hi
I have had sciatica for 4-5 months and pain has been awful. Numb down leg and foot (left side). I have no ankle reflex and now lost some sensation in genital area and bottom. I was admitted to hospital last week and had MRI scan which shows prolapsed disc, however was advised I did not need emergency surgery as I haven't lost control of my bladder/bowel. I have been referred to Neurologist at the New Glasgow Super Hospital. I was told I will need surgery. Not sure how long I will wait for an appointment. Iam releieved in one hand that I have answer re sciatica pain as physio and pain killers not helping but on other hand scared re prospect of surgery. Looking for advice re what it will entail and recovery period. I don't know how much longer I can put up with the pain. I've been off work 3 months and want to get back. I am a social worker and spend a lot of time typing lenghty reports, attending meetings, driving and visits so not sure how feasible getting back is.
Jackie
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 Helen
Your ordeal sounds horrendous. I have been fortunate enough to get MRI done which shows prolapsed disc but according to the Secretary for them Neurosurgeon that despite the Orthopedic Surgeon stating he felt I should be seen urgent I am not seen by the doctor who reviewed my MRI scan as being a priority. A further letter has been sent today by the orthopedic surgeon who has been great. So fingers crossed. the neurosurgeon's secretary was very sympathetic (prob because I was in tears when speaking to get). She said if any cancelations are made she will telephone me. I said I don't care how short notice it is I will take it.
It is so frustrating we are just a number. I was told by the doctor I saw via nub work medical that 90% of GPs now have private health insurance due to their distrust in receiving appropriate health care via the NHS. My GP also said its all political and sadly people like us are stuck in the middle whilst consultants argue who is responsible for patients and play God re how quick we are seen. Anyway rant over. Guess all I can do for now is pop the pills and pray I am seen soon As you can see from the time of my posting I can't sleep. Another night of lying in pain trying to get into a position that will be a bit comfy ( as well as the frustration of listening to my hubby snoring...need to laugh or go insane with the pain). Hope your seem soon and i don't get seen soon I think I will need to consider going down private route well if my bank manager agrees to help lol!
Take care x
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
Hi
I am now getting the odd pins and needles or more like a feeling that a needle is being stuck into my other foot. The pain and pins and needles remain in my left side/foot. I am wondering if this can happen or should I be concerned. It's bad enough having it all down my left side without the added pain to my other foot (the right leg is fine it just the odd occasion I am feeling this sensation on the right foot).
the whole situation is getting me down.
Hi Jackie, i sometimes experience pain in my other foot but not often. I don't know what might be causing that. I have a lot of referred pain in my hip that is due to the discs. The pain I have in my left foot is very sharp, like having glass pushed into your foot. It is intense and unbearable at times. I once nearly poured boiling water from the kettle onto my bare arm as I couldn't take the pain any more. Fortunately my husband is very loving and patient and helps me to cope.
I know how depressing it can get. I am taking all the pain meds I can as well as seeing an osteopath regularly. I go to the hydroth
erapy pool as that is soothing. I read a lot and try to get out as m
uch as I can, all these things help as a distraction but I would like to know what the root cause of the problem is.
Try to be kind to yourself and keep positive, I know this is easier said than done at times. I wrote a detailed complaint to the NHS and copied it to my MP and felt loads better. It's the frustration and needless setbacks that make it hard.
I have a meeting with work tomorrow and am able to be realistic about my limits. Anyway, hope your case is moving on,I'll post when I've seen the consultant next week, wish me luck! !
All the best,
Is there an acute pain group nearby? I'm giving that a go at the end of the month.
Hi Helen
Thanks for above. Sounds similar to pain I feel in my feet. I'm lying in bed as I write this and feel every tendon in my leg is being stretched as if I've been placed on a stretching rack feels like a burning pain and when I stand like knife is being stuck into my thigh. Meds don't touch the pain. Anyway guess I need to be patient and wait my turn on NHS like everyone else. I think I will be looking into Private Health Insurance. I know it wont cover this but I never want myself or family to be in this situation again. Like you I'm lucky to have a very supportive husband.
I had a meeting at work today. They continue to be very supportive. I'm going to do a phased return and then given I do a great deal of Report writing I will work from home three days per week for a period of time. I feel I need to get back to work for my own wellbeing as being stuck in everyday is driving me insane. hope your employer works out a plan to support your return.
I'll keep you posted. What city are you from if you don't mind me asking.
Jackiec
Jackie,
i have had sciatica on and off for 4 years. Recently hit me hard and had an MRI scan as had pain in both legs. I have small bulging disc l5 hitting my s1 nerve ,causing compression with a right side eccentricity (what ever that is)and in l4 minimal feminnal narrowing along with minor dessication. When i read the report my doctor couldnt even explain it. I have pins and needles in my right foot , and ankle bone, and pains in my upper left thigh and foot.
The whole thing is confusing as ive had 10 physio appts, accupunture, and Im now trying some more exercises.
Even I dont know what will happen, Im mobile I try to walk but it gets me down and I feel for anyone with this pain.
Im luckier than most when i read the pain some people are in but when that nerve is hit its awful.
If any one has nay advice I would welcome it as well.
My problem is I also suffer from problem with my platelets and attend hospital every three months to check my blood count.
A year ago I had none of this apart from a little sciatic niggle, went for a 50s health check... not a good move
Hi Heather
when I got my MRI scan three weeks ago I was given little information other than L5 S1 and that I would be referred to a Nuero Surgeon as Given I have had physio for 12.weeks that I need surgery. The physio has discharged me as nothing else he can do. I am numb at top of my thigh (outside) and at the outside of my foot with no ankle reflex. I was admitted to hospital due to numbness around gentile area and back passage, although I was not aware of this until GP and Othopedic surgeon carried out tests with a pin and anal examinations. I have feeling in the inside of my legs and saddle so was not seen as an emergency because I had not lost bowel or bladder control. It is now a waiting game. I have been referred to neuro surgeon but no idea when I willmgetvan appointment despite my referring being classed as urgent by the orthopedic surgeon. Meanwhile I am trying to remain mobile as sitting around makes the pain worse.
have you been referred elsewhere given your diagnosis? Inthinkmyour right to remain as mobile as possible as like Insaid I find sitting about makes my pain worse. If you have not been referred elsewhere I would speak with your GP to ask what your options are.
if surgery is the only option for me I am going for it as I can't out up with this any longer.
Goid is luck and let us know how you get on. Take care x
Hi Jackie,
How are you getting on? I live in the Highlands about two and a half hours from Glasgow. My hospital is Raigmore in Inverness which is a long treck ! I'm finding Pregabalin very good for the nerve pain but I still have little feeling in my foot. We are looking into buying an automatic car as I don't think I'll be able to drive again otherwise .
I'm waiting for my appointment with a spinal surgeon next week and hope that he'll be able to answer some of my questions and have some practical help. All my colleagues return to school next week and I'm so upset and disappointed that I won't be there for my lovelypupils, I miss my old life so much.
I have had to resign myself to thefact that I won't be returning full time until after Christmas. Fortunately my Headteacher has been really good and supportive, arranging a phased return and is understanding of my problems.
As a social worker you might have a similar supportsstructure. I've beenreferred to ooccupational health and they will measure me for an orthopedic chair that should help. This may be an option for you? I really feel for you and share your frustration with the system, I've made a formal complaint and will lety you know how I get on with that.
I received a letter saying they will investigate the waiting time for me to see the consultant as a 'high priority ' case, the way my appointment was cancelled at the last minute and why I was transferred by ambulance instead of helicopter as the surgeons requested. Honestly, I almost haven't got the energy for all this but I'm so angry! !