I underwent surgery in May 2015 for Right L5S1 foraminotomy. I was discharged with dexamethasone for a few days to try and reduce the numbness I had in my right foot and toes, The numbness did not disappear, it got worse and spread.
I returned to hospital 2 months later due to new onset reduced sensation of lateral aspect of right leg, foot including sole of lateral 4 toes. Recurrent back pain, occasional right foot slaps to the floor when tired. Mild reduction in light touch sensation over L5S1 right side.
I was given a MRI scan which showed no evidence of ongoing nerve root compression. I was then discharged.
Outcome … I was left for two and a half years with a pinched sciatic nerve as my GP continually said it was sciatica for 2 years .Due to the length of time I suffered the pinched nerve the long term damage was done. The surgeon told me that the nerve was badly swollen and very tight and took a bettering in surgery due to the length of time I had it,
I am now 5 years down the line been on the following medication which none of them work , they either space me out, give me insomnia or they just don't work.
I've been to Osteopaths, chiropractors. physiotherapists, pain management clinic, phycologists, neurologists and none of them can help reduce the pain.
I suffer from lower back pain which travels down my buttocks, hips, burning pain in my leg, and the numbness is still in my lower leg and foot. I am unable to stand for any period of time and also when I walk any distance I suffer all of the above symptoms. I am in pain when I go from sit to stand and I can now feel is spreading to my knees. I have been diagnosed with chronic bilateral leg pain with neuropathic symptoms on a background of chronic backpain. I also suffer from Radiculopathy in the right leg which neurologists have advise there is no further surgery intervention possible.
On occasions I suffer from Bursitis and my sacroiliac joints flare up which is all connected to my back pain.
I am a very vain 53 years old . I am using a walking stick which I don't like using. I feel no one is listening to me as all I am told is "there is nothing we can do for you. medication doesn't work and the ones that do work give you terrible side effects" I am at my wits end with this and I am so tired with managing pain.
Does anyone have any advise if there are any alternate medication or therapies available?
Thank you
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misstopaz
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Really sorry to hear all your going through. I had a L5 prolapse into sciatic nerve with the pain and mobility issues that come with it, also had numbness in top of left foot and my foot used to droop a little to a point where I occasionally tripped over it. At one stage I had a GP shrug his shoulders about it. Went through all the usually with private osteopath/physio, some of the exercises did help, especially ones that focus on the multifidus muscles. Want I found useful as a short term pain relief was acupuncture, would recommend if you haven’t tried it. Also, normal massage therapy (a good one, at least level 4 qualified) will help with some pain relief but also help relax which will have its own positive benefits. All the best!
Wow that just stinks and I feel bad for you. Have you tried physical therapy? Go online to YouTube see if you can locate stretches to see if this helps. I have sciatica pains too this pain hurts so bad and I do the figure 4stretch and it helps a lot although doesn’t take it away but at least provides some relief.
Had 5 surgeries in 3 years and ended up with a fusion earlier this year. I still suffer from nerve pain and this horrible crawly feeling in my leg plus back pain. Find it difficult to stand for any length of time. For me pregabalin helps. But the other one I take which helps in a different way is dihydrocodeine. I do get deep tissue massage which helps. Am starting next week with spinal physio so hopes that helps.
Hi Emma, are you glad you had the fusion? I’ve been offered it back in Jan 2018, I was always reluctant anyway so they tried different injections and now don’t recommend it at all anymore as may not help and could end up worse. It’s L5 S1 but I’ve other areas of DDD as well now. I want to know whether or not to insist, they’ll do another MRI anyway before they do it, choice is with me but I’m so scared to commit as I also realise I could be worse than I am now 😟
I had slow onset CE to start with and had 3 microdiscectomies but the disc kept going, l5s1, so it was deemed best to go for a fusion. I had a laminectomy at the same time higher up. Have to say the nerve pain down the back of my leg is much improved but not gone. Suffer from back ache, quite severe at times, but I suppose that’s still to be expected. The laminectomy was at a higher level (l2l3) and that nerve trajectory, down the front of my leg, is still driving me totally insane. Meds only touch that a bit.
However I do think I am glad so far I have had the fusion but it’s still early days.
I would definitely go for another MRI though as so much could have changed and then discuss it with your surgeon.
Thanks for filling me in Emma, how long ago was it. Was it terribly painful after and how incapacitated were you? Did you take much time off work and driving etc? I’ve been scared by the surgeons if I’m honest
I too thought I’ve had episodes of CE over the years. I recall being numb in the nether regions for a few days when in my 30s and sure it’s what eventually happened in 2012.
I was diagnosed with CE before my first op and kind of was operated on very quickly. Was left with a gammy leg. That leg is still not good and I am still walking with a crutch but I am sure it will get better. Had the fusion less than 2 months ago. I work mostly from home atm but am finding it still very hard. Sitting is not easy and many people have told me it can take quite a bit longer before longer periods of sitting are getting easier. Travelling is still hard and I am not driving yet.
Painwise it’s very hard for the first week especially the first few days. They want you out of bed ASAP and I just could not stand up so they let me lay down again. It got better every day and after 5 days it was ok and they let me go home where I missed the hospital bed haha. It’s just a long road but I had not a lot of choice and am glad I did it.
Thank you so much for filling me in. That will be very useful to me if indeed it’s still on offer and there are no other options.
It’s a big decision, I can see why you really didn’t have a choice whereas I do, it’s not an emergency this time.
I really struggle bending forward for more than a few seconds and repetitively. I can’t for instance sit on the floor and exercise anymore either, getting up off the floor or turning over is a slow painful process. My granddaughters are now 9 and 7 but my other two children haven’t started their families yet and that is where I worry. Looking after babies and all that entails is exactly what causes me an issue, changing nappies, lifting, carrying, putting in and out car or pushchair. I don’t want to be in agony after and during looking after them and I think it’s why I want something done before they tell me they’re expecting. I’ll try and update after the April appt or after the scan xx
It is a long road to get well afterwards so you have to be committed and there has to be a reason on the MRI or otherwise they won’t want to do it.
But I know what you mean about wanting to be well for the grandkids to come. I have 2 grandsons of 5 and 2 and it’s not possible for me to lift the little one. My other kids don’t have either a partner or families yet but I would like to be better by then. Our youngest still lives at home and we used to go shopping and I really want to do that again too. Anyway good luck. You can always pvt message me. Take care xx
Aww, good luck Emma, hope you’ll be out shopping soon with your youngest again.
I feel for you when you say you can’t pick up your your grandchild, I remember feeling useless when my son asked me if I’d be able to have my youngest granddaughter one day a week and take and pick her up from nursery, I had to tell them I couldn’t do it, that it would be too much for me (because of my issues) I somehow felt like a failure and I’d let them down when they needed my help. I don’t want that to happen again 😕 xx
I have been through a lot of pain & tried the same drugs and also morphine patches.
I know for me having my back strapped up is a massive help & allows me to stretch. The more I can stretch the better. I also have Reki treatments every two weeks, meditate every day & attend meditation session every week. It took me a long time to accept no one is going to help me so sad have to take control myself.
I lead a clean lifestyle, sugar & GF free & cook all meals from scratch. Yea I know your thinking what a load of c**p but I was desperate, I couldn’t sit or stand & I wasn’t sleeping. One random thing that helped me the most & cured all my back pain was having both my ovaries removed because they had large cysts on them, if you haven’t already asked to have your checked.
Gosh misstopaz such a similar story to mine. Got increasing pain in March 2012, just after losing my mum. I kept continuing through it till in the end all I could do was lie in bed and not move. Lost a stone in 3 weeks (that’s the good part) I was 51 at the time. Called ambulance twice, took to AnE but sent packing, no MRI or X-ray, had to present to dr even tho was worst pain ever getting to car, sitting in it, getting out and walking. Dr rang hospital and said I was coming, I insisted they keep me in, I couldn’t get out of bed to wee and once admitted I could no longer wee and had to have catheter. Was several days before I was in a fit state to have an MRI tho they could surely have sedated me. I later found out it seems the only surgeon/consultant was on Easter holiday so I had to wait for his return. He’d seen the MRI and I had a severely impinged nerve and disc protrusion which needed surprise surprise emergency surgery. I’d already been in so much pain for weeks, he came to see me Sunday evening and operated next morning, had to cancel his clinic. One dr had even told me I could go home before this!! With a catheter and unable to move from the foetal position I’d been locked in for days. It was L5 S1, so all that sciatic nerve was being touched by the disc. I’d had pins and needles, numbness. After the op I could walk again the next day! I’d lost all muscles in my legs by now but I could walk, nearly fully straighten my leg and begin to put weight in it again. Had hydrotherapy which was good and though I told them I had numb areas and changed sensation nobody took much notice. I was happy for a year, went out one night then had a strange episode where both legs and back went into spasm and I could not relax anything, I kept getting severe, crying out in pain cramp, proper foot drop cramp and it would last an agonising minute or so, that night it happened three times, if I just moved my leg!! 8 years later I still get this wretched cramp together with 24/7 fasiculations where obviously something is still wrong and trapping nerves to cause muscle rippling continuously. In 2018 I was booked in for a fusion and since then they’ve back tracked on this idea, I’ve tried injections, medications, epidural nerve block, last visit actually said they won’t even see me anymore BUT gave me 6 months open appt. so guess what, at 5 months I rang and made appt for April (will probably be cancelled but at least it’s back on) they may not give me a fusion (said my damage is historical now and permanent) however I’ve a recurrence and DDD at L3 and L4 !!
I’m sorry I’ve rambled on, like you I get the most dreadful tendinitis and bursitis in hips, ankle and painful feet and knees which is osteoarthritis. Walking is painful, sitting at work is painful, I naturally pace myself but I feel they must still be able to offer something more even if not the fusion, more injections or another discectomy?? I feel sorry that you’re in this very similar position to me. I’ve done the physio, my left leg is still weak 8 years on and outside of foot aches terribly sometimes. Exercise is very hard on the floor yet upright it’s not too bad. The answer is probably aqua aerobics but getting in and out pool very difficult and I’m blowed if I’ll use the hoist and I’m a young 59 lol - no way.
Look forward to hearing from you, hope you get some good replies
Didn’t offer any real long term pain relief, in fact on every occasion I am better for 24 hours cos the local anaesthetic numbs the pain but then I’m pretty much another couple of days in pain. The last one was the caudal epidural one. Boy did it hit a nerve, I was first down to have it done but couldn’t leave till 5 as I couldn’t move my leg, my brain and body tried but I was sitting in a bed and couldn’t move it outward sliding it on the bed. Until I could I couldn’t go home. It did wear off. I would always say if you’re offered them give them a try, they really seem to work for some people. Best wishes x
hi there sorry your having all of this as like you i am left with pain now for nearly ten years but what i yous is a jell from the pound shop i heard about it from a face book page every one was giving it ten out ten so got some and i would recommend it i plaster it on my legs and my grandson has his in the fridge to make colder its name is FREEZE gel a white tube blue writing on it ive given it to a woman up the street and she loves it on her arthritis joints dont let it put you of as its in the pound shop they also do it in a freeze spray but i only yous that now and again and for any one reading this give it a go but every now and again i try to reduce my tablets as if i was weaning of them bit at a time so my body doesn't get used to them all the time but then start again but any way this is me what works for me might not work for you but good luck with the future but please try and keep active push yourself that little bit it sounds easy todo but if you dont the pain has one my pain lives with me and i don't try and let it win i control my life not the pain i no that we are all different but but i cant let any of them people do back therapy on me as the last time i sat in the car for about 15mints massaging my legs so ive never went back
Wow cannot believe how many (including myself) have gone through the same .. and also suffer the same lasting affects.. I too have been discharged having been told that despite my age there is nothing more can be done except pain management .. to which is very limited (Nhs treatment ) I was offered acupuncture ( this I found of benefit.. not for pain relief but for the relief if the symptoms ( twitches and spasms (cramp) in affected leg ) although for a limited time. I also have not found any painkiller/ medication to reduce the back pain despite more visits to doctors ( I have given up asking now) I’m currently on gabapentin and have just had the dosage increased but this does not change the pain level of the backache.. I too are unable to exercise (not through lack of trying!!) due to pain/ numbness of leg and foot. If only the doctors would have taken it seriously in the first instance a lot of us may have had different outcomes 😔 .. sadly in my case it took a visit to ane to determine the need for immediate surgery and I am now left with permanent sciatic nerve damage... I wish you all the best and hope you find solutions to alleviate / reduce the pain xx
Hi yes just read someone has already said but I also found short term relief from the numbness/twitching /spasms n cramp from acupuncture although no effect to back pain levels. X
Hi - I feel for you. I had Cauda Equina Syndrome but not operated in time. It left me with not too dissimilar symptoms. I had severa MRI before they confirmed I had Adhesive Arachnoiditis and scarring caused by the ruptured disc and now a Tarlov cyst protruding into the spinal cord. The neuropathic pain is unbearable and I get regular flare ups with burning feet, insect like sensation crawling along the legs, arms, back and head, as well as electric shocks through the toes, twitching and legs spasm.
I take paracetamol, codeine, naproxen (I was on etoricoxib but that did not agree with me), amitriptalyne, pregabalin. I found this very useful web page which I would highly recommend and well worth a read - arachnoiditishope.com.
I've just seen this post.I had a discectomy and facetectomy operation October 2009,due to herniated disc and impinged nerves sciatica down both legs into the feet.I was pain free for almost 6 months but the pain returned. I'm currently waiting results of an mri.
Please let us know the result of your MRI and what is happening with your pain.
I also has dissectomy and decompression in Jun 2017 of L4/L5 disc which ruptured causing almost complete effacement of the spinal canal and canal stenosis. I was pain free for 3 days, but then it came back slowly and is now at times unbearable. The surgery was claimed to have been a success, but I was left with two haematoma at the site of the surgery and scarring. I had to request a second opinion and fight all of the time because the consultant was not listening to me. It took 12 months before I finally got the Adhesive Arachnoiditis diagnosis. I have been to 2 centres of excellence for this condition and spinal injuries and have been told, this is a rare condition. I found arachnoiditishope.com and arachnoiditis.co.uk web sites which have changed my outlook on my condition. I now know more about this condition than some of the orthopaedic consultants that I have seen, and I am able to discuss with them a treatment profile as suggested in the web pages.
At this stage, I would like to share with you my experience leading to the surgery so that hopefully it can help you and others.
I was in pain with what the GP described as sciatic nerve pain down the left leg - I had this for 5 months and was in a lot of pain. Saw physios, chiropractor, acupuncturist and even sports physio who specialised in rugby injury. Following the physio's visit, the pain started to radiate down my right leg and my feet felt as if I had a billiard ball stuck underneath them.
Two weeks before the surgery, I was bed ridden and had to crawl to go to the bathroom. At that point my legs and feet were numb, very weak and I kept losing my balance. The GP decided to send me for an MRI which came back with a red flag for urgent orthopaedic assessment. I slipped in the shower which caused further issues and after that I started to have occasional incontinence issues. Matters got worse 3 days later at which point I called for an ambulance - I had emergency surgery for Cauda Equina Syndrome (CES) within 16 hours of admission.
I am sharing this because CES is a serious condition that needs surgery within 24/48 hours of it happening - in my case it did not which resulted in the Adhesive Arachnoiditis I described in the earlier post. The symptoms I have described above are considered as red flags by doctors for CES which require urgent orthopaedic review.
Hi there, I ruptured my L5/S1 disc in 2008 and had a microdiscectomy a few months later. I felt much better afterwards, but 6 weeks later began having severe pain and sciatica in the opposite leg from before, and my other leg developed nerve shortening. Basically, not much help on offer at the time.
Spent a year on various meds, having intensive physio, osteo and massage, which fixed the nerve shortening, at least, and broke up some of the scar tissue that I'd grown.
Since then I've had injections, a rhizotomy, a bunch of meds, tens, multiple physios, and a pain management programme. Some have helped somewhat, but I'm still unable to work and in chronic pain. The worst is the spasms.
I didn't see any opioid in your list of meds? Those have been very helpful for me (tramadol and occasionally oramorph). Pacing, stretching multiple times daily, very light exercise when I can and relaxation seem to help the most.
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