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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!

thanks brew wine

choose as neededwink

LostInWales Fri 08-Feb-13 21:14:32

<waves some thanks along with denial>

I think the operation is a big thing but my Bil had it a few years ago and is back to jumping out of aeorplanes and skiing. You have to take the recovery VERY seriously though, something you would have to think about with your brood. There is no point doing it if you ruin it by going too fast afterwards. DH has had the injection (moderate bulging disc but straight onto the nerve root. Just call us the shit back family wink) and he has found it miraculous. The first one he had I cried when he got up for the first time as he went from limping and bent like an old man to walking straight in a matter of minutes, so brilliant if it works for you. He has a consultant neurosurgeon do it under x-ray control.

My back sadly is non-mendable as I've got degenerative arthritis of all the tiny joints where the vertebra articulate coupled with extra bone bridging some of the gaps. I have to thank you again though because the tramadol has made a huge difference to the mid portion which has been horrible for a decade. I am hopefully going to have the big injections to my SI joints soon which will hopefully get rid of my sciatica like symptoms and then with the tramadol only needing to sort my thoracic spine I will be dancing a jig wink.

PavlovtheCat Fri 08-Feb-13 22:30:01

lost are those joints the facet joints? Sponsl guy mentioned possibilitynofnfacet joint being the cause of probs, but, not any real conviction. So sorry to hear it is not going to get better, and yey! For tramadol helping. Are you taking the modified release or managing ok with normal release? It's good to hear about the injection working, this is really what I want to try before surgery. I had wondered if I went to A&e they would do it for me there but it seems if neurosurgeon does it maybe not. But, that would be fantastic if it worked. I agree about seriousness of surgery recoery and children and yes I have to admit that really worries me as ds is so very clingy, he won't leave me alone, and I am having to be really ruthless now in order to break that, or else it wont be possible until he is older. He is only 3 and as much as he loves daddy, there are times that only mummy will do. But we are working on that, starting with night time as I have said now my pain is quite severe at night I am no longer getting up to see to him. End of.

denial great idea about the letter. I am going to do that. Thank you! Re if this happened to Dh, I would have taken him to A&e long before now, if I'm honest. There is no way I would consider this normal and ok.

BUT, with me, I think, it has got this far slowly, building up worse and worse and I have got so used to some level of pain I just don't know how much more serious it is. But, I know, if I had no pain. If I were just as I used to be, and I woke up to this, imwould go to the hospital, I would feel worried. But, as I said, it's been incremental day by day, each episode is worse than the last, so not gone from 0/10-8or9/10 but gone up slowly and as it reduces back down I settle for 4-5/10 as normal. In fact I don't even know if I cannot a figure on it as its just there all the time so i minimise it. I remember I told osteo pain was around 2-3/10 so he didn't do MRI, I had epidural injection, which although didn't work, it gave me releif for about two weeks and then I realised my pain was more like 4/10, so this is worse. Right now, pain levels are 7/10 I would say. I think it is natural to minimise our pain levels and symptoms.

Would I have the op right now? Discectomy, hell yes. Get this blasted disc out, the offending bit, and see how it goes. I am worried that if it is not dealt with right now I will end up with nerve damage that won't repair. Worried that this pain will never end. But not spinal fusion, I have too many questions to ask first, like, why can't they take my healthy disc cells and transplant them into my sick disc so it regenerates? Or why is fusion better than full disc replacement, and will they do hip graft or donor graft, will I have the newest possible techniques available or spathe older style fusion?

Most of all, I just want this pain to end. I just want a break from it.

PavlovtheCat Fri 08-Feb-13 22:35:58

If I go to A&e tomorrow would I even see a neuro consultant? Because, if there was a chance I would, I would be there. Do they even work weekends? If there was any chance of getting a direct injection to help, I would do that.

Tomorrow is another day.

You guys all rock, thanks [hippy] brew

LostInWales Fri 08-Feb-13 23:10:07

I really don't know what would happen if you went tomorrow. I think a lot would depend on what sort of hospital you have locally, if it's unbearable it's unbearable though. There can't be much you can have prescribed differently but if you could make a case for CES then they would really have to try and scan you ( depending on MRI cover over the weekend). When DH has had the injections it's been as an inpatient day case, so admitted to a ward etc, not sure if they have that set up at weekends. Can't harm your notes or place in the queue though if the pain is so unbearable you had to go to A&E.

You are so right about getting used to always being in pain and finding it hard to score because of that. My physio ( who I saw privately) was a bit thrown when I said a 3 was a really good day, I can't ever remember having a pain free day. Last weekend was a 7-8 but that was my own fault because I got a bit pissed instead of having tramadol. I learnt that lesson really well wink. People in general have no fucking clue what it's like to have constant pain though eh?

You're right btw, I have progressive degenerative arthritis of my facet joints, stings like buggery let me tell youwink. Probably moving on to a patch because the slow release tramadol oral stuff doesn't last long enough. I'm just angling for a little hip flask of morphine really wink.

Hope tomorrow is a better day than you are expecting. I'll be here if you want to chat. (Ds1 is 13 tomorrow shock and he has decided he wants to slob around doing nothing, fine by me grin)

worldgonecrazy Sat 09-Feb-13 07:10:12

In amongst all the gloom, can I just say that once I had the disectomy my life improved beyond recognition. I still (several years later) get a huge joy in being able to wiggle my hips and other than a bit of stiffness, my back is now "normal". I hope once you get your operation that you have a similar recovery.

MissEleanorLavish Sat 09-Feb-13 09:08:43

I'm a few weeks post op (discectomy) and it's been hard (my kids are little too) but no harder than managing with a bad back (easier in a way, nobody expects me to manage and we all knew it would be 4-6 weeks before I was getting back to normal (whatever that is!). I've tried the steroid injections too (both to reduce nerve swelling and in the facet joint) and they helped until I knackered it again.

world it's good to hear several years later you still feel good. I'm so pleased at how I feel now compared to before that I'm terrified it will go again in the future - did you do anything particular to help your back recover?

Follyfoot Sat 09-Feb-13 09:23:05

You poor poor thing Pavlov. I had a prolapsed disc in my neck and the wait for surgery was desperate so understand completely how you must be feeling. Re A & E, perhaps you should go today? Not sure what the size of the Neurosurgery unit is, but where I worked we would have had a junior and a middle grade on duty for NS during the day at weekends, plus a consultant on call, so there is likely to be someone about.

Your situation reminds me of a friend who was in a similar state. Eventually he fell out of bed one day and couldnt get up. He was taken by ambulance to our hospital and had surgery the next day. Unfortunately his symptoms had carried on for so long that he was left with a limp sad .

If you dont feel you can go to A & E, you could contact the Consultant's secretary and explain how things are. He/she might be able to get you seen a bit more quickly, or point you in the direction of who controls the out patient clinics to do so. Or go back to the GP again and push for them to get the appointment more urgently.

PavlovtheCat Sat 09-Feb-13 09:50:40

eleanor wow you are post op! well done for getting through it with little ones, I really really hope it works for you and it doesn't re-occur. Was it CES that resulted in the op or was it a longer term planned op?Sorry, you have probably told me this before but my head is in a cloud of pain and medication wink I have heard so many good things. My own GP has told me that he thinks I need the spinal fusion now. He has swung quite dramatically from this time last year saying rarely would he ever say fusion as it is such a huge surgical procedure and does not always work to saying, last week when I hobbled in with so much pain on my face that even the 80yr old lady on sticks got up to open the door when it was my turn to see the GP, that he thinks they should do discectomy and fusion together. I am not entirely sure what makes him qualified, but despite his 'so laid back almost asleep' approach to care, he actually seems to know what he is talking about and had explained my first MRI to me when no-one else had. So, that worries me. I want more explored first, but it is taking so long that so much more damage is being done while waiting there might not be any other choice.

I am reading (again) a great book by Sarah Key 'Back Sufferers Bible' and it shows the stages of degradation and she says that pretty much all lumbar back pain stems, initially at least from a vertebral disc, even facet joint arthropathy, she attributes to being as a result of damaged disc placing pressure on those joints. She clearly believes that muscles spasms speed up the degeneration of a disc, as they can continue long after whatever triggered it. So, if spasms are not under control the disc will basically die completely. If this happens, there is very little that can be done apart from a) stem cell implantation (yeah like they will do that) or fusion.

She also has some great techniques for acute/sub acute/chronic phases of pain, but I can't ever seem to get past sub acute phase and her ideas are not always compatible with small children/jobs etc.

how is it today Pavlov?

PavlovtheCat Sat 09-Feb-13 10:00:53

Anyway, I feel much much better today. Emotionally able to cope with it all as much as anything I guess. I am almost moving normally although there is pain, it has subsided enormously. i have a numb back of my calf and numbness along the outer edge of my foot into my last two toes, but have had that before. I have a little numbness/prickling on my left inner thigh which comes and goes, I will keep an eye on it. <sigh> I just breathe a sigh that today, my pain levels have dropped for now.

So, at the moment, no hospital. A&E and the weekend is not going to be a great place to be, so I will just crack on at home. I can at least function now, where earlier in the week, and over the last couple of weeks I have not even been able to function as part of this family unit. I got up with the children this morning and did breakfast, while DH has a lie-in, and can sit relatively comfortably, numbness is there yes, but so much less pain.

I think the shit ton of codiene and diazepam that I took last night helped somewhat grin. lostie I have cut down on the tramadol as it keeps me awake. That's the biggest drawback to it, it really makes me wires and the night time dose just means I am awake for hours. And, with the pain worse at night, not sleeping means I focus on it which is not good. So, I have tapered it and take 100mg MR in the daytime and top up with codeine. For some reason, it is much better at acute pain relief than tramadol for me, don't know why as tramadol converts into something like 3mg morphine per 50mg compared to 1mg morphine per 30mg codiene, so tramadol should work better confused.

Thank you all SO SO SO MUCH for helping me, once again, through another shitty bout of pain and worry, my familiar friends are always here with your support and hand holding, and I honestly don't think that mentally I would be here coping this far through this shit time without your continued support and wealth of knowledge. thanks

PavlovtheCat Sat 09-Feb-13 10:04:08

and I promise, if/when this happens again, I will be at A&E like a shot. As mentioned, it certainly won't hurt to have it recorded how much pain I am in during my acute attacks. I will not struggle on alone again waiting for the primary care route to do it's stuff as they are not working with me enough. I am just another patient same as all the others so why would I get preferential treatment? I get that, just doesn't help when I am more than a patient to me and my family.

I know what you mean but at some point you are going to have to be "selfish" and push.This is the mess our healthcare system is descending intosad .On a brighter note, I'm really glad you feel better today.Have a lovely day.There's a lot to be said for "one day at a time"grin

LostInWales Sat 09-Feb-13 11:10:54

So glad you are feeling 'better' today, I have been thinking about you all morning!

Madsometimes Sat 09-Feb-13 17:01:13

Very glad things are looking up today. I also think that A&E on a weekend or an evening/night is not going to be the best course of action (unless you absolutely cannot move even with pain killers). There will be some consultant cover for neurology, but unlikely to be the specialist that you need. You could wait for four plus hours, and end up with a junior doctor doing a pain killing injection in your back (who may or may not be competent) and then sending you home with instructions to see your GP. Apologies if I have offended junior doctors, but Pavlov is complex and needs to see someone with experience.

PeggyCarter Sat 09-Feb-13 17:20:14

Message withdrawn at poster's request.

MissEleanorLavish Sat 09-Feb-13 17:35:53

Great to hear you're feeling better - and do watch the inner thigh tingling, that was a big sign for me that the nerves were getting more & more compressed (I think it's on a different nerve distribution that the usual L5/S1 (which is more down the edge of the leg/foot) but that might be totally wrong) The size of my prolapse meant that I had to have surgery, but showing CES symptoms meant it was sooner than planned.

Mad makes a good point about out of hours care - are you going to call the consultant's secretary on Monday and see what you can do? (My old physio did that for me when it first went - and it worked - had an appointment 2 days later!)

when I was struggling in the summer a phone call from my gp got me a rheumatologist appointment.

PavlovtheCat Sat 09-Feb-13 18:04:18

joyful no, I don't think the zombie drugs are, because I have only taken two days of it, and didn't take it yesterday, because I simply cannot be groggy in the morning. I need to get up. It's just not ok to have me laying in bed every morning until I can haul my ass out of bed. Although, maybe the two days did help, we will find out tomorrow the those two days wear off. PM'd you.

PavlovtheCat Sat 09-Feb-13 18:05:15

denial my GP just says 'oh, least you are in the system they are very busy'. I called him on friday, he didn't return my call until 3:30pm when I was doing school run, and was not available when I called back.

PavlovtheCat Sat 09-Feb-13 18:08:01

I have, however, got a call from the 'assessment and referral' which is a central team who i have to speak to to arrange pain clinic appt. no such thing as emailing pain clinic, no. gp gets one of the 'girls' to type out a letter, post it, then it goes to a central system, they call me, check some things, then arrange pain clinic to offer me an appt. shock what do you reckon, 2 wks? 3? for an appt?

PavlovtheCat Sat 09-Feb-13 18:25:27

eleanor yes whole inner thigh is disc above i think? the numbness is right in the groin of thigh but is not that bad, the pain almost entirely 'through' my butt, hip, leg, deep in, and numbness is back of calf, side of foot, last two toes, heel etc. I don't think any other disc has 'gone'.

Thing is, no-one has told me anything, not even in this convo with blokey yesterday, I have not got the MRI report, just a vague hint. It's like it's a secret.

I'm afraid I wouldn't get your hopes up about pain clinic.done of the arthritis forums report several months wait for an appointment.hopefully I am wrong

worldgonecrazy Sun 10-Feb-13 07:31:13

eleanor I did a lot of work pre-op. I had aromatherapy with relaxation massage (chose a specialist familiar with back injury). So I had a certain smell associated with relaxation, positivity and healing (checked there were no contraindications with other medications). I took it easy for a week, then no lifting anything heavier than a kettle/driving for 6 weeks. I was back at work 2 weeks after the operation (had a family member to chauffeur me!)- had to get the doctor to sign me back on as I was crawling the walls at home. I know you're now post op- but maybe someone reading this pre-op will benefit from thinking about how it may help to prepare pre-op.

In hospital I was forced to stay in bed the day after the op but was up and able to go home the next day (could do stairs, etc.) when other patients were only just thinking about getting out of bed. I'm sure a huge part of this was the mental preparation done beforehand and the great support during and after the operation. I'd been told I would need at least 6 weeks off work and the medical staff were very surprised at how quickly I was up and active.

And I still remember that first tentative post-op wiggle of the hips and the sudden realisation that I was pain free for the first time in 2 years.

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