The Back Story

[Matildathecat]

Hi to all fellow back sufferers. I've been on Spooning for a while but don't really feel I fit as I'm not actually ill, just have a chronic (and permanent) back injury. So please post here, no niggle too small. We can share experiences, tips and moans!

Quick history, age 48, last year had sudden crippling back pain eventually diagnosed as disc prolapse L4/5. All conventional treatments tried and failed so had micro discectomy privately.

No progress, and much worse leg pain followed. V long story short was finally seen by second neurosurgeon who diagnosed severe scarring around the nerve root as a result of the surgery. Poor outlook for surgery but we gave it a go, so had second op with similar lack of progress and final MRI showed even worse scarring. Only option chronic pain management . Had several injections with not much effect...

So, permanently disabled, use a stick, endless drugs and a lovely blue badge. Along the way dismissed from career of 25years for ill health.

Sorry, it's a grim story, but hey, I'm ok. Not depressed, have an okish quality of life with the help of my fantastic husband and friends. I walk, albeit slowly and not far, swim a bit and can please myself. Luckily my boys are young adults.

So come along and share. Moans and groans ok, tips and recommendations welcome.

Just don't tell me to see your lovely chiropractor, I might just punch you!(wink)

sponge glad you are getting some relief and your dp is helping.

magso I don't know if you are getting any help for your sciatica? pavlov says it is a bad sign if you have it as it means your nerve is still trapped and you need to get some help with it.

sublime also as it is the build up of small things that damaged your spine, don't ignore those little things in future. Do you think your job or something like that could be affecting you? Anything you can improve like your chair, mattress even your shoes as my physio says (he hated my crocs).

Sorry so many people are having a tricky weekend. I'm using my phone so can't write much, you will be glad to hear.

Magso I have nerve pain in both legs. The left is classic sciatica type pain and the right is a patch on my thigh that feels like a burn.

Thinking of you all. Having spinal injections tomorrow so keep your fingers crossed.

Hope spinal injection goes well Matilda. Ah I know what you mean by like a burn - I had some nerve damage affecting my tongue following a wisdom tooth removal, which left half my tongue feeling like it had been scalded. It gradually reduced and I eventually got some taste back. The pain in my thigh is more like toothache - persistent, but not raw. That must be very difficult for you.

just a quick post to say good luck injection to matilda, good luck to goodness with her DS appt tomorrow, good luck everyone else who has appts tomorrow.

Welcome to those who have just joined. I will post more tomorrow. I am not yet a running hopping happy bunny, the drugs are not improving my sleep, mood or pain yet. In fact I feel thoroughly grumpy.

Positive pain free vibes to all, sorry there is a lot of pain this weekend hope it goes with this bloody horrible rain tomorrow.

Another one dropping in to basically say the same as Pavlov so....snap!

I'm hoping the side effects of my patch will wear off soon and I'll have a proper catch up.

Hope everyone has a good week ahead. Goodluck

Sublime, please don't minimise your difficulties or compare yourself. Your problems are equally difficult. I currently only have emotional problems - no pain at all as my tumour is asymptomatic.
Thank you for commenting about DH. I think you're right. My garage (double) is full to the rim of my own stuff and overwhelming - hence added to constantly. Open, shove stuff in, close, run like hell.
Bit like I use MN. Sorry!
Wishing you all a pain-free and sleep-filled night!
Xxx

Good luck for tomorrow matilda and goodness and hope you are all feeling a little better tomorrow.

sublime I really wish I had done something about my back earlier, the thing is its easy not to take it seriously and the treatment of massage and exercises seems too simple to be that urgent. But actually that pain you have now is a big warning signal to get treatment and start exercises right away before it gets much worse.

sublime you ask how to get the doctor to take you seriously and not put this back problem all on your weight as the cause. Well, imo, and not having any weight to blame, I still found it almost impossible to get the gp to act on my back pain, putting it down to muscle strain etc.

The ONLY way I found to get what I wanted was to cry. Not kidding. Cry, cry some more, talk about how fucking shit it is making life, the impact on your family, your job and that you simply cannot cope as it is, you NEED something done. And refuse to leave until a referral to either hospital or a primary care route such as back pain osteopath (my first route) is made. Tell them that you know this is not weight alone, that something is wrong and you want more than medication you want it to be checked.

And you are absolutely right to ask for the physio at the very least, or some diagnostics to check what is going on. Actually the other way I did get what I wanted, other than to cry, was to know what I wanted to happen and ask. So I said 'i need pain clinic referral' 'don't you want to wait until physio has run it's course?' 'no'. 'i want you to refer me to neurosurgeon.' 'ok'. Although by the time he got to do that, this was pushed through via physio anyway as I couldn't really move my leg.

I have mentioned before, but you probably won't be able to see the post as we talk a lot on here - your own PCT will have it's own lumbar pain management route, but they are pretty standard usual routes. It is useful to arm yourself with that information so if your GP doesn't follow that route, which it seems they are not, you can say 'i would like x to happen now as suggested by PCT guidelines'. I will find a copy of one from my area so you get an idea of what it should look like. And then I will tell you how I found it, when I remember so you can search for your own PCT route.

spongebob, the thing with back problems, is (I always talk about it being a disc as that is my own experience as is the most common reason for sciatic pain but there are other causes) if it is the disc for example, the disc will already be bulging by the time it 'goes' getting out of the car, as a result of lots of other stuff going on to cause. It is very unlikely that action caused whatever is going on, it was probably on it's way to happening anyway, and it could have been anything that actual caused it to 'go'. For example on of the things that caused my back to 'go' for the final most significant time that I didn't really recover from, was sweeping the floor, one movement, bam! But, the reality was that was the final straw for my back. So getting out of the car has pushed whatever is going on that little bit too far. Get to the doctors today.

I agree with checking red flags for caudia equina. it is, in it's own right, independent of what caused it, a medical emergency. So if suspected go straight to A&E.

magso could it be a different nerve? or transferred pain? I think the femoral nerve runs down the front of the thigh. But, as we know with pain, it doesn't always follow an exact route so could quite easily be transferred pain. I found the type of pain I get is often different in each leg, although recently I have had almost identical pain in both legs, with some additional pain in my right to boot.

this is the route that my GP took eventually and with prodding from me and physio. It took me to a specialist physio who checked me thoroughly movements, pain levels, and he requested MRI. First time it was felt that I could manage it conservatively with physio and I went back for update. By that time, another MRI was needed and he referred me direct to the neurosurgeon. It is like a hub for all with someone who knows what they are doing.

If you type in lumbar pain management [your area] it should bring up the available documents for your local hospital/PCT.

But the PCT guidelines, I will find for you.

so I finally got a doctors appointment this morning. the bus ride alone reduced me to tears.
after lots of proding and poking he decided its either a trapped nerve or the muscles.
I no have stronger drugs but he has also prescribed diazapan which im reluctant to take.

spongebob I would advise from my own experience, that if at all possible, take the diazepam. Honestly, I was so so reluctant to take it, but it is amazing at helping the muscles relax and reduce the pain. Especially if it is a muscle trapping the nerve (which it might, or might not be). What dose did you get given? I take between 2-4mg x 3 a day for two days to address my acute relapses. I swallowed my fear of addiction to them (I work with drug users and lots take much much more than that in one go, for fun!) and it was probably the best thing to do. You really don't need to take much, and not for long as it works quickly. I am not addicted! My GP now gives me 14 x 2mg tablets for my 'emergency' box when I get a flare up (they last me about 3 months or so), and I take it asap for as I said 2 days and no more. Sometimes, I only need 1 x 2mg and that sorts out the worst of the acute flare-up so you may even find after one day you are much better and can manage on the other meds alone.

It will goof you out though, but in a nice way. You might, or might not be sleepy. I feel lightheaded and quite fluffy but don't necessarily go to sleep on it, but if you do it, plan to do nothing until you know your body reacts to it.

I would also say from my own experience that GPs rarely just hand out diazepam, it's not usual to be given it in the same way as codeine or opiates, so if your GP has given them s/he beleives they will work and that is worth quite a lot in terms of diazepam presciptions.

It's completely ok to take all the higher level painkillers with the diazepam, it won't harm you, but, you will be f'ked in terms of being able to do anything which, if that is at all possible is actually really what you need right now. You are in acute phase and you need to rest as much as you can (not 100% rest, you need to move gently every few hours but that can be as simple as going to the loo). The more rest and relaxing you can do right now, the quicker the excruciating pain will subside.

And, use heat as much as you can. Or, heat/ice alternates.

Flipping out
Can't take calls from friends
Feel low
Tired
Scared
Asking surgeons' secretaries what would happen if I don't have it removed as I CAN'T FEEL ANYTHING. Nothing.
Must be someone else. Worried I have wrong surgeon. Don't feel right.

im reluctant because im a single mum of a 3 year old . I do have a BF (live seperate) but he works long hours. the stronger dose of codeine has made a huge difference. doc has said to give it a week and if no different he will refer for physio

spongebob I know how tough that is with little ones. Mine are 7.5 and 4, but my back problem started in seriousness a couple of years ago and managing a 2 year old has been tough. I have a DH, but up t recently he was a chef and worked long unsociable hours and I was so anti taking anything that wiped me out with the children around. However, we worked it that I tried it when he was around at first, and although it does make me fit for nothing, I am able to be there for the children as long as I don't have to drive/cook etc, but, tbh when I am in that much pain I can't do those things anyway. I also find that although I get to sleep better, 2mg does not knock me out, I can still hear the children and wake/deal with them at night fine, so that is mostly when I take it unless DH is around. But I do know why you are reluctant. Glad to hear that the codeine is working. Just make sure you rest as much as you can. Lots of DVDs with your LO, prepare some snacks for you both, get into bed and stay there!

goodness oh you must be feeling awful. Can you ask for confirmation of the scan just to reassure yourself that it's all correct. I can't imagine they have made an error but it might help you remember why this needs to be done. I am so sorry you have to go through this. But, before you know it, you will be on the other side and will quickly know what the outcome will be for you. I know that doesn't help. Is there anyone around to come and physically hold your hand? When does DH get back? Who is going to hospital with you? Who will be there when you wake up?

We are all going to be thinking of you and sending positive vibes your way tomorrow. Have a very Unmumsnetty [hug]

matilda how is your butt? hope the injection has worked ok, especailly given your journey tomorrow. How far are you going? It needs to be bloody far to escape this horrible weather, I am so envious. This will be the test to see how much hot weather helps you might not come back! Do post if you can when you are away.

Hope everyone else is doing ok. I am reasonable. I have felt so much better today it's unreal. And then I did pre-school run, which involved, getting dressed, driving DH to work then to pre-school, walked 50m to get DS and back again, bent down to put his coat on, drove home, walked up some stairs and now I hurt but, the leg pain has definitely eased in both legs and I now mostly have a hard deeprooted pain from my butt into my leg and foot on the right, rather than the constant stabbing pain. Which I think is better! I might have to reluctantly concede the Nortriptyline is working. Or, it might be coincidence. I think it's too early to return to work given the increase in pain after not much, so will use this week to prepare for return to work, will get up each day and get dressed for work etc, and gradually build on what I do each day.

goodness no wonder you are scared but you can do this. It would be easier in a way if it hurt or showed, but I am sure you can trust these medical professionals. Don't worry you have made the wrong choice ALL surgeons are highly trained and both of the two you had to choose from are top experts. They will certainly be invested in such an unusual case too and you are sure to get the best care.

sponge glad you have drugs now! Keep resting even if you feel a bit better once they start working. They like you to move round but don't do anything that hurts at all. I took diazapam it does make you dozy, but I think it would be ok for night times, it won't stop you waking up if needed.

pavlov glad you are a bit better, hope the nortriptaline is working. I know in one way it would be nice to tell that old cow her drugs are rubbish! But if the Amytriptaline helped but didn't agree with you perhaps this may work. But we still hate her for being a patronising witch

goodness I so agree with live you have the top surgeon involved, and they will work their damndest to get this done as simply as possible for you.

goodness, bloody hell of course you are in fight or flight mode. Just keep breathing. Post here if you want to vent. We get it. When I was waiting for my second surgery I was petrified. Everyone was expecting me to be pleased as they thought I'd get better. I kind of knew I wouldn't and it felt wrong. It wasn't the wrong thing to do but I kind of know how you feel even if only about 1%. But this thread doesn't do suffering competition so say whatever you like.

spongebob, agree re diazepam! it helps. Thing is when you injur your back ie disc prolapse, the muscles go into spasm to protect the injury. The spasm is as painful as the injury. So relaxing the muscles really makes sense. You really won't become addicted to 'mother's little helpers' in a few days.

pavlov glad you're feeling a bit better. It's so impossible to tell what has helped sometimes...the new drug, injection, extra rest etc. it's so complicated. Glad you are taking the time off. When is your f*ing consultant review?! It's scandalous you still haven't heard.

I had the injection this morning. Joining the rush hour traffic into London is such a joy. When I got there, late, I found that the nice consultant who had made a plan has left. New guy disagreed with his plan which was to inject multiple spots ie carpet bombing my back. He wants to do each one separately and has started with the sacro iliac joint. It hurt quite a bit and my leg and butt feels kind of numb but still hurts. Time, give it time. Sigh.

While I was there I wanted to know if the consultant who left had answered the ATOS enquiry re my ill health retirement application, but the nurses were too busy to open my notes to check. Another sigh.

Nearly finished packing. Quite ready to leave these shores for a while. Not so sure about the 12 hour flight . I will be heading off about the same time as goodness. I will be thinking of her and know a lot of others will be, too.

Tonight's dilemma:
Need an empty bowel but neeeeed to comfort eat. What to do?!
;(

Eat! You need nutrition. You can help things by making sure you aren't constipated, so try to make sure you have a poo tomorrow if you possibly can. Have a lovely meal and enjoy it. I'm assuming you are allowed food tomorrow,too if op not until 6? Go ahead but take a laxative tonight if in doubt.x

Yes eat!! As already said by matilda you can help ensure you are not blocked, and, if your surgery is late, they cannot possibly expect you to not eat before then, from now. And, they will be able to talk about your 'bowels' with you tomorrow and if necessary, 'help you along' so eat away!!! Is it chocolate? I need chocolate. I have none.

matilda is there space for a little one in your suitcase? Not sure squeezed in for a 12 hour flight will be good for the spine but the heat will help at the other end Called consultant's secretary. He has now, apparantly, definitely looked at the MRI. She has not as yet receieved any dictation from him, he will be passing it to her tomorrow. Tomorrow, tomorrow always fecking tomorrow. I shall take this as an indication that he is going to discharge me, or else he would have some bloody sense of timekeeping surely?

I have two poorly children. I am expecting DD to make a miraculous recovery tomorrow as she is going to her friend's house after school in fairness she is a bit poorly with a cough etc but nothing else too horrendous. She has taken advantage, once again of DH not being here. Oh you know what? I have no energy to fight it, they can just sleep here.

I need some quite important advice about shoes. This is also one for anyone else looking for some lovely cheap trainers. I happen to have stumbled upon oops Debenhams Sale again twice this week already and see they have an epic sale on trainers. Now, I confess I only bought new trainers recently, post op, but, they were cheap quality (ok enough though) and 'desperation' trainers as I couldn't wear any of my shoes.

I have seen two pairs of trainers that I absolutely need and I can't decide which ones. They had an awesome pink pair and DH was then pleased they didn't have them in my size. They don't have an awful lot in my size, which is good as otherwise I would have spent too much too late already

Which ones:
these ones
or these

Wow that is a great deal! You seem to have put the blue slim ones up twice. They look really nice. Am just going to have a look if they have anything suitable for me, its difficult as I have really fat wide feet and hard to find shoes to fit.

Thank you. I've eaten barley soup
DS has been a little xxxxx shit tonight. Worse than ever. Can't see it's related to me going in tomorrow as seems surprised when I said it was a shame that he was being naughty when I'll not be home for a week from tomorrow.

It's getting me down. So pusses off with him as I feel so low as it is.