottom of spine where I cannot bend - what is this foot drop - I have had pain and stiffness in left ankle for some time - feels like I want to press my foot upwards really hard too put it back in place - dies this make sense? -also just remembered was doing some hip rotation other night trying to get rid of pain and "clunking" in left hip which I usually get felt like it was more in my back pelvis and just logged this is now where my pain is

I really dont know what movement I should or should not be doing
Also this incontinence think is worrying me - feel like I have "dampness" most of the time - you know a bit like when you have a slight discharge - but don't quite know how to monitor this - thought it was all menopause/ old age related but maybe not.