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)

Evening all, back home after an internet free hospital. :(

Well I was in surgery for 4.5 hours in the end (they had scheduled 1.48 I was told) and fucking hell it hurts.

You lot will know what this means - a double lactetomy (sp?) and major decompression. As far as I can translate this means "yeouch, you is going to be hobblin' for a while yet gurl"

The surgeon was v.chipper and I came out on Sunday lunchtime having had the op on Thursday am. I probably should have stayed in longer but I missed the dc too much - they weren't even allowed in to visit.

My mum has been great, really great. Although she wants me to come off the tramadol right now because it didn't help her and therefore is a Bad Thing I did try but am going back on it again - withdrawal and pain is not a nice combination. :o

I am going to try bed in a minute - not v.successful at the sleeping stuff at the moment. Oh and have taken senokot to assist with the pooing action!

Love and good sleeping vibes to all xxxx

Did you stamp your feet and shout it's not fair Pavlov? I never do that (well not the stamp the feet bit, I'm too scared I'll hurt myself )

Back surgery? Wow, you rock. Now go and lie down!

scone wow you are doing well to be home so early! Be careful though. I think you need to take all the drugs you find helpful for now and then taper them off very slowly once you are starting to feel less pain. You can ask the GP about that, Matilda has been trying a slow released tramadol I believe, that is another option if you will be on it for a while. Dont forget you should really be in hospital. So take it easy.

Mmm hot chocolate with chocolate spoon to stir it.

Hi to all
I have been lurking with interest on this thread.
I have been diagnosed as having scoliosis of the mid spine area and am basically on a watch list every three months now with anti inflammatory es and tramodol for the pain .
I note that someone mentioned microwave wheat bags, just remembered I bought one for my neck but have disposed of the instructions, how long in the microwave?
Sending positive thoughts to those in hospital and recovering from surgery.

Costababe the microwave bag takes between 1 to 2 mins depending on how big it is. I love them and now I am thinking of it am off to nuke mine.

costa should have said hi first! Do help yourself to a chocolate spoon btw .

Thanks for that.live
Wishing you all a good day.
Off to try standing whilst at the computer more today. Like I said been lurking on here for a week now watching for tips!!

scone, hi! I've had similar surgery and recently got to read my operation notes which refer to ' opening lamina with the high speed drill'. Jeez, no wonder it hurt to f* ing much. We drift off to sleep for surgery but actually the surgery is pretty brutal and severe pain is inevitable and it doesn't just go away all that quickly.

All of the above is not mentioned in any pre op advice. I've just sent a very bossy pm to goodness, I might paste it here if it's of any use at all. Going home, is, in my view, the hard bit. Sore, scared and alone ( well no nurses etc). Feeling that somehow being home means all is well and you should be suddenly better.

No, it's not like that and nobody ever tells you.

Take care. Hope you slept.

pavlov, noooo! hair disasters are bad. Do hope it's soon fixed and you get another do free after the repair job. Hope work ok and not too dreadfully exhausting.

Hello everyone else. It's late afternoon here and I'm waiting for my codeine to kick in properly. Happy days.

Yesterday was incredibly busy. No rest for the wicked in hospital. Lol
Ups n downs. Can't say I didn't cry a couple of times yesterday (exhaustion after walking in corridor and having had no sleep - pain every 30 mins). But rest of the time I was v happy with visitors galore and seeing such amazing progress in my Ealing. Even climbed the fake stairs (all 3!). Lol
I'm being released discharged today after 8 days in hospital and feel sad. Yes - sad. I'm going home to little sympathy and a lot of effort (not easy with DS or... Thjngs aren't easy). Dreading it but hope it'll be easier and more pleasant than I fear. I'm afraid of waking in the night in pain, being in charge of my medication with addiction issues. Although these have never been with drugs (food), I know I'm susceptible and I'm scared. I'm scared of waking every 30 mins in pain as DH tells me that HE couldn't tolerate this as he'll need to sleep to take DCs to school/ nursery or to go to work!
I'm worried about getting to the right Physio. Doing the exercises properly, arguing with DH. Overdoing it without realising that I am. I'm just worried.

Oh Goodness, release without parole! Well done on getting up the physio's stairs that's brilliant. I have a very addictive personality and was very reluctant to start tramadol but I have found that because it seems to be all mopped up with dealing with the pain not giving me a high I would drop it tomorrow if I could. Actually I would be overjoyed to never take another pill in my life.

I am in awe of all of you who have come through operations, I am being a wuss because where they injected local anaesthetic on Monday is a bit sore . I am oddly pleased that I can't be mended by the carpenters surgeons and their meccano.

Brrrrr, hope the nice engineer comes to mend the heating soon though, wheatbags and whippets aren't really cutting it this morning!

hello everyone, healing vibes to scone and goodness. remember you are not taking the drugs for a bit of an ache, you have had bits of your back cut open, man handled, removed and put back together.take the drugs.

I'm really struggling today.Sat at my desk nearly in tears.Zero motivation.Loads and loads of work to do. so sick of being perpetually sore tired and worn down.and I only have a desk job!! I only have to get to half term without sick leave then a bit of a rest i have parental leave booked.I seem to lurch from one "break" to the next barely coping. sorry for the whinge just needed to get that out.

goodness that is nice to go home but I can see why you are worried. I know your dh sounds a bit wrong to say he can handle being woken up but I expect he feels you should be in hospital a bit longer, rather than being uncaring. I think in the past you would have been in for longer, in my mind someone who has had major surgery on their spine would be in for months! So probably your dh thinks the same way, and was expecting you to be in until you were more fully recovered. But although there are some drawbacks, I think being in your own home will be more relaxing and that can aid recovery a lot.

About drugs I have quite an addictive personality, but I have had no problems with codeine. I used to take solpadeine a lot when I was younger, for bad period pain and never had any problems with that. I don't really get a buzz from it, when I was in college we went on a trip abroad and I had a huge pack of it, which you could buy then. I couldn't understand why some people kept asking to borrow them, I thought they were drinking in the evenings and had hangovers. later I realised some people like the buzz from codeine itself. So perhaps that is something to watch for, if you find you are enjoying the drugs rather than taking them for pain relief only, you are more likely to get addicted. So if any of them affect you like that it may be possible to switch to a different kind, rather than trying to do without.

denial gentle ones of course. I hate that lurching through the day to the end feeling at work, due to pain. I hope you get some rest soon. And don't minimise your work, a desk job is actually really really shit for a ad back, and sitting decompressed the spine/discs, and places maximum load on them. So, maybe not using a ton of calories but very very hard on the spine.

scone Yey! We have heard from you! it was so traumatic and you are in a lot of pain. The you had was major and matilda is right that there is some assumption that once home, recovery is almost done, but it's just the start. My advice from my own experience is, Do Not Rush your recovery.

goodness is your DH always such a selfish jerk? Honestly you have had horrendous surgery, you are in need of huge amounts of tlc, he needs to bloody grin and bear it. This is another instance where our Pain Transfer Device for those who need to know what it's like comes in. He would benefit greatly from being plugged into it

costa welcome!

Back to work, burst into tears in meeting with boss as he finally gets it I think. He has stopped looking at how my work is being affected as the only consideration (granted from his point of view, it is a n important one) has demonstrated some actual compassion. Although he said he really cans emphasise as his granny has almost the same problem. Now, that made me feel old. Sitting is really really not a good position to be in, and leg pain has increased significantly in right leg, less in left, but that has numb toes. Still no report from consultant. No hydrotherapy appt from pain clinic, no pain clinic appt. nothing, ffs.

denial and pavlov sorry to hear things are hard today. I agree sitting all day is a killer if you have a bad back. In this book I am reading Back Pain for Dummies they say it is harder on your back than standing, or even lifting. Sending you both healing vibes and chocolate (green and blacks).

Its good your boss is being more understanding Pavlov. I hope that continues. Do you find a warm bath helpful btw? I don't really find it does much but if it does help you that's a good sign that hydrotherapy might be useful if you ever do get an appt.

Have just been to the carvery andhad a huge roast dinner (its dh's birthday) and am now stuffed. Dh and dd have both gone to sleep. We may get round to our roulade later.

live you have got to eat the roulade my mouth waters everytime you mention it another day down, not long until bedtime.

Pavlov glad you survived first (of hopefully many) days back at work. I've been thinking about your transfer situation.I think you will need really quite expert advice. People have only just got their head around tupe and this sounds different. Isn't the idea of these public private transfers that your existing rights "should" be protected for as period of time?? I hate this rush to privatize everything.

Sympathy for those in pain today, whether working or recovering from injections or major surgery.
Take care both scone and Goodness. Its standard now to let people out of hospital once the need for intensive nursing/medication/therapy is mostly over but as others have said take things really slowly. Patients are sent home very early now so that they can recover in their own beds with family to do the caring side! So I hope that is where you both are. In bed! Its a pity family are not told this, I think it would be much better for everyone if it was spelt out. Hope your DHs have managed to get some time off. I found it helpful to have a tick list to record times and doses of meds when I first came out of hospital still very vague, alongside a thermos of tea, and a covered plate of sandwiches, as Dh had to go to work. Fortunately ds was at school.

magso yes I so agree to having easily accessible snacks and regular supplies of drinks. Books to read, iPad charger ready and whenever you nap, DH charges it for you. I really hope your other halves step up to the mark now when you need them too scone and goodness. goodness do you have a proddy stick, so when your DH complains you can prod him with it? That might be something to invest in

Work wasn't really that bad. I mean, I had increased pain but I always knew that. And I always start on the lowest dose of meds to see how I manage so tomorrow I will increase them. Lights are really bright and it's all very loud, not sure how much of that is the Nortriptyline and how much is due to being off for 3 weeks, don't remember that after 8 weeks off! I don't know why my boss is suddenly so nice, and it's not like it feels fake, he was quite keen to check out how I was emotionally, he even used that word! I almost fell on the floor I wonder if he has actually spoke to his gran who put him straight on few things He told me to stop stressing about not being able to pull my weight, swings and roundabouts in a team he said, he said that I was unwell and needed to concentrate on my health not others. Again, I nearly fell on the floor. I wonder if, now fate has been sealed re our jobs etc, he has nothing to prove to his seniors in order to protect his own future. What his future holds and seems more relaxed now. Mad. I almost wish he wasn't so nice as sympathy makes me cry, when someone actually appears to understand and then they are sympathetic, I just feel the tears coming. Why is that?! But then, I have been quite tearful a lot the last few weeks, they just sort of flow out without much effort.

denial I think from what I can understand is that COSOP is a version of TUPE that is used when employees transfer from public to private, rather than from private to private, which TUPE covers. It's something to do with pension protection, but I don't know how my pension is going to be protected. It's all still so vague. The unions appear to have gone quiet, so not sure how much help they are going to be. They have either accepted they are beat/giving in or they are planning something (I suspect the former). I am actually not worried about the transfer. I just want to know how to protect my disability status. I completely agree with what goodness said upthread about this being my future, and it is happening for a reason. So, if I do find myself without this job in the future, I am ok with that. I know I have tried, and that it has run it's course. I do think sometimes it's difficult to make a decision to change track and sometimes it's hand has to be forced and that is where i feel I am at. I feel at a cross roads in my life, in a way I never have before. I feel unsettled but ready to make some decisions, just not sure what yet! This is an opportunity not a loss!

I have been to the gym! It was harder today, hurt more but bloody hell I do love a bit of sweaty workout! I think I might become addicted to it I did 40 mins on the cross trainer, covering 5km! Go Me! Then swam 8 lengths (baby ones) and did 15 mins in the steam room. I now hurt a lot, partly in a good way, partly in a I Might Have Overdone It again way. I have just had lasagne and a HUGE salad, so I have room and enough halo points for some of lives roulade

Sorry. I proper wittered on there

denial and the rush to privatise is so that the Tory government can put in place as much of it's ideology as it can before the next election, it's legacy if you like. It's being rushed along as Labour have said if it is not embedded by the next election and the conservatives lose, they will reverse the decision, however if/when the bids for contracts have been decided (and possibly if/when staff have formally transferred to private 'holding' company, for which we have received notification of) then won't be able to undo it. Contracts are set to be given to the winning bidders in, it was Summer 2014, then Autumn it's now more likely winter 2014/2015. They are cutting it fine.

There you, go nice little bit of politics on a wednesday night to go with the chocolate roulade

I have a problem.

DH is out. I am in bed. My hot water bottle is next to me. Cold. AIBU to call DH and ask him to come home and sort it out for me seeing as I can actually feel my muscles seizing up as we speak?

LostinWales - 'carpenters' lololololo

Here's my FB friends' group post. Not the energy to repeat. Apology and warning: it's blummin long and boring! Feel free to skip or read executive summary at end ;)

I am on a LOT of medication.

I'll post at the end of this thread my daily menu of drugs and you'll get a glimpse.

I arrived home (had to stop car to take emergency painkillers but fine other than that) and was anxious to pop in to doctor's surgery en route. My objective was to ensure that the tablets (the majorly important nerve pain ones) don't run out on Sunday, leaving me with nothing to take from early Monday morning. They're on,y prescribed for 5 day periods as they're 'high controlled drugs' (addictive).

Sorted. Felt very organised. Until I realised that the hospital had discharged me with NO PRESCRIPTION for the ONLY quick acting nerve pain drug that I have - which also is the one to top me off (complete with jitters) and LET ME SLEEP fir 5+ hours vs being woken in pain that increases severely and rapidly every 20-30 minutes. This does not lend itself particularly well to getting any form of sleep.

It is going to run out in TWO DAYS. The doctor, if he HAD the prescription sheet from hospital, wild take a minimum of 24 hours to process it in readiness for the pharmacy to dispense. The pharmacy do not stock these drugs and would need to order them in once they have RECEIVED the prescription from the doctor. It will not happen in two days. This is why they ought to have sent me home with 5 days' worth of it and ... have it listed along with the page-long list of others.

I called the hospital to explain and politely ask for/ demand that they provide more than two days' worth of this drug AND put it on the list of those for the doctor to prescribe.
"You've been discharged now, so you'll have to go to your GP."

I stated clearly that this was their responsibility and absolutely impossible. Nothing. They told me they'd get the General Manager call me back. He has not.

Silly error on their part? Possibly. The drug omitted from the list to pass onto the doctor has the same name as a slow-release version. There are two slow-release ones in different doses to make the required 15mg (a 10 and a 5mg).

I'm sure that I've 'lost' mist of you by now.

In short: no medication after Friday to allow me to have pain relief or to sleep. And no prescription even for the slow-release one beyond 5 days. J

It's a MAJOR error.

But NOT THE FIRST today.

A bag of drugs was eventually brought to me. I asked, overwhelmed, whether they'd explain what to take and when - which were optional and which were important. Veronica (Senior Nurse) did do so. I do love her!
On going through it, it occurred to me that she'd not mentioned the names of the two/ three nerve pain meds. I raised this and she agreed... they were missing.
What if I (yes, I) hadn't noticed this? Oh my gd. I've experienced this pain and ...

It was rectified but they'd only put one of the nerve pain drugs on the amended list for doc. and packed me off with insufficient quantities. The 5 day ones were going to end in a Sunday. It's Thursday tomorrow, so unless wonders had been worked, nothing would have happened in time for me to have medication.

Anyway, I've been busy. Still no call from the hospital. Once discharged, that is it. Find your own physio and pain team, too.

I AM EXHAUSTED. And angry.
Again, I ask myself:
'What DO people who are shy, old, young, unaware, drugged up' DO?'
I both fear and feel for them.

My daily menu of medication:
(IF NEEDED. Up to 4 x a day (every 2 hours LEAVE ONE for night) oxynorm. Already charted)

*On empty stomach as wake: 1x Omeprazole
8am.
Gabapentin x 1.
Paracetamol x 2
Thyroxine x1
Oxycodone x1
Movicol x1 or 2 sachets
AFTER Banana. 1x ibroprufen

12pm
Paracetamol x 2
Movicol 1 or 2 sachets

After lunch:
1x ibroprufen

2pm Gabapentin x 1
Docusate-sodium x 2 caps

8pm
Oxycodone x1 MISSING from Saturday!!!!!!!!!!!!!!!
Paracetamol x 2. MISSING COMPLETELY
Replace: Wednesday 8am oxycodone 5+10
Replace: Wednesday 8pm 10pm ALL.

10pm
Gabapentin x 1
Amatriptyline x1
Paracetamol x 2
Docusate-sodium x 2 caps
Senna x 2
After banana. 1x ibroprufen

Just before sleep:
Oxynorm x 1

Could your family ask the local pharmacist to order in the meds you need quickly but that they don't usually stock so that once the prescription is written out there is no further delay. I do this regularly for one of ds meds as we are only given 30 days at a time and with waits at the GP can mean there simply is not time to wait for meds to arrive as well. Some pharmacist will deliver which may help.

Yes. That's exactly what I did today. I'm becoming so much more on the ball and quick thinking/ thinking ahead. Where I've gone backwards in sine aspects, my brain's gone forward

Think my mum has a plan. She's sourced a friendly pharmaceutical.