Similar issue Discs gone from C1 to C7 Loss of lordis boney growths spinal fluid not flowing properly but no stenosis of yet nerves are squashed Pain management concerned If it gets worse loss of movement in arms or numb areas straight to A & E then I'm left with no option but to have surgery
Painful and careful of movements headaches list of unusual symptoms
I've been like this for alongtime seen neurosurgeons spinal surgeon the last thing they want to do is operate & only do so to stop any further progression to paralysis..I'm 56 female so know doubt sooner rather than later the inevitable will happen but I'm not pushing for surgery I'v managed so far....
My discs crumble, currently this is my L5/S1 bilaterally.
I’m having decompression surgery, A diseconomy. This Monday and I have to take two months away from my full time job.
This is my 5th back surgery.
Surgery is not an answer and everyone needs are different. Sometimes it has to take place.
I have had these issues for 12 years now. I have permanent nerve pain in my right leg, pins and needles, hot patches, numbness.
I have also had a fusion but these make the discs above and below week.
I have had a lot of steroid epidural injections to help with pain but they can no longer be performed after my last one a year ago as my nerves are too inflamed now , there is not enough space.
This condition is something you have to learn to live with and I manage to work as I take nerve medication. But still have manageable pain with them. But I prefer to work for my mental health.
It’s a long journey and a painful one. Hope this helps a bit.
I first had L5 S1 Surgery just over twenty years ago , I totally lost L5 and my back dropped so , After Three years of pain MRI / Scans, it was found back then with a disc a gram, I don't think they do that method anymore. The metal work came lose around six year later while nursing my mum, you could see the skin pushed out. I had emergency surgery and they took all the metal work out as the bone craft had held. It was seriously very painful for a year. four years ago I then had surgery again L4 , Nightmare over two years of try to convince them that I had a knife blade sticking in me from the time of surgery, they kept say just Chronic Pain, I got so depressed and was paying for a specialist to help me with mental health , The kind pain specialist said , David what will it take for you to believe us, I said a nuclear spec scan , He sent me to London for it and said when it comes back clear, you will have to work with Chronic pain and except it. The Scan came back and showed the pinnacle Screws in the wrong place and into my nerve, They called me in , I had surgery two days later. They took the screws out and used basically a synthetic paste bone graft.
Long and short, after so much surgery, Yes I suffer chronic Pain, so bad that I also have neuropathic, the damage caused my right leg to loose muscle, and not support me.
My body was malfunctioning, I had brain fog arms shaking , legs sometimes dragging and a couple of times just woke up in intensive care due to my body shutting down with the pain.
I still have FND .
They sent me to John Radcliffe , who were brilliant they fitted an Abbot stimulator - paddle implant T4 / T3 target to hot L4 / L5 area, break pain patterns. I have a ten year battery.
It runs day and night, yes I have to regularly switch between the programs with the I phone app. after three weeks my leg started to gain muscle, I could walk again, the idea the stimulate the Neuropathic nerves . It has worked for that and to help pain management.
It is not a cure, it is a tool one of many. Like nearly all of use yes O take daily lots of medication.
Suffer fatigue through pain and no sleep and struggle with mental health, the FND does not help.
I have regular Thai massage to help with mobility , blood flow and push the scar tissue , it costs a fortune, over the year.
I would say to anyone suffering any kind of bad back , First always explore every avenue to avoid the body being entered, How-ever when we do have surgery Yes it does help most of the time but it seems it can more than often lead to Chronic Pain,
I find however much it hurts or disables me, I must push through it to exercise , the correct shown ones that are aimed at my condition, although I hate the pool and don't do much in it, it helps, I have to find warm pools.
The Surgery for me was not painful at the time, it can be essential and help but yes for many of us it leads to real pain. Real pain, very hard in life to get an understanding of the term.
In many cases the doctor cannot give the time and really does not have the understanding of our complex conditions.
I say to you all sorry, have some compassion for both yourself and others that don't get it.
We seem to learn through ourselves and traveling between specialists when we are lucky.
This site is great and many of the posts, podcasts and tutorials will help us.
It is the hardest things I have ever experienced, Nuffield Oxford helped me a lot with a three week optimise course , to help me understand with other pain suffers how real pain is some understanding and try to give us tools to works with.
When you are having, I call it a heightened really bad flare up, volume right up on pain disability , brain melt down - Brain fog, wow it is really hard to think for your self your just in hell. we come through it and live on. It is hard , I don't really know what words to use to express the true level of how I , we feel . especially when all from pain so many other symptom's can arise . Of course we get anxious, worry, who wouldn't, Yes Optimise has helped me to cope better. It really helps to know you are not alone and not mad and yes it is all real.
Pain is increased by so many things, things you would not think, like a volume control.
I hope this helps a few of you know you are not alone, not crazy and yes with help- understanding a little more, we can settle a little better. Tame The Beast on line is good to watch.
Again love to you all, together we will find away through are nightmares, I hope a little of what I have written makes sense, Not great at speeling sorry xx
Sorry to hear about your journey and condition I can sympathise afte 10 years of constant, variable pain (neuropathic and probably accommpanied by nociceptive pain) primarily from lower lumbar regions and right leg/knee. I too have had all kinds of medication, injections and surgical procedures but, unfortunately nothing has really helped with substantial reduction in the long term chronic and sometimes acute pain. I cope with thinking much more about what I do and how I do it, etc. Glad to hear that you have a spinal chord stimulator which helps. After about 5 years of waiting for one from Pain management the procedure was stopped early on because they said my nerves were too damaged. Being an electrical engineer I asked the surgeons why a device which induces electrical signals into nerves cannot work when the nerves still transmit pain which also are electrical signals and they could not answer that. There are quite a lot ot theories or paradigms concerning pain and neural systems but, form my extensive research (leave no stone unturned in my search for knowledge and answers), there is still an awful lot which is not really understood by clinicians and pharma companies . You mentioned brain fog. I call it "pain fog" because I find that there is a positive feedback between the two. If pain increases it causes increased anxiety, agitaion, annoyance, impatience, intolerance, etc with decrease in cognitive capabilities, As the mental issues increase they in turn increase the pain and so on. I have recently tried medications like Duloxetine and Pregabalin to try to address both of these issues but the really bad side effects of these medications were not worth it for minimal improvement in my "pain fog"
Thank , I am sorry you suffer, your account of your pain and suffering is very similar to mine. Yes you are correct , now I am much calmer over my predicament and both recognise it is really not good , most importantly I can Stop, recognise the situation , breathe, engage sensory system , it really helps , I can then make some useful moves to helping myself , it is to easy to have a meltdown and everything will go haywire , pain will increase as anxiety is let in and mishandled . It has taken me years and help to have this control , I admit I still make mistakes in a bad flare up.
You are so right brain fog -pain fog the same the pain creates a fog you struggle to think , questioning am I going to help myself here , what tool am I going to pull on , just stop breathe and recognise / medication I skip between dissolvable x 2 Panadol extra, make sure stir well and get the gas out of them, so I often put in a bottle shake a bit the drink.
The next bit they say I should not really do , take one gabapitin maybe two and a diclofenic
Bit of food first. I then use one of the best pain relievers a Ralvo 700mg medicated plaster Lidocaine 14cmx 10cm placed over L3/4/5S1 and lower, once on an hour you can feel the pain lower especially as by then you have moved to a more comfortable and warm location, I keep the plaster on all night and take off in the morning , really helps me. Find out if you can use?. They are expensive so they can try to put you off.
Reference your nerves, I don’t know , try to get to Oxford John Radcliffe Hospital they are brilliant. I know it can be problematic for diabetes patients.
My nervous system / Neuropathic was damaged and not working properly due to lower lumber failed surgery's, Nerves were dying hence they expressed my surgery.
I had the Paddle implant for tho reasons I move around a lot and it gives better performance. Apparently when you have lower lumber pain, it is often better results of success in giving help the way they can fit it to target the area. I would double check and push for proper understanding of the reason you can not be put forward for a candidate.
The paddle implant has about sixty electrodes and passes electrical micro doses at different patterns to interfere with the signals being sent to the brain. We went through a lot of work to get the right settings for me of which still I control, I can turn the intensity up and down and change programs, I can have on silent 24/7 and be able to drive and operate machines. The Feel is great for when you are in pain level 8/10 .
I hope you can explore and push them for a good understanding why you are not suitable. Take a good look at the Abbot burst paddle stimulator on line , they have a site it explains about the micro doses etc.
I think it helps , although sad we can see traits between us that shows we are not mad and the pain is really there. I feel strongly that we can have both chronic pain and acute which does not help. For me Pain is the catalyst to all the evil of Fatigue, depression mixed up, forms of anxiety- pain and brain fog . Pain when the volume level increases my FND spiral in all sorts of ways and when sometimes you master a trait of FND one of the just hundreds it moves .
I often try to explain to family, yes I live in pain all the time pain level 2/4 is fine makes me tied but manageable until it starts heading 6-8 and higher, then now I except game over pack up , and go into compassion mode and selfishly concentrate on tying to help yourself. We don’t have a choice otherwise we are going to have a melt down .
I admit I hate tablets , I have tried so many including the names you mentioned.
We have to decide if the side effects are worthwhile. My pain management team give me tips to help. One big problem often they put you on to much at the start and don’t guide sometimes of the importance of the right foot and water at the right time you take it.
I am learning how to live this new life , I am not the same person that I was before pain came into my life . It put me in a tumble dyer every day cold / warm , not knowing ever how good might today be . It is a massive amount of work to in-brace failed surgery / other injuries/ illnesses, Trauma/ depression. Wow you are allowed to be depressed, Fed up , Sad , you haven’t slept and your in agony with many other traits going on in the mix.
I use iPad music for chronic pain sleep , I have Bose noise cancelling head phones they are brilliant, I can lay in bed and sleep with them . I explore music a lot and find I can often get a beat or frequency that helps the pain when I focus and this can sometimes lead to meditating.
Getting out fresh air is good for us but challenging.
Listen to favourite Radio and TV watch funny things , .
I have found sugar bad for my new condition and the nerve pain, so I don’t drink sugar anymore.
Any tips I get I am happy to share. It is all worth trying.
Have a good evening,
Hope your pain and suffering is being kind to you.
I am a bit surprised that you still need so much medication after having a successful Abbot stimulator. I see it is approved by FDA in USA but I cannot see approval and use in NHS. Did you get the implant in the NHS? As I said earlier I had a procedure to fot an scs implant in early 2023 but it was unsuccessful.
Yes it is my own fault as I am learning recently and at the moment, I do not pace myself
I run a small business and look after a couple of staff that have worked for me Eight and fourteen years they love there job and we all went through a lot with Covid and Brit-exit, so I keep pushing through, I could not except what is has happened to my body and really thought I could beat it, even cheating with lots of Medication, Thinking I could beat the pain signals and Brain. Until I did not realise until to late I was depressed, suicidal, well worse than that I was on life support and when my wife and children were there so upset, my lovely daughter asking me how will she get married if I am not there, it hit me with the Mental health teams brilliant help the understanding when I had an FND attack back in covid with a Black out and then could not move my body for day could still not walk on day eight with bodies dead wheeling past me as I was next to intensive care, Hell it was . I was seen by loads of so called specialist's, but No it was all in my head my fault I could not walk, lift a legs, I was crazy, after ten days not seeing anyone, meaning not allowed to see family, I manged to convince them to discharge me , I was wheel out into the car, Slowly things started to flicker , we bought crutches, I eventually could get about. Then another Oh I have woken up in hospital again, possible seizure, I did not know, and a different Hospital , now Frimley Park. An Army doctor was on call and said to my daughter, I think your Dad might have FND can I do tests on him, Yes, after some time yes I apparently has something called FND now more tests moved to Oxford, Yes I live now with FND , Fibromyalgia, had to stop driving for Three months, condition now keep taking Gabapentin and you can drive, although, wow the electric shocks I get are amazing, I have kicked tables away both via knee, people still jump in the room as I can still get them but not so bad with the Gabapentin. Yes I do have Osteoarthritis in the lower back, I can feel it crunching and scratching but I don't think at the moment that is my main problem.
The scaring Tissue in my back is apparently and yes it is causing issues there is to much but they are worried to remove some would cause more, so with the failed surgery and me thinking I could beat it all , as I could not except it, I am learning and have woken up or more I had a moment recently that I was not me anymore and I never will be. I am a new me a person that has to learn to pace, do less in order to do more and except, embrace , the new me.
No I don't have a clue at the moment where this all ends but I know by learning using the correct medication while I change a bit more of my life it will be ok. I am sure if I stopped my business and called it a day and did a lot less the pain and symptom's would be less the medication would be to, I need to find the balance. The good news is I am back on the planet. I admit I chuck quite a lot of medication down me and turn up the stimulator, I should not. I use calming music, music for sleep pain, its brilliant , put the ear phones on an imagine I am there it works, I fall sleep eventually.
I am going to finish here but hope this makes a little sense to my pain journey, I am very great-full for your comments and everyone's so far Thank you.
I did not answer your question , yes I did get it under the NHS , It was apparently a major concern my right leg was wasting rapidly, the team really hoped it would help the neuropathic system and my leg would stabilise. It worked quite quickly my leg rebuild strength.
I am sorry your scs implant could not go ahead.
It made me think what you said , I am going to try and reduce a little medication although I know this will not work through regular flare ups .
I guess it is a choice I make to carry on working , I enjoy it.
Thank you, I hope for some telling a little of my story helps in any way it can.
I like you keep listening to Pod casts and searching for more knowledge to help me hopefully having more tools to work with and understand how incredible the brain is when it comes to Pain. I believe for me there is both Chronic and Acute Pain.
Yes to everyone , when we can trying to keep busy achieving gools does help us feel better.
The body in every area is affected by the spinal cord, the gut , tummy which can cause a whole massive amount of discomfort and horrible disabling pain. For so many years I was told it does not . Everyone on these amazing and this site really help me understand and learn how complex the body is , I am so inspired by all on these sites so Thank you, I hope I can give a small bit back. Love to you all xxx
Hi , firstly the neuro surgeon will go of your MRI scan and then will ask you what symptoms you have and of is experience he will tell you what he thinks is the best for you. my symptoms were severe and had no choice but to have c3c4c5 fused as i developed Cervical Myelopathy and the operation is to stable your symptoms and hopefully not get worse...
Some conditions Certain Consultants are aware what works for one won't work in another ..was to have hip replaced prior to covid all operations cancelled Was aware lumbar displacement at L4 L5 In 2014 now 2023 discovered all Lumbar dics gone with stenosis Along with the neck I'm knackered. Just this week Pain Management concerned more so with neck than back & have discussed hip operation may be more beneficial help take pressure of neck ..have bowel bladder issues self catheterization & bowel slowing down . Injections don't work 3 had 2 hip 1 hand ..Medication tried & sent me round the bend I'm on opoids that give me back some fluidity Can move about It's been a godsend for myself .. I've been given 12mths to decide on hip operation I've tilted pelvis leg length discrepancy is very noticeable Orthodontics have given inrise for shoes but pain after an hr or so is of the scale so only use to shop & home ..have usual symptoms of numbness pins & needles cramps heaviness anxiety that pops up out of the blue Along with depression that I try & keep a lid on but hey there's always someone else worse off. I try to be positive n helps having a sense of humour at times otherwise I'd cry ...
Sorry you sound like your going through hell and back , it is so hard, I really hope you find more help and guidance on being in chronic pain crisis,
Yes you are so right , we are all so different and yes the body and brain the complexity in us an individual, brain the way it works , for some of us what works for one does not the other. I see you are working on a positive mind , sense of humour we really need it.
You give inspiration, Thanks , just sorry sorry you suffer I get it , love David
No need to be sorry I've like yourself just got on with it Pain know matter how we try to deal with it is Pain either in the neck backside legs etc ... yes I've been down but also kick myself out of it these days plus understanding that it's part of who I am now Helps. lost a former life that also opened me up to other ways of living ..gardening a chore I wasn't keen on prior however I've had to adapt to the changes of my wayward body & not so hard on myself has I once was ...thanks for reply 😉
I feel for you as like me you just have to get on with things best you can , i had to stop taking medication for my pain for Myelopathy as i developed ulcerative colitis and diverticulitis so i have to be very careful what i take and also what i eat , it's never-ending..
I can only relate a similar issue I’ve faced. I have “old man’s” regular degenerative osteoarthritis but with early onset…noticed at age 35ish and had several 9-10 surgeries on knees and hips to try and avoid TKA or THA…my best friend was my orthopedist which I don’t recommend…to his credit he did refer me to another trusted osteopod to evaluate and do the surgeries…I had bilateral ankle fusions at age 43/44 followed by bilateral TKA and bilateral THA before age 49…I have and like you need C5-T3 and L1-L5 done…orthopods like to operate, it’s their specialty but I have made the decision to put the spinal operation off for as long as I can stand the pain…there is no downside and with CKD stage 4 as well the nearly 25 osteoarthritis related surgeries I’ve had to date along with the normal aging process have worsened kidney function….id like to be pain free and the total joints accomplish this but at 59 I hope to avoid the back surgeries all together…finally I’ve realized that it’s just part of who I am and what I must face to live a happy life…I sleep 2/3 hours only nightly and must use a wheelchair 95% of the time now…but I have two awesome kids (27&22) who are the light of my life, my wife and I are still in love and I refuse to let the pain win…just the process in which one person (me) made the decision to forgo the spinal surgery…my best to you!
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