The Back Story Continues

[Matildathecat]

This is the support thread for all sufferers of back pain. Everyone most welcome to join.

Here's our first thread

www.mumsnet.com/Talk/general_health/1871592-The-Back-Story

My story long and grim but basically had failed surgery for disc prolapse, then further failed surgery to attempt to salvage the situation. I have nerve root damage and severe scarring around the nerve at L5 which won't get better. I'm 48, can't work, take a lot of drugs and have a blue badge. Currently battling several different agencies for ill health retirement and other benefits.

But I'm ok, having some fun despite the pain and have made some lovely friends on here.

Please post and include your story if you'd like to. No niggles too small, this is strictly non competitive!

Loon, welcome! Good name
I have absolutely zero help or advice to offer on the 'what might be offered front. But best not to mention the long walks and to tailor your description to your worst days and the limits on your daily functioning and tasks, when you see neuro guy?
What do the others think? They now more than me. I'm v new to all this.

Hope work was okay, Pavlov. Gonna make ya reeeeal jealous: I work from home... in my pyjamas.

Good idea, Goodness. Though I should say I can't walk 5 miles in one go - I wear a pedometer & that was my total over the whole of yesterday! More than 20 mins. or so at a time & I'm really struggling.

loon hi! sorry you are in a lot of pain, good that you are active though. neuro options, given what you have said will probably be to suggest discectomy, to remove the prolapsed bit of the disc. Or, given that the disc is screwed and probably why you have arthritis may offer fusion. I would, personally, ask for steroid injections to try and alleviate the pain in legs. In terms of the surgery, it depends on what is offered, and how much you can bear the pain as the alternative. The surgery is only aimed at targeting the leg pain, although I believe it can help the arthritic pain if due to the disc, as it will stabilise the vertebrae and stop rubbing of the bone. But, I think, you need to think about the least evasive outcome you wish to consider. Surgery of the spine carries risks, takes a long time to recover from and can sometimes be fabulous if it's a discectomy (it worked well for me for some aspects of my problem) or it can go horribly wrong (matilda is the evidence of that). The injections offer some temporary relief and may be worth exploring if you are able to remain mobile, to address the pain side of it. Unfortunately, with backs there is not usually a clear solution like 'this is what we must do' it's all laws of probability and weighing up the costs/risks versus where you are now and how much you can continue as you are, which, sounds like you are doing brilliantly, but at some considerable cost to you.

we find this is a very useful medicine along with decent osteo chairs, heat pads. We also do back pain in style, with nice nails, hair, glamorous bags...

I've got my letter from the neurosurgeon. I shall write it out when I can bother to get back down the stairs. It's quite amusing in a sort of not really amusing kind of way.

I got through today. I am in a lot of pain. Just want to cry. It started with nerve pain, that meant I could not do more than pigeon step due to pain through back, butt and legs, now it's gone from being in my legs to through my entire back and my muscles have seized/are spasming.

I think my boss thinks I am rude as he smiled at me several times walking past, and I was unable to let a smile out as my face was tightlipped, I could feel my facial muscles sort of stuck and unable to move! I have to go to work tomorrow regardless as I have to recall someone to prison and it's time consuming, can't leave that to a colleague. Wanted to take children to the park after school run. Ended up coming home, in bed watching DVDs as I can't do a thing. I just have tomorrow then annual leave friday, then monday/tuesday/wed at work, then a whole week off. Hanging on by my finger nails.

goodness I am actually very of your working from home in jimjams!

Thanks Pavlov! The idea of surgery freaks me out TBH so it's good to know steroid injections might be an option. Have been offered a steroid shot for big toe osteoarthritis (have had that for years); but as that's fairly manageable most of the time I haven't needed to try it yet. I guess toes & backs are a bit different though...

Oh yes, I love heat pads. Have been bulk buying the disposable cura heat ones. Sadly wasn't doing very well on the nice nails & hair front even before the back flared up!

loon welcome. Sorry you need to be here but hope you can at least get some support and advice and quite likely give us some, too. None of us are spinal doctors, though some are medical ( myself included). We base our info on hard gained experience unfortunately.

It sounds as if you have adapted to your injury and are minimising it to some degree. You can't drive or sit down in comfort? Pain in leg, some tingling. Not normal. But. Neurosurgeons are what it says on the tin. They are assessing for surgery. My personal experience of discectomy was not good ( catastrophic ) though it can be very successful especially for leg pain. Less so for back pain.

You mention cocodamol. Now that's a good opiate based painkiller but not particularly good for nerve pain ( your leg). Other meds like gabapentin and amytriptiline are good for this. They make you sleepy but this does wear off. Anti inflammatories like naproxen are good, too. So, to get the best analgesia you probably need a combination of different drugs. If your GP hasn't offered you this kind of combining meds go back and ask if the practice has a GP who does pain control. Or, better but slower get referred to a Pain Clinic.

Injections can be very effective though may not last, it's very variable. All of us on here are addicted to heat patches and hotties and lying down! Pilates type exercises are essential as much as possible.

If I've read correctly your disc which is degenerating will eventually get so dehydrated that the pressure on the nerve at S1 should get better. The back pain, if caused by the arthritis won't but in fact a lot of the back pain we get is caused by muscular spasm. All of the above can help that.

Hope that helps a bit. Do come and chat, we are all terrible chatters! How old are your dc and do you work? No need to answer, I'm nosey!
Try to skim through a bit there's loads more that might help.

Massive cross posts with pavlov!

loon well, now is the time to start on the style. It's a requirement of managing back pain. As is internet shopping for bargains sometimes not so bargains and Good Shoes

pav I know it's not mumsnety but I'm sending you a bloody big hug (((((())))))) you are just so good about getting on with it. Hope you've cracked open the tramadol.

loon I didn't want to sound too shallow but since you've been warned, do you love shopping and gossiping? We do!

If not, don't worry. We can teach you.

goodness I have to admire you even though you are insane. Teaching all day. Um. Please, please plan the day before and after to do nothing at all. Also, great for reducing the amytriptiline last night. Now stick with that before trying to reduce anything else. You have to do it slowly. Love your attitude though .

ok so this is the letter from neurosurgeon, received today, appears to have been stuck in the post for the last 10 days...

Dear Mrs Pavlov,

I have now reviewd your most recent MRI scan and my apologies for not getting back to you sooner. I'm pleased to be able to say the appearances are much improved compared to preoperatively. There are however still some changes that may explain some leg pain, though there's certainly not a clear recurrence of the disc prolapse that existed before. It's like therefore that conservative management rather than surgical intervention would be the most appropriate way forward but if you do wish to consider surgery , then please let my secretary know and I can arrange to see you again in clinic to discuss this further'.

signed. blah blah. copy to GP.

What does that even mean ? changes? appearance improved? no clear recurrence? or. What The Actual Fuck?! oh yeah, I would like to have some unidentified surgery for some undiagnosed changes in some location in my spine that has not been identified.

I mean, who will tell me what these changes are? what conservative treatment? who decides, how will they know what treatment to offer? what surgery can i consider? why would I consider it? why should I consider it? would it be successful? why is it up to me? who would choose to have evasive spinal surgery for no reason? Does that mean it can be fixed with surgery?

Hi matilda - sorry you've had such a terrible time of it. I really don't think I want to risk a discectomy given that I can at least walk, even if it does hurt. When I'm drugged up enough I just have a tight, stretched feeling down my leg when walking, without too much actual pain.

The advice on meds. is interesting, thanks! My GP has never mentioned gabapentin or amytriptylline, but she is lovely & would probably prescribe them if I asked. Will do a bit of reading about them.

I don't just have cocodamol to hand at the moment - also have diclofenac (seemed to work better than naproxen for me) & diazepam; but I haven't been using them all at the same time. Am scared of the long-term effects of the NSAIDs (though have had omeprazole too) so I keep trying to stop taking them. I do stiffen up noticeably after a few days without them - it's bad at the moment - but I almost feel that I want to be at my worst when I see the consultant. The diazepam just makes me sleepy (even 2mg.) so I suspect I haven't taken enough for it to have an adequate muscle relaxant effect.

Yes, I need to make time to read through this thread properly now that I've found it.

And. His letter is grammatically incorrect. His sentence structure is appalling. He needs to get his secretary to address that in future.

Oh yes, matilda, love both shopping & gossiping. But it is mainly internet shopping right now- the slow walking, regular stopping & carrying aspects of "real" shopping seem to be just about the worst things for me at the moment!

Pavlov, that letter doesn't sound very helpful. Don't you even get to see your MRI reports?

loon I am a fan of diazepam for muscle spasms. That sounds quite bad doesn't it you need to take it for about 2 days solid (ie 3 times a day for 2 days) for it to work really effectively, although, I do find sometimes 2mg x 1 or 2 times and that's it is enough sometimes. I think you either take 2mg x 3 daily for 2 days, or 4mg and give up on anything else for a few hours

I find nortriptyline pretty good for nerve pain, but side effects wallop me a bit (not as much as the others mentioned by matilda) but each person reacts differently so don't rule them out for that reason, try and find out if they work for you, it takes a couple of weeks to get a good result though.

loon sorry x-posts. When I have had MRI's before I have. My GP printed it out for me once, and then when I had the second, the spinal assessment physio lead that I saw showed me it and the actual MRI scan itself. But the neuro thinks his word is enough being close to godlike and all, and he is the one that ordered it. I will ask my GP for a printout as I know he has a copy.

Pavlov, you mean you have Good Shoe advice on here too?! I could do with some of that - aforementioned arthritic toe tends to mean I spend winter in thick-soled boots & Summer in fitflop type sandals.

Refuse to care about my nails, though - I'm definitely beyond redemption there!

matilda thank you for the hug. It has made me cry a little bit I am just so fed up. I just want to lay in bed curled up in a ball, cry a bit and stay here. But, I got to smile for the children, my babies who want me to be better, who I have promised I will be better. and get on with my job seeing as they have given me a lifeline and chance to actually keep a career, or, at the very least potential access to my pension in the future if they do ever retire me on medical grounds. Talking of which, have you had any response to that, or your other applications?

well, actually, the Good Shoe advice tends to extend as far as recommending Fly Boots I think Flitflop boots have a good rep too.

Ooh, I don't think I've been taking the diazepam properly then. Have only ever taken a 2mg/ 4mg dose as a one-off at bedtime: assumed I'd be too knackered if I took it in the day.

Your neurosurgeon sounds awful - sorry you're having a crappy time too!

Pavlov,

He's saying "I'm not admitting the surgery didn't work. I recommend you go somewhere else / away / stop ringing me but if you insist I will think about doing a fusion which I probably should have done in the first place"

I think you need a new surgeon. massive hugs

Sarah Key's view on diazepam seems to be if you can talk and are not goofed out, you have not taken enough 5mg seems to be the average dose recommended by my GP won't prescribe more than 2mg. He said take 4mg if I must but he wont give me higher than the 2mg. Meanie

denial i think so too. He himself said to me at the beginning that he considered fusion as an option, that he felt he would prefer to try one lower impact surgery and go for a second more evasive surgery later as he felt disctectomy could work, rather than go straight for fusion, although he was weighing up the options between that and just one surgery. He said he felt I was young enough to recover from two surgeries if that was required, but that he was hopeful it would not be needed. He then also said he felt that fusion might be an option due to vertebral slip, but movement was not pronounced enough. And he also said, post op, as I was high as a kite that he could not get to the right side of the prolapse which he wanted to do, as it would have meant removing too much bone and that would have made the vertebrae too unstable and he would have had to fuse it. So, all in all, fusion has been a possibility. But, I don't know what changes he is talking about.

Should I see him first? listen to what he has to say, or just go straight for a different surgeon, and if so, how do I go about doing that?

I wonder if the laminectomy has de-stablised my spine anyway. It would explain the regular grating and popping that I feel and the bilateral pain. I wonder if I can ask to see the scan pictures? Will I need to do a proper request for medical info or do you think I can just ask for a copy? Do you think I should ask for my medical notes?

I just wanna be fixed. Or, close to being fixed. Or, a little bit more fixed even. Or, if not fixed, to know what's going on.