Nerve Root Damage Unbearable Sciatic Pain — Scope | Disability forum
If we become concerned about you or anyone else while using one of our services, we will act in line with our safeguarding policy and procedures. This may involve sharing this information with relevant authorities to ensure we comply with our policies and legal obligations.

Find out how to let us know if you're concerned about another member's safety.
Please read our updated community house rules and community guidelines.

Nerve Root Damage Unbearable Sciatic Pain

Options
krippled
krippled Community member Posts: 18 Connected
I've not worked for nearly 10 years due a slipped disc (15yrs ago) which caused permanent damage to the nerve root at L5-S1 (removed and vertebrae fused in 2013) still causing my back to lock up constantly, extremely painful sciatica down both legs, affecting my hips and more recently causing numbness in my feet and toes, also the sciatic nerve is being irritated in both knees combined with the fact I have no cartilage in either knee, no fluid inside my knees and just to top it all off I have fluid on my knees the pain is debilitating 

After I misjudged a kerb (over stepping expecting continuation of path) when my foot landed I felt shock waves right up to the top of my spine. Recently I have had to call out paramedics on multiple occasions because I've not been able to gain control of my pain, even though I take enough medication to put an Indian Elephant to sleep.  Anyone in a similar situation will know the most effective treatment is gas and air 

Currently, on top of the pain I'm in all hours of the day, I'm suffering with intense pain my groin, hip. I didn't think the be sciatic pain down my legs could've actually be higher than it was however the dial has been increased from 10 to 20... there needs to be a new pain descriptor developed for me to be able to explain the level of pain I'm in

I've been on the same medication for around 12 years and on the maximum dose of each for around 8yrs. My medication is becoming less and less effective.
During an appointment with pain specialist team, the Dr looked at the list of medication I'm on and explained that she couldn't really help. 

Physically I cannot do any suggested physiotherapy due to the exercises as it causes to much pain plus i simply dont have the strength. My partner who is an ex carer helps alleviate my pain by massaging both my legs and knees

Anyone in similar situation advice would be more than welcome on pain relief which they find helpful 

Tagged:
«1

Comments

  • Sandy_123
    Sandy_123 Scope Member Posts: 50,342 Disability Gamechanger
    Options
    Hi @krippled sorry your in so much pain, nothing worse. I'm guessing your dr has looked at ways to manage the pain by swapping meds and altering times it's taken. Are you under a specialist and had recent mri scans
  • krippled
    krippled Community member Posts: 18 Connected
    Options
    There's nothing really that the Dr's are able to change me over to that would be of use to me as I'm on very strong meds and I'm on  the maximum dose that are recommended. 

    I'm only able to take the doses I do due to being 6' 4" and large stature. What I take would probably floor a 16 hand shire horse 🤣🤣

    Although I do think I've been on these meds for too long now. The Dr's surgery have got contradictory flyers up on the walls stating that opiate pain killers are short term solutions however I've been on them for that long they've started to affect my short-term memory.

    Yes I'm under a neurologist and always demand that I'm referred to him at all times.  He's the only surgeon I trust after taking a cancellation appointment and upon review of his handy work he was more than happy to leave a disc lodged in my nerve root so I demanded a 2nd opinion. As soon as my trusted surgeon saw the mri his was insistent that the disc was coming out.

    I had an mri in Jan, however due to the amount of trips to A&E over two months. The last time I went they got me in for an mri on the same day and noticed quite a few differences between each mri.
     I could have told them where the problems lay without the mri.. its weird how your minds eye can pinpoint exactly where in your spine the issues are.


    My cerebral flluid doesn't flow round my spine properly causing a build up of pressure and I have to force it through the narrowing in my spine which sounds like someone cracking their fingers.


    I've even told my neurologist I'd rather he took out my nerve root all together even if it meant I would be chair bound just to not feel any pain whatsoever... its extremely physically draining and also very mentally draining too.. 

    I'd be quite happy to be kept in a maternity suite, gas and air on tap and I really want to try an epidural 

    I've heard you can have the nerves burnt and it lasts roughly 2yrs before needing repeating.

    I'd give anything to have a week or even just a day where I had no pain at all
     This is my damaged nerve root with disc that's now been removed, you can see the disc above which is on its way that was from 20137
  • Sandy_123
    Sandy_123 Scope Member Posts: 50,342 Disability Gamechanger
    Options
    Gosh, it does sound painful, do you think you will go down the route of having the nerves removed? 
  • SueHeath
    SueHeath Community member Posts: 12,420 Disability Gamechanger
    Options
    Morning @krippled I really do feel for you, I have the same condition, but mine was due to bone movement, I was unable to have the fusion opp and after reading your problems, I'm glad I didn't. I can remember years ago they used to burn the nerves, but my surgeon said he wont do that now. Have you been offered any lateral pain blockers ? I am on the waiting list at the moment for this, they insert a little device under your skin and it works on electrobs to block the pain, I can't wait to try it and i am hopeing I can come of some of these horrable drugs.
  • krippled
    krippled Community member Posts: 18 Connected
    Options
    SueHeath said:
    Morning @krippled I really do feel for you, I have the same condition, but mine was due to bone movement, I was unable to have the fusion opp and after reading your problems, I'm glad I didn't. I can remember years ago they used to burn the nerves, but my surgeon said he wont do that now. Have you been offered any lateral pain blockers ? I am on the waiting list at the moment for this, they insert a little device under your skin and it works on electrobs to block the pain, I can't wait to try it and i am hopeing I can come of some of these horrable drugs.
    It wasn't the surgery that was the problem. It was the amount of time which the disc was lodged in my  nerve root which due to permanent damage caused and the way I've changed posture and how I walk to compensate its caused stress on other part eg hips, upper back plus the pain I still have due to nerve root damage is overwhelming nearly most of the time
  • iza
    iza Scope Member Posts: 703 Pioneering
    Options
    Hi @krippled, I would like to recommend to you go to see osteopath, after a joint and spinal cord manipulation and a tension massage you will feel much better. If you live in London than I am able to share details with you where to go and see osteopath if you are on the benefits as I have list left by my GP doctor before he left our surgery. Also, I found organisation who has discounted visit for people on benefits who need to see osteopath and I been there twice before. I am able to share details with you as well. Please let me know. 
  • krippled
    krippled Community member Posts: 18 Connected
    Options
    Sandy_123 said:
    Gosh, it does sound painful, do you think you will go down the route of having the nerves removed? 
    To be perfectly honest I wouldn't think the surgeon would sign off on that procedure.. a constant supply of gas and air would be great 
  • krippled
    krippled Community member Posts: 18 Connected
    Options
    iza said:
    Hi @krippled, I would like to recommend to you go to see osteopath, after a joint and spinal cord manipulation and a tension massage you will feel much better. If you live in London than I am able to share details with you where to go and see osteopath if you are on the benefits as I have list left by my GP doctor before he left our surgery. Also, I found organisation who has discounted visit for people on benefits who need to see osteopath and I been there twice before. I am able to share details with you as well. Please let me know. 
    Unfortunately due to the severity of my back, degenerative disc disease and having discs which are on the edge literally.
    My doctor informed me that I can't even have a back massage unfortunately as even that could put me in a wheelchair 
  • SueHeath
    SueHeath Community member Posts: 12,420 Disability Gamechanger
    Options
    Yep I do get you @krippled mines the same darling it's caused my spine to curve which in turn affects the posture.
    What always gets me is the Doc's say keep an eye on your weight etc, easier said then done, as you can't move around much or fast to burn of calories, I try and eat smaller portions, but some of the side affects of the drugs cause weight gain, so it's impossible for me anyway ha ha.

    Have you heard about the insert?? 
  • iza
    iza Scope Member Posts: 703 Pioneering
    Options
    @krippled, sorry to hear you can’t use osteopath. Would you consider to try Reiki healer? I tried that once as well as I have problems with trigeminal nerve in the face and I was looking for best solutions everywhere. 
  • Sandy_123
    Sandy_123 Scope Member Posts: 50,342 Disability Gamechanger
    Options
    Yeah I hear you about massages, my family try to pay for massages as treats and I'm constantly telling them, they cannot press on my lower back, so no point, I even tell drs not to press on it lol
  • krippled
    krippled Community member Posts: 18 Connected
    Options
    iza said:
    @krippled, sorry to hear you can’t use osteopath. Would you consider to try Reiki healer? I tried that once as well as I have problems with trigeminal nerve in the face and I was looking for best solutions everywhere. 
    I'm a spiritualist and can do spiritual healings but you can't perform them on yourself however I regularly have the same argument with the spirit of the man who lived in my bungalow before me because he's scared of snakes and doesn't like the one I have....

    A friend does healings for me, I have also had acupuncture a few times. The highest amount of needles in my back was around 45.

    Reiki does get nice and deep tho

    I've an appt with my neurologist tomorrow and need to request that my hips knees are mri'd plus while having mri my neck and checks for Multiple Sclerosis are done also because this could be the only explanation as to why my pain hasn't subdued and is increasing plus I'm showing symptoms of MS like muscle spasms, weakness and stiffness along with trouble with speech (which I put down to medication at first) numbness, tingling general pain and problems with mobility..
    Which I put down to nerve root damage. 

    Therefore definitely needs investigating 
  • iza
    iza Scope Member Posts: 703 Pioneering
    Options
    Hi @krippled, I think you are right. Hope, it will go well with your appointment today. Please ask Dr for full spinal cord MRI scan if you can as that could help probably to analyse how the nerve is affected on it’s all length and perhaps there could be something else pressing on it at different locations too. Sounds like you are really in terrible pain. I hope Dr will be able to find the best solution for you soon. 
  • Middleton
    Middleton Community member Posts: 133 Courageous
    edited August 2022
    Options
    krippled said:
    I've not worked for nearly 10 years due a slipped disc (15yrs ago) which caused permanent damage to the nerve root at L5-S1 (removed and vertebrae fused in 2013) still causing my back to lock up constantly, extremely painful sciatica down both legs, affecting my hips and more recently causing numbness in my feet and toes, also the sciatic nerve is being irritated in both knees combined with the fact I have no cartilage in either knee, no fluid inside my knees and just to top it all off I have fluid on my knees the pain is debilitating 

    After I misjudged a kerb (over stepping expecting continuation of path) when my foot landed I felt shock waves right up to the top of my spine. Recently I have had to call out paramedics on multiple occasions because I've not been able to gain control of my pain, even though I take enough medication to put an Indian Elephant to sleep.  Anyone in a similar situation will know the most effective treatment is gas and air 

    Currently, on top of the pain I'm in all hours of the day, I'm suffering with intense pain my groin, hip. I didn't think the be sciatic pain down my legs could've actually be higher than it was however the dial has been increased from 10 to 20... there needs to be a new pain descriptor developed for me to be able to explain the level of pain I'm in

    I've been on the same medication for around 12 years and on the maximum dose of each for around 8yrs. My medication is becoming less and less effective.
    During an appointment with pain specialist team, the Dr looked at the list of medication I'm on and explained that she couldn't really help. 

    Physically I cannot do any suggested physiotherapy due to the exercises as it causes to much pain plus i simply dont have the strength. My partner who is an ex carer helps alleviate my pain by massaging both my legs and knees

    Anyone in similar situation advice would be more than welcome on pain relief which they find helpful 

    Have you been offered to go to the Pain Management Clinic , Gassiot house, St Thomas' London Hospital?  They deal with this issue, along with many others. They may be able to help you, as theyre experts on multi approach pain management.
  • SueHeath
    SueHeath Community member Posts: 12,420 Disability Gamechanger
    Options
    I will be following your progress @krippled while I'm on my waiting list for pain implant.
    All your symptoms are the same as mine and a lot is caused by association or medication.
    You mentioned trying to see if you could have a full spinal MRI scan, has consultant offered you a CT scan yet ?
  • Alex_Alumni
    Alex_Alumni Scope alumni Posts: 7,562 Disability Gamechanger
    Options
    Hello and welcome @krippled and thank you for sharing about your condition and explaining everything so fully. To help newer and current members find your post and add their thoughts, I've moved it over into our chronic pain and pain management category.

    I can appreciate nerve root damage is incredibly painful to manage, and I'm glad to see so many responses from the community to your post. It shows you are not alone in this :)

    In case you haven't already, you're welcome to explore the forum whenever you're ready. The coffee lounge is a good place to start, you can chat to other members and play games.

    If you'd like to see all the latest conversations, go to recent discussions, or for all the different topics for discussion just visit our categories page.

    Let us know if we can help with anything further.

    Alex
    Online Community Coordinator
    Scope

    Concerned about another member's safety or wellbeing? Flag your concerns with us.

    Want to give us feedback? Complete our feedback form now.
  • iza
    iza Scope Member Posts: 703 Pioneering
    Options
    Hi @krippled, is there any chance for operations to realise the tension on nerve ? 
  • Waylay
    Waylay Community member, Scope Member Posts: 973 Pioneering
    Options
    Dear @krippled, I have essentially the same issue as you - serious herniation at L5/S1 15y ago. (Never a good sign when the neuro looks at your MRI and says, "Oh, wow, impressive. Mind if I bring a couple of students in?")

    The pain was out of this world. I also had severe sciatica (only L side, for me), and numbness, tingling, pins and needles in foot, thigh, and 2 muscles in my back/butt. 

    Nothing helped, and after 2 months needing support to get to the lol, I had a microdiscectomy. Alas, a small (but bigger than most people would imagine!) % of md's fail, and mine was one of them. I grew massive amounts of scar tissue in my epidural space, around my spinal and sciatic nerves, and all the way up the wound track to my skin. I've been disabled ever since. 

    I still have back pain and sciatica, but at this point the muscle spasms are the most disabling symptom I experience. I also have a number of muscles which have atrophied/overgrown in my back, hip, butt and leg. 

    I've had epidural injections (no help, may have caused more scar tissue formation), deep tissue injections (helped for a few weeks), facet joint injections (nada), and radiofrequency ablation of 2 nerves at L5/S1 (helped for a few months, which allowed me to do physio and get stronger before the pain came roaring back. I've also tried acupuncture (useless), trigger point needling (helped for a few days), reiki (nope), massage (very helpful so long as I had it weekly), cbt (nope), pacing (VERY helpful) relaxation exercises (helpful), mindfulness (actively bad for me), visualisation exercises (somewhat helpful), daily stretching (very helpful), muscle strengthening (kind of helpful), meditation (couldn't do it), hydrotherapy (LOVE), and a variety of meds. 

  • Waylay
    Waylay Community member, Scope Member Posts: 973 Pioneering
    Options
    Oops. Nothing took the pain away, but in combination, I'd say my pain is... half what it was at the beginning? My disability is about the same, alas.

    Good luck.
  • krippled
    krippled Community member Posts: 18 Connected
    Options
    iza said:
    Hi @krippled, is there any chance for operations to realise the tension on nerve ? 

    I've had the problematic disc removed, however due to the period of time the disc was lodged in my nerve root its caused irreparable damage. 


    Waylay said:
    Oops. Nothing took the pain away, but in combination, I'd say my pain is... half what it was at the beginning? My disability is about the same, alas.

    Good luck.

    Thanks, 

    I've had Spiritual Healings and also Reiki and found healings to be more beneficial. Funnily enough I had two epidural injections on Friday and so far they have been beneficial.

    If I gave a Rhino my morning meds it would drop like a lead balloon 

    Last Wednesday I simply bent over to pick up a pen which was on a chair seat instantly a sudden sound of "POP" and that crunch feeling in my back along with a huge side order of what felt like lava running down my legs and more muscles locked than the amount of padlocks on the French bridge....

    By Sunday I couldn't bear the pain any longer (with long term pain you build up a higher pain threshold which I didn't know) and was awoken by it at 3am. Unable to get back to sleep and knowing that the local hospital would be full of drunken injured usuals, so held until 7am to which I was told it could be 3½ hours. However a DR called me to get more information and blue lit paramedics who were on scene within 10 mins..  Antinox(Gas and Air) is the only pain relief that works for spines or muscle spasms as it relaxes ALL muscles.

    The A&E Charge Nurse ordered me an orthopaedic adjustable bed, because I'm 6'4" my legs were hanging over the edge causing a pull and extra stress on my spine. Even though I spent around 20 hours on an A&E bed in excruciating pain,  one nurse actually came in to the bay to apologise for not being able to get me a bed while he was on shift. I told him that there was no need for him to come and apologise as it simply wasn't his fault.

    It turned out that 3 discs had slipped L1 & L2 and L4 had slipped further. After being told by various family members that I was putting it on - the same who have seen the mri of a decimated nerve root- I happily sent them photos of my latest mri showing the slipped discs...


    Even without the slipped discs and what I now know was L5 that was removed and fused, I still have constant sciatic pain in both legs, hips and even numbness in my toes...

    Always wondered what would happen if the surgeon were to remove the nerve root behind L5


Brightness

Complete our feedback form and tell us how we can make the community better.