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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!

Erebus Wed 06-Feb-13 21:53:16

God, how horrible for you. Low back pain is an absolute bastard.

Is there any point t all in going back to your GP and demanding an emergency appointment with the neuro people? Lay it on real thick- god, you'd not by lying, would you? Take DH along to be 'firm'?

And people do front up in A&E all the time with LBP, especially when it is life-alteringly excruciating- maybe a 'way in'?

Sorry I can't offer real help, only my real, heartfelt sympathy. It's no way to live at all.

IndigoBarbie Wed 06-Feb-13 22:09:09

Pav, so sorry this is short. Please please google 'structural integration' it's a Rolfing technique. I'll be back with a proper answer soon. It's a really heavy duty bodywork but allows your body it's own internal space, balancing out muscles, tendons and fascia. I had serious weaknesses and numbness spd/ sciatica and pubic bone problems and this stuff helped me big time. Anything is worth a shot xxxx sending healing vibes for you xx

PavlovtheCat Wed 06-Feb-13 22:48:22

indigo I think you mentioned rolfing before, I am sure I looked at it, have no idea why I didn't act on it. I will go take a look in a second, thank you so much for that.

erebus my gp knows. I saw him on friday, with a crutch, which I have tried to avoid. He told me he knows. He told me I have been the most 'conscientious' back pain sufferer he knows and that it is now time to have surgery. He said he is absolutely sure it is the disc and not for example facet joint (suggested by physio as a vague possibility) and he said I need to press with the neurosurgeon, as he will try to talk me out of it, and rightly so for many people (his words) but he said this has to be done now. He told me he could see I was not living a normal life. He also said they are hugely over demanded at the neurosurgery team atm.

A mum at school run, her husband is a doctor, not sure what he does, but suspect surgery of some kind, I say hi but not much else as he is not often there but his mum and I get on, kids have had play time at each others houses - he asked my DH how I was, and if we knew what was wrong with my back as it looked to him like it was disc related due to how I was walking. He then said there were only two surgeons available hence the long wait.

PavlovtheCat Wed 06-Feb-13 22:50:32

Oh I have not read fully but seen it is a Bowen technique. I have been looking for a Bowen therapist in my area actually, as I am hearing a lot of good stuff about it. Typically, another school mum is training in it, almost qualified, moved to Germany. How dare she!

Toughasoldboots Wed 06-Feb-13 22:52:47

Pavlov, I know that I have always been pro surgery right from the start of your pain but I really think that it needs to be done ASAP if you are getting numbness. I don't know if you remember but I got a private MRI done and took myself to A&E. I was operated on that night.
Are you keeping an eye out for signs of cauda equina?

Go to A&E - really.

PavlovtheCat Wed 06-Feb-13 23:10:41

tough I had numbness since Aug, proper numbness, I got DH to stab my calf with a knife (not hard, like actual stab, just a prod!) couldnt feel it, I have two numb toes permanently, and numb patches on the side of my foot and calf, sometimes it is worse than others. The spinal pathway clinical guy knows this. My GP knows this. and the female, she told me 'some people just accept numbness rather than go through surgery which might not work'.

I am telling people how I am, my symptoms, they are checking, agreeing, and doing nothing.

I have talked with DH about going private, but the consultant fee is £300 and we just can't do that right now, with a falling down wall in our kitchen which is going to cost an arm (or maybe my left leg!). But, we are working on it.

I almost went to A&E today, as it was not that the pain was worse, it's just there is no let up. I can't lay flat, as if I do my whole leg goes pins/needles and numb at the same time. I am worried they will just laugh at me for being a timewaster and chuck me out in tears

Checking for CAS regularly, no symptoms.

PavlovtheCat Wed 06-Feb-13 23:10:57

CES, sorry.

PavlovtheCat Wed 06-Feb-13 23:13:17

tough isnt' it funny (or maybe not funny haha) that, right at the beginning of this last year, you and other posters who have had experiences of disc problems said this is what was needed, you pretty much diagnosed me and it has taken the medical route over a year now to get me to the place you said I should be and to actually agree it needs doing.

PavlovtheCat Wed 06-Feb-13 23:15:13

tough with my MRI results, if I go to A&E will they have access to them? If I am on the consultant waiting list, will he come to see me if I am admitted?

I don't even know what the report says, I have not seen it, just a note form letter informing my GP that I have been referred to neurosurgeon for further discussion and a little of what the MRI hinted at.

Toughasoldboots Wed 06-Feb-13 23:18:24

Yes sad not that it makes it any better.
I still would try A&E though, my biggest symptom was loss of reflex in my foot and numbness. I am puzzled at the response to you as I didn't have any other symptoms. I was mucked around for a year though too.

timidviper Wed 06-Feb-13 23:19:30

Pavlov I'm so sorry this is so bad for you. Just wanted to say take any drugs they will give you, you may feel like a zombie at first but that does pass, the sedative effects usually wear off after a short while. Good luck

Toughasoldboots Wed 06-Feb-13 23:21:37

Sorry, X posts. When I took myself to A&E, they managed to get hold of the MRI from the private hospital. This was 10pm at night, so must be doable.
Then they sent me up to London by ambulance, I think there is a pool of available emergency beds. I was sent to London Neuro hospital.
They didn't have access to any other records, it was all done by symptoms and MRI.

PavlovtheCat Wed 06-Feb-13 23:29:19

Is the foot reflex the planter reflex? Apparantly there is weakness. I can move my foot ok, it just hurts. The numbness is not all over the foot, just in smatterings. It's just the pain I can't cope with. If it was numb all over I could probably bear it!

It's like they are going 'no nerve entrapment, no nerve entrapment, possible nerve entrapment, but try this, oh, ok, now there appears to be nerve damage, going to need surgery, got to wait a year for it.'

It's not like they have not been aware. I saw the normal physio in Aug who was so worried about my symptoms she called in her boss who sped me into spinal pathway team for urgent assessment, and then it has gone dead in the water - he gave me intense physio exercises, because 'no surgery is going to work if you are not standing straight, that in itself will disable you'. He said it was going to bloody hurt, but do it - that was the Cobra exercise where you do a push up basically while keeping your legs and hips/stomach on the floor, arching your spine backwards (in case you don't know). Yes, a wonderful back strengthening technique, but NOT in acute phase! He knew it was going to be a problem as he said to come back in two months (which was actually 4 months).

I wonder if I could call him and tell him it has got worse quickly? He is the spinal assessment team after all, maybe he can see me again?

PavlovtheCat Wed 06-Feb-13 23:32:13

timid but I can't function on them. I have two young children and a DH who works very random shifts often starting as the school run home starts. And job.

I have an arm of drugs here, but I just can't take them all. DH is working at 9am tomorrow so I have to be able to get up, drop him off at work before school run, then have toddler with me.

What works the best is diazepam. I have a bucket of the stuff. it's not doeable with the children. The only way I can do it is if DH takes a week off work. I don't think he has the leave to do so.

Toughasoldboots Wed 06-Feb-13 23:35:08

Yes, plantar reflex. This makes me so sad and cross, just like I was , putting up with it, dutifully doing the physio and struggling on with pain and looking after children.
My physio was concerned too and referred me back but nothing was done.
You could try your consultant again , worth a go I suppose. I am just wondering if A&E might be a quicker route.

PavlovtheCat Wed 06-Feb-13 23:35:41

I took amytriptiline for 5 weeks and side effects were so bad GP told me to stop driving and notify my insurance company! shock that's 5 wks I can't do that long again.

But, regardless of whether I can or not, I have to try the pregabalin.

I bought a pill wallet today, and have put all the pills in the sections for the next 7 days (it has 4 sections per day) and bloody hell I am taking a lot and that is without the additional painkillers and diazepam! It's a great wallet though, has a little card with dose/frequency to fill out, and you can take out one day's section if you are out and about. It's in a leather effect wallet to store it without it looking hugely like a pill holder.

Toughasoldboots Wed 06-Feb-13 23:37:10

grin I have an attractive card one that the pharmacist delivers. I feel about 90.

PavlovtheCat Wed 06-Feb-13 23:37:55

so, yes then, confirmed plantar reflex weakness in left foot and something else relating to what I believe to be numbness, but using fancy words.

I think A&E will be quicker too. I simply cannot go on like this any more. It has got worse and worse and worse and the good days are less and less.

PavlovtheCat Wed 06-Feb-13 23:40:13

sad isn't it? I was looking at some pretty pill holders, so that I can be all glam as I pop my pills at work, with my swarzky (sp) crystal and silver pot.

And I am going to a wedding in March, and discussed with DH today that I should accessorise the dress by getting a nice stick or some new crutches as grey won't go grin oh dear.

How are you doing after your surgery, how long ago was it now? and are you in a better place pain wise because of it?

Toughasoldboots Thu 07-Feb-13 00:03:50

My surgery was 2011 , I had three lots within two months. The pain relief was amazing but I have some scar tissue which causes pain now. I think that is one of the biggest drawbacks of surgery.
I have permanent drop foot which is attractive but it could have been much worse. I have to say that I am quite bitter about the way that my old GP treated me and I did write to him afterwards to let him know what happened.
I was due to go back to work and had to give it up as a result of the back pain. I really hope that you get somewhere soon with yours, it's so miserable and I think that you have been so patient.

DontEvenThinkAboutIt Thu 07-Feb-13 00:11:07

No advice but just wanted to say you have my sympathy. What a bloody pain, literally. Hope someone gives you some useful info.

thanks wine. Etc

PavlovtheCat Thu 07-Feb-13 00:14:10

tough my gp said he 'admired' how I have held myself and managed, 'conscientious' he called me, that means I have not kicked up enough of a stink I suspect. I see both GPs, they are both supportive now, but only as they have seen the rapid deterioration of my physical health and now probably my emotional health is not so great due to it, but to start with they were very much of a mind to just drug me up and send me on my way. It's all a bit too late and they are not pushy enough for me.

PavlovtheCat Thu 07-Feb-13 00:15:46

thank you dont, bloody hell I would love a glass of wine. Or, rather, I would love to want a glass of wine. I don't even like it any more. and THAT is bad. I used to love a glass of wine after the kids settled to sleep. Now, as well as it being not great on my cocktail of drugs, I just don't want it. and that makes me quite sad.!

Toughasoldboots Thu 07-Feb-13 00:19:18

You are probably depressed as hell, anyone would be. Hope you get some sleep, if not, go and cry in A&E or up your game to GP.

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