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Lumbar disc problems, constant pain. Where next?

(137 Posts)
PavlovtheCat Wed 06-Feb-13 21:23:30

Yes <sigh> it's me. For those are wondering who <me> is. It's a looooooong woeful tale of misery and pain brought about by degenerating L5/S1 vertebral disc.

So, medically this is where I am:

Had second spinal pathway (assessment point) appt with 'clinical senior physiotherapist' who works with the neurosurgeons. He agreed weakness of foot flexor on left leg, and some muscle weakness/atrophy in the calf, along with numbness and not being able to get anywhere near tippy toes on that foot, agreed that indeed things have probably got worse and that indications are the nerve is trapped/damaged (either or both) (yes, probably happened when I was told to do 'cobra' with force x 10, 4 times a day despite not being able to stand straight due to back not liking it - literally as soon as I was forced 'upright' the nerve pain shifted from right leg to left leg and BADLY). He also said he suspects I have an unstable spine, and that if disctectomy was not required, spinal fusion is very likely the best option now (different from Aug 2012)

MRI at the end of December. Results show 'indications of disc bulge that warrants discussion with neurosurgeon' and a letter was sent to say that this, along with evidence of planter flexor weakness, and some other jargon, the neurosurgeon has 'kindly' agreed to see me. YEY! I got this letter mid January, fabulous, not long now!

12-15wks wait. 4 months. To just have a chat with the guy. But, hey ho, at least I am on the waiting list now. And at least I am having a good run, with good positive thinking to push the pain to the back of my mind and I was walking straight so it seemed I was doing well, last 'episode' was over christmas, but recovered well. Yes, the odd few days where it 'goes' but I am learning to manage those episodes with carefully planned rest/medication/exercise contigency. Except, NO.

About two weeks ago it 'went' again. Really. Fucking. Badly. I should have gone to hospital due to level of pain, but in fact, I was at home on my own with two children one of which was poorly (another story). Goodness knows how I managed it. But I did. It took until sunday this week (10 days?) to stop the muscle spasms, which were going higher and higher. I was physically unable to stand straight, not just due to pain, but the back refused to go that way. Like before. So, I did the cobra exercises. Just 4 of them.

And now, the worst possible pain imaginable down through from my back (but not there particularly) down deep in my left buttock, hip, thigh, calf, right into my foot. It feels like something is going to snap. The pain when I take a step is agony, and although I can straighten, I can do that AND walk. My leg has to be bent outwards a bit when I walk and I can't put pressure on it.

And my back keeps 'buckling'. If I knock into something it gives way. If I twist wrong it gives way. I stood up from the chair yesterday without thinking, so did it normally, how I used to, not slowly, and as soon as I got to the almost standing position - BAMM! pain and collasped back into the chair as my back gave out.

I CANNOT live like this any more. The pain is unbearable and my meds are not touching it. It is now keeping me awake at night, I can't find any position with no pain. I have tried so hard. SO FUCKING HARD! to get on with life. How can I make it through like this until April or May? And then god knows how long before any surgery? My life is fucked. It is taking it's toll on every single aspect of my life - my relationship is at rock bottom, although luckily we love each other enough to recognise we need to make some changes, and that we want to and are talking about things now my work, well, I am hardly there, next to useless when I am. I will very likely lose my job at some point this year, certainly decrease my salary as I go onto half pay. Let's not talk about my children, they are rocks, but, even DD is feeling it now.

So. Apologies for the extraordinarily long rant to get to the point. But, where next medically? My GP has referred me to pain clinic (there is a waiting list of a month or so) I have no idea why they didn't do this before, I have asked, but heyho. And I have been given pregabalin. I have been given this before, but didnt take it as I am scared. I have tried amytriptiline and gabapentin and both turned me into a zombie-like person, I could not function. Although amytriptiline worked well in terms of nerve pain relief. GP gave me a lower dose and I took the first dose this evening. What else can I do?

If I go to the hospital, will they be able to give me steroid injection into my spine to numb it? God I so want to do that. Go to hospital, have some fucking powerful drugs and be left to sleep for a few days with no pain. Then I can get up and get on with it again.

How the Heck do I get through the next few months when I can barely get myself up and dressed in the morning, let alone have any life? Any techniques for coping (don't say counselling...).

The prospect of 8mths plus before surgery and then 3 months recovery. I am not going to be anywhere near normality for another YEAR! presuming of course surgery is suitable.

Sorry. I am sure you are not going to get this far. But if you do, fucking well done you!

PavlovtheCat Thu 07-Feb-13 08:57:14

Didn't sleep much between pain and DS who was up and refused to settle for DH, only me (then instantly) several times. And I fell asleep in a toddler bed, now that is NOT good for back problems I can say.

It's a very raw, hard, aggressive pain. I haven't got up yet. I can't face it. It hurts like hell and I have not even got out of bed yet. I have spent some time focussing on the pain to try and locate it. As I had thought last time and again this time, maybe it's my hip not my back. But, no I really think it is the nerve. If I press where the foramal opening it on the sacrum, it really hurts, if I press where there is a little pain around the base of my spine and near my backside it hurts and it makes me foot numb. Now, that bit is concerning me - it is not numb there but there is altered sensation and also some coming and going tingling around my genitals. That will go when I get up though, I have had that before, it comes and goes, and again the medical professionals know that. I have told them. Pee'ing and poo'ing fine. well, less fine as I have taken codeine wink but nothing more sinister than that grin.

I was meant to get up with the children as DH worked late shift and starts today at 10am. I thought it was 9am, thank goodness it wasn't. I said last night when he got home I would give him some time this morning, as he is knackered too, but bloody hell, to start with I couldn't lift my head off the pillow (new meds I expect) and then when I was ready, the agony was too much. So, taken meds without brekky, so that I can actually get up and take Dh to work.

Then, I am going to have coffee with a lovely friend who is in early stages of a very wanted and long time coming pg to talk about babies and she will help with DS I am sure. I will see how the morning goes and if I get to lunch time with no let-up I will ask DH to come home and take me to A&E. I will prepare him for it before work so he can let his employers know when he gets to work. They are aware of my back problem as he has had to take last minute time off work before, but to say they are less than sympathetic is an understatement, although individual members are.

PavlovtheCat Thu 07-Feb-13 09:00:53

tough and yes, I am starting to acknowledge, slowly, that I am depressed. Now, that is tough. I have never suffered from depression. Stress, yes, I can be highly strung if under pressure, but not depressed. It has taken some time, but I can now start to see it for myself, but still struggle to know how much of this fog and upset is pain and how much is depression as it's all mixed up with each other. But, I don't want more drugs to manage that anyway. I am taking enough. I had a conversation with my boss couple of days ago, and even she suggested I get bloody counselling! wink

How are you Pavlov? Did you have any success with referral today?

My back wasn't as bad but pretty close. I had a burst lumbar disc and was crippled for a while. In between the drugs and a TENS machine life was just about manageable. Anyway, what I did say to the medics was that I could do the operation at short notice, that way if they had a cancellation they could call me in. It might be worth saying you can do this - there are often cancelled operations due to the patients being too fat or having contraindications which mean they can't go ahead.

Also ask for specialist pain referral whilst your waiting.

PavlovtheCat Thu 07-Feb-13 16:37:13

I am doing ok tough. Pain has been bearable today, with the help of additional painkillers and a good friend to moan to. We walked around a department store with me stopping to sit in the random chairs placed, just for me it seems. I am dragging my foot, but, that is because it hurts to pick it up rather than because I can't pick it up. I try to make a point of picking my leg and walking 'normally' as the pain has eased with walking a little, but when I do that, my foot goes numb, so I have to shift slightly to the side to bring back the sensation. I am walking very slowly and shuffling with leg straight but insisted on walking as I have not done much for couple of weeks, needed to get out and moving. It felt good to look at dresses and bedding and spray perfume on and get free face product samples, drink coffee and chat, even though it hurt like hell to do it. Luckily, DS was an absolute angel and behaved himself. My friend helped a lot through it though, and he loves her to bits so often wanted to hold her hand down escalators etc.

DH is not working this evening. Thursday is normally the evening we try to do something for us when not working, but, I suspect, as happens often these last months, that will go out of the window and I will take more painkillers instead, but part of me says, no, I won't I will stay alert and we can watch a movie, but I really can't see that happening. Poor guy, it's really shit for him too.

So I didn't contact GP as I wanted to try and ignore it all for a bit, and also as I know what he will say. Spinal Pathway team - I am going to call them tomorrow for some advice/see if they can see me again.

PavlovtheCat Thu 07-Feb-13 16:38:21

world thanks for that, worth me calling them tomorrow and letting them know. I am waiting for appt to pain management clinic, done a couple of weeks ago, but so far nothing has happened, it's apparantly a month or so wait and my GPs are slow sending letters as it is.

PavlovtheCat Thu 07-Feb-13 16:40:26

I haven't got a tens machine. I have been told about them lots and keep forgetting. I will borrow (loan) one from Boots and see if it works, then i it does, if it works, I will buy one.

BramblyHedge Thu 07-Feb-13 16:41:26

Quick reply sorry. I had microdiscetomy in April and was bumped up list due to having 3 small children to care for. I had a private consultation £250 and was then put on NHS urgent list. Is this an option for you to speed things up. My op was a success if that helps.

Pavlov, I have skipped to the end here.GO TO A&E now tonight.yes I am shouting at you because I'm scared you are going to end up paralysed.stop making excuses and go. I have followed this from the beginning you have done all you can, you really really have.It's time to call in the heavies.

and cobrasangry angry angry angry what possessed you to do them again? personally I think you have a case to sue that physio.he proposed a highly aggressive treatment based on a shoddy evidence base that has made you worse.I am sosad angry on your behalf and honestly really worried about you.

worried now I will have upset you,sad it's just so stark reading it all laid out like that..

FoofFighter Thu 07-Feb-13 17:19:05

pavlov, we've talked before in the past, I have the same thing. Had suffered with it for almost a year before surgery came up (which then didn't go ahead for reasons not going to go into) A year later and still suffering although more off than on thankfully for most of the last year, it's coming back with a vengeance now I am pg though.

Anyway I wanted to say that my aunt also had the same thing happen, presented at A&E within a few days of symptoms FIRST STARTING and had the op within the next few days hmm

Go to A&E, there's really not much else you can do other than get your GP to put pressure on neuro. It might work, it might not.
And double check that you really don't have ANY of the cauda equina symptoms starting up...

Good luck to you x

PavlovtheCat Fri 08-Feb-13 10:58:58

denial my lovely you have not upset me. You are right. I need to do something A&E or something but I am scared of a) not being listened to, being made to feel stupid and sent away with no change and conversely (my main fear) b) being told I need op right there and then.

Why did I do the cobra exercises? because, I was so so hunched over, and I could not stand straight and had been like it for too long, as such all my muscles up to the top of my back were starting to spasm, and I had the physio words in my head 'if you don't get yourself straight asap you will end up permanently disabled, you have to get through the pain and do it' 'if you don't get straight, then no surgery is going to work' because despite my instincts telling me it did not feel the right thing to do, I also had the fact that as DH reminds me when I try to take matters into my own hands 'they are the trained ones, qualified, of course they know what they are doing', because I was fucking stupid.

OK, I am waiting for spinal pathway team to call me back for a chat and see what they think/if they can speed things up. Pain has reduced somewhat today, although oddly had started a little in the other leg (hip), but prob as I am compensating in my walking. Night time is the worst as lying on left side is excruciating, but I took 100mg tramadol (MR), 30mg codiene, 4mg diazepam and 25mg pregabalin before bed. So, I should bloody hope to see a difference grin. I have sensation back in my foot for the most part and just bad pins and needles rather than numbness.

I am pretty sure I don't have CES symptoms, not 100%, but peeing and using bowels fine.

PavlovtheCat Fri 08-Feb-13 11:58:27

ok, spoke to lumbar spinal physio. He said my best bet is to call neurosurgery team and ask to go on a cancellation list, as world suggested. He said the waiting list was made up of lots of people just like me, not able to work, caring for young children and he would need to make a good case for trying to 'expedite' my referral. I explained my symptoms and he told me to see the GP and discuss my pain relief, and I told him that a) I have done that and on the maximum level of drugs that I could possibly get from the GP and that b) yes it would be lovely to take tramadol plus 60mg codiene and 5mg diazepam 3 x a day plus pregabalin, but it is not realistic with two young children, and a husband who works shifts so cannot always be there to care for the children. I told that him that also it would not stop it all hurting, it would just make me care much less and not be able to participate in my family life.

He asked me to do one of the tests where I held on to his hands and stood lift up on my toes at last referral. I can't do that. He said that he would therefore email the neurosurgery team for me and would ask that they expedite the referral, as my original referrer, but that there were no guarantees. He suggested that I call them on Monday and ask if they have been able to take me up the list, and if not ask for cancellations as discussed.

Why does it take being upset, cross and crying to get someone to bloody listen and do something angry sad

So, I now feel for sure that if I go to A&E they will not do anything. He made me feel like I was being dramatic or, no that's not the word, thinking that I have it worse than everyone else and I should just get on with it like everyone else on the waiting list is doing.

He was not rude, or unpleasant, he just seemed to be fobbing me off having heard it all a hundred times already. Probably has.

But, yeah he has probably seen much worse than this, of course he would have in his job, but that does not make my experience any less valid or real.

I also said I understood there are people on the list not working because of their condition, but that I still have my job and if this continues with no real treatment I will lose it, because this has happened to other people it does not make it ok to let it happen to me too. He seemed to be saying that because I am still working, it means I am less of a priority than those who can't work. He does not get that the only reason I still have a job is because a)i work for a government based organisation who have to follow Equality Act to the letter before they can fire me and am a TU member and b) I have a very understanding and supportive boss who is bending over backwards to accommodate me and c) i know what my rights are/rather that I have rights - many people lose their jobs because they don't have those things (sorry, rant there).

I am so fucking cross. But, least it has taken my mind of the pain grin

MissEleanorLavish Fri 08-Feb-13 12:51:36

Pavlov, I've lurked on your threads so know your story but now if your legs going when you stand up, being unable to stand on tip toes etc, having to drag your foot etc, it sounds like things are getting much worse. Ignoring what you think might happen at A&E, and listening to your body - do you feel like it can wait or do you need to be seen now? If the latter, get yourself down there - don't worry about wasting their time, people go for far far less.

PavlovtheCat Fri 08-Feb-13 13:28:10

Hi, thanks for lurking grin It feels like each time it 'goes' it gets much much worse, for much much longer, then very very slowly the pain eases. And although I am in a lot of pain, it feels like it does feel like it is easing now, after two weeks. Slowly. I am not dragging my foot due to inability to pick it up, but because it hurts my hip/buttocks/leg right to the foot to pick it up and increases electric shock pins and needles.

I feel much better than I did yesterday. Or the day before. And, despite some coming and going numbness, less pain than before.

PavlovtheCat Fri 08-Feb-13 13:29:14

and I think it is my back that goes, my legs give way yes, but it seems to be like a huge thunderbolt of pain through my back that instantly causes my legs to give way when I stand, if that makes sense.

FoofFighter Fri 08-Feb-13 13:47:25

Total sense yes.

PavlovtheCat Fri 08-Feb-13 14:37:23

miss I have been thinking about your question, putting aside what A&E might think etc, do I think this can wait?

So. My answer is not straightforward. I am not sure I can do straightforward. No, I don't think it can wait. I think it needs to be dealt with now, as if it isn't, at the rate the pain is increasing each time, there is a risk next time it won't recover and damage will be done permanently. It needs to be done now so that I stand a chance of my life not being irreversibly fucked up, not just the physical consequences of a trapped nerve, but the lifestyle damage - loss of job, loss of relationship, it is all being threatened right now. But. This has been the case for months.

So, I guess, really the answer is Yes. It can wait. Because it has waited this long. Because although these last two months has been absolute torture in terms of pain management, and this last week or more in terms of leg pain has been the worst it has ever been, it will recover to some sense of normality (4/10 pain let's say) and the symptoms that make me (and everyone else) go shock will subside enough that fear has also subsided. It is starting to do that now, but it WILL go again, and I know it will be as bad next time. Although maybe not if I avoid Cobra Exercises this time wink. I will be left with residue numbness in my foot/toes and a smattering of numb patches that come and go, along with pins/needles in my foot, and elsewhere. These symptoms, they have been present since Aug last year, so A&E will not see them as urgent.

But. DH and I have spoken, not 10 mins ago. If this happens again, I will go to A&E regardless of work commitments (his or mine) or any other factor that might put me off.

And I am going to try to get the money together to see the consultant privately and let him know how fucking crap my life is right now so he can consider actually fixing me.

MissEleanorLavish Fri 08-Feb-13 15:39:27

All makes sense and I don't think any answers with chronic pain are straightforward but glad to hear at least it's easing right now. And that you have a plan for next time. And yes, a consultant needs to hear how crap it really is - as you say your whole life is being affected.

MissEleanorLavish Fri 08-Feb-13 15:54:34

But speaking as someone who had suspected CES - please do go to A&E if you feel anything changes - it's not worth mucking around with.

LostInWales Fri 08-Feb-13 16:12:36

Oh Pavlov <gentle squeeze> fucking backs. Follow up the pain clinic refferal, I can't understand how you haven't been referred for some nerve block injections, they can make such a difference, not a cure but certainly keep you going until you have your neuro appointment. Keep taking the drugs wink.

I have just discovered the joy of an electric blanket, rather fantastic the other weekend when I discovered exactly why stopping tramadol is a very bad idea!

PavlovtheCat Fri 08-Feb-13 19:42:53

lostie oh are you still suffering too? I have a fab heat wrap which is almost always on. I have finally been sent to pain clinic where they can do injections. I had one epidural injection about a yr ago don't work but Apparantly the pain clinic can do more direct injections. I don't know why I didn't get referral earlier, been asking. It seems to take stomping,crying and being a pain at the doc surgery to get any referrals. Now, they are doing much more but, so much has been left so long.

I have taken lots of meds, watching cooking prog, trying to ignore the fuzzing in my leg. I sometimes get thi odd flu like pain, like an unwell feeling in my spine just before it really 'goes' and I have this now, I have drawn my own views of this, think it toxins from the disc tear which means it has leaked. Of course that is probably a pile of horse shit but it makes sense to me. Also means pain in back will increase again by tomorrow sad

you know I think you should copy and paste your descriptions on here and send a letter to gp, physio, consultant asking them to assure you that your condition won't deteriorate while waiting oh and add in your mp! I am sosad for you, this is horrendous that anyone should have to suffer this much.

Say as predicted it is worse tomorrow. You go to a&e and you see a Neuro consultant. They say Pavlov this has to be done now because if we don't scary x,y and x will happen.Would you do the surgery?I think you would because you would have been sort of given permission to do it.

The physio giving you the "there are worse than you on the waiting list" guff is using emotional blackmail to make you shut up and go away.Nobody has even examined you today.How can they know what subtle changes to your condition have occurred over the phoneangry grrr I'm really pissed off about this can you tell? wink wink

Or my next scenario, if your dp woke up tomorrow / or had an accident tomorrow and ended up in the state that you are in what would you advise him to do?

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