Prolapsed disc L5S1 Pain unbearable

Hi Jackie, I'm a community mental health nurse and I returned back to work 6 weeks after surgery. I had two prolapsed discs at L4:L5 and L5/S1, with s compressed L5 nerve root. I had this for 7 years with the orthopaedic team using epidurals and nerve blocks to take away the sciatic pain. I was put on the waiting list in January 2015 with the prospect of a 6-8 month wait. I ended up in A&E in April 2015, as couldn't walk or sit, and was give crutches and morphine. I had to fight to see the consultant again, but did on the 14th may, my operation was on the 28th may. I had a 2 level lumbar fusion and decompression. I woke up in recovery with no sciatic pain, I was off all pain meds by 2 weeks, walking 5 k with no pain by 4 weeks and started a phased return to work at 6 weeks.

I would definitely recommend this surgery, although I've still been left with a numb outer left leg and little toe. This may or may not return.

Hope you get an appointment soon and a treatment plan.

Good luck

Hi Angie

thanks for your reply.  I can't imagine having to suffer such pain for so long. I'm hope the surgeon who I have been referred to agrees with the orthopaedic surgeon that surgery is required.  The MRI shows prolapsed disc which is pressing on the nerves.  The pain is unbearable even with meds.  I had been trying not to take the meds as scared that I will become dependant on them, however, following my recent admission to hospital and discussion with Othopedic doctor I realise I need to take them.  My physio has advised he will no longer be involved as it will do nothing to help my problem.   It is starting to get me down. I am a very independent person and hate having to rely on others to help me.  It's me who normally does the caring role. 

 

Hi Jackie,

I have disc prolapses L3/4 and Lisa but showing no nerve compression bizarrely. It's a long story if you'd like to read my other posts but I have had similar pain and symptoms to you as well as drop foot for the past three years. I was admitted to the same hospital in Glasgow as you for what I assumed would be emergency surgery only to be told that it's not my discs according to mri. This has been going on for three years now during the pregnancy and bringing up of my two children and returning to work full time as a deputy head of a high school.

What I'm trying to get around to is if I could have had surgery I would have bitten their hands off. Whilst I was on the surgical ward I saw patients arrive with chronic pain and loss of function and leave fine on minimal painkillers.

I have now started taking pregabalin which has had a positive effect on my pain and foot drop but leaves me a zombie. I am looking at 20+ tablets a day and being off work for at least another 6 months. I had lost bladder function and can't understand the fact that my mri is showing no nerve compression. I'm looking into having a weight bearing mri but will have to travel to leeds for that, I'm seeing orthopedic consultant this week.

If I wasn't on 6 pregabalin a day I wouldn't be able to stand or walk with crutches. I feel like the nhs has just left me to get on with it. So I would be relieved to have surgery and not to have chronic sciatica for more years to come. The surgeons at Glasgow were fantastic unfortunately they had no fix for me.

I hope this isn't too negative, I just wanted you to hear from someone who is a similar situation but without the option of surgery. Let us know how you get on, good luck and I hope you can be pain free.

Hi,

I am also a community based professional and understand the specific demands between home visits and sitting at a desk writing records/ reports which plays havoc with a back problem. I had an emergency L5/S1 surgery (majority of the disc removed) due to Cauda Equnia two years ago. Initially the recovery from the leg pain was almost immediate but the nerve damage caused by the CES took several years. After surgery I took six weeks and then gradual return to work. Initially I found siting for any length of time difficult and often when visiting people's home you have no control on where you seat and began to question that I might have to stop working in the community, however this pain reduced over time but still present especially if I don't keep mindful of my posture. I would recommend you ask for a workplace assessment on return to work to get a chair specific for you that your colleagues know not to adjust. I found a good office chair make a big difference to the pain levels at the end of the day. During the recovery period being extra careful with posture and avoiding bending reduces the risk of the disc re-herniating again. I also arranged specialised physiotherapy/ rehabilitation gym using specially designed weight machines to built up my core muscles which also reduced the pain. The NHS physiotherapy was beyond useless. 

A word of caution, I was told when I first presented to A&E that I had semi CES when I think it was full CES from the start. Check out the symptoms list for Cauda Equnia, incontinence often happens when the condition is advanced. Monitor for any changes in urine flow, signs of retention, unable to feel passing urine or that the rectum is full? If noted flag it up asap. I don't mean to alarm and I am sorry if having done so, I just wish I was aware two years ago as I was just focused on monitoring for incontinence- when I in fact I was in urinary retention which a major red flag for CES as well. They delayed emergency by over three weeks as the initial neurosurgeon was just interested in incontinence.

Take care and best wishes. 

Hi Helen,

I hope that the appointment with orthopaedic consultant goes well, providing some answers and a treatment plan too. I am glad to hear the pregablin is working and hopefully the drowsiness will reduce over time as it did with me. 

Take care  

Hi again,

Just another comment on cauda equine symptoms. I was later told that amitriptylene can make it hard to urinate. I wasn't aware of this but on 20mg a day I don't buy that was the cause. I also had full saddle numbness and couldn't feel the pins they were sticking in me. The surgeons were more concerned with sudden onset rather than gradual like mine.

Thanks fiona, I hope to get some answers too! Good luck again to you all!

Hi 

thanks for your responses.  I have chased up my "urgent"'referral to be advised I am in a waiting list and will receive an appointment within 10-12 weeks.  I was advised by orthopaedic surgeon at Hairmyres that i have a prolapsed disc which is pressing in the nerves, however despite having some numbness around gentle area, lack of feeling during inter course and little feeling when needle test around anus and gentile area I was advised I am not an emergency as I know when I need to pass urine (do dribble) and move my bowels (despite being constipated which is new).  My thigh and foot are numb, Imhave no ankle reflex and I constantly have pins and needles and pain (burning/stretching sensation).  The Orthopedic Surgeon says I need surgery but I'm really worried re the time it is raking to be seen by neurologist especiallybreading posts.  So fed up just don't know what to do as thought an urgent referral would mean I would be seen quickly.  I can't sleep feeling exhausted and emotionaly drained.

Any thoughts or advice.

jackie

Hi,

CSE is rare and I suspect that in my case even the initial neurosurgeons I saw were not that clued up about the condition. However when they said it was semi CES or incomplete CES they were talking about a way shorter time wait than 12 weeks! I have read, there is a UK based Cauda Equnia support group (Cauda Equnia syndrome UK charity) and I would suggest contacting them as they have a specialist Nurse working with them part of the week. If you check the Cauda Equnia forums on this site, the nurse from the support group has posted a list of symptoms and argues that signs of incomplete CES should also be taken seriously. They may be able to give further advice which you can then take back to the hospital to discuss? I don't understand if they are saying you need surgery why are they involving the neurologists instead of neurosurgeons? Have they provided the rationale for this taking this action? 

The issue with incontinence is complex as leading up to to the day of the surgery, I was experiencing numbness around the bottom and it felt like the muscle (anus) had stopped working leading to constipation but no bowel incontinence and I constantly felt the urge to pass urine only to pass a small amount each time with sight dibble (again no noticeable urinary incontinence) which in hindsight was a sign of overflow. After presenting to A&E when I first noted the complete saddle numbness which was 3 months after the severe leg pain, drop foot, no ankle reflexes started (all these signs are part of the CE syndrome). The first surgeon insisted that I return to my GP to get a referral ( money for the hospital was more of a priority than my health!). It was only weeks later when I kept pressing the hospital about referral that they arranged an emergency MRI and having surgery within hours. The surgeon who performed the procedure was angry that they even considered it to be incomplete CES in the first place. The reason for sharing is not to scare but to advise to keep monitoring and if noted return to A&E. I knew something was very wrong but believed the doctors when they said that they had time to arrange surgery as no incontinence. It is interesting that they recommending surgery for nerve compression around ? CE but don't consider it to be urgent? How they explained why they think it can wait 12 weeks? 

I can relate to the feeling of being emotionally drained and I hope everything gets sorted out for you asap. Keep being persistent with the doctors. If it is any consolation the surgery initially made such a positive difference.

Take care

Hi Jackie,

I'm so sorry to hear that you are experiencing all the delays I have, it is beyond frustrating. I was told I was a ( high priority ) referral only to be told that I had a 3-6 month wait to see a consultant. His secretary laughed down the phone at me and when I explained I couldn't sleep, sit , stand or eat she told me to visit A&E which I did to get sent home with crutches and more meds.

By this point I'd had rung Nhs direct on four occasions screaming in pain, they sent out night doctors to give me morphine honestly it's been so stressful.

My desperation meant I had booked an appointment at Ross Hall for a consulation with Mr William Taylor who is a Neuro-Surgeon and spinal specialist. I'd borrowed money to pay for the mri+surgery. I don't know if going the private route is an option? I couldn't bear the pain any more, especially as last time I couldn't walk for seven months.

Sorry for all the detail hopefully some of that information will help you! My doctor tried to speed up my referral to no avail, maybe yours will have more luck. Try to keep positive and keep harassing your doctor or the hospital, anyone you think can help really. This forum is great for support and advice, it has been a lifeline to me. Hope you get seen soon. All the best, take care

Hi guys

looking for more advice.  Should I be worried that the sole of my foot is also going numb.  This is new.  My heel has been numb as has my three little toes but today sole going numb and I also have an itchy feeling.  Pain isn't good today so not sure if I should be worried about the change.

jackie x 

Hi Jackie,

I get numbness after the pain and it's a sign that the nerve root has been compressed for a while. I'm at the end of my rope today as I travelled three hours to the hospital for my appointment with the consultant today. I had to pay to stay in patient accommodation as I couldn't manage the journey there and back in one day. My husband had to drive home (3hrs ) and was coming back to take me to the appointment today. When he got home there was a letter on the mat posted Tuesday saying my appointment was cancelled. On being told this in the morning I went absolutely nuts, unable to see a different consultant I just had to go home.

The appointment has been rearranged for two weeks time, this is a meeting I have waited for for four months. I'm so disappointed and frustrated, not to mention the chronic pain after sitting in a car for no reason for six hours. Apparently someone was meant to ring me to cancel but couldn't be bothered and they just sent a letter. I know you all get how this must feel, I've been crying all day. I had got all my questions ready for the consultant and am so distressed. In two weeks I have to do this all again but with the kids in School and no family nearby it'll harder to organise. I'm going to make a formal complaint, I just can't take the NHS any more!!!! Sorry for the rant.

Hi Helen

that is absolutely shocking. They must have had a consultant at the clinic who could have fitted you in.   You make sure you put in a formal complaint and get compensation for the expenses you have endured. I know that doesn't help the situation you found yourself in but you should not be out of pocket given you need to do the same journey again.  That is some journey to travel. No wonder your pain has increased.   I am fortunate that my local hospital is only a 10 minute drive and the one I have been referred to  is apprx an hours drive. 

I Went into my office yesterday for a visit, thought I could manage the 20 minute drive there and back.  Big mistake been paying for it all day.  Now in my bed as shattered as I didn't sleep a wink last night,

The secretary of the orthopaedic surgeon who referred me to Neurology  telephoned me today to confirm my surgeon has written to the surgeon at Neurology advising why he feels I should be seen urgently. I phoned Neurology who confirmed the letter has been received, however, the surgeon who will review it is on holiday.  Keeping my fingers crossed he agrees to see me sooner.

is the itching a sign of the nerve having been compressed?  I could tear my foot off.  When Try scratching it makes no difference due to numbness around the area. 

You take care and hope your appointment gets you the answers you need when you eventually get it. M