Discussion
TheGreatDane said:
Been over 2 years since my L5/S1 fusion and I've been relatively ok.
Woke up two days ago with the same pain I had prior to the surgery.
Bloody concerned and I no longer have private health cover.
Best of luck - fingers crossed it will be just a trapped nerve etc and disappear. Woke up two days ago with the same pain I had prior to the surgery.
Bloody concerned and I no longer have private health cover.
I'm a year and half out from my L5/S1 fusion and have had SI joint pain from about two months post op. Tried literally everything without any success and it now looks like I will be going back to get the SI joint fused. Will be like Robocop by the time I get it all sorted.
Out of interest, have any of you who have had fusions had to report it to the DVLA?
I hadn't considered it at all until today when my GP told me I needed to before he'd allow me to drive category 2 (bus and HGV) again. On checking the DVLA website it says spinal injuries or surgeries must be reported.
Seems a bit overkill to me, I'm absolutely fine, have good range of movement in my neck, no pain, not taking any drugs at all.
I hadn't considered it at all until today when my GP told me I needed to before he'd allow me to drive category 2 (bus and HGV) again. On checking the DVLA website it says spinal injuries or surgeries must be reported.
Seems a bit overkill to me, I'm absolutely fine, have good range of movement in my neck, no pain, not taking any drugs at all.
Should probably throw in my two cents. I've retold my tale of woe a few times over the past 5 years.
I was rear ended at speed while stationary in traffic on 12th December 2018 at 4.50pm it's a day I wish I'd never left the house. Some guy decided playing on his screen was more important than keeping his eyes on the road, shot the lights and slammed into me, I was a sitting duck. Since then I have been in constant pain, unable to run, or walk at a decent pace, constantly exhausted when I do, wake up every morning unable to move my legs, unable to lift anything above 5kg. I have been unable to exercise or play sport, 5 a side 2-3 times a week impossible, gym impossible etc. At 30 I went from being independent to living back in my childhood bedroom.
I was told after an X-Ray I had a L5-S1 herniated disc. The first scan went back to my GP who said "I don't know what I'm supposed to be looking for". He also said I might have nerve damage without even sending me for an EMG and just prescribed me a lot of opioid meds. I had physio and hydrotherapy which left me in agony for days afterwards, I couldn't do the routines but I was told 6 weeks or paracetamol and heat packs and I would be back to normal. I then.went private and was told if I'd continued to take the medication my GP told me to experiment with I would have been in a coma or at worst 6ft under. I had an MRI was was told I had a herniated disc and paid for a epidural steroid injection at my own expense, this did absolutely nothing to improve my situation.
Now five years on I get daily leg cramps in my calf dozens of times a day, shooting pain up my back, my big toe gets sore, leg weakness so I can't do basic DIY tasks so I feel a complete failure. My GP said there is nothing they can do but give me ametryptaline and other rubbish and just stay on the waiting list and wait for a phone call.
It never happened and I have at least 10 X-Ray, 8 MRI, 4 CT scans and 2-3 spect scans in the last 5 years and I am still on a waiting list for spinal fusion on the NHS. I last had a Spect on the NHS in September and despite me phoning weekly I keep getting told "yes you're on the list but they are long and we don't know how long it will be" even though I got the scan images and report by the end of September.
I got £2500 for a diagnosis from my health insurer and went for a private EMG for nerve damage and private MRI, even after these I am at the mercy of my consultant on the NHS who said he wouldn't do fusion until he was convinced it would be effective and the best option. He works 1 day on the NHS and 3-4 days at the private hospital I attended.
I have a recent MRI and EMG I am at a loss what I am supposed to do now. There is a legal case ongoing and to date I have had zero payments from the other parties insurer who accepted liability but are disputing the accident caused my injury, this is despite me being in perfect physical health. Not even an interim payment which my solicitor dismissed outright as he issued court proceeding and said it wasn't possible.
Financially I've spent a lot of my own money on private scans and consultant appointments, I've gone from having a very healthy rainy day fund, a very healthy housing deposit to being unable to work and living off limited capability for work benefits, I never thought at 35 I'd be in this position. I am about £50k down and lost earnings probably £200k, I won't be down the food bank anytime soon but my prospects are practically zero while i'm in this situation. I'm not even supposed to fly so haven't been out of the country in 5 years.
I should also mention I'm in Northern Ireland where the waiting lists are very long ,we don't even have a functioning government let alone a health minister. I apologise for droning on but just thought I'd explain my situation. I've written to media, my MP, the head of the health trust you name it I have made them aware of my situation. Did I get any response? Did I eff.
I was rear ended at speed while stationary in traffic on 12th December 2018 at 4.50pm it's a day I wish I'd never left the house. Some guy decided playing on his screen was more important than keeping his eyes on the road, shot the lights and slammed into me, I was a sitting duck. Since then I have been in constant pain, unable to run, or walk at a decent pace, constantly exhausted when I do, wake up every morning unable to move my legs, unable to lift anything above 5kg. I have been unable to exercise or play sport, 5 a side 2-3 times a week impossible, gym impossible etc. At 30 I went from being independent to living back in my childhood bedroom.
I was told after an X-Ray I had a L5-S1 herniated disc. The first scan went back to my GP who said "I don't know what I'm supposed to be looking for". He also said I might have nerve damage without even sending me for an EMG and just prescribed me a lot of opioid meds. I had physio and hydrotherapy which left me in agony for days afterwards, I couldn't do the routines but I was told 6 weeks or paracetamol and heat packs and I would be back to normal. I then.went private and was told if I'd continued to take the medication my GP told me to experiment with I would have been in a coma or at worst 6ft under. I had an MRI was was told I had a herniated disc and paid for a epidural steroid injection at my own expense, this did absolutely nothing to improve my situation.
Now five years on I get daily leg cramps in my calf dozens of times a day, shooting pain up my back, my big toe gets sore, leg weakness so I can't do basic DIY tasks so I feel a complete failure. My GP said there is nothing they can do but give me ametryptaline and other rubbish and just stay on the waiting list and wait for a phone call.
It never happened and I have at least 10 X-Ray, 8 MRI, 4 CT scans and 2-3 spect scans in the last 5 years and I am still on a waiting list for spinal fusion on the NHS. I last had a Spect on the NHS in September and despite me phoning weekly I keep getting told "yes you're on the list but they are long and we don't know how long it will be" even though I got the scan images and report by the end of September.
I got £2500 for a diagnosis from my health insurer and went for a private EMG for nerve damage and private MRI, even after these I am at the mercy of my consultant on the NHS who said he wouldn't do fusion until he was convinced it would be effective and the best option. He works 1 day on the NHS and 3-4 days at the private hospital I attended.
I have a recent MRI and EMG I am at a loss what I am supposed to do now. There is a legal case ongoing and to date I have had zero payments from the other parties insurer who accepted liability but are disputing the accident caused my injury, this is despite me being in perfect physical health. Not even an interim payment which my solicitor dismissed outright as he issued court proceeding and said it wasn't possible.
Financially I've spent a lot of my own money on private scans and consultant appointments, I've gone from having a very healthy rainy day fund, a very healthy housing deposit to being unable to work and living off limited capability for work benefits, I never thought at 35 I'd be in this position. I am about £50k down and lost earnings probably £200k, I won't be down the food bank anytime soon but my prospects are practically zero while i'm in this situation. I'm not even supposed to fly so haven't been out of the country in 5 years.
I should also mention I'm in Northern Ireland where the waiting lists are very long ,we don't even have a functioning government let alone a health minister. I apologise for droning on but just thought I'd explain my situation. I've written to media, my MP, the head of the health trust you name it I have made them aware of my situation. Did I get any response? Did I eff.
Edited by sutoka on Thursday 30th November 05:39
I know most of this discussion is about lumbar issues but a couple of you have also had cervical work so seeking a bit of insight.
I have damage from a car crash 25 years ago, originally diagnosed 7 years after and that was centred on C4/C5. Over the subsequent years I had a couple of physio stints which relieved most of the pain I was suffering. Over that time I was reasonably active but follow-up x-rays prompted them to advise me to stop any running or other sports where my feet left the ground. I took up Pilates which I found very helpful and enjoyable and was still able to do gym work and swim breast stroke.
About 2 years ago I started getting significant pain down my left side - arm/leg. GP prescribed Naproxen but within about 6 months it was getting worse and the masseur I was using started to discover a point in my neck (imagine Frankenstein bolt position) where she could apply pressure and it would modulate the pain. That got us thinking it was neural rather than tissue. GP suspected the same and switched me to Amitriptyline. That took ages to have any affect but eventually moderated it by up to half. Had another bout of physio which this time made things worse and feeling sick. I've tried acupuncture a couple of times but I find it incredibly painful.
Cut a boring story short, I was referred up to the Acute Pain team and had an MRI. That showed problems all the way down from C3 to C8. Suspicion is the Thoracic holes are closing up and impacting the nerves. As I have pain/cramps in all my left hand fingers it's not limited to a single joint. The best way to describe it is it's like someone has put an electric cattle prod in my left armpit.
The Catch-22 is that the "good posture" I've been lectured about for the last 20 years is now the worst position for pain generation. I can't sit up straight or stand for more than a few minutes. Sloucjhing on the sofa is the most relief. I have very interrupted sleep, often down to 2-3 hours per night and usually end up doing a tour of beds and sofas around the house. I'm finding it very difficult to work, especially desk/keyboard position. As I have my own consultancy business the income is dwindling to a trickle and I have never been able to get medical insurance with this pre-exisiting issue. I can now no longer walk more than a few hundred metres or do any gym work. Haven't done a Pilates class in a year, putting on weight and drinking too much. Needless to say quality of life is low, social side has closed down as well as I can't go to gigs, live football or the pub. We tried upping the Amitriptyline dose but that turned me into a low functioning zombie.
I had x-ray guided steroid injections in 4 positions just before xmas which gave some relief for only a couple of days. I had a meeting with the Orthopaedic Surgeon on Monday about surgical options. He is very reluctant to do surgery at the moment as he can't be sure which joint is the biggest culprit. He advised that if he was to fuse 4 joints, it would likely overload the spine above and below and start causing new problems. I can understand that and reading others experience here (particularly with lumbar) there does seem to be a strong consequential risk with that. His other concern is the complexity/risk of the surgery and the difficulty of access to the joints from either front or back (one is behind the shoulder blade).
His advice was to first go for CT guided injections which are more targeted at nerve blocking. That would also identify which is the most causal joint (although by doing 4/5 together I don't see how that would help locate). I fear this is going to drag my treatment out and living off savings / turning clients away isn't financially sustainable.
Any thoughts ?
I have damage from a car crash 25 years ago, originally diagnosed 7 years after and that was centred on C4/C5. Over the subsequent years I had a couple of physio stints which relieved most of the pain I was suffering. Over that time I was reasonably active but follow-up x-rays prompted them to advise me to stop any running or other sports where my feet left the ground. I took up Pilates which I found very helpful and enjoyable and was still able to do gym work and swim breast stroke.
About 2 years ago I started getting significant pain down my left side - arm/leg. GP prescribed Naproxen but within about 6 months it was getting worse and the masseur I was using started to discover a point in my neck (imagine Frankenstein bolt position) where she could apply pressure and it would modulate the pain. That got us thinking it was neural rather than tissue. GP suspected the same and switched me to Amitriptyline. That took ages to have any affect but eventually moderated it by up to half. Had another bout of physio which this time made things worse and feeling sick. I've tried acupuncture a couple of times but I find it incredibly painful.
Cut a boring story short, I was referred up to the Acute Pain team and had an MRI. That showed problems all the way down from C3 to C8. Suspicion is the Thoracic holes are closing up and impacting the nerves. As I have pain/cramps in all my left hand fingers it's not limited to a single joint. The best way to describe it is it's like someone has put an electric cattle prod in my left armpit.
The Catch-22 is that the "good posture" I've been lectured about for the last 20 years is now the worst position for pain generation. I can't sit up straight or stand for more than a few minutes. Sloucjhing on the sofa is the most relief. I have very interrupted sleep, often down to 2-3 hours per night and usually end up doing a tour of beds and sofas around the house. I'm finding it very difficult to work, especially desk/keyboard position. As I have my own consultancy business the income is dwindling to a trickle and I have never been able to get medical insurance with this pre-exisiting issue. I can now no longer walk more than a few hundred metres or do any gym work. Haven't done a Pilates class in a year, putting on weight and drinking too much. Needless to say quality of life is low, social side has closed down as well as I can't go to gigs, live football or the pub. We tried upping the Amitriptyline dose but that turned me into a low functioning zombie.
I had x-ray guided steroid injections in 4 positions just before xmas which gave some relief for only a couple of days. I had a meeting with the Orthopaedic Surgeon on Monday about surgical options. He is very reluctant to do surgery at the moment as he can't be sure which joint is the biggest culprit. He advised that if he was to fuse 4 joints, it would likely overload the spine above and below and start causing new problems. I can understand that and reading others experience here (particularly with lumbar) there does seem to be a strong consequential risk with that. His other concern is the complexity/risk of the surgery and the difficulty of access to the joints from either front or back (one is behind the shoulder blade).
His advice was to first go for CT guided injections which are more targeted at nerve blocking. That would also identify which is the most causal joint (although by doing 4/5 together I don't see how that would help locate). I fear this is going to drag my treatment out and living off savings / turning clients away isn't financially sustainable.
Any thoughts ?
Go and see James Allibone at the Wellington to get a proper diagnosis (although you will need more scans, I expect, so it won't be cheap). I've got similar issues and have had 3 x CT guided injections over the last 5 years which have palliated the condition effectively. I will eventually need a C5-7 fusion, but have been able to put this off for now.
Speed 3, sorry to hear about your pain. Your tale sounds similar to mine (except lunar rather than cervical).
Curled up alleviates the pain and a straight spine makes things worse.
Before surgery you may wish to investigate denervation. It is like the X-ray guided injections but instead of an injection the nerves are physically burnt. Didn’t really help with my pain but it has worked for others.
Curled up alleviates the pain and a straight spine makes things worse.
Before surgery you may wish to investigate denervation. It is like the X-ray guided injections but instead of an injection the nerves are physically burnt. Didn’t really help with my pain but it has worked for others.
Scrump said:
Speed 3, sorry to hear about your pain. Your tale sounds similar to mine (except lunar rather than cervical).
Curled up alleviates the pain and a straight spine makes things worse.
Before surgery you may wish to investigate denervation. It is like the X-ray guided injections but instead of an injection the nerves are physically burnt. Didn’t really help with my pain but it has worked for others.
I was wondering about that but it hasn't been suggested by the MDT. My concern would be losing control in my left arm and/or hand. That said I did ask about amputation at the lowest point.....Curled up alleviates the pain and a straight spine makes things worse.
Before surgery you may wish to investigate denervation. It is like the X-ray guided injections but instead of an injection the nerves are physically burnt. Didn’t really help with my pain but it has worked for others.
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