I'm a 28 year old female with bad back problems!
My history is that about 5 years ago I prolapsed a disc. I didn't "do" anything to hurt my back (everyone since has persisted in asking what I did - whether I lifted heavy things, had a fall etc. etc.) At the time I was very fit (horse-riding 4 times a week, going to the gym two or three times and walking to and from work etc). I took me about 6 weeks or so to recover fully and I went back to normal life without changing anything (which I have since been told that I shouldn't have done). I was then fine until about 18 months after that my back "went" again - I was at a new job and by lunchtime I couldn't stand straight as my back was in spasm and I had to go home. This time it took about 4 weeks until the spasm went completely and then about 2 months to recover fully - I lost my job as I couldn't go to it... After that the pain was constant. I had an MRI which showed one bulging disc and another which was also dark in colour on the MRI (I can't remember exactly what it said). The discs in question were at L4 and 5. The doctors said it showed back problems but that I shouldn't be in the amount of pain I was in because of it and that some people had this on their MRI and didn't have any symptoms at all. I found this very galling because I have a high pain threshold and am the last person in the world to want medical treatment (I hate going to hospital and visiting doctors and always downplay the pain etc. I feel as I don't want to seem pushy although lately I have been trying not to do that!). I was referred to a pain clinic and told I was on a waiting list for facet joint injections and just tried to get on with normal life (taking painkillers and anti-inflammatories) which I kind of managed although I was in constant pain with some days being easier than others. I got married 3 years ago and then became (accidentally) pregnant with my son 2 and a half years ago. I was getting on ok and surviving on minimal painkillers (because of breastfeeding although I was still in pain) until my son was about 7 months old when my back went into bad spasm again and I was bent double and unable to walk or do anything really for about 8 months. During this time I had two lots of facet joint injections (they actually made everything a lot worse and did absolutely no good at all) and then a very painful discography (where I was sedated, needles were inserted into the offending two discs then I was woken up again and dye was injected into the discs and the doctor asked me if it hurt I think me screaming the hospital down was his answer!) which showed the lower disc was eroded away to nothing (the one at L5) and the one above at L4 had a huge tear in it. After seeing several surgeons to decide what to do I had a double spinal fusion early last September with a metal cage and screws (no bone graft).
I did feel better immediately although post-op there was some pain it wasn't the nagging, all consuming everyday pain I had been feeling when I was in spasm and once I had been in hospital a week I left able to walk straight which felt amazing. I started pilates and worked really, really hard to build up the strength in my muscles to try and stop anything bad happening in the future.
Then a few months ago the pain came back. It's in the same area as before and also higher up. I'm also getting bad nerve pain radiating down both legs where previously it was only my left (on the right it's not as bad though) and shooting pain down my leg/s when I use the loo or urinate. I still have no reflex in my left foot (I lost that at some point during the second episode of bad back a few years ago) and have reduced sensation on the back and side of my left leg all the way down and my left buttock as well as wasted buttock muscles on the left (only a bit though!). For the last week my back has been in spasm again and I'm not straight anymore. I had an x-ray 3 weeks ago which showed that the metalwork hasn't moved or anything like that and also had an MRI a couple of weeks ago but they haven’t told me what it says yet... I'm taking painkillers (co-codamol 30/500mg, BuTrans 20mg/hr) an anti-inflammatory (diclofenac) and amiltriptyline at night to help me sleep and to alleviate the neural pain (which has been working actually and I wake up less with the pain at night although I feel stiffer and in more pain in the mornings...) but most days the most the painkillers do is slightly take the edge off the pain it never goes away completely. I'm not overweight - having a BMI of 20- so that's not a factor...
I'm being passed around by doctors who say they're not specialised enough to see me and I can't go back to my original surgeon as I can't afford to pay privately for it (the operation cost over ï¿½13,000 and we spent our savings on it...). But I can't carry on like this as I have an 18 month old son and I want to be able to run around with him - I'm not even supposed to be picking him up but I have limited help in the day when my husband's at work although he's great in the evenings and at weekends (my mum who usually helps out lots recently had a hysterectomy so she's not quite up to it at the moment and friends can only do so much).
I'm scared that the disc above where I had the fusion might now be damaged (the ones above only showed normal wear and tear in the MRI before last that I had last August) but don't know how quickly that could happen and no one will tell me whether that's possible. If it is, would I have to have a fusion of them too in order to become straight again? And if that were to happen what if the ones above that started degenerating? What else could it be? I'm also worried that the MRI won't show the extent of the damage (especially since they didn't get perfect images because of the metalwork in my back) as it didn't show how bad my back was last time and I don't want to go through a discography again (for me it was far, far worse than childbirth!) but, saying that, I really want to know what's going on. One of the consultants I have seen (who referred me to another one who I haven't received an appointment from yet and don't know the name of so can't call his secretary and the guy who referred me's on holiday!!) mentioned a CAT or Bone scan but also said neither of these will show damage to discs. As I have no idea what would be the best course of action to take I can't criticise the doctors who are fobbing me off or suggest things that are wrong and I'd just like someone to suggest things so that I could float them past the next specialist I'm unlucky enough to see!! Any suggestions/guesses gratefully accepted...
I'm sorry this has been so long and thank you if you've read through it!
" I didn't "do" anything to hurt my back "
"and then a very painful discography.....showed the lower disc was eroded away to nothing (the one at L5) and the one above at L4 had a huge tear in it."
There has to be something going on for discs to be this damaged at such a young age. It's sad to hear you've been to so many doctors and worked so hard at Pilates without success.
I would suggest taking a step back before having any surgical procedures and really get to the cause of why you're hurting yourself so bad. Could be a muscle imbalance, stress, posture problem, impact from riding, etc..
There are non-surgical procedures like inversion (I don't like decompression machines just my opinion), massage which just core distortion release, cranial sacral release that could help. Pilates ruined what was left of my back BTW and "strength" does not always help. In fact, if you have muscle imbalances, strength can make them even worse.
several quick comments/"food for thought". Unfortunately, many things could be implicated in the return/continuation of your symptoms. It appears that you underwent posterior lumbar fusion with cage placement. Postoperatively, although he reported some initial benefit, symptoms seem to have again progressed. Things to look for include recurrent disc herniation/annular tear, degenerative lumbar instability, piriformis syndrome and "failed back syndrome". Have you undergone any of the following testing postoperatively? Bone scan (to assess fusion integrity), lumbar CT scan with flexion and extension views (also to assess fusion integrity), lumbar myelography (to assess possibility of spinal stenosis and nerve root compression) and lumbar discography (2 evaluate disc integrity). Many interventions could potentially be offered from conservative to surgical. Based upon the results of such testing, he may qualify for intradiscal hypertonic glucose injection, lumbar disc nucleoplasty, intradiscal electrothermal therapy, hardware removal, etc. for your next consultation, I would recommend subspecialty evaluation, not by an orthopedic or neurosurgical surgeon (for obvious reasons), not by a pain management specialist (again, for obvious reasons) but rather by a physiatrist (PM&R) with subspecialty training/interest in lumbar spine mechanics (i.e. kinesiology). Electrodiagnostic assessment (EMG/NCV) would prove beneficial in this situation to help identify the "pain generator". Wish you all the best...
Wow! When I started reading your post, I became a bit emotional. I can relate completely to you. I'm 29,and when I saw my neurosurgeon on my 2nd visit AFTER he compared an MRI from 2006 to another from 2007, he walks in and says "Hi! Have we met? or is there another 28 year old out there with a back as bad as yours?" Now I know there is.. and I am SO sorry.. but at the same time grateful for finding your post. I have degenerative disc disease, spinal stenosis, Spondylolisthesis, and degenerative arthritis. I had the first of 4 "needed" fusion surgeries March 30, 2009 after suffering from chronic back pain and several herniated discs from the degeneration. I had started having back pain when I was 15 and began going to a chiropractor. It was discovered that I had degenerative disc disease when I was 17, but the treatments from the chiropractor and exercise were helping to control the pain. I also have a very high threshold for pain, having broken many bones, and having many other bone surgeries. I once broke my leg, and didn't even find out about it until a year later... it never hurt.. showed up on an xray. I had to have surgery to remove a bone chip the size of a nickel near my ankle... Anyways.. when the neurosurgeon compared my MRIs, he said that my denegeration was progressing at a rate faster than he had ever seen in his practice. Thats pretty depressing to hear. Then he goes on to explain that I have the L4-L5 disc completely black, basically collapsed leaked out all fluid, and must be removed, the vertebrae being fused. He went on to explain that I actually NEED a 3-level fusion but the surgeon didn't want to perform it on me because i'm so young. He said if he can get me by with the one level, possibly 2 level for at least another 5 years he'd prefer that.. because I ALSO have a 17 month old. A beautiful little girl, but unlike you, I'm a single mother, so it gets pretty hard on me sometimes. I've become very depressed with not being able to take care of my daughter proper and having to rely on my family because I physically cannot do much of anything with her anymore. I me lean to the right, and I can't even sit, stand, lay down for anything to get comfortable, I take strong pain medication that barely takes the edge off. I went fora CTscan with and without dye today, and will be going for another MRI next week. The doctor is afraid that I've hearniated the disc below which would mean I need the next level fused now instead of hoping to make it 5 years, OR its possible that I've knocked loose the graft they put in, or other instrumentation. I've started to lose the feeling in my left foot, have began to have charlie horses in my left calf, unable to get any reflexes from the left leg, I'm going downhill fast and its getting to me. If you'd like to email me sometime, I'd like to talk to you, maybe you could help me cope with some things, and maybe I could help you by being a listener who understands completely what you're going through.... I'd appreciate hearing back from you. Hope you're doing better.
At the same time that I'm glad that there's someone else out there who's as young as me having bad back problems I'm also very sorry because it's so hideous!
I didn't quite understand whether you'd had one or two level fusion so far but it sounded like you need a three level fusion and they've only done one so far but are thinking you'll be needing another one now instead of in a few years time? That's really harsh... I didn't have a choice because both of my discs were not viable to wait any more time but I was warned that in 5-10 years time I'll probably need another fusion on the discs above... I can't imagine what it's like to have to think about going through the same sort of operation (and the recovery afterwards) twice more and it makes you think that maybe you'd have been better off if they had done more levels on your first operation (even though there are obviously drawbacks to that as well!). I found it very hard having to stay in hospital for so long away from my son (since at the time he was one and very cross with me for going away suddenly!)and it must be so much worse for you being a single mum... I'm glad that your family can help out, though.
My mum had a disc out when she was 12 and has suffered with back problems since then because they didn't fuse it just took it out (which apparently was the procedure then!)so I'm very lucky that she understands and empathises with my pain but she now needs a hip replacement op so we're both finding it hard to keep up with Theo (my son) since neither of us can run or even walk fast! And he definitely has a turn of speed on him...
I completely know what you mean about feeling depressed about not being able to look after the children properly. I have moments when I also think that I'm a terrible mother because of the fact I can't do anything physical with him (and he's such a physical, sporty boy) or even go and sit down on the floor with him to do a puzzle or something as that hurts so much (especially to get up). But I also see that without the little breaks I get some evenings and at the weekends when my husband takes him out/plays with him while I have a rest it would be so much harder so I really feel for you. I am finding it very difficult to prepare food and things most of the time (with the odd day when I can stand up for more than half an hour and make dinner properly!) so when he becomes faddy about his food at lunch or breakfast when no one's there to help and refuses to eat what I make him and then I can't physically make him anything else I feel like crying... Both he and I have been ill recently with a virus of some sort and that's made everything 100% harder.
I'm also lucky because my best friend is a school teacher and has long holidays so comes and helps out when she can (she's on her honeymoon at the moment though!).
I've now had an MRI which they say doesn't show any reason for my pain -which at the same time as I'm glad that I don't need another fusion straight away also means that none of the neurosurgeons I've been to see recently have basically no interest in diagnosing what it actually wrong since they don't think it's neural. Even though I have very bad neural pain down my legs (mainly my left but since the pain came back after the op also on the right) and like you have almost no feeling in my left foot and no reflex! The left side of my left leg is also starting to go numb (with very reduced sensation) and I get terrible pains down my back and leg when I go to the loo (do you get that as well?).
They also took a few x-rays to see whether the cage in my back has been compromised (which I think is the same as what they think might have happened to your graft).
I'm going to see my private consultant in just over a week to see what he says since all the others are just talking about pain relief and since the strong painkillers (they've upped my dose of the Butrans morphine patches by two times and it still doesn't make any difference!)are (like with you) not even taking the edge off I really want to find a reason for the pain rather than just covering the problem up - especially since the type of pain relief they're talking about (epidurals etc. etc.) is, I think, more for targeting the leg and shooting pain rather than the back pain which is the worst bit by far.
I find it very hard to sit for any time at all, standing or walking is also bad and if I walk for more than a few mins my back starts siezing up. I know I'm very lucky that at the moment I'm straight for most of the time (and I was doubled over in seizure for 8 months before my operation last year) although there are still days (and weeks when something particularly trying has happened or if I'm ill). I'm most comfortable lying on my (left - which is where most of the pain and problems have been so reverse it if you're right is worse I suppose!) side with my right leg bent and put onto a pillow or cushion and my left leg straight (I'm sure you've tried that but just in case you haven't)
Also - are you on anything to help with the neural pain? I have been given what is actually an antidepressant (amiltriptyline) but was prescribed because one of the side effects of it is that it helps with the pain etc. down the legs (although not with the actual back pain unfortunately). It's helped me quite a lot on this front (although I keep having to up the dose because the pain keeps pushing through it I think) and also makes me drowsy so I take it just before bed (before this I hadn't been able to get to sleep because of the pain). I baulked for a little while about taking an antidepressant when it wasn't being prescribed for depression (if you see what I mean!) but at the end of the day I think I'll try anything if it might help!
Do you have the results from your CT scan yet?
I hope that the outcome of the tests will leave something clear for you to do and therefore hopefully mean that you can get some level of pain relief because I know how wearing and long it makes every day to be in constant pain...
I'd be happy to give you my e-mail address so that we can chat more but don't really know how this site works so if there's a way of messaging you privately with it let me know.
Hello Isabel, hope your health has improved by the time you read this. I have had two ops on my spine screws plates and all. I cannot get rid of the pain but I an taking zopiclone to help me sleep when I am desperate. I have now developed osteo arthoritis in the facet joints above and below my fusion. I have to have a hot shower every morning just to get moving. It may well be a good idea to take glucosamine sulphate to slow down the onset of inflamed joints. It is 15 years since my back was fused, I am still exercising and doing just about everything I want at 51 years of age. The pain can be tiresome but if you keep moving and listening to your body you can maintain a decent level of fitness and be active. Good luck, Norm
My story is some what like yours. I am hoping I might get some feedback here and some ideas. I have had back problems for over 10 years. About a year ago I went to a surgeon to see about getting it fixed. He was very hesitant because my bones were weak and I had two fractures in my siliac, both of wich I have no idea how I got them. No falls, no heavy lifting. Anyway I uped my calcium, had a discogram, saw all the differnt doctors he wanted me to see, and had a few shots. After a year he decided it would be ok to do the fusion surgery. It was a two tier L4, L5, and S1 I believe. He added a cage, and some screws and rods. My surgery was in October 2011. I felt so good when I got home it was amazing. I started a exercise class at a gym and a yoga class, even was weaning of pain meds. I started walking my dog three or four times a week, not to far. For the last month my back has been so sore and I am in lots of pain. It's my lower back and to me it looks a little bruised. It has gotten so bad a couple of times I have not been able to get out of my chair without some help and then I was bent over. Today I cant be on my feet for more then 10 minuets at a time. Then I have to sit. I am seeing my surgeon on Thursday and had an xray done last week. Hoping he might be able to tell me whats going on. In the mean time any thoughts or ideas would be very helpful. Thank you so much. Michelle
Hi Michelle1221 and welcome to ehealth: I have found that as we age that your back is the first thing to go...I, too, live in the pain of life...I hope that you can get relief, but if not, take it easier that what you were doing..Get a chair that will lift your body up...Wear a back brace...
I wish there was a magic way to fix us up, but there isn't...One word of caution...Please be careful of the surgeries....If you are not convinced this is the way to go then get a second opinion... Take care...