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)

Morning all.

goodness you are my hero. :o that will make him think twice about doing it again.

I stopped taking the naproxen wheni realised it wasn't making any difference to me, but if it helps then why the hell not? Mind you, I am talking as someone who is taking co codamol 30/500 and tramadol at the same time. And with sugar because it makes the pain killing effect so much better. I don't even feel doped up most of the time now!

pavlov your woman sounds like she needs to suffer long term pain herself. You can be the most positive person in the world and yet this pulls you down so far emotionally that depression isn't really surprising.

I know what you mean about the patronising thing. There are times I want to take my iq result in with me just so they know I can understand this shit. And actually I can't imagine those on the other side of the bell curve like being talked down to either. I wonder if it makes them feel better about how little they can actually do if they reduce us in their minds to the status of recalcitrant children.

oh scone is that true about the sugar? how does that work? Do you literally take it with a spoonful of sugar like Mary Poppins suggests? Nurses view of naproxen is that long term it is worse than any of the other meds for health implications. Well, she didn't tell me that, she got me to select the one of the list that might have the worst long term problems

My GP is the nicest woman on the planet. It's been a bit of a strange 'journey' (more crap jargon speak) for me.

I basically know my precise diagnosis because a very clever Expert Witness has spent many hours piecing the whole thing together from all my medical records from several hospitals. My GP just had 'back pain' on my notes which I hate, it's a description, not a diagnosis. Everyone gets fucking back pain sometimes!

So, I told her the entire story and she just about fainted and chatted for ages. Asked if I was all right. I said, no, I'm not all right, I'm a mess but I don't want anti depressants thankyou. Anyway she was happy to let me trial the slow release tramadol and said come to chat any time.

Then I came back on here and I just feel so supported. So thank you all. We are all having a shit time. We've all become hard, swearing, don't mess with me bitches and I'm so glad to know you all.

Going out now but particular people on my wish list for a very bad year day, are pavlov's nurse and goodness's man in a sports car.

Please feel free to add to the hex list anyone at all who has vexed you lately.

goodness, I wish I could come to you to help. I think you have to accept that your ds is going to be tricky and others will have to deal with it. I also think your DH needs to take a reality check and be home for a while. Unless he's the Prime Minister he can take time off! exactly as if it were him who was having surgery. Hope you get some luck with the helpline.

Sorry I haven't addressed each person, I am thinking about you all.
Warm in-netty hugs to all. You all rock.

matilda I am glad you got the slow release. As I have said before, the good thing is, depending on the dose given (I was on 100mg morning and night) you can top up with normal release tramadol to the max (400mg I think?). I think you will get on with it, but the first couple will take a little bit of time to work as it won't wallop you with pain relief, it will take a few hours.

I can't bear that the doctors never put the actual reason. My GP used to write 'back ache'. Back Ache? it implies a little niggle of pain that's going to disappear soon. 'Back pain' does not cover it. It;s not back pain. It's so much bigger than that! But, least she listened to you and was suitably horrified. It's a shame these people don't talk to each other, these professionals. My GP didn't know I had surgery 5 weeks in until I asked for extension on my sick note. He was like 'oh, i should have got a report from the consultant, when you see him for your follow up can you chase that up for me?'

I am fluffy headed. I don't feel as 'hungover' as I was expecting. Which is good. Think I need more coffee and a shower before I contemplate driving though.

And I so agree about the support here. I agree that you are all wonderful, despite going through your own shit, it's great to know where I can vent. And also I hope help a little from my own experiences.

too

Calling and calling YoungMinds but constantly engaged with no answer phone. Will keep trying. Mum n dad have said they'll have him one or twi nights a week and make out it's because of a Beavers on a Tuesday night.
Blue Badge arrived. Don't know how I feel about that. I'd like to think they've made a mistake and I'm very lucky. Not sure.

They were amazing. Amazing! Thank you. They'll be waiting for my husband's call tomorrow when they'll set up a consultation over the phone to help support him in support my DS

Good! Hope that helps. Have you freed the poor little lamb from the garage yet or will I call the RSPA?

I have put a very big hex on the lazy bitch jobs worth at our mini Tesco who refused to help me or let another staff member, carry my shopping to my car 30 metres away 'because we aren't insured out of doors'. Insured? What travel insurance? They are usually great. Might phone and enquire about this policy...

Well I laughed at you piss/pus typo/joke Goodness! And at the silly chap in the sports car. I guess it must feel like you are already mostly at the hospital already with these pre-op appointments. I agree you need to let others make the decisions for you and take care of all than needs to be done at home and for the dcs. Easier said than done!!
Gps seem to keep very brief notes now. I have been with the same surgery for 25 years and even quite recent history is missing - and there is nothing more than a few years old . You are right Matilda sometimes the Dx and details are important.
I (at last saw) my GP today. She has referred me for physio, but did not think an MRI was needed. I'm not too bad at the moment -(no numbness- just leg and back pain)- it was morning and I get worse through the day unless I go back to bed. I felt a bit of a fraud really. I was surprised I got that far - I have asked for physio before and been dismissed.
Hope the nortryptalline works for you Pavlov, (although I am sorry the nurse treated you so patronisingly) and the slow release patches for you Matilda.

Matilda maybe we should start a hex list as well as pavlov's intro/bio's. I'm sure it would soon fill up a thread though!

I thought about an excellent example today actually. As well as my back ache and epilepsy starting in the last few years, I was recently diagnosed with Fuch's endothelial dystrophy. This basically means my corneas are dying and I'll need a transplant or two in the future. When I saw the consultant for the diagnosis he started to explain about cell structure, then abruptly stopped, looked at me and said "what do you do for a living?" I replied "I'm a housewife, but I also have a brain so go ahead." Most unlike me actually I'm not normally like that, but goodness he wound me up! To his credit he did go a lovely shade of red

Ha, love that cowmop, quick response. Actually, with hindsight, the best answer to 'what do you do?' Is I'm a lawyer. When I was a midwife lawyers most definitely got more careful treatment esp from doctors.

So, yes, 'I'm a clinical negligence lawyer...do carry on'. Ahhh hindsight.

Matilda I really did laugh out loud re 'travel insurance' for going outside with your Tesco bags! Hilarious.
Lamb Lamb actually went to school with him this morning. He was concerned that he'd need to catch up on 'smelling him time'. I explained to his teacher who has very kindly popped him on a shelf. He's having a sleepover at school tonight. Fortunately, we have two! Lol

Cowmop, wonderful retort. Not out of place, either. I'm a teacher but have half a brain (shite memory), no general knowledge and generally know nuffink! Next time, tell him you're a brain surgeon!

Oooh. I'm gonna use that criminal negligence lawyer line. I WISH that had been in my labour notes first time round!

Please excise plethora of mini messages. Can't remember mire than one comment unless I literally write notes. Working memory crap.

My gd, he's at it again. Ripped up paper I'd written an 'I love you note' to to him on.

Ha matilda great line about travel insurance!

Goodness so glad young minds was helpful. They sound really good.

I am seeing my physio tomorrow. There is a lady at my work who also has a bad back and she is also having physio, there are a number of physiotherapists at the centre and I was told I will see a different one tomorrow, this lady told me the new physio is really good and did much better to her back that the others. So that may be good and I will see what she is like if I get her. If she does seem good I will talk to her about the numbness and stiffness still in my bad leg.

Or, when asked 'what do you do?', frown a little and reply, 'I'd rather not say.' It really puts the willies up HCPs!

Hope Junior Goodness runs out of steam soon..

Diagnosed: he has a severe case of little shititis, brought on by mummy's impending hospital visit. Went out to my last slimming world meeting for ... a while and he had played her up so much that she had clearly been crying. This is a capable and lovely girl! Am getting my DH to call youngminds tomorrow to set up some sort of support n strategy.

I've just had a grovelling apology from Tesco head office. There is no policy that states that employees should not step outside the door to assist a disabled customer. That bitch lady is in a lot of trouble.

Hahahahahahaha!!

Well, it made me feel better.

goodness, I'm full of admiration! I just couldn't deal with that level of ahem! challenging behaviour right now. I hope you have something pleasant lined up for the weekend.

scone, if you are reading! I hope you're ok! too. What a shock. I wonder why they want to operate so soon? Do keep in touch, we are here to support.

Everyone else, keeeep it steady!

First day of tramadol slow release, cautiously optimistic. Fingers crossed. I have a load of spinal injections on Monday then long flight Tuesday. I'm basically throwing everything at it!

Can I please just say that my ipad must be in a very good mood to insert quite so many exclamation marks on my behalf.

Having my nails done on Sunday, Indian head massage on Monday, spinal surgery Tuesday. Lol
Gutted to hear today that DS answered his teacher back and was told he won't be allowed back to jujitsu if he behaves next week as he did today.

Matilda!!! My phone is guilty of over using the exclamations too! Great to hear Tesco apologised. Hope all goes well for holiday prep.

Goodness don't feel bad, I expect the school is experienced in handling difficulties and will just be firm with him to prevent him getting too out of control. I am sure they sympathise with him being upset though and will give him extra support.

Hope so. Can't risk him doing gymnastics/ trampolining today. Would rather keep him off than have him banned. He may be asked not to return to jujitsu after last night ;(
Anyone at RNOH next week?
DH home
Thank goodness
He's so sad about DS' behaviour
About time though

A couple of things:
A sense of humour
I fully confess to being a former grouch bag. However, I've recently found that adopting (in the desperation that panic and humiliation tend to bring) a soh are as vital to me (and you?) as life rafts with firework signals in rough seas!
I surprise myself.
I successfully use this technique at recent urinary diagnostics (painless) Japanese Water Torture. Was told to take socks off as I may urinate on them.
And out came my honest statement of deep humiliation and ... my newfound soh.
However, like all comedians (pushing it a bit there), it's all about timing.
Tried to joke with a surgeon at consultation this week.
Fell flat.
Told him that the diagnostics were quite painless although I'd been terrified beforehand. Told him I could say that they were 'a piece of piss.'
Nothing.
Nope
AWKWARD
Bet he can't wait to get this particular comedian under general!
Hmmmmm

Current concern (one of a selection):
Poo
This comes with a TMI warning:
At pre op, I was told to arrive with empty bowels.
Have I been missing something?
Did my mother not teach me to poo on demand?
Did I just not learn it naturally, alongside (cubicled) peers?
I asked 'How?'
'A high fibre diet!'
'But what if I eat high fibre food and it doesn't come out in time?'
WHAT ARE THE CONSEQUENCES?
Pain?
Yukky moments for others?

Need I mention that I'm already terrified of going to the toilet to do my first poo, post-op. They've warned me that it'll be difficult (tumour in sacrum).

Think that's it for now. I'll leave you with those images and quandaries. They'll set you up nicely for the day! Lol