My feed
Premium

Please
or
to access all these features

Mumsnet doesn't verify the qualifications of users. If you have medical concerns, please consult a healthcare professional.

General health

The Back Story Continues

999 replies

Matildathecat · 09/02/2014 06:04

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! Smile

OP posts:
Report
LostInWales · 10/02/2014 12:40

Goodness, you know what, they don't know, they don't get it and humans find it very hard to comprehend stuff outside their own sphere of experience. They probably feel guilty in some ways and because no one likes to feel bad about themselves they are a bit cross at you for making them feel like that. They would like you to be fine and normal and not taking attention from what they need, people are just weird and I'm not that keen on most of them. You have us though, we KNOW, we really do, the frustration, the desire to just be able to go out and do something nice and it to be normal and not take all the reserves of energy or your days supply of low pain minutes. In a way the 'spooners' thread has that one thing exactly right, we don't have an unlimited supply of what most people take for granted and that is SO frustrating. Fucking, fucking, fucking frustrating! I'm choosing one section of your post 'I had a really lovely time'. That. You had a really lovely time and if the rest of them don't understand then it is their problem, you cling on to the lovely time memory and ignore the rest of them, they don't matter if you don't let them.

Report
LostInWales · 10/02/2014 13:04

With the standing up x-ray thing (apart from being astonished that a chiropractor has his own set up Shock, who read them, what training did he have, radiation all over the shop!). There used to be a lot more standing up x-rays, in fact we used to regularly x-ray pregnant women standing with a metal ruler clasped between their thighs when they were near term to see size of the baby's head compared with the size of their pelvis! There are also standing flexion/extension x-rays of the lumbar spine (I bet you good money the Dr sending Pavlov for those was old school Wink). The problem is there is relatively a lot of radiation using this method and they are not as good generally as the ones where you can be positioned perfectly lying in a stable state on the table, with positioning aids under your side or between your knees. There is a lot that can be read from these, including the state of your muscles and other stuff. With reading x-rays the most important thing is that every one is taken in a standard position or it is harder for the radiologist to read. MRI standing up or sitting would be brilliant but I think the science needs to catch up a bit first. They are a fearsome impressive bit of kit those machines .

Report
magso · 10/02/2014 14:23

Sounds like you worked in that field Lost. I wonder if that chiropractor still does X rays then? Things change quite quickly in some fields. He was trained in the USA or Canada (embarrassed I cannot remember) I think so kind of a super (pricey) chiropractor. I've just worked out it was 12+ years ago as ds was in a pushchair when I visited that one. The practice was up very steep stairs in an historic building without a lift, and carrying ds and the pushchair was difficult. I stopped going because I got worse (full on sciatic pain) so changed my allegiance! In all fairness it might have been the stairs (with a very wiggly autistic ds to control) that caused the worsening -not the treatment.

Goodness Lost is right. The idea of 'spoons'(limited strength or good minutes) might help the people around you understand better. It is important to reserve some of your good minutes for what you enjoy - to help you get well and strong again. When well we balance our time between what must be done (daily personal care/chores/work/looking after family) and rest and enjoyment. The rest and enjoyment bit is the important stuff. Hope you are having a better afternoon.

Report
LostInWales · 10/02/2014 14:57

I am a secret NHS interloper on the thread Wink. Which doesn't mean btw that you can't slag of crappy health care workers in front of me, they drive me crazy because I know the pleasure of going above and beyond for a patient to make their visit better and the lazy, doing the bare minimum or downright rude examples make my blood boil. My first x-rays were done by a very senior colleague and when they came out of the processor she said to me 'oh I am so very sorry' Grin.

Report
GoodnessKnows · 10/02/2014 15:04

Lost, what a moment that must've been. ;(

Report
LostInWales · 10/02/2014 15:10

Sounds silly but I was actually relieved that there was something physical there, seeing it didn't make any difference to the pain but it did mean I wasn't going mad!

Report
GoodnessKnows · 10/02/2014 15:31

Thank you, ladies. Although exhausted (effect of being emotional) do feel comforted by your understanding words.
Poo
Tired
Only had one visitor but zonked and mum coming later to sort filing at my own request. Stupid, silly old me. Oh well, I'll feel better once it's done. I'm still not dressed. Meds taken. Bit of food eaten. Lots of fluids. Just want to watch Breaking Bad n relax / sleep but have to chase up discharge letter (says to b seen at two weeks post-op: tomorrow - no appt.), DS banned from jujitsu, chess club n awaiting results of his autism assessment.

Report
livelablove · 10/02/2014 15:32

Its great we have our own tame radiologist lost actually we have a few experts here I believe, Matilda is an ex midwife and Pavlov knows all about those horrible forms for DLA or whatever it is now called. So we can get some good advice here.

goodness that last post could have been an aibu to think my dhs family are a bunch of selfish feckers. Honestly how can they not come and see how you are doing and bring you large selections of chocolates? How can they not see the difference between a little rehabilitation outing and a family lunch? Perhaps your dh is to blame for telling them you were feeling bad, surely he realises you want some visitors to cheer you up. And seeing you lying there would have shown them you are too sick for a family lunch too. Well bad marks to all of them, esp your dh. As Losty says though that is why we need MN support thread. At least people on here understand what the pain does to you. Still I have never had major surgery but I hope I can be a little more empathetic towards anyone who has! Btw its great you managed to go out though, that is a good step forward. I would tell dh it takes at least 6 months to recover from a big op like yours and you will not be going to any family lunches until then or never.

Report
Matildathecat · 10/02/2014 16:15

Well I had my standing X-rays done of lumber and cervical spine including a weird one with my mouth wide open (checking my fillings?!). They have already been reported and DH old pal/ chiro has emailed to say they are 'interesting'. Going to see him in the morning. That's not in the guidebookWink.

lost, as a very long time nhs gal I'm super aware of other hcp's attitudes and behaviours. I can say hand on heart I have never, ever treated anyone in any way I wouldn't have wanted for myself or family. ( except when being threatened by very nasty DV partner of a very young client).

goodness, I was very low after my second op so I got a nice notebook and made a list of things I'd like to do. Mostly very simple. I then roped a couple of very close friends into doing them or putting some dates in the diary. Even if it's a few months off it gives you something to look foward to. A nice little outing once a week or so. I found it fortifying. Hope you get some support with ds soon. It sounds very stressful.

OP posts:
Report
GoodnessKnows · 10/02/2014 16:17

Anyone else have a teary day a few days after getting home? Non stop upsets with DH don't help. Pleeeeeease don't PM me about this as hint account n he will go nuts

Report
Matildathecat · 10/02/2014 16:25

Yes. It's completely normal.

Let it out. Be gentle with yourself and remember it's very, very early days.

Recovery is not linear.x

OP posts:
Report
LostInWales · 10/02/2014 17:21

Open mouth = peg view, need to get your teeth out of the way so the 1st and 2nd vertebra can be properly visualised, sometimes if a patient is strapped on a spinal board and can't open their mouth much we get them to open and close their mouth quickly with a long exposure so the teeth/jaw bone blur but the non moving neck bones come out really sharply. I always say being a radiographer is 90% being able to persuade complete strangers to take their clothes off and pose in odd ways for you within 90s of first meeting Wink. YY to treating every patient how you would expect your family to be treated and not accidentally banging the equipment off the heads of the rude ones.

Goodness that sounds 100% normal even without DH annoying the hell out of you.

Report
GoodnessKnows · 10/02/2014 17:49

Matilda, that's such a strikingly true statement and one I should've been told (loudly) on admission (the non-linear thing).
Thank you for that.

Lost, you made me laugh ('even without...'). I think it's a combo.
Thank you so much for that.

Needed to break the cry-rant-cry cycle of the day.
Yesterday's trip out seems so very long ago. Such faded memories, when I know what a wonderful tile I had (even though so basic). And it's not as if I've DONE much in between! Lol

Report
magso · 10/02/2014 18:10

Goodness it is perfectly normal to feel teary after what you have been through!! not only have you had very major surgery, (which is enough on its own to make you feel teary at times) lots of meds (including a GA and lots of opiates which may affect your perspective) you have had the huge strain of waiting for potentially life changing test results. same happened to me once I got results that gave hope of recovery.
Lost and Matilda I am also a secret NHS employee although not in anything useful to us. My colleagues all pull out the stops (and as you say its enjoyable to do a good job)so its odd to come across staff who are temperamentally so different. Being ill and extremely vulnerable and dependent on equipment in hospital was quite an eye opener. I also remember the kindness - from the junior staff and porters.

Report
livelablove · 10/02/2014 18:12

What did you do yesterday goodness? I dont know if i missed your post.

Report
GoodnessKnows · 10/02/2014 18:18

Gosh, yes. The kindness of a barely-there smile that told me that I was amongst humans (when a nurse refused to help me - my catheter had come open and I was drenched, along with the bed).
She was my lifeline in her own quiet way.
Oh, and I made a formal complaint to PALS about a Bitch Face (nurse).

The humour of the theatre staff - especially the anaesthetist who played on it by telling me he was John the Baptist wearing lots of make up (he was black). The smile of the night nurse who looked after me the night after Bitch Face. The Senior Nurse who talked me through things and agreed to take my back drain out when I said only she could do so.
These are the people I remember.

Report
PavlovtheCat · 10/02/2014 20:14

losty he is very young school actually, my consultant. well, age wise, perhaps taught by old school? He did do the scan to specifically check the movement of the vertebrae though, said that lying down would not show if it moved and how much by. I swear he is younger than me which is a) great for confidence and steady hands and b) not so great for experience and knowing he has seen me naked Grin

Sorry I haven't posted too much in response to others. to those who need it to others, good wishes to Matilda. I am off for a good night's sleep as I am going to see FRANK TURNER!!!!! tomorrow in concert. I have taken the next day off to recover. I don't feel too well, sort of bug like and increased back pain (always makes me nervous as viral and back pain has = relapse in the past) so, drugs, early to bed. I don't care if I have to crawl there. I am going and I am having a bloody good time. So So excited.

Report
GoodnessKnows · 10/02/2014 21:23

Pavlov, don't hate me but I have nooooo idea who Frank Turner is (about to google).
However, want to say: have a fucking amaaaaazing day!
It's been the day for fucking here (well, for swearing lots when little ones aren't at home, anyway).

Report
livelablove · 10/02/2014 21:31

goodness I never swear but I would swear at your mean relatives!

Report
PavlovtheCat · 10/02/2014 21:39

Frank Turner is Fucking Awesome! Acoustic rock/folk I gues you would call it? He rocks! He is very pleasing on the eye, which helps a lot when drooling at watching someone play for two hours. His band is called The Sleeping Souls and they are also amazing. It's all just brilliant. He played at the olympics, which sort of meant he sold out a tinsy bit, his roots being in punk rock, but he has toned it town. But let's hope not too toned down! Shall I link one of his rockier songs?

I'm going to. He is going to play this tomorrow. I so wish I was strong enough to be at the front! you have to listen to it all.

Report
PavlovtheCat · 10/02/2014 21:42

Not sure why he sporting a 'tache' in that one though, that's Not Cool. I will show you a better photo of him. So you can see what I am going to have to endure tomorrow Grin
swoons

Report
PavlovtheCat · 10/02/2014 21:44

AND. AND. He has a back problem. He performed at Reading this year after having steroid injections into his spine, and he wore a back brace, didn't play his guitar. He had to cancel some gigs prior to it as he was screwed. So he is One Of Us!

Report

Don’t want to miss threads like this?

Weekly

Sign up to our weekly round up and get all the best threads sent straight to your inbox!

Log in to update your newsletter preferences.

You've subscribed!

PavlovtheCat · 10/02/2014 21:46

goodness you have a lot of time to catch up with tunes. You want to listen to Love, Song and Ire - an early album of his, and then Tape Deck Heart, his most recent one, the tour of which I am checking out tomorrow.

can you tell I have a little crush on this man? Only a little from afar one seeing as I am a married family woman now. But, well, no harm in a bit of window shopping with some good music to listen to eh Grin

Report
livelablove · 10/02/2014 22:41

Hey, I like him. He is cool and he is one of us! You are sure to have a great time. Not too much jumping up and down now, he will understand. Also try to avoid letting DH see you drooling Grin

Report
GoodnessKnows · 10/02/2014 23:53

Hahaha
I'll click those links tomorrow (after 7.30 blood tests) but for now, I'll share my secret:
I'm a big Prince fan. Well, was.
HUGE
The 'sing along in my room' variety though. Lol

Report
Please create an account

To comment on this thread you need to create a Mumsnet account.