Spinal problems...is there anyone out there who can help!!!

Hi all, new to this forum but looking for help and advice with managing pain, I have had back problems since 2010 ish... and so far I have had L5/S1 disc prolapse which required emergency discectomy as my spinal cord was crushed twice in two months. L4 and L5 went black and had to removed and S1/L5/L4 fusion. I learnt this year I have more discs in my Cervical protruding and require fusion on C6/7. I still suffer with a lot of lumber pain, joint pain and muscle spasms and wonder whether its worth going through this surgery again??? I am lots of medication for the pain and have to look after three small children and I am 38 and I now have severe depression and with that and the pain and just life in general, I recently hit rock bottom and took an overdose (please do not judge) to no avail other than a trip to A&E, where the lovely head physch doctor advised me to try and get onto a forum like this and try and find others similar and how they cope......forever hopeful that I can resume some kind of happy lifestyle instead of waking up each day dreading the day!!!!:(

18 Replies

  • Hi there , I can tell you from my own problems I have had surgery not to keep having it the more surgery you have the weaker your spine get, when I had my surgery I had a discetomy to remove L4/L5 s1/s2 they did that then they where meant to fuse me but they never did they said my spine was to weak , when I woke up, I had no PCA pump , so I was screaming in pain, they had not gave me a catherater so I wet myself . After that they left me in a wet bed still with no pain relief, my husband found me in a hell of a state, I didn't know who he was, cuz the pain had taken in so much, I couldn't think properly. Then the day after my surgery, a nurse came in to change my dressing and as she was changing it another nurse came in and told her to stop being so gentle we haven't got time for that, ripe it off my back, in doing that she pulled ten of my stitches out, I was cry and scream my head of, I am cry thinking of it, it was so painful, then cuz I was crying she hitting me in my back and told me to stop being such a baby , it's not that bad. My surgeon came in , he was in shock the state I was in, I was meant to be only be In the hospital for two to three day, I was in for three week cuz of that nurse, cuz I undid the surgery, and ended up in a wheelchair, I couldn't feel my legs properly I would get intermittent feeling in my legs, so I now have to use my wheelchair full time. That was in 2013, since then I have gone through so many differant type of pain killers, I have been told I have tried them all, there is nothing else I can try .

  • OMG freelie that's awful. My heart goes out to you just reading what you've been through I hope something was done about it. I know it won't make any difference to you and the disgusting treatment you received but someone should be answerable to what happened to you X X sending loads of love

  • Just read your posting Freelie,

    I am lost for words and thought I must post. There are often stories like this but yours is heartbreaking. Although I have not tried it the Tens machine cordless may bring some relief with regard to some of your pain symptoms.

    Loads of hugs


  • Hi Freelie Oh my goodness that is brutal. I to have lumbar spine issues but have not gone through anything near what you had to endure. I have a ten's machine and I found it to work really well for my pain.

    Take care Janice

  • OMG that is awful and yes I fully understand your pain having come round from six hours of surgery when they did the fusion and the pain is unbearable... i was screaming the place and down and I was on a pca and it took just as long to get me in a comfortable state as it did the surgery so that has scared me enough for any future surgery, I was sent out of hospital way to soon and have not reovered well at all......its a dark road and my thoughts are really with you and this was my fear of using this type of forum that I would learn there are lots of people in the same position but still with very little care and help x

  • Hi carlaipg

    I have a similar history to you so hopefully my story may give you some hope, although I don't know if it will give you any practical advice.

    I first had a foot drop a few years ago which recovered and wasn't investigated. Then I had a slipped disc, which caused temporary sciatica and lower back pain. This time I had a nerve root ganglion block epidural and everything seemed OK.

    Then a year later, 3 months after I'd had a total knee replacement, I had another disc go. This time I foolishly left it thinking that it would improve over time. Three months later I woke up one day and couldn't walk. This was July 2015.

    I ended up having an emergency laminectomy on L4/5 and made a remarkable recovery. Then it happened again.

    This time I had another laminectomy on C5/6, which I was told was purely to prevent it from getting any worse. I was in a lot of constant pain (back, buttocks and sciatic down both legs), couldn't walk and lost so much muscle from my lower torso I looked about 40 years older than I am. I couldn't stand up to shower for 12 weeks around this time. This was in Nov 2015.

    I had another root block injection in December which reduced the pain a little and enabled me to become a little more mobile. A few weeks later I switched from elbow crutches to sticks.

    I had another three injections in total up until April 2016, each one reduced the pain a bit more. Also in April I decided that I needed to regain some of the lost muscle in my legs if I was to have any chance of walking again, so after discussing with my surgeon (who said, it's going to be painful but do it), I started seeing a Personal Trainer who specialises in recovery from back injury.

    At this point I have had at least 6 discs go, have a diagnosis of Degenerative Disc Disease, spinal stenosis and degenerative scoliosis.

    I'm not going to lie, it has been incredibly difficult, I have on many occasions lay there at night after going to the gym in too much pain to sleep and wondered if it was worth it. I do a mixture of a 10+ minute warm up on a cross-trainer, followed by exercises designed to isolate and strengthen individual muscle groups, i.e. weights, machines, Swiss ball, resistance bands etc.

    After 4 - 5 months of this I am now really starting to feel the benefit. My PT has taught me to recognise the difference between muscle, back and neuropathic pain - and to be honest without her help I think I would have just thought it was all 'back pain' and sciatica.

    I have learnt that a lot of my pain in the glutes / legs can be relieved with trigger point release (myofascial release) which is using (in my case) a foam roller or a tennis ball to pin point the exact place in the muscle where the pain is originating and basically pressing into it for about a minute. It really hurts to do, but the difference it has made for me is incredible.

    I am slowly regaining the ability to walk, I still use sticks but that is mainly because I struggle to control my gait - I tend to sway from side to side when I walk. This is improving all of the time. The main things for me are that I am not in anywhere near as much pain as I was and I still have hope. The hope that I can one day walk reasonably well without aids is what drives me on.

    I have also been on a bit of a health- kick at the same time as I have Rheumatoid Arthritis (which is not nice - I'm not sure which pain I hate the most, RA or back pain) and have been on medication for this for 17 years. Some of this medication is becoming better understood to cause many problems over the long-term, so I have been trying my hardest to get off as much as possible. Along with the buckets of painkillers and anti-depressants I was also on. The constant fatigue and low-mood caused by chronic pain and RA is almost as debilitating as the pain I find.

    To this end I have changed my diet quite considerably, cutting out gluten, dairy, nightshade family fruit / veg (potatoes, tomatoes etc), all processed food, sugar, most meat and a few other things. I have been supplementing with all of the things that having a chronic illness can make you struggle to absorb, so Vit b12, Vit D, potassium, zinc, magnesium and adding in supplements that potentially help with nerve / muscle regeneration / maintenance like glutamine, quercetin, BCAAs, omega 3, CoQ10 etc.

    I have now managed to reduce or stop completely all of the medication I was on apart from Humira (for the RA) which includes NSAIDs, PPIs, antidepressants, Pregabalin etc. I am still reducing morphine but am on <10% of the dose I was on 7 months ago. I feel so much better.

    I'm not saying all of these things apply to you, I'm not even certain what has had the most effect, but I do know that it has all really helped me.

    I have also been 'lucky' in a way as I have had the time and money to focus on getting better. I also have two small children and I (am usually) used to be their main carer, but as I couldn't walk this became impossible so we got help.

    I hope that in a few months / another year I can resume being the carer for my children, because they are the reason for my life.

    Like I said, I don't know if any of this will help you, but I just wanted you to know that not all back surgery ends in disaster, and that there is always hope. Don't give up, read up, become proactive and take charge of your own health. Doctors are specialists in their own areas and not very good at looking at the whole picture IME. Nobody thought to tell me that working on my own muscle loss might help, I decided I didn't want to carry on as I was and acted. I'm so glad I did. But I'm also grateful that I could enlist the help of a specialist, doing the wrong thing could make matters worse.

    Sorry it's such a long post, but I hope some of it is useful.


  • Ade,

    Just want to say your posting is more than inspiring.

    It will give many people loads of hope.


  • Ade,

    I have different pain problems to you but your story has really inspired me,

    Yes we do need to take control of our lives.

    How right you are.

    The doctors do not look at the greater picture.

    Could you PM your PT trainer and health centre.

    Sounds like you have hit on a good PT.

    Since 2004

    Low back pain on waking L5/S1 region.

    The pain came on out of the blue and I had back and pelvic scanning.

    Pelvic tumours were found with sacral involvement.

    They were unable to biopsy as they were so near the sciatic nerve.

    And have always been told these lumps can turn no certainties.

    I had monitoring not surgery my decision and luckily these lumps have shown stability. The surgery would have left me with neurological deficit.

    The scanning is such that you can get an approximate idea of growth of lesions etc but when the nerves are involved too there is a gray area.

    2010 I began with a pushing sensation in my bowel/anal region lying on my back at night time (in conjuction with this continuing low back pain) Change of bowel habits to urgency.

    Went from colorectal to gynaecologist.

    Was sure I had anal cancer from my lumps.

    Had laparoscopy normal.

    Even bone marrow biopsy which was normal.

    Prolapse shown but looked at though it was within limits.

    Colorectal surgeon thought this may be nerve pain from my tumours.

    Saw other surgeons privately and prolapse surgery advised but no guarantees.

    This is where I am.

    Ventral rectopexy surgery will probably help my anal discomfort.

    However I am sure it will not help my low back pain.

    The surgery is not without risk.

    It is done by very few clinicians.

    Many ladies have had mesh erosion after and the surgery can worsen constipation due to the scar tissue building up and blocking with the mesh. It is a supportive surgery which lifts the rectum and supports the pelvic wall to the sacrum (promontory area). Unfortunately you only find the negatives on the net but I have seen many specialists and there is no long term outcome analysis. The doctors are using different meshes, some biological some non biological.

    The surgery is getting better but it is not quite there yet!

    I am making enquiries with an academic professor to see if my lumps can be biopsied, just sent her an email and hope to hear back.

    I believe though that even if needle biopsied that would not give a true indication. Unless I opted for removal of lumps and I dont know what state I would be in afterwards. That would not be advised as stability has shown. So I probabaly need to leave these lumps 'to rest'

    So I guess I have an inoperable condition.

    I am left with chronic morning back and deep anal pain on waking.

    Chronic anal pain when sitting every day. As though there is a foreign object in my anal canal.

    This has all led to a change of bowel habits, to faecal urgency, and incomplete evacuation and I shan't go into the nitty-gritty.

    I am greatly relieved when not lying on my back, and walking.

    If only I could sleep standing up.

    I hear your story and it really gives me true inspiration.

    A big thank you for posting.

    Yes we do need to take control of our lives.


  • Hi Sandra

    Thank you for your kind words.

    I'm sorry to hear that you are having so many problems, and wouldn't know where to start if I was you, it's just that I know for a fact that I could still be lying down all day feeling sorry for myself if I hadn't 'got a grip' and done something about it.

    It bugs me no end that nobody told me explicitly to do any of it, and the path of least resistance would have been to keep plowing the painkillers down (as they became increasingly ineffective) and move as little as possible 'to minimise the pain', but that would have been the worst thing I could do in the long term. I'm hoping to be around for a few years yet (still in my 40s) and the prospect of not being able to walk again and being in constant pain fills me with dread. All I'm trying to do is help myself (and therefore my family).

    It's been a painful, exhausting few months no doubt, but I am really starting to get somewhere now. I can stand up (mainly) without constantly losing my balance, I don't (currently) have constant pain in my lower back, in fact the worst pain from my back is now in the glut muscles where I get really painful, knotted areas that stop me in my tracks and make walking difficult. I still don't know why, if it's because I am trying to strengthen them and that causes the pain, whether it's directly connected to the spinal issues - I just don't know and have never had a straight answer from anyone that 'should' know. But I have learned that these pains are transient, and I can do something about it. I am hopeful that when I have regained historic levels of muscle mass it won't be such an issue as I won't have to use them as much to do simple things like standing and walking.

    The sciatica and facet joint pains are currently manageable and all I can hope is that by strengthening my core muscles I can minimise the risk of this changing. Who knows?

    Good luck in your 'quest'!

    Also I'm in Birmingham, not sure if that's any good to you, but if you want any details of anyone I have seen feel free to PM and I will let you know.

    Kind regards


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  • Thank you for replying and it is both reassuring and helpful to hear your story and I just hope that when other parts of my life have settled then I can concentrate on myself a bit more....my children are at home 24/7 as I took them out of school in March due to safeguarding issues and now I am struggling to get them back into school as most schools around us are full....DVLA also revoked my licence in May due to nuerological problems which has just intensified my problems as I will not leave the house on my own for fear of falling or spasms.....

  • Hi carlaipg

    Yes you do have a lot on your plate. I don't know how you manage 3 kids 24/7 on your own, particularly with no car.

    I realise I am 'lucky' compared to some, in that I have had the opportunity to focus on me for the last year (and get help doing it), and I still find it extremely difficult coping with my 2 little ones on my own, and that's rarely 24/7.

    Have you tried getting in touch with Social Services? My mum has Parkinson's and found them surprisingly useful and also easy to contact and get a response from. I don't know what help they could offer, but it may be something to investigate. They can come and do an OT assessment at your house for example, they may be able to offer some kind of help, idk.

    I suppose I just want to try to offer some hope, however distant it may seem. Being assertive with the medical profession is something I have learned after 17 years with RA, but at first I didn't have a clue how to get things done. I think this has helped me no end with my back problems.

    Kind regards


  • Hi Ade

    Sorry for the delay in my reply but I have so much going on I rarely have time to sit and have five mins to myself. I have however just out my three children back into full time school and will be moving house soon.... this will also impact on my mental health in a positive way.....I am having my medications changed again to help...I am being referred back to Pain Management so hopefully I too can start to live with this illness and I too would love to get back to the gym....the unfortunate thing with back problems and being in pain is you exercise less but eat more crap because of depression and anxiety. A nasty cycle which I intend to break once we are moved and settled again. I think I get help just from knowing there are others out there who can listen and understand and if you can get help from that its a bonus. It just seems DDD is yet another silent disease that people are very unaware of and therefore make judgement as it cant be seen. Looking to get a small scooter just so I can enjoy going out with the family as not able to walk far without pain. This however is a fete in itself mentally as I dont undersand why I need a scooter at my age but right now I will do anything to make life just a little easier.

    Your story is very inspiring and what I take from it is it takes time, understanding your own limits and adapting your life to suit.

    Many thanks for sharing


  • Carla,

    Your very young and trying to look after 3 small children is not easy. You most certainly hit rock bottom but you must have the strength and determination to get through this.

    The Tens machine may help you too.

    And you sound as though you need to have some supportive physchology sessions with a caring understanding professional.

    All the best


  • It's little things I found that help. One I found was I was struggling in the morning to put my socks on. So I found a shop that as disability aids and found a device to help me put my socks on cutting out me aggravating my back from the start, also try instead of bending to take my socks off I drag my foot backwards across the carpet then use the heel of my other foot to stand on the exposed sock and pull my foot backwards to take the sock off. Simple ideas but helped me and no doubt there will of people with other ideas. Yes I suffer from depression a lot and feel sorry for you.

  • Hi. I do hope you get the help here that I did. Just finding others who have an understanding of what chronic pain means to those who struggle with it can be a great comfort. Ive %also had a great deal of practical help.

    I suspect that we all have reached that rock bottom stage and dragged ourselves back out.

    It's all incredibly hard I know. But there are things that can help.

    Have you been referred to a Pain Clinic for instance ?

    Best wishes


  • Yes being referred back to Pain Management which I am hoping will help. I am also having my medication reviewed and being put on amitryltaline probably spelt that wrong but I dont really want to be on drugs for the rest of my life ....

  • Hi carlaigp. We all have that hope to be able to toss away the medication or at least reduce it to the extent it does not impact so much.

    Having had surgery two weeks ago I am now on more medication than before and my mental function g is impaired. I am due to start an OU undergraduate course next month. Can't see it happening unless I reduce the opiates. I couldn't do some simple calculations the other day. Left me freaked out.

    Meditation does help in training the mind to focus on one thing and also to calm the clamour of random thoughts. Lots of free apps out there of guided meditations. Do try. Please.


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