The Back Story Continues

[Matildathecat]

This is the support thread for all sufferers of back pain. Everyone most welcome to join.

Here's our first thread

www.mumsnet.com/Talk/general_health/1871592-The-Back-Story

My story long and grim but basically had failed surgery for disc prolapse, then further failed surgery to attempt to salvage the situation. I have nerve root damage and severe scarring around the nerve at L5 which won't get better. I'm 48, can't work, take a lot of drugs and have a blue badge. Currently battling several different agencies for ill health retirement and other benefits.

But I'm ok, having some fun despite the pain and have made some lovely friends on here.

Please post and include your story if you'd like to. No niggles too small, this is strictly non competitive!

We have a new Dyson. Yippee! The cordless rechargeable one. It's super cool. DH is actually wanting to vacuum. I know that won't last but for now I am enjoying listening to him vacuum the stairs - those very stairs that he has not vacuumed for months. I will be able to vacuum too, although, it's heavier than I thought it would be.

Positives - new dyson. I spoke to the consultant's secretary and asked for an appointment with the consultant. She was very, very nice, pleasant. She is not always rude, but certainly curt and business like, not today or last couple of times I spoke to her. She would normally tell me she can't organise this and talk to appointments team, but she said 'of course Mrs Pavlov, I will email them now for you and they will contact you as soon as they can'. WTAF is that all about? !

Yep, so used to rude, inefficient or incompetent people and systems that nice polite responses are rather baffling.

Have ordered The Velveteen Rabbit. Should be good, actually cos I've tried to assess her difficulties (asked my aunt long time primary teacher) and the main problem I can see is reading without comprehension. I love children's books!

Mediumship day but not done a lot other than getting fleeced and guilt tripped at the vet. Routine check, FACS etc £120. That's a lot of secret shopping I can't do.

matilda more than baffling. That, along with the cryptic non-information letter is making me suspicious. I forgot to say the letter said at the bottom 'Action: await patient's decision.' Like, I have the right information to make a decision.

I have been analysing the letter. He has not said there is no prolapse. But, that there is no 'clear' re-occurance of the prolapse for which I had surgery. This means that he has not said there is no prolapse, nor that the surgery has completely removed all the prolapsed disc, only that any prolapse is not clear, as opposed to not there at all. He has said the results appeared to be improved, but not fully sorted. He said that there are changes, and that this can be managed conservatively, but has chosen not to tell what those changes are - disc? arthritis/stenosis? something else? so, why has he not said what they are? And finally, he has said that if I want to consider surgery I can discuss it with him. So, this means to me that whatever changes are happening which might be contributing to pain, can be addressed with surgery. But, he has not offered it outright and not told me what surgery he is talking about (but we all know he is talking about fusion). He has spent some time carefully wording this letter, it has not been quickly written, there is caution in ensuring he has not stated/written down diagnosis, being careful to not say something he can't later on retract easily, in case it is misunderstood? Misinterpreted? He puts his foot in it? He has placed the decision making regarding surgery in my court, while giving me no information on which to base this 'decision', thus making it a non-decision.

He is, as denial rightly stated, and as DH has said also, that he wants me to just go away. Preferably now, but if not now, he will agree to surgery so that I go away? Why does he want me to go away?

I am not sure if this is because I am a natural cynic, which is either caused by, or is the reason for, working in my profession. But, I am sniffing something. I am definitely going to meet with him. I might ask for my notes too. Will he know if I ask for them?

and, along with all of this, why was his secretary, after being so snippy with me for so long, suddenly, which coincidentally was once the MRI was looked at, nice as pie? More nice than is usual for her and any colleagues. She couldn't help me more.

And there is a delay from the 'date of dictation' of 21 Feb to being dated (posted?) on 25th Feb and being received in my mits on 5th March.

If I get an appointment with this consultant within 2 months, I will know something is going on

I wouldn't "see"anything in date of dictation, posting etc, just the curious workings of the nhs bureaucracy. Still waiting for my letter which I've been told "has been dictated". Why oh why can't they just e mail the damned things.Imagine how many scans /innovative treatments /extra staff all that paper and postage could pay for.

I`m glad everyone's having an ok week. I'm sorry I just pop in and out.

It all sounds really frustrating, Pavlov. Why couldn't he just write a letter with some meaningful content in the first place? Crazy that you might need to wait 2 months to find out what he meant by all the vague phrases! Do you think you'll be able to get hold of the MRI report via your GP before that?

I'm at the opposite end of the thread from everyone else, trying to work my way through from p.1! Loads of useful info. but also making me a bit emotional reading about what you've all been going through. Finding the idea of chronic pain / back problems a bit difficult to come to terms with - even though I already have chronic health "issues" (hypothyroidism as well as stupid arthritic toe).

The dyson sounds great, though. Is it the "animal" one? We got a gtech airram a few months ago & it's quite light, but has no tools so haven't been able to chuck the cumbersome, crappy Henry hoover away yet, much as I'd love to. DH has to deal with him at the moment.

Have ordered some flexiseq, live, thanks for the recommendation. Bloody toe has been playing up the last couple of days, first time for months, so hoping that might help. Tesco van outside so off to bring in shopping - stomach muscles braced etc.!

denial no you are rite the date is irrelevant just another annoyance. Hope you get your results soon. loon two months would be good! I waited 2 or so days short if 4 months to see the consultant following confirmation that I had a prolapsed disc that was impinging on a nerve, and 3 months to get the results of an MRI scan, which turns out to be non-results of an MRI scan. 2 months is nothing!

It's ok though, I am consoling myself with being forever debilitated to some degree with a bad back by treating myself to a nutritious dinner of wine and a magnum infinity.

DHs knee is not great. It improved to a good amount. And has stopped there. He can walk on it, with a little pain, but it gets worse through the day. However, he a can't twist it without pain and cannot do stairs. That's not good when you are my fetcher and carrier seriously though, he can put his own weight on it standing normally but can't for exMple stand on one leg, or squat etc. not that he needs to squat often that's all we need, two adults unable to do full range of activities in our house!

loon we have a Hetty! Can't get rid of it as the dyson has small capacity and limited charge life. it's mostly for stairs and to help me keep on top of things regularly, clean up after children etc, used daily hoping it will make things easier to manage. Nt sure if it's the animal one. It's the dc59? Does cat hairs and DDs long hairs a treat!

Matilda, what about Ballet Shows (and her other novels). Perfect for a 7 y old! If she can't read it herself, it'd still be so beneficial for it to be read to her or alongside her.

Ballet Shoes. Not 'Shows'. Bloody autocorrect.

Matilda, sorry and saddened to hear of your similar 'friendly vs friend' wake-up call, too. Boy, did you have a shit old time of it! I was made redundant after maternity leave, when I'd just give back to work and had a molar pregnancy. Know what my leaving present was... a book titled: 100 Places to See Before You Die. I think that they were trying to tell me something along the lines of 'fuck off'

Colleagues who'd given to a leaving present fund were horrified when I was left out of it as I was working in the Infant vs Junior part of the School on my return post mat leave. Bridges and water now. Hurt then, but it's just 'bridges n water' now.

Pavlov, your waits. Aaaaaaargh. Have u got the secretary's number? I'd ask for clarification. But doesn't sound like you'll get any ;( for that reason alone, it'd be worth complaining through PALS and going to someone else. Wish I could fight for you or do something. Mr Allibone is good.

Pavlov please ignore me. You'd already spoken to secretary. I start reading from the end backwards. Duh.

Ballet shoes is a very good idea- loved that when younger. Trying to think of what i raed at that age tbh. 7 is plenty old enough for some Roald Dahl- the younger end would be The Twits, The Magic Finger, Fantastic Fox, Georges Marvellous Medicine, Matilda(she is about 6/7 in the story- always good), The BFG , The Witches, just of the top, there are alot= oo yes Danny Champion Of the World good too, I loved his stories, so wicked and funny at same time. 7 is the age of magic so "the queen's nose" and "worst witch" also good. my dh suggests "conrad's war" and "mylor" which he enjoyed immensely. Does someone read books to her also- my dad read me the Narnia books a few yrs before i could for myself, which makes it more exciting.
pavlov this letter is such a stress-inducer, platitudes and non-statements. You deffo need a face to face to get some sense out of him. It reeks of some technique to avoid putting his balls on the line. I am a complete hypocrite though and always find it impossible to argue with docs- except Dr Arse from weeks ago- his complete stupidity unlocked my skills of debate somehow! Take notes of what you want answered etc so you cant get railroaded.
I have a presciption from the doc for dihydrocodeine but my gp practice WILL NOT prescribe oxycodone because it is SO addictive apparently- I know some of you are on it but seem to remember not that many per day. She said they have this policy because they have had people stuck on it and found it v hard to get off. They are very effective, oh well. she gave me morphine pills instead so hope they will be similarly effective. not needing so manycurrently - just aware that as i do more- and often do "too much" but then it's too late and you need something heavy to hit it with.
I went to uni pm session, it was good to get out, deffo glad i got instruction for that subject(statistics, standard deviation and some calculations on data) - finished early, so it was a good |"toe in". Very tired this am, prob to be expected, getting back to normal takes time
goodness yes it is hard when people dont call, some do and show themselves to be real friends- but some may hesitate because they dont know what to say etc, if you think u had a connection with someone, it might be worth ringing them and making the "first move"
hope everyone is sleeping well tonight and enjoying the weekend

Maisie, when I was in hospital to have the tumour removed, I was in PAIN. I know we all are here. But I was still coming round from general anaesthetic and had my very own push-button morph one thing, copious pills, etc and STiLL had to b turned (couldn't do it myself) every 30 mins. The morphine did not work. Anaesthetist came round and I told him "This drip isn't touching the sides. I've not slept for 3 days and I'm exhausted!" (Q tears - genuine ones). He made a guess that it was chronic nerve pain I'd had all this while (2 yrs plus). Off the morphene. On the oxycodone, oxyNorm, amatriptyline and gabopentin concoction. Within a day or two NO pain.
Thing about Oxy (heroine based drugs - I've since learned to my horror) is this: so similar to morphene based drugs and although still not yet research-based proven to be more effective, does work better for some patients with nerve pain. Some say also morphene based. Who cares (and I have HUGE addiction anxieties). But it worked. I could not have existed on 15-20 min sleep intervals on an ongoing basis.

Here's the thing: Pain Team visited me at end of my stay. Told me to be wary. Oxy drugs are very expensive. Very. That morphene is pennies in comparison and that they soooooo often hear of GPs taking their patients off the oxies (secretly) for budgetary reasons as they use this weak research based proof to justify themselves. Although your GP sounds like he's using the 'addictive excuse' (and I'm NOT suggesting that's either untrue or unimportant), it MAY be a budget cover-up. I guess it depends on how much pain you're in and how long you're likely to b in that pain for.

It did freak me out to see an episode of Orange is the New Black where they're dealing with heroine sneaked into prison in the form of oxycodone, I think. Just thought I'd tell u what I have learnt of late. And I personally would say it's important to get it for the acute stages. (Post op etc) but wouldn't want to take it on an ongoing basis, I guess - unless it was necessary). So it depends on your case.

Lastly, if you girls haven't seen Orange is the New Black (I saw it on Netflix) pleeeeease watch it. Seriously fanbloodytastic-amaaaazing!!!!!!!!!!!!!!!!!!!

Another book (similar to Ballet Shoes): Noel streatfield's White Boots

I loved, loved, loved all Noël Streatfied books as a child. Devoured them. Don't think young mischief (my dn, she's very naughty) is up to them yet. I'm just visiting once a week to read together. I have got some books from Amazon which are previous texts for testing KS1. They are much easier than I expected, much easier than Ballet Shoes etc. so, something to aim for. Out of interest, do modern kids even understand these books? Much as I love them there's a lot of language and activity which is very dated.

Just hobbled round the park, it's lovely out. Very cheering. Lovely dog walking friends, always have silly and funny conversations. They got me onto Line of Duty. Have a new addiction, Breaking Bad. I know I'm centuries behind but loving it anyway. Plenty there to keep me busy. I will keep Ornange for after that.

goodness,although my colleagues didn't really deliver on the friendship stakes I have been extraordinarily lucky with my other friends. I've said it before, I think they have saved me. Isolation and loneliness would be killers for me. I'm a social animal and need human contact. So, I'm lucky there.

maizie if you can understand all that whilst under the influence of strong drugs you must be seriously clever! I worked that one out when I met you, though.

pavlov glad you are pleased with the new gadget. Now go and buy something vaguely glam. Lippy, nail varnish...you can choose.

loon glad our ramblings are helpful! Sometimes it's just venting which is therapeutic. We've got quite a bit of experience between us, sadly.

Just taken the Trammy sr, it's become my drug of choice lately .

Matilda, the unfamiliar vocabulary is good for them but does mean that they'll understand less when reading independently (alone).
How about Malory Towers, My Naughty Little Sister, etc.

I've got looooooooads of book recommendations up my sleeve. Lol
Bet you're sorry you've got me started! If you do want more, let me know.
Think about getting out some Talking Books (book with unabridged CD accompanying it) from your library, too. They have lots of kiddie ones about fairies, puppies and what not. That can be supportive.

What kind of gadget are you suggesting Pavlov buy? Lol
Talking of gadgets... I'm feeling guilty at not having used my Physio machine for over a week (or done any Physio fir nearly two weeks. Been rebelling.

I'm virtually off all meds. Ish. This is great as it's remarkable I'm in so little pain. BUT fuck.... I'm now back to being awake from 4 am (3am last night). And I mean 'from', vs 'at'. I don't get to go back to sleep. Haaaayeeeeelp. And I don't want sleeping pills.
Confession - I should put boring as fuck soporific CD on at that time vs Ipad.

Orange is the New Black is waaaaaaaaaaaaah better than Breaking Bad. IMHO
Kills me that there's no Season Two yet. Anyone know when it'll be?

Hi girls, making an effort to post in the daytime today
I think I read and liked white boots too, rings a bell.
goodness you make so much sense- I was told oxynorm and morphine were the same but clearly they are a bit different. I can understand why the oxy stuff is very addictive as it was more effective but she also said it costs alot more which is why they use morphine pills on the wards. The doc rang me and we did have a pain types discussion and how I was using things and she said I was doing the right things and being sensible. I had a very fast improvement to pain level when i started the Amy so it seems nerve pain is deff a factor in my case. I have heard/read that several things can be going on at the same time- this made sense with me as with the Amy when i started taking it if my pains were "the orchestra" then the day after i started it the whole wind section stopped playing- hope you like the analogy. I have been taking the dihydracodeine 3/4 times a day and just adding in morphine pill when that doesn't cover. I had to trek around Peckham high st to get the presciption which ironically pushed me alot further than i wanted. Dh had said dont buy anything but i knew we needed nappies and wipes so i was carrying stuff as well. not good i know but I got home and had a rest, hottie, meds etc to get back to equilibrium (film of the same name is another of my favs- someone mentioned G Orwell so you would like it! It's his world with gun-fu)
Last few days I am stupidly sleepy in the am! Dont know why, will try to take my Amy pill a bit earlier to help that.
Watched a great Horizon prog on why we make decisions/how- last week's. I highly recommend, very entertaining with lots of psych stuff too.
The one this week is intersting looking but i fear it will not actually tell us what they say they will (what came before the big bang) but just dole out maybes etc.
matilda you are very kind to say so, I think I am also capable of quite amazing stupidity also maizie by name maizie by nature. I am feeling this week like making my brain work while taking meds is a bit harder than before but i guess i am doing lots of healing too.
I ordered 3 pairs of Fly boots/shoes to try on- I wont link coz i am a lazy arse but they are the Yeddo ankle boots in black and the Yodo court shoe wedge things in black and in red. Not sure as they look a bit clompy on my- but will try on with a dress later in front of the mirror. only planning to keep 1, red ones fav at the mo, it's a nice dark red, would look ok with alot of things i think- i dont matchy-matchy, I lke to clash/ do eclectic a bit.
Got to dash off now, kids tea time, post more later x

and yes what gagdet? got lost on that one, not sure what has been said
pavlov thankyou for being gracious, I wholly approve of the new version of the no sentence

Someone tell me why I thought a day out with the kids without my stick was a good idea today?

About books, my dd is 9 and not a very keen reader but she really likes David Walliams. She has read two of his books independently now and has Gangsta Granny to start soon.

My back has been a bit worse these last few days I can feel my leg pain a bit more. Its still not really bad but starting to worry me a bit.

pavlov that is all very weird about the consultant letter. And sorry to hear about your dh knee. We are all unhealthy in my family too, dh has diabetes and he also has a mild bad back he does get on with things though.

loon hope the flexiseq works for you, let us know how you find it.

Those of you who have fly boots - are they a decent depth at the toe end? Really like the look of some of them, but worried they might be too shallow at the toe - my crap toe bends upwards (think banana shape) so I need a roomy toe box. Really narrow at the heel / ankle, though, so sizing up doesn't tend to work.

maizie, think you'll need to let goodness explain her gadget. Are you over 18? checked out your purchases and approve. I've got the same heel thing on my Fly boots and they are astonishingly comfortable. It's the first time in my entire life I've been able to wear heels in comfort. Bet you'll keep them all.

goodness 6th June according to t'internet.

loon think you'd have to check. I find them super comfy but no toe issues. The leather is very soft though.

I wonder if Fly know we are advertising their goods. Perhaps they'd like us to trial some of their products?