So after finally getting my MRI I saw a spinal physio the other day.
They explained that my disc at l4/l5 was pushing in to the part that carries my nerve. They basically explained that a 'normal' persons would be 100% whereas mine was 30%. My lower leg is still completely numb and occasionally feels like it has been set on fire. I also have pronounced weakness and can not do certain exercises.
The physio has referred me to a neurosurgeon to discuss a way forward. In the meantime I have to avoid lifting, twisting, etc. I know no one is a doctor but if anyone has been in a similar situation, and did you have to have surgery? I am absolutely terrified as I have had a few surgeries including one in 2016 which nearly killed me (I had internal bleeding and need emergency surgery and transfusions to save my life).
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I have 6 prolapsed discs in my spine from a car accident in 2006. I had an MRI at work as I used to be a Radiology manager/consultant practitioner Radiographer. L4/l5, l5/S1 I have nerve root compression like yourself.
I've had physio to no success and have been offered surgery but I won't have it as truth be told it could put me in a wheelchair. So personally I wouldn't go for that option. Ask your GP to refer you to A pain specialist. I have Buprenorphine patches 20mg which I wear for 7 days before replacing. They are brilliant. Just get the odd nerve twitch which sends a shooting pain down my leg, but it's nothing compared to how I was without. Try an electric heat pad to.
I have never found physio any help, and that was before my back got to this point. I swim which provides me some relief.
I literally can't bear the thought of surgery, I have had internal bleeding twice during surgery with the last one almost killing me. I have also had sepsis.
My GP is hopeless in that respect. I have been in pain in some form since I have been 17 and in chronic pain for the majority of my 20's. I am prescribed 60 mg codeine for my other condition but hate the side effects so avoid it all costs. Plus my surgeries have lessened the symptoms of it.
I have been prescribed morphine and diazepam for my back but again hate the side effects. I need my brain for work and to look after my children. But it is wearing me down.
I have a heat pad and a tens machine which does help.
It is not just the pain I can't imagine this being my life as I adore exercising. I have been told not to twist, weight bear etc. I circuit train and do pole fitness when the pain is manageable as it keeps me sane.
Hiya sorry to hear your news. I had fusion 8yrs ago plus nerve decompression as my nerves were crushed in between my discs. I have degenerate disc desease,the surgery didn't work. I didn't produce new bone growth around my rods & pins to hold everything in place. I have suffered for 14yrs with my back problem & to be truthful it is no better now. Gud luck with all your decision it may work for you.
I have degenerative disc disease. I am sorry to hear that it didn't work, but thank you for your honestly. I just am not sure about the way forward. If surgery was guaranteed to work I would go for it but there are so many risks and so many stories of it being unsuccessful!
Hi there, I had a disc extrusion and a microdiscectomy after which I felt much better. (Had some hassle but had no choice otherwise I might have ended up in a wheelchair).Had a revision twice since. These are fairly straightforward operations and last about an hour or one and a half. They tend to go for these first as they are less taxing and have you back on your feet faster.
Thank you for your response. It is nice to hear that is worked.
I am concerned about permanent damage as my leg is numb and has started to feel heavy/more unresponsive this last week.
When you say back on your feet, how long is the recovery? I have had 3 lots of major surgery. My last recovery was several months which was an absolute nightmare.
Hi there well my story was far from normal. I urge you though to seek further medical advice as a totally numb leg would indicate possibly a severe nerve compression. Normally after a microdiscectomy you are on your feet the day after the operation and often you can go home that day. You then have to be careful at home and follow the guidelines and you may well be back to normal in a couple of months.
I have physio again on Thursday so will chase it. Honestly, they are appalling I've had to fight them for weeks to get an MRI as they originally said it was just wear and tear due to my deg discs (I knew it wasn't). Then my leg went numb and started to go weak and they realised that I was right. I can still move my leg so they don't seem massively concerned to be honest. They just told me if I lose control of my bodily functions I need to be concerned.
My leg was very numb from the knee down and yes I could move it but that was not the point. I had also terrible pain in the non numb part. Only an MRI can tell you really what is going on. As I said in my case it was a massive herniation and I had to have a microdisctomy. To wait till you have bladder or bowel problems is kind of stupid as it then becomes an emergency situation usually and who wants that?
Yes mine is from the knee down and I have pain in my back and hip. Yes the MRI has shown that it is on my nerve. Yes I completely agree, I have already had to make a complaint to get this far so I am beyond frustrated with them.
I had an emergency laminectomy at l4/5 as the disc had protruded into my spinal cord. I woke up one morning and couldn’t move my legs, so the option was surgery or wheelchair. There are some risks associated with any surgery, and spinal surgery seems to be a particularly hit and miss affair, but I genuinely had little choice.
Thing is it worked beautifully at first. I regained most if not all of the movement in my legs and the sciatic pain that I had been suffering from cleared up for a few weeks. And then it happened again, literally woke up in the morning and couldn’t move my legs. This time it was c2/3, so another laminectomy. Not quite as successful but largely due to the multitude of other problems that I seem to have with my back.
For me, and I stress for me, the surgery that I had was what I would term successful. I really didn’t have much choice, and even with the surgery I had the surgeon told me later on that he had thought I was going to end up in a wheelchair, so anything is a bonus ultimately. I have avoided the need for another operation to fuse l4/5 as it auto-fused in the year following the 2 laminectomies (I had another MRI a year later due to recurring symptoms).
So although nobody can say what you should do with any degree of certainty (maybe not even your doctor!), I can tell you that there are instances of spinal surgery that work out as well as can be expected.
I have also spent a lot of time in the gym following on from surgery (with a good Personal Trainer that knows about recovery from spinal surgery), and I’m pretty certain that without this the recovery would not have been anywhere near as good as it has (so far).
I am glad your surgeries have been successful/got you a better outcome than expected, but I am sorry you have had such an awful time!
I am concerned as my leg as started to become less responsive and feel heavier this week. My pain has also started to flare up again.
I hate the thought of surgery, two of my surgeries have ended with internal bleeding, with one almost costing me my life. My other condition can only really be managed by surgery and is not curable. I have also had sepsis so as you can imagine I have quite bad hospital anxiety.
I absolute love exercising, it keeps me sane and helps manage the pain from my other condition. It has been a nightmare being banned from twisting, lifting etc (not that I could do it at the moment). I have been swimming though.
Are you able to do a lot at the gym? I was doing pole fitness and circuit training before my back fully gave way. I think I am being unrealistic to think that I will ever get back to that.
No worries, it sounds like you are currently in a difficult place yourself.
With regards exercise / gym - I can do a surprising amount now, but it has taken a while to get here. When I first started going I wouldn’t have had the knowledge or confidence to do what I now do, but seeing a (good) Personal Trainer was the right move for me. She has given me the confidence tomdo things that I otherwise would have thought were beyond me. Funnily enough you say about lifting and twisting but that is specifically part of my routine. I should say though that I have built up to that over the last 2 years - I didn’t just rush in and start lifting heavy weights, I built up slowly.
Despite everything I’m probably fitter than I’ve been for some years. I think the key is knowing what you can do without pushing it too far, and time. It wasn’t a quick process, but I did start to notice a difference soon enough to motivate me to carry on. I also believe that is I hadn’t strengthened my core muscles there is every chance I would have had more problems that I have managed to avoid (so far) by exercising.
If you used to do some form of exercise then there is absolutely no reason why you can’t do stuff now, in fact I would say it’s even more important now as it will help to protect your back from further damage. At least that’s how it feels from where I’m standing - after I started the gym everything improved, everything. Including previously damaged joints from RA.
Sorry if I sound like I’m nagging! It really has helped me though.
Thanks, I am glad your experience has been positive and that you have been able to go the gym etc. It makes me feel better about the situation.
That is interesting. I swim regularly, but the physio said I wasn't allowed to lift etc until I have seen the specialist. Yes I have always kept fit as my previous surgeries mean that I have a lot of scar tissue and damage to my core.
Totally follow your physio’s advice! I don’t want to encourage you to hurt yourself but once they’ve given you the all clear...
I guess it is standard advice when you’ve got back problems, but in the longer term you need to strengthen those muscles, and the only way is by using them. It was this worry about doing harm that made me see a PT.
Also when I think about it a lot of the stuff I did right at the beginning was learning various stretches for the spine, quads, glutes etc. Keeping the spine flexible is important and a surprising amount of pain can be caused by over tight muscles and stiff joints. Moving them (correctly) = good.
I also learnt how to use a foam roller and tennis ball for what they term myofascial release. I was assuming that all of the pain was from my back but it turned out a lot was tight and sore muscles that responded well to the above techniques.
I did have a series of nerve root block injections, but still had quite severe sciatic pain when I’d had 6 of them - after 3-4 months in the gym and doing daily stretches this pain had gone too, and as I’m sure you can imagine getting rid of sciatic pain is a blessing indeed.
The thing with physio in my experience is that they have a specific training that tends not to take into account things like muscle tension etc. Also people often have, say 6 sessions with a physio, don’t really do the exercises given and then wonder why it didn’t help. The PT I’ve been seeing has been ongoing for over 2 years now, I think it is that that has made the main difference - keeping on going. I’ve accepted that it is part of my life now if I want to avoid further back problems, but that’s ok - it keeps me fit.
One other thing that has crossed my mind though is that all of the gym stuff I’ve been on about was started after I’d had surgery and the pressure had been removed from my spinal cord. I guess you need that conversation with the neurosurgeon...
Hi, thanks for the replies. Yes I do, as I have no idea whether I will make it worse. I would love to start back exercising properly as I really miss it. Although, as my leg currently won't play ball and the pain is quite intense I would have to begin slowly. I did a lot of stretches and I am really flexible from pole fitness. It also improved my core strength loads.
Once I have discussed it with neurosurgeon I can move forward. It is frustrating being left in limbo if I am honest. I just want a plan so I can get on with my life.
Yeah, it is very frustrating. Also frustrating that it sounds like you were quite fit when it all started.
I was the opposite as Id been waiting for a total knee replacement for 5 years (too young) and had been busy looking after my children and not myself for the preceding 8 years. Lesson learned - you can’t look after your children very easily when you can’t walk and are in agony 24/7...
I hope you get somewhere when you see the neurologist.
Hi D_A I am pretty much in the same position as you. A recent MRI showed I have severe canal stenosis and anterolisthesis of L4 on L5. The pain in my right buttock and leg is almost unbearable. I can't take opiate drugs and so far Duluxotine and Amitripyiline made me very ill. My case was referred to complex spinal MDT and I understand advices from a neurologist are waiting to be signed and sent to me, after I chased up the pain management team on Friday. I have osteoporosis after long term steroid use for RD and the base line problems are the steroids. So I don't know what my options are as yet. I am also having tests for ILD possibly RD effecting my lungs. I have always said I wouldn't consider a back op but with this level of pain, maybe. I have Physio booked for 17th Dec. I do chair yoga. Good for stress. Keep in touch and hope all goes well for you. X
I am sorry to hear that. Please let me know how you get on!
I think it is so much harder when you can't actually take anything but have to carry on as normal. I have been given morphine and diazepam as that and codeine are the only things I can tolerate. But I avoid taking them due to the side effects. I can't take anti inflammatory tablets due to stomach issues from IBS/bowel resection/susp bile acid diarrhoea and nerve medication gives me migraines.
I can't bear the thought of surgery. Two of my surgeries have ended in internal bleeding, one was fixed at the time but my resection almost cost me my life. I also had sepsis when I had my son so have massive hospital anxiety lol. Do you every wonder what you did for your body not to work lol? My other condition is not curable and it has started to flare up again, so it is already bad enough that surgery may have to be considered again for that.
I have had physio countless times, I honestly found it pointless even before my back got to this point so hopefully you will have more luck. I swim twice a week which I find helps.
I absolutely love exercising, up until the last few months I have been doing pole fitness and circuit training as my back pain has been manageable. It really helps me relieve stress and keeps my mind healthy. I know it is dramatic but I can't contemplate this being my life having already undergone so much to be pain free for a couple of years. So if surgery is the only way forward I am going to have to give it serious thought.
Hopefully I will get some answers from the specialist. My leg has got a lot heavier this week and less responsive which isn't great.
Thank you D_A for your reply. My goodness you have been through a lot for your age. I can fully understand you reasons for not wanting further surgery, plus Sepsis, I have a fear of that. I have had many surgeries as I have Erosive RD for 33 years, so no stranger to pain. I started with my back only 2 1/2 years ago. I did have some physio and also went for circuit training, helped to a degree but unfortunately other health problems cropped up and I didn't look for courses suitable for me to continue with. I had triple foot fusions about 12 and ten years ago, so my posture is not the best. I also have a collapsed right ankle that needs fusing, but I can manage the pain and I can take Naproxen, however it doesn't touch my back pain. I waited 9 months to see the pain management team and a month after had an MRI. This year has been a nightmare, I have always kept going and a busy social life since retiring. I use heat pads and a tens machine as well. As you say, you wonder why, I am a good weight, careful with my diet and never smoked. My RD meds work for me for that, apart from terrible fatigue, I also have a B12 deficiency so injections for that. I make kifir milk and that does help with stomach issues. I will let you know when I hear from the hospital and please let me know when you do too. Take lots of care. X
Yes sometimes I find it frustrating but there is always someone in a much worse situation. I also look after my body really well - diet/exercise/don't smoke/barely drink etc
Yes sepsis was awful it was caught quickly and I was treated thankfully with far too many antibiotics. But my son had to be resuscitated and was very ill as it caused complications with my labour (he is absolutely fine and a very cheeky 4 year old lol).
That sounds awful and painful! It must be difficult to have to undergo so many surgeries. Yes back pain is just horrendous.
Someone else suggested that but I am vegan. Have you tried CBD oil for the pain, someone recommended it but I have had mixed reviews?
So pleased to hear your treatment for sepsis was quick and successful, a terrible worry for you with your baby son as well, when you are so weak. Good to hear he' s a lovely cheeky chappie now. You definitely have your hands full. My sons were teenagers when my RD started luckily. I have 5 grandchildren and adore them, always been involved in their lives, the younges two are 17 and the eldest is 22 a joy. I bought some CBD drops a couple of weeks ago and after a dodgy start, gave me a sort of hangover feeling, that's worn off and they lift my mood, but still maybe need to increase as not much help with pain. Have you tried it, I looked into it and bought online from CBD Brothers. X
That is lovely, I have two sons. My mum has seven grandchildren which keep her busy! I haven't tried it but CBD Brothers was recommended to me. Someone also sent me a link for massage oil etc with CBD in. x
I have read the other posts. Surgery carries dangers. Physio is one size fits all and is not working.
You say: "They explained that my disc at l4/l5 was pushing in to the part that carries my nerve." Speak to a chiropractor. Look up McTimony chiropractor they are more gentle. Did you do something stupid before the symptoms came into existence or were you hit hard by something? I am thinking is there a chiropractic adjustment that can take the pressure off? I don't know the answer to this?
Make an appointment to see an Alexander Teacher. They have skills that a spinal physio won't have. You need to avoid pain killers as much as possible. You need the discomfort to warn you about the pressure being applied to the nerve root. You will learn from the Alexander Teacher ways of reducing muscle pressure.
See a local Ju Jitsu instructor or similar and explain you situation. You are going to have to learn how to fall. Fall wrongly and you will break something. Fall correctly and all you will receive is a few bruises.
I have leg muscles in my legs which are too tight. This pulls a vertebrate onto a nerve root which results in the leg giving way. This has resulted in me falling several times.
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