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The Back Story

999 replies

Matildathecat · 03/10/2013 16:02

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)

OP posts:
Perihelion · 29/10/2013 19:45

Got a call from the MRI dept at teatime asking me when I'd like to come in. Very apologetic they only had one slot tomorrow, so am going in Thursday....totally fucking bonkers. Last time I had an MRI I waited 4 months and as said upthread, couldn't work and was on benefits. Mind you, back then I waited almost a year to see a consultant.
Am also slightly Hmm at something he said. My reflexes are over sensitive? Anyone else had this? I thought my limbs were reacting great, to being hit, so there wasn't anything to worry about......

On the DH front, we've been together almost 20 years, so he's seen me at my best and worst. When I was really bad, he felt utterly helpless to help me, but absorbed lots of my rage ( and weirdiness on Co proxamol ). It helps that he doesn't care about the state of the house, or if tea isn't cooked and can tell when I'm sore without me spelling it out. So if he's not working will take over all parenting duties. And I've learnt that if I'm not able to do something, to butt out and let him take charge, the way he want's to do it. That took quite a while for me to master Wink

Perihelion · 29/10/2013 19:46

DH would say that I still haven't quite mastered the butting out bit!

PavlovtheCat · 29/10/2013 20:11

Grin I am not so good at the butting out bit either. I wonder what the reflexes thing means? I don't know anything about what they mean, they said mine were not responding well (weak i think they said) on my foot when I thought they were fine, so who knows how they even tell!

I waited 17wks and 5 days to see the neurosurgeon from referral, after waiting for 6 weeks for the second MRI, 6 weeks or so for first. I cannot possibly imagine seeing them more quickly - do you have private insurance then? does it cover pre-existing conditions? I have looked into private, just because I would hate for DH to suffer with something like this for so long, or for any other illness in the future, but they don't seem to cover pre-existing conditions...

Thursday is quick though Grin

PavlovtheCat · 29/10/2013 20:26

matildacat I'm so sorry you are feeling so low Sad it's a shame there is no chocolate cake left.

I am so cross with the bureaucracy that is such a barrier to people accessing support. I mean, we are intelligent well capable women who can navigate the system, yet we struggle to access support, you matilda with a profession and a career afraid to embark on the journey of form filling because it is so hard and so difficult to get something positive from. But, there are so so many people out there who ^cannot fill in these forms, who don't know their rights, who can't navigate the system and end up losing out on so much that they are entitled to because they don't understand what to do.

I worked with someone last year who had been wetting herself for a while. She dragged her foot and had back pain. she was given painkillers and sent packing, because she was also an alcoholic, so her wetting herself was because she was drunk and she staggered because she was drunk. But, those were huge reg flags for cauda equina. I pointed it out to a key worker who got her an MRI via her GP. But, she didn't know to fight before that, to ask for help, because she had learning needs (but not meeting the score for adult social worker) that meant she just did what she was told. She finally accessed the right support (but the damage to her leg and bladder was irreversible).

PavlovtheCat · 29/10/2013 20:48

I fucking hate pain Sad
I promised my boss i would be in tomorrow. well. i didn't actually promise. but as good as.

Why am I hurting so much? [argh] Fly boots and surgery would fix it, so you would think eh?

Matildathecat · 29/10/2013 20:49

Oh, yes. Private is different indeed. Oh for insurance. Think I may be uninsurable now, though. It's f*ing expensive if you self fund.

OP posts:
Perihelion · 30/10/2013 10:14

I haven't a scooby how I'm insured. It's through DH's job. We pay to have it ( a lot, nearly cancelled it for this year ). Last year when I was sore I and wanting physio, I was convinced that I wouldn't be covered, but when I phoned them, they weren't bothered that I had previous issues with my back. It may help that I've not been for my pelvis, but other bits. I imagine as it's really geared to keeping employees working ( for an American company ) that the cover is better than anything I could get as an individual.......Still quietly panic when I have to give credt card details to the private hospital in case the insurance won't pay out.
1 consultation with the neurosurgon = £320 Shock

Matildathecat · 30/10/2013 11:51

Oh yes, that's the going rate. £300 consultation, £1200 for MRI, £910 injection. End result? Nil, zero big fat nothing. Pain stays the same.

pavlov, when did you say your appointment is? Is there any way you could get your GP to get you an MRI first? Something's not right, surely?

Ladies, I will not get depressed. Just had a slow ramble in the park and god, it was beautiful. Can't do the mindfulness/ meditation CDs. Getting out in the open does it for me. (And tramadol).

It's my lovely dad's 80th birthday today. He's fitter than me! He's fantastic, though. Also have a friend's 50th dinner tonight so now resting obediently. Will get the dreaded forms done later...

Have a good day. Hope the pain is not dominating today.

OP posts:
Matildathecat · 30/10/2013 13:19

Office online, purveyor of the wonderful Fly London boots have a one day sale of 20% off plus free delivery!

Don't say I didn't tell you.

OP posts:
Perihelion · 31/10/2013 14:39

Didn't look at the Office website, have enough boots. Comfiest ones for winter I've found are Pajer Grenland ones. First pair were v expensive, then realised that I could buy them in the summer on the Amazon US website and get them delivered to Sister in law, who sends them on by slow shipping as used.
MRI done and back to the Neurosurgon in a week.

Matildathecat · 02/11/2013 13:24

Well, haven't had a brilliant few days. This, however, made me laugh like a drain, so sharing with you.

www.pawbonito.com/compilation-of-cats-stealing-dogs-bed/

Hope you are all feeling as good as possible.

peri, what does the phrase 'I have enough boots mean'?!

OP posts:
Pumpkinupthejam · 02/11/2013 22:25

Hi all
Just wondering if anyone has any tips for those times when your back goes into spasm? I've had occasional low back pain for years but recently developed bad sciatica, had physio and now waiting to see orthopaedic Surgeon.

On Weds I lifted something awkwardly and now the opposite side of my back has gone and I can't stand up straight. I've tried heat, ibuprofen gel and some stretching but I'm bent at a 45 degree angle unless I lie down!

I'm taking ibuprofen already don't have anything stronger except some tramadol which gave me a spectacular migraine last time I took it.

Anything else I could try?

Matildathecat · 03/11/2013 13:50

Hi pumpkin, for me it would be lying down with pillow under knees! hot water bottle and drugs. For spasm your GP should prescribe diazepam. Out of hours would prob do this. Obviously you also get up and move around but resting more likely to relax the muscles.

If ibuprofen not working and tramadol no good GP can give you cocodamol but if you aren't used to it it makes you spacey.

If you know someone and can afford it an expert massage might help. Not the type you get in a salon.

Hope that helps. Btw, if you need spinal surgery involving discs, nerves etc, go to a neurosurgeon rather than orthopedic.

OP posts:
Perihelion · 03/11/2013 13:53

Co codamol,( solpadine ) helps. Can get it over the counter for lower strenghts or on perscription. Also a TENS machine. And try lying on the floor with your knees bent at a right angle with the lower legs supported by a chair seat. Alternating heat and cold can also help.

Pumpkinupthejam · 03/11/2013 18:24

Hi thanks all it's been bearable today with lots of rest in between a few essential activities. I'll try and get some better painkillers tomorrow (our nearest OOH is 30 mins drive! Couldn't face that). I've taken cocodamol before after surgery, remember that floaty feeling! I had diclofenic (sp) once before so maybe that would help.

My GP referred me to the orthopaedic surgeon so I assumed that was the right direction to be going in. Appt is week after next so I'll go and see what he suggests. Physio doesn't think it's disc related, possibly facet joint.

Got to try and get into work tomorrow if I can, which is rubbish but I'm covering two jobs atm and no-one else is trained to do either. A whole other thread!

Pumpkinupthejam · 03/11/2013 18:53

I've just looked at difference between Neuro + orthopaedic. I dont know why GP didn't refer me to a neurosurgeon Hmm

Matildathecat · 03/11/2013 19:38

Trust me. Neurosurgeon and only consider surgery as very last resort. I am a testament to failed back surgery.

Anyway, hopefully the ortho will do MRIs etc so you will have more info. Hope you manage your day tomorrow.

OP posts:
Pumpkinupthejam · 03/11/2013 21:38

Thanks Matilda Thanks

PavlovtheCat · 04/11/2013 17:31

matilda that link of the dogs and cats has just had me in hysterics with the children! one of them looks just like my cat! I am sorry you have had a bad few days, how you feeling now?

How is everyone else?

pumpkin re what to do for back spasms! I would second pretty much everyone Matilda has already said - especially diazepam. If you'd not have any now get some from your GP. It is brilliant stuff to have in your emergency box. My GP gives me around 14 x 2mg at a time, and that lasts mea round 4 months, I take them when I am at my absolute worst, and when p my back just won't stop spasming it's the only thing that works. I take between 2-4mg, twice a day for a couple of days, and it makes such a huge difference. Prior to my discectomy my muscles spasmed at this drop of a hat to the point of not being able to walk with crying out in pain. If I took it immediately, it would mean days for recovery not weeks.

Also heat and ice, a shower with heat up and directed at your back if you can get in the shower.

Re ortho vs neuro. I would agree with Matilda as you have sciatic pain. If your physio thinks facet joints then that might be why you are seeing a ortho, but, how does he know that? Have you had an MRI scan? The ortho will likely refer you for one anyway so it makes sense to have that done first, so it can highlight if it's the nerve being trapped/disc or not. Then, if it's facet joint problem you can have a direct injection into the joints to work ou for sure if that's the problem. The thing with neuro, is that they are usually trained in both neuro and ortho surgery so it makes sense with your bing sciatic pain to send you to neuro.

I have seen the neuro. He is not happy disappointed is what he has said. I think his pride was damaged as the surgery appears not have been fully successful Grin He sat there with his arms folded all cross that I was in pain, like it was a personal attack on his skills when I walked in and sat down! It was very funny actually, he was all puffed up like a peacock!

The first thing he said was that he didn't need to ask how I was, as that was pretty obvious as I was hobbling! He said immediately that I need another MRI as something is not right.

He suspects the disc has re-prolapsed. He said that 1:20 re-prolapse but because there is a slipped vertebrae, this is probably higher for me. He also said that if he is right and par of the disc has squeezed back out, it's probably better to just take the whole thing out, especially if the vertebrae has slipped further, but even f it hasn't chances are disc will prolapse again. BUT. If it is not re- prolapsed disc, or, if the vertebrae has not sipped further then there is unlikely anything eye can do to fix this surgically. He was very honest about that, although he said he could not say what is accusing it if not the disc, because the suspects the disc. He was to unsympathetic, just that if not disc or vertebrae related, then it is not surgical and not his remit Hmm

He did say that if it's a disc, then that short space where I was doing well is achievable again, he said that at least I know he can fix me again, hopefully for longer than 2 months. He ended by saying he was hopeful that he could fix it, if I wanted him to. So it really does me he thinks it's the disc again. But won't commit to that.

So, here we go again. Although this time it won't have to wait 18 weeks to see him again as if it's the disc he will probably just put me on his waiting list for surgery ! Wink

PavlovtheCat · 04/11/2013 17:54

Oh, and I was particularly disappointed that he did not examine me...I had my nice pants on Wink

Matildathecat · 04/11/2013 18:21

Oh pavlov, sorry to hear that. Even when you know something's badly wrong it's still really hard to hear. I hope you don't have a stupidly long wait for the MRI. I would guess you will need to see him again to discuss the result. I had to phone the secretary as soon as I knew the date of the scan. Surgeon had told me to arrange to see him two weeks after scan. Guess what? Next available appointment was ANOTHER 8 weeks. So a gap of 14 weeks. Gave up and booked it privately.

One thing I might suggest after seeing him, is to ask for a second opinion. In this kind of situation this is perfectly reasonable. Going for second op carries even more risks with scarring etc.

I know you've really resisted much medication but maybe you could allow yourself the 'luxury', now you're official. Might help make work more bearable, too. How are you finding the new hours?

Finally, so glad you liked the clip. It summed my two up perfectly.

OP posts:
PavlovtheCat · 04/11/2013 18:40

Wow, so many typos on the iPad! I meant to say he was not unsympathetic, not that he was unsympathetic. He was actually very honest and appeared genuinely bothered for me that it was not all ok. He was just very clear about what he could and could not do.

I am in agreement with second opinion as what he is suggesting is, if it is indeed prolapsed again, is to take the whole disc out. And that means fusion.

Basically what I took from this appointment is that. Whatever outcome, I am never going to be 'ok' again. He said that fusion will probably mean back pain will remain but no sciatic pain. Or. No fusion and the back and leg pain remains (whether I chose no surgery or he can't see a problem with the disc, I mean fuck knows what the problem is if not disc but it ain't getting better).

It's hardy to say yet about new hours as I had Monday and Friday as annual leave, and this week we are on strike tomorrow from midday to Wednesday midday so won't be doing a full week. But I worked much harder and felt more productive today knowing that I was not going to have to drag my sorry arse through the day. Just hard to do all my work in 5 hours. Once I am back on top of my work I feel positive it's going to work better.

But...a colleague in my team is off with suspected disc problem Shock poor thing she looked in so much pain when she came into work. She had been off when it first went, then returned for a couple of hours before going to medical appt and didn't come back. Off for other two weeks. So boss sort of begged me to stay. No pressure or nothing.

Pumpkinupthejam · 04/11/2013 21:58

Hi all thanks Pavlov for your advice as well.

Sorry to hear you may need further surgery.

I haven't had an MRI or xrays or anything yet, physio presumably didn't know for sure but was just his opinion I suppose. I went into Dr today to ask for something other than tramadol and was offered a phone appt tomorrow lunchtime so earliest I will be able to get anything is tomorrow night. Bit upset about that but the surgery was heaving. The spasm has eased quite a lot though it's now a niggling pain that is manageable but still all consuming iyswim.

Working today was difficult as so uncomfortable, I had a lie down on the floor in an empty office at lunchtime, luckily no-one came in Grin

PavlovtheCat · 05/11/2013 06:47

pumpkin is there any chance you could take a couple of Days off work? I am sure your doctor would advocate that with a sick note. Then you can rest as much as you need and give your body a chance to recover from this episode. I know that's not easy and I am very lucky getting paid full sick pay, even then I hate taking time off work but sometimes it's the only thing that will help, slobbing, not thinking about much, taking high doses of painkillers and not being responsible for a thing(til kids come home!)

Is it bad that codeine doesn't do much for me in terms of head spinning these days? Grin

My ds is currently crying his eyes out because he wants to wear tights. I threw out his baby tights last year as they were too small, he is devestated. I thought at nearly four he would have been indoctrinated by now into the 'tights are for girls' brigade(not me I hasten to add) but it seems not, so Yey! Ah he is notorious at taking his shoes and socks off in the car even if freezing out.

I feel ok today, pain levels reasonable, mentally thinking fuck it and just getting on with stuff. I am not going to stop the cross trainer or swimming and will tailor my Pilates to at home for now, but I have to keep moving. I can't let this dominate my life again. Well, it already is but not so much, you now what I mean. I don't want to take the drugs. Bt I accept I need to so will take some when I finish work if I am in too much pain, but not at work. Codiene makes me talk too much!

I hope everyone is having a low pain day and that it beings some happiness to you all.

Come back those who are absent and let us know how you are doing!

Perihelion · 05/11/2013 17:58

Pavlov my head's not even slightly spun from codine for years Grin.