Back to Back Trouble. The Back Pain Support Thread.

[Matildathecat]

This is a support thread for people with back pain (that does not even cover the description of hell that back pain causes). It's for all types of back pain, for long term posters with chronic pain (including those on the upwards journey to recover), short term advice through tough acute episodes and all the in betweens.

We moan, winge, share successes, guide each other and hand hold through the maize of a million medical routes and options, treatments, investigations. We internet shop as a form of pain relief, drink wine, take strong painkillers, eat cake and we go through lots of heat packs!

We don't always have the answers but we do have a lot to say about it all

Here are the links to our previous threads:

www.mumsnet.com/Talk/general_health/1871592-The-Back-Story
www.mumsnet.com/Talk/general_health/1992406-The-Back-Story-Continues
www.mumsnet.com/Talk/general_health/2023274-More-Terrible-Back-Stories
www.mumsnet.com/Talk/general_health/2049637-Back-Again-Back-Pain-Support-Thread?msgid=47419209#47419209

And some other useful links and info:

www.patient.co.uk/health/cauda-equina-syndrome-leaflet

We have done the hard work for you and learned about effective drug combining. Using NSAIDs, a stomach protector, paracetamol with or without codeine (it enhances the codeine), nerve pain meds such as gabapentin and/or amytriptiline can all be more effective than simply taking huge doses of opiates. Of course most people won't need all of this but for severe prolonged back injuries this is helpful to know.

Heat, gentle exercise, TENs, medication patches, diazepam and accupuncture, we've tried them all.

So if you are suffering come and join us, were a social lot.

loon, how is your area that was injected now? any improvement??

a dural leak or something isn't it? what are you doing?! no, seriously, those things don't happen twice, it's going to work well this time.

no wonder you had a headache if they stuck this in you !!!

Wow! Everyone is going through or has had such long and stressful times with this?! It is such a headache! Thank you Matilda (sorry don't know how to tag your name!?) for your advice and links. That technique sounds really good and helpful! I am currently on 300mgx3 of gabapentin and 400mg of ibuprofen...but they are definitely wearing off. I'm speaking to my gp tomorrow to talk through the meds and recent surgeon appt. Oh the sciatic pain is something else isn't it! Could scream when it goes!! Rest up everyone! Take care xx

Denial - yikes good luck. The leaking of spinal fluid is a potential risk for surgery too. If it happens they keep me in for a few days instead of discharge after 24 hrs of whatever.

I hate hospitals as a patient or visiting with a patient, the waiting, the lack of info and its hot, dry, noisy and uncomfy. One night in the post natal ward was bad but it will be a bit better with no screaming babies in the ward I suppose.

I'm suffering from lack of medicine. I did not need to suffer as the MRI was enough. The butrans is back on with codeine and a gabapentin but it will take a while. I've read the wiki page on failed back surgery syndrome, directed from the laminectomy page :$ interesting reading. Ok I'm going to get diazepam and read more on laminectomy. Does anyone who has had one feel weird where the bone is missing? It looks scary, like the spinal canal is vulnerable.

queen felt very strange to start that some of me has been hacked off! and I do wonder if some of my deep constant pain which feels like bone pain cones from that area but after a year I forget bone has been removed.

lex sorry are are suffering. I think gabapentin for back pain can go into the thousands per day in time if needed and you can tolerate it, so don't be surprisd if the GP puts it up a little more. Good that you can manage the side effects of it.

Hi denial, hope it's all going well with the injection! Is it another epidural or a nerve root one?

Mine was the latter. No improvement, sadly - thanks for asking -but the pain / numbness I had in both legs for a couple of weeks afterwards has worn off (well, worn off in my left leg - good leg - right leg still the usual pain), so I'm not catastrophizing anymore about them having injected the wrong nerve root or damaged the nerve. It just didn't work, basically.

Sorry, denial, didn't read properly - SI & facet joint ones. Don't think there'll be any risk of a dural tap with those, will there? Good luck - though you're probably done by now...

pavlov - I actually clicked that tap link.

Queen, that whole wiki page is pretty bloody scary. I am so frightened of the idea of surgery. I need to make my mind up reasonably quickly, too - expecting to get an appointment through for my follow-up with the consultant very soon.

Was offered surgery at first appointment but opted to try injection first - no help at all. It's been over a year now so I think my chances of the disc healing are slim. It's not a central prolapse, it's bulging at both sides of the back. Definitely S1 nerve impingement. But I can walk, I'm still trying to see if the pregabalin helps, & I'm so aware of the potential of surgery to make things very much worse.

And I don't know if the consultant is intending to do a laminectomy. I came out of the appointment thinking he was just going to shave off the bulging part of the disc. DH later said consultant referred to discectomy & decompression, as if the latter was something extra - & I presume that would be laminectomy.

My knackered disc indents the thecal sac at both sides causing narrowing of both lateral recesses. So I can see the rationale of laminectomy. But it sounds riskier. Can this really be done on a day patient basis? That was what the consultant said, assuming you don't get the leakage issue (thought of which makes me want to vomit).

How are you feeling about all this, Queen? Are you raring to go surgery-wise? I can't remember if you've seen the consultant yet - I may have missed some posts.

Yes let us know how it's gone Denial, and into the future as I'm sure it will take a while to work properly. I quite liked the idea of SI injections. There are so many nerves running through that area it should help.

Loon, the numbness is a risk of surgery too so I guess any mucking around with nerves can have this effect. How long did it take to wear off?

I had my first happy cry. But I'm also terrified. I must write down all my questions and I might even see if there's a you tube video of the surgery. I am worried about the recovery and ensuring I don't do too much and have enough support. DH said yes to a cleaner. We also have builders in next week and I don't know what their schedule is but I hope there is no overlap. I want them out by the surgery time. They should be able to do it all in a week but I worry they'll do a bit and then bugger off and do a bit more a week later and so on. My dad is meant to help decorate (the builder is supposedly not great at decorating and we will save a fair amount doing it ourselves) so I can coincide this with his stay when DH is around or the kids are sleeping/at nursery.

Got to go out to get nappies - I've had to use cloth which I gave up with the back pain. Oh and munchies as we have some people over tonight.

X-posted there, I think, Queen! I had numbness for a couple of weeks, interspersed with burning sensations going down both legs into both feet.

Had absolutely no left leg symptoms before the injection, & I'm still struggling to understand how it impacted on the left leg. He was aiming specifically for the right S1 nerve root - though he couldn't locate it for ages. I had 3 puncture wounds, not 1, & there was a lot of faffing about & an increasing pile of blood stained tissues placed on a table next to me!

Didn't ask what was going on - was trying to zone out / concentrate on my breathing, as the procedure was quite uncomfortable & I wasn't sedated.

I saw the registrar yesterday - the consultant ran out while I was waiting, presumably to collect children. I was a bit sad about that but the guy I saw was great, made sure I relaxed first and I also felt less intimidated. It means he has to check with her about some stuff, like trying to bring the surgery forward.

I saw a diagram last night with the disc bulging at both sides. I think it was a laminectomy. I'll find it and link.

I wanted surgery, I knew it would be unlikely to be helped any other way after so long. But I now know I have no choice, the risk if CES is too high. That does make me feel less pressure and less like it will be my fault if it doesn't go to plan. The risks are low, I think it's 84% in one study of US soldiers who went back to unrestricted duties after the surgery. The remaining may have had a good outcome but not enough to do a physical job. It's also better sooner so I have a less good outcome as I've waited so long, but being younger also helps, so under 50 is used in some studies as a good indicator. I think the biggest risk is re herniation, the surgeon said 8%. He seemed really positive, but I'm also a proper case to get his hands on too! I'm also terrified, especially the whole anaesthetic thing. I will cry and I hope we can arrange for DH to be with me.

Right I'll find that post and I need to reapply my make up and head out.

Thanks, Queen. The consultant I saw was really positive about surgery too, seemed to think I was a fairly straightforward case. I'm nearly 43, though - didn't realize age was a factor in whether or not it's successful.

Yes, there are all sorts of factors, including things like having good disability benefits = less positive outcome (so it's partly psychological) and smoking, that was an interesting section on the failed back surgery page. I've spent far too much time reading research papers in the middle of the night. The biggest reason for failed back surgery is when surgery is actually not necessary. The UK are far more conservative about spinal surgery so probably have less cases of failure. If an NHS consultant says yes to surgery then you know it's because they think it's necessary or will have a big chance of success. Where as the US are very knife happy and will operate on backs that don't need it if they get paid, so it doesn't solve the problem.

I can't find the picture, annoying but I think it did include a laminectomy in the same way I will have to have it. I found one pic of a double bulge having facet joint injections. Is that what you had?

Re. factors influencing surgical outcomes, I read one bit of research claiming that waiting for more than 6 months for discectomy (don't know about other surgery) also led to less successful results.

Was a bit shocked by that one, as who - in the UK at least - gets to the point of surgery as soon as that, unless they've got CES.

Can see how your CES risk helps with the decision making. I really don't have that - it's the nerve roots exiting to the sides that are being impacted, particularly the right one. Consultant said there was very little space at the left, too, but I wasn't getting any left leg symptoms then - & they seem to have cleared up again now, after the post-injection flare-up.

I need to ask the consultant a lot more questions when I next see him, basically. About exactly what he's proposing to do, & about whether he thinks there's any chance of the prolapse shrinking / drying up by itself at this late stage.

He was certainly quite clear that there was no chance of the disc actually regenerating. It's had it, totally dried out, looked like a thin black worm on the MRI images. It's not doing anything useful in terms of shock absorption anymore. Other discs were fine then (MRI was last October).

loon do you think your left stuff died symptoms were from swelling.bound to Happen when poked at?

I'm back six injections, local is still working but I can feel behind it kind of? Cannot fault the care.They were also very clear that may not work at which i appreciate. the x Ray thing showed one my facet joints completely crumbled

Could be, denial, especially since it's since died down.

But SIX injections - bloody hell! You're very brave & deserve some .

Take it easy for the rest of the day, won't you? about the facet joint. So much to go wrong with sodding backs.

I've told dp I'm staying in bed and mooching.I even changed the sheets and tidied the bedroom yesterday so the mess wouldn't annoy me. I have a good book to finish and season two of Orange is the new black. got to make the best of a bad situation

Loon - I read a review of the research and it seemed a year was a big turning point - I'm nearly 2.5 yrs and that's only from the birth, it could've been there longer, I know there was something going on in 2006, so 8 years ago. A factor in deciding to operate was the time it had been there, he said if it was two weeks old they would leave it longer, but unlikely with the urinary symptoms which are significant enough to warrant emergency surgery if I hadn't had them so long. I don't know the lower limits, 6-8 weeks of conservative treatment seemed to be a popular limit but that's all in the US, where they also have the most data! You'd have to have that conservative treatment before referral and then it's about four months to get the appointment and another two for the surgery. Unless you went private of course.

I think the nerve root stuff is more painful than the CE compression. I'm not sure I have any pain from the CE, just potentially the urinary stuff. Well that's what I think. He only told me of CES symptoms being numbness and difficulty going to the loo. It was funny there was no mention at all that the surgery may not work, it was me that asked.

If the bulge hasn't gone since October I doubt it's going anywhere now :( But what a shame the disc is so degenerated. Mine was black so dehydrated but still a similar height to the others. I so wanted to take a picture of the screen. Do you think they'd let me if I see it again? My phone camera is all cracked so I didn't ask. Funny to see your insides in such detail. Did the surgeon say anything about further degeneration? I've heard about the vertebrae fusing together naturally if this happens, not sure if that is right but I was told it would be painful to have bone on bone.

I actually find it all very interesting. The surgeon jokingly offered me a neurosurgery degree because of how much I already knew. It's probably very unrealistic to retrain as a dr now and dealing with the public and dissecting dead bodies is enough to put me off. I get the impression it's a bit more 9-5 when they get to that level but training and getting to that point is not family friendly.

hmmm can I blame the meds for my even worse than usual spelling and sentence construction in my first post I'm almost giddy with relief that it's done.This may be masking a lot of ouch. My lovely cousin left me a bottle of prosecco last weekend.I shall have my two units this evening.

Oh, I love prosecco, denial - it goes to my head very quickly though!

Queen, the surgeon didn't say anything about further degeneration, but TBH I suspect that's inevitable whether or not I have surgery. There's no disc height & a bit of arthritis of the facet joints already, presumably because they're taking too much strain.

And yes, I've heard that L5 & S1 in particular can end up fusing when the disc's worn right down.

queen did the surgeon quote you different stats for getting rid of leg pain vs back pain? I'm understand leg pain is much more likely to settle.

My (gloomy) thoughts on success rates in the uk are that the number of people who continue to suffer is quite likely very underestimated. Surgeons dislike being told their work hasn't helped much so at the post op review they are very likely to offer reassurance and discharge the patient. That said patient very understandably settles for long term pain and disability to a greater or lesser degree. Not that many will go back and address this with the original surgeon, partly because they lose heart and it's difficult to get rereferred and also because the believed him/ her that the surgery was technically successful.

Feel that day surgery wouldn't have worked for me but they must do it at CXH. Remember this does not mean you are any less fragile than if you stayed in for a week. I was on a morphine pump first time and certainly an IV the second time, too. If you get to negotiate a night in do go for it.

NHNN at Queen Square does a vast amount of salvage surgery from these failed ops and this also skews their figures..

Sorry, added a paragraph which makes this read in a very random fashion
denial, fingers crossed for a good outcome. The only injection I've ever had that was a bit successful was the SIJ.

Enjoy the sun

I'm sure that's true, matilda - though I do know people who to all extents & purposes seem to have been "cured" by their ops. - all straightforward discectomies AFAIK.

The problem in my case is that it's looking increasingly likely that I'll have to settle for long term pain & a degree of disability if I don't have the discectomy. The op. seems to be my only chance of sorting this out.

If the drugs were keeping the pain at bay to the extent that I could live a reasonably normal life, I'd still have to weigh up the side-effects of taking those drugs long term. But TBH, I'd probably say no to surgery & take my chances with the drugs in that case. They're not working to that degree, though.

Part of me feels I owe it to my family to at least give the surgeon a go at fixing this. But then I don't want to risk being worse. I know noone else can make the decision for me, but I really feel I can't cope with making it myself . Not feeling very strong ATM.

Did have to make an op. decision once before - had an ear op. (mastoidectomy) to deal with mastoid disease from persistent ear infections. Was only in my early 20s & shitting myself when the surgeon said there was a chance of him accidentally severing a facial nerve, which would leave me looking like a stroke victim. But if I didn't have the op. the disease could spread & cause meningitis or even a brain tumour - so it wasn't much of a choice. And the complication risk was about 5%, lower than the risk of back surgery not working. That turned out okay but this is less clear-cut. I'm not frightened of having a GA, just everything else.

I'm really sorry, I didn't for one minute mean that most people don't have very successful outcomes. Some even totally cured. Just making the point that there are probably a lot of 'forgotten' souls who are just getting on with it but not counted as failed IYSWIM. Overall for suitable candidates it has a good success rate..