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)

cowmop hope you don't think I was being insensitive in my last post, it was a shit diagnosis! Hope you are ok.

pavlov I don't have constant pain in my leg but it is stiff and sore if I bend quite low crouching. My calf has some numbness and I get tingling if I sit in a very upright or hard chair where it is pressing on my thigh as I sit. This is all improving though. I wonder if they will even consider an MRI now I am so much improved. The physio does know about my leg problems with the numbness and stiffness.

live my clearly new physio saw me several times, bent over, unable to feel my toes, before she got her boss, who looked at me and went 'errr I will call your GP and ask him to refer to spinal care team, you need another MRI', so don't necessarily think that because physio are ok with it, it is ok.

It's good that you are improving. But, please keep an eye on the numbness as that is clear nerve damage. tingling is nerve damage. I should link you to my old blog which I let slide, with a post about how I got DH to stab me in the leg with a knife to see if I could feel it he didn't really stab me he gently prodded with the tip of a knife while I closed my eyes, as i couldn't figure it out properly myself when i did it. He actually really did prod quite hard in places and I didn't feel a thing .

Is your physio doing/has he done the leg raise tests etc? I really don't get why they don't automatically refer for MRI with obvious nerve damage, as, if it's pressing on a nerve, yes it could get better, or, it could get worse, and if it gets worse, or does not improve, permanent damage can occur. Numbness is a real Red Flag.

Popping back in after not being on mn for a while.

I had my consultant appt yesterday- and actually saw the consultant. Slightly freaked out as He decided that I need the operation next week. Yikes.

Apparently I can't have a microdiscectomy but I need the disc removed and bone as well. And a six inch scar.

To say I am a trifle freaked out is an understatement. Dh is back in Australia, so my parents are going to come and look after the dc.

RANT ALERT:

furious.
really really cross.
you know like Mutley from Dastardly and Mutely, that type of grumbling, moaning cross, but constant.


I don't even know where to start.

1. patronised. Funnily enough until I told her what my job was. Then she changed her manner a little. How fucking dare she treat me anyone based on whatever judgment she had. She presumed I was a bit stupid. how dare she treat anyone like that whatever their job or non-job or background?!
2. patronised some more. practised her CBT training on me, clearly. Don't try to educate me by giving me some obvious options to pick from in response to a question, to 'guide me' to the answer. Just answer the fucking question. 'does the cold weather affect back pain?' 'well, what do you think the muscles do in the cold? do you think they relax, or constrict? yeees, it's just as you were saying about heat! do you think heat is good or bad?'
3. Filled out a form saying how I feel in terms of pain, how it affects my daily life blah blah. Scores, not feelings. She looked at it for like a second, I didn't even fully register her looking at it, and she had already made up her mind.
4. fed some bull about why I can't have the injection - something to do with the pain being bilateral, and the nerve block only being on one side or the other, that this pain is 'jumping all over the place' and is more likely to be to do with my brain signals that nerve compression. Ie, they are now fired up and won't stop. She said the brain was 'overexcited' with it's pain whatevers. So, nerve block would need to deal with all the areas of pain and that is not possible with one injection well give me two then!

Asked me about sleep and mood. Then gave me some meds that she said will help me sleep and improve my mood, but 'are not because I am depressed, they are for nerve pain'. Nortriptyline. Like Amytriptyline, but nicer apparently. And will make me feel better.

And I shouldn't take naproxen unless during a flare up (what the fuck is this now if not a flare up), if I take this now, what do I do when it's really bad? (it's really fucking bad!) and once the new meds have started to work, I should really think about stopping those

Was just poking my leg with a pencil to see how numb it is after reading your post pavlov not sure id trust dh if I asked him to stab me it is quite numb in places on my calf. I am wondering what they could do about this nerve damage, if anything though?

scone that sounds terrible it is so quick, I know we moan about waiting lists but it will be hard to get organised. glad your parents can come and help. Can your dh come back soon?

scone wow! fusion then? will they fuse it? I would suspect so with a 6 inch scar (you need bio oil when the wound is fully healed, it is, allegedly, awesome at reducing appearance of scars.

No wonder you are bricking it with such short notice and DH in Oz! But, you will feel so so much better following surgery, and although the recovery will take a while, it will be worth it. Although my surgery has not been as successful as I hoped, I don't know why that is yet, but it is still better than it was marginally at the moment and I remember waking from surgery, despite having had my spine operated on, feeling better in terms of leg pain than I had for such a long time. And. I was told 4+ inch scar, and it is like 2 inches, very small and neat. I hope you find your surgeon is able to keep it smaller.

live they can check to see if the nerve is still trapped. If it was trapped and is now untrapped, they can't unfix that damage, but, likely, as it's such a short amount of time, it will return to normal and not be longlasting. But, if it's trapped, it needs to be untrapped! And they can't check that without looking at your discs!

My calf was numb, and so where several of my toes (two toes little one and next one, completely, third one came and went) at the time of surgery. When I woke from surgery, having had the offending bit of disc removed from on my nerve, I could feel my calf, but not my toes. From then on I had vague returns of numbness on my calf but it quickly disappeared completely, and my toes returned to normal sensation within a month or so, maybe quicker than that.

the worst bit about a numb calf i found was when I was able to bend to shave my legs, i couldn't feel the razor over that patch of leg! That was the most horrible sensation ever.

I was wondering, seeing as there are now a fair few of us, and lots of us come and go, and some of us --me- never go, it might be useful to have a little list of who we are and what our back ishoos are. We did this in one of my anti-natal and post-natal threads, to help us know when we were all due, where we lived in the country roughly, and then after birth, what we had and their birthdays so we didn't forget anyone or forget certain bits of info. And then, when we get new people coming along, they can add their names, and they can also see at a glance the different shoos we all have. nothing hugely personal.

Like this:

PavlovtheCat Devon UK. L5/S1 disc prolapse and vertebral misalignment (spondy something or other). Had partially successful discetectomy June 2013
Add yours....

Oh what a witch pavlov another one for the pain transferring device. Or get your dh to stab her in the leg.

she just spouted so much rubbish. I just wanted to say, I am not attending a training course, I am not here to 'learn'. She didn't even know my history properly. She gave me lectures about not using naproxen as I didn't know for sure this was inflammatory until MRi was back - except I told her than when I stopped taking it, the pain increased. Her answer was this - it is probably propping up the effects of the codiene, as taking something such as naproxen improves the effects of codeine. So, if it is working as a pain reliever, why the fuck stop it?!! My GP clearly disagrees with her logic, as he gives me hundreds of the bloody pills each time he repeats my prescription, has done for almost two years. FFS. She has no fucking clue. She was not meant to be diagnosing me. She was meant to be helping me address the pain (and not make it worse).

She gave me an information lecture about the difference between back and leg pain and how they are different, and need treating differently, and how paracetamol/codiene/naproxen doesn't help nerve pain very well. I have had bloody surgery woman, I have been suffering from this pain since 2012. Do you think I don't already know that!'

Oh, and also it's posture related. Not that I am walking the way I am because I am IN PAIN, but i am in pain because of how I am walking. FFS.

She is so on my list for that pain transmitter device.

I didn't even bother to mention the word 'diazepam'. Bloody hell, I could imagine her catsbumface if I said I was taking that from time to time.

Thing is, I could so tell she normally runs training groups. She was talking to me like I was a participant in a group with her questions to illicit participation. I didn't want to participate in learning. I wanted medication and/or other pain relief options.

I am so going to change how I work with my clients. My boss is not going to like it, but really, people don't always want to be educated. sometimes they want someone to just tell them the bloody answer. Instead of all this nice and gentle attempt to have them take ownership. No. FFS. 'when you hit your partner, you were very wrong. It's aggressive and controlling. Learn some respect, don't do it again, or I will make sure you get a prison sentence. Which one would you prefer? ok. Here's your next appointment'. There. I am certain that will do the same as 4 weeks of motivational fucking interviewing. Which is so what this nurse was doing.

I might have just been enlightened. boss if you are stalking me, don't worry I won't really say that to them I shall continue to use CBT and pretend it works

Ok I will do me livelablove W.Sussex Uk, recovering from recent acute lower back pain episode and sciatica.

Can you call the job centre for me and ask them what is going on with my claim? "why don't we talk about what you want to say, how do you think you should approach it, then you can use my phone and call them yourself and I can morally support you while you do it, so that you can feel empowered" could be 'yes, give me that bit of paper with your details, I'll call them for you'. They don't want to learn anything, they just want to be paid.

Sorry. I shall stop ranting. I am so annoyed. And it cost me £15 in childcare as my appt was at 3pm (3:30 when I was actually seen). ok, now I will stop ranting.

Sorry.

livelablove W.Sussex Uk, recovering from recent acute lower back pain episode and sciatica.
PavlovtheCat Devon UK. L5/S1 disc prolapse and vertebral misalignment (spondy something or other). Had partially successful discetectomy June 2013

YEY! I love lists...

Oh cow op, how scary! I actually do have an addictive personality type so I'm absolutely terrified of anything like that. It must be so very hard. How bad is your pain and functioning without it?

I'm sure you aren't a patronising witch pavlov! People know if you are genuinely helpful or if you are feeding them a load of B.S. But its hard to know if this woman was right that the injection would not work due to the bilateral thing. Could that be wrong? If so could you get a second opinion?

Matilda. Thank you - for everything. I'm giving to call the number on that link tomorrow. He was horrendous again tonight. I understand that thus is excuse rating his behaviour however calm n positive we are playing it up to be. However, he's 'special' and exceedingly wilful and sensitive. It's obvious to HIM that I'm going to the hospital every single day, virtually. Poor thong. But poor au pair. Scratched her for the second night tonight. What of she leaves? Wouldbt surprise me. She was crying tonight. She's so wind fully lovely and is excellent with him. He was up until 10pm. I'm not sure what to do. Going to call that number tomorrow and will take him to second half of CAMHS assessment Monday (day before op). My Crazy Alfie!

I've talked to them both about 'lumpy'. That's all good. Dint think I want them to see me in hospital but it may be better for them to see me than not.

Up for a laugh?
Wanna know what I said to the young man in Hs sports car blocking the entrance to the hospital at 8.15am this morning?
I beeped.
He beeped back and said something sarcy like 'I love you too!'
I rolled the window down and shouted (word for word):
'Get out of the way you stupid cunt, I've got a tumour in my spine!'
He went a paler shade of grey... and moved

Is sudden and excessive swearing (with occasional but safe (no children) outbursts a normal symptom of back pain?
Dint usually swear. I'm a teacher. Have been swearing... a lot.

goodness a bit of swearing will be good therapy for you! Anyway you sorted that guy in the sports car. I think Pavlov might like you to swear at her patronising woman if you want to do a bit more.
Was the appt any help?

Ha Goodness, I like that. Straight to the point and effective. Pavlov's woman could certainly gt a few tips from you. I hope you get some help/advice today for ds.

pavlov I don't know how we sit through some of these appointments without causing bodily harm to someone in the room. It boils down to us or them sometimes doesn't it? I really don't know what possesses people to be like she is, and I'm pretty sure she's probably well thought of as she sounds like she'd say all the right things in training courses and assessments! I was initially refused injections as the trust had decided they cost too much weren't effective for back pain. In the end I got PALS involved, but we really shouldn't have to fight for every little thing. Do you have to go back and see someone else about the injections now or is it still a bit wait and see? Medication wise, what's wrong with naproxen? They're a staple for lots of back pain sufferers aren't they? TBH she sounds a lot like the guy in Pain Management I saw, he just wanted to say I was depressed and the pain was a side effect of that. I think he was a bit disappointed when I wasn't and had scans to show differently. Hopefully your boss isn't a stalker (creepy) but I'm sure he would see where you're coming from!

Matilda, good luck with the GP today. I hope you've got more spine than me (bum bum, I thank you) and don't have a crying fit mid appointment.

That all sounds a bit scary scone, but hopefully will make a big difference in the long term, I'm glad you've got someone there to sort the kids even though DH is away.

I'm not sure what to say about your leg live, could it be you are favouring it and making it sore? It does sound a bit nervy though if you've got numb patches. Was it you asking about Pilates? I would really recommend it. I go to a really gentle class run by a Body Control trained bod, she goes round and is constantly adjusting positions. So now when I do it at home I feel better for doing it rather than achey as I was from using a DVD previously. It's well worth doing at least a few classes in my opinion.

I'll do pavlov's list in a bit. Running late now!

Pleasure. I don't even charge for my swearvices!

WARNING: feel absolutely free to skip the rest of this rant-a-post. Just needed to get it out:
My DS. Omg my DS
Played up right royally last night. Friend travelled over to see me. She works looooong hours and is exhausted but came all the way to see me before I go in. Didn't have the chance to speak about 'things' though. DS took every opportunity to run riot. Exasperated, I did all I could not to smack his bottom. He pushed and pushed so I did he one thing I has always promised myself I'd never do: take his comforter lamb toy. There is now a very cold, blue track suited lamb in my garage (not real a don't fret)!
I then had a 6 y old waking and shouting/ crying for it. I conformed him (at 1, 3 and 4am). Having scratched my au pair and been absolutely terribly behaved I don't think this was extreme. How can I leave him with an au pair like this? She's worried.
I've told my patents he'll need to stay there for 2 days per week. It's going to be hard for him though and I totally get that this is largely down to his sensitivity around my op. At 19 and 11pm he was still running out if bed to put his light on and play. I ended up turning it of and taking the bulb (now back). Lord help me!
To top it off, my autistic DS (I diagnosed but obvious to me), had not only been playing with my side ravel plugs n leads while I'd thought he was in bed, but had... changed the flaming clocks. So, tired as a dog, barely coping with the stress of my own shit and his shit last night... I woke up at 6am, woke my DD (3y old) up and started the day - a full hour EARLY!!!!!!!!
So, one cold Lamb in the garage later - it's all I've got over him.
It's very sad as my DS doesn't understand that 'cruel mummy' is dishing out consequences for HIS behaviour. Makes it hard.
I'll call that number today!!!

Facetimed my DH. Frankly, he didn't get the "Hello honey!" He might have expected.
He usually gets home beyond 8pm every night and after the first two weeks post op, will not be able to be home between 7am and 8pm.
Dreadingthat.com
Gd help my DS at school today - and his teachers.
As if the op and all that entails weren't enough!
Oh, consultation was okay. He'd made up his mind so not really a decision to be made. Still not completely comfy but perhaps I'd never be?
Got to trust and hand over.
I think that it'll be a looooooong journey as they only want to look at the tumour and getting that out, analysed, sorted. Nerve function preserved as much as possible. Holy f...
Shit
I tried to lighten the mood in the consultation room.
Told him that the previous day's urinary diagnostics were 'a piece of puss' (actually not my sort of phrase). Nothing. Page corners of his mouth stayed very much horizontal. Tried other, more lady like jokes too. Nothing. Hmmmmmm

Sorry for ranting.
Hope you ignored the whole thing.

Omg
A piece of piss
Not puss (although not entirely inappropriate). Hilarious.
Lolling socks off!

goodness well done for socking it to that man in the sports car! that's so funny! and he bloody deserved it too. Arrogant little sod. Poor you and DS, this is so hard for all of you. Will your DH be able to take any leave when he gets back? Compassionate leave even for a couple of days? to help you, to help DS? I mean, you are not going in for a bunion op that you will manage fine with support from au pair and mum. This is a big op and you are going to need emotional and physical TLC.

Don't you worry about ranting. As you can see by my efforts on this thread, I am known to rant

live I am pretty certain I am patronising at times. I certainly don't mean to be, but the 'way' we work, the cognitive/behavioural techniques used are meant to illicit change in thought processes, and we are meant to use this as a sort of gold standard in all our contact, sort of ripple through our work. TBH though there are often times when i am not observed that I just say it how it is, especially with the younger males. I gently inform them of how horrific prison can be for example for a young male. I will give them examples of others like them and where they have ended up. I have marched them to the fines office or the housing office so that they don't end up homeless. But, certainly I am sure I am patronising sometimes.

matilda it really annoys me, makes me frustrated. They don't seem to get, even if I am depressed. And, perhaps I am, a little, there is s definite cause for that depression and if that is fixed, or managed, if the pain is helped, then my depression is sorted. It's fixing a symptom not the cause. And sometimes, that might be needed, if there was absolutely no more that could be done to sort my pain out then long term stuff for depression might be acceptable, but, we haven't even touched the pain management stuff yet. I have no idea about the naproxen view. I wonder if they have done some training which has directed them to reduce the amount they prescribe, or how long people are on it for. A new fad to save money. Like my GP changing if from diclofenac to naproxen as diclofenac increases risk of heart problems in older people. So does naproxen, so I guess he had some training and visit from a salesman.