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The Back Story

(1000 Posts)
Matildathecat Thu 03-Oct-13 16:02:03

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)

PavlovtheCat Sun 09-Feb-14 08:47:32

Just a quick post to say whatfun ffs she is a nightmare! and wrong. If you cannot walk, then your functions are affected. And the surgeons DO operate for disc issues such as yours, my disc (singular) was pressing won a nerve, so that bit was removed. And. It is NOT her decision to make re surgery, it is the surgeons. So, go to see the surgeon and hear what that professional has to say. IF he says no to surgery, then you need to be working with someone who is bloody going to be supportive in your recovery or at least management of your pain. He is telling you it's going to cause pain for year s yet helpful?

Unfortunately, you will read from our experiences that jerks in the medical profession is common, but, there are also some lovely people, so if you are not happy with her, ask for someone else. Is that possible?

Here once his thread, we are developing a Pain Transfer Device, which will be given to all those who have not experienced pain, or to this level, and have No Real Clue what we are going through. In particular, those identified as needing this are medical professionals, partners and colleagues. The aim is to stop them from making such ridiculous minimising comments such as 'you have not been in pain for very long' since June is 7 months! That is a very long time to be in constant agonising pain. She will get it if she uses our device for a week grin we are also designing a proper comfy chair with all the mod cons for those with back problems! that is also fashionable! and we are great with shoe advice...

You are most welcome here, sorry you need to be, but welcome nevertheless.

You can find the new thread here:

Matildathecat Sun 09-Feb-14 08:11:20

whatfun she sounds a lot above herself and right up herself. Wait to see the specialist and he may say something different. Maybe not but it will be his opinion not that of the physio.

Well I believe this thread has maxed to the limit. I guess that means we are benefiting from a place where others get it so I have taken the liberty of starting new thread.

See you there!!.xxxxxx

GoodnessKnows Sun 09-Feb-14 06:59:10

Two words for her: controlling bitch

Was going to b 'fucking bitch ' but can't get over how controlling she is. Where do u live? I'm not convinced she's so good that she's worth putting up with that dominating and negative attitude. I have had my fill of horrible and unfeeling professionals in the 'caring' profession. I'd complain if she continues
She is the negative one here, no? You are both in desperate straights and looking for a POSITIVE solution! She, on the other hand, looks set on breaking your spirit to control your thoughts n feelings. Ultimately, she's a physio, not - I repeat nit - a surgeon.

Whatfun Sun 09-Feb-14 02:02:25

I agree. Every time I said something her eg I know people who have had back surgery straight away, and they are completely pain free, she would shout back " how do I know what your friends back is like?" It was just awful.
I think I'm allowed to not understand and to question her. She made me feel like a naughty five year old. In retrospect I can't believe she did that, and called me negative. At the time I just wanted to go to bed and stay there.
I'm going to stick with her as I've heard she's a very good physio. But if she starts treating me like a child again, I will be ready for her.

GoodnessKnows Sat 08-Feb-14 23:00:55

What fun, just read through your intro. Fucking hell. And she told u that you were being negative. Good gd, these people have no ducking idea (I swear when angry or scared, so I've come to learn).
It IS depressing. I think you're allowed a bit of a negative sound-off!
Such a seemingly long road ahead re your pain and the news that surgery won't help n will just give U additional difficulties (scar tissue). But wouldn't it b good to get the news from the surgeon vs Cold Physio Cow (CPC)? Just a thought.

GoodnessKnows Sat 08-Feb-14 22:53:07

What fun , go ahead n moan. Hopefully you'll smile a while down the road. RL is the place to stick a fake smile on if you feel you must. This is the place, ironically, to be real. And I'm sure I'm not the only one who's been unable to lift the edges of my mouth before.

livelablove Sat 08-Feb-14 22:30:56

Hi whatfun I am shocked yet again by someone being badly treated by a medical person. I am not sure she is correct about surgery. But if she is it is certainly a horrible way of telling you. I would be interested to know what others on here who know more about surgery think.

Whatfun Sat 08-Feb-14 22:26:02

Thank you Lost. I would love to join you.
I am currently in bed with a book, my phone, a hot water bottle and a cup of tea. I feel shit.
My arthritis has flared up from lunchtime onward. Weather related? My cystitis is not responding to the antibiotics, the morphine is making me go a bit woo and I'm trying to reduce the Gabapentin. It's making me very thirsty, shakey and constipated.
Just to cap it all, I have to go to the dental hospital on Monday morning. The Plaquinal for my arthritis has caused Lichen Planus in my mouth.
I am aware I am doing nothing but moan. Sorry, I'm not normally like this. I'm a bundle of joy me.

LostInWales Sat 08-Feb-14 22:19:04

Those look lovely, I know my physio is obsessed with my arse not falling lower than my thighs but personally all I look for is arms so I can heave myself upright more easily wink

GoodnessKnows Sat 08-Feb-14 22:16:07

Sorry for cross-posting. I've not had time to breathe n read other people's comments but I hope to catch up and send you all my best wishes.

Pilates is best done in a class as it's boring and moreover easy to do wrongly. I thought it was easy until a teacher altered my position by about 1/4 mm and IT HURT like hell (muscles). Lol
I think it's amazing. But hate it and will go to a blummin class when my body is ready.

I saw those chairs. Think it's any better than the dutailier nursing chair I have at home?
Are the ticking ones ok?
They all look quite deep n I don't know whether I can lean back or need a more upright one.
But I suppose I'd need to go n try. Not needing or up to sitting in a car for a journey to ikea. The ikea side is:
Which one?
Not desperate for an answer. Just wondering whether to sell my dutailier. Can't sit low or lean back into a chair now. Would it ever b a good idea? Just thinking aloud.

LostInWales Sat 08-Feb-14 21:55:33

Wow well she was positive and cheerful wasn't she? hmm.

You can come and join me on the 'my body hates me and is trying to do me harm' bench if you like? I have <deep breath> idiopathic inflammatory spondylitic arthritis (basically the bones which make up the articulating joints in my spine are going a bit crumbly and I have some awesome bridging spurs joining up the vertebral bodies) which is similar to yours in that it is my immune system that is fucking up all my joints, I'm also lucky enough to have two annular tears in my discs. There are lots of different approaches to pain management and I'm sure there will be lots of help and advice from the lumbar spine pain brigade to help you.

Whatfun Sat 08-Feb-14 21:44:44

Hi, can I introduce myself?
I have had excruciating pain in my lower back since June. It's fine when I'm sitting down, but stand or walk for a few minute and its excruciating. It then goes into spasm, which takes about half an hour sat on a chair, with head down by by knees, to become anything remotely bearable.
I've been to my Gp. Given Co Dydromol. Useless. I am currently on Naoroxen, Gabapentin (useless and sent me bonkers), Amitrityline and 35mg morphine patches. Still not pain free.
I also have psoriatic arthritis, so see a rheumatologist twice a year. I also see his physio every week. As soon as the back situation reared its ugly head, she gave me Pilates exercises to strengthen my core. I have been doing them religiously, twice a day since June. They have done nothing. My pain is getting worse on an almost daily basis. My life has stopped. I can drive, but couldn't possibly walk round the shops. I live in a village and used to walk my dog for an hour every day. I can't do that. I am putting on weight as a result. Tbh, I didn't really need the consultant to point it out, I had noticed all by myself.
I have had to fight to get an MRI and a subsequent referral to a spinal surgeon. The MRI showed that I have two discs between L3,L4 and L5 that have radial tears and are sitting on my spinal cord.
My consultant has referred me to the spinal surgeon,and I have been referred to the spinal physio who works with the surgeon. Are you keeping up so far?
I spoke to the new physio in the phone last week. It was awful. She had my MRI in front of her and said that there is no way the surgeon would operate. It did not warrant it medically. All I could hear was my final hope of a pain free existence being taken away. We had a bit of a spat, but I agreed to go in to see her.
The day I saw her I was feeling crap. Bad back, arthritis flaring and sodding cystitis that was getting worse by the minute.
I asked her again about surgery. She told me that they don't operate just for pain. Only if the disc is causing function problems will they operate. She said they come out of surgery with their function returned, but still in pain. They also now have scar tissue to deal with. I was so upset that I cried and argued throughout.
She told me that I hadn't been in pain very long, I could expect it to be several years. It might also be that the most they could do is get rid of 50% of my pain. I would just have to learn to live with it. I sobbed. I was so fed up. Last year was the worst year of my life. All the stress from various events is still present.
This cheerful news was the final straw. She told me that I was being very negative and perhaps I should go straight to seeing the surgeon. However she was confident that all he would do is refer me to her.
I agreed to stay, so I am seeing her on Thursday. Really looking forward to ithmm
Sorry this is so long. Thank you for reading.

LostInWales Sat 08-Feb-14 21:37:11

Well life would be so boring if I just sat in sensible positions all day grin plus my dogs would hate me. It's great that your are starting to get back to 'normal' I think the most frightening thing about back pain is the panic that it will always be like that and you are broken forever.

livelablove Sat 08-Feb-14 21:21:19

losty I guessed you were like that and like to be busy. Cake sounds amazing. I hope that your injection is starting to work.

I am watching the pilates DVD it is a bit boring but going to give it a try.

LostInWales Sat 08-Feb-14 20:49:13

I only have myself to blame for sore days, I get up and think 'today I will have a good break, read a book somewhere I can get nicely horizontal' then before I know it I have tidied up the play room, done two loads of laundry and walked the dogs, it's lunchtime and everything is screaming at me in pain. I should learn really! <she says back from an intensive session decorating a cake so it looks like a ball pit with Sheldon jumping out shouting 'bazinga'>. I did a lot of being flat as well though, it does really help. I am also sitting here thinking hard at my left upper back and thinking 'you know, that really doesn't hurt' is it the lying down or the injection? Don't care, I'll take whichever smile

<admires Pavlov's 'swish'> Nice hair wink.

livelablove Sat 08-Feb-14 20:13:54

losty hope you enjoyed your day resting.

pavlov glad you have nice hair again! Now you need a new outfit to go with it.

goodness I have heard good things about pilates. I have a DVD of pilates for back pain and I am going to watch it this eve to see what you need to do. Tomorrow am going to look at chairs. I do like the poang but there is no Ikea here unfortunately, and I want to try out the chair before I buy. So going to look in a local shop and see what is there.

GoodnessKnows Sat 08-Feb-14 14:40:01

Live, I think I've remembered that (fading already). Bad sciatica but family back probs and still suffering from sciatica. You're educating yourself in process of trying to get better and prevent future problems. Is that right? I
I know / have heard that Pilates is supposed to be fantastic in prevention if back probs. takes the pressure/ weight or something through 'the core' vs back. You know all that, I'm sure.

PavlovtheCat Sat 08-Feb-14 14:12:30

losty sorry you have had increase in pain! enjoy your laying down afternoon though, hope it helps.

PavlovtheCat Sat 08-Feb-14 14:11:26

Oooh yeah, I love lists! I love making hem much more than the content half the time find that at work, make a list of todo, then get bored with doing the stuff on it. So make another one!

We were about to go on a windy drive to wembury Bach to check out the 20ft waves, but DH has got cold feet as the wind is picking up. So now I am stuck indoors. Boo. I wanted to take my camera.

On the plus side, had my hair redone <swirls around> it's a bit shorter and darkest than planned, but properly cut p. DH had been telling me the other cut was fine. But even he knows the difference between a shit cut and a good one now! I was properly looked after too, proper head massage, coffee by the bucket, lovely!

Back is same as usual. Not horrendous, not pain free.

Glad you are happy this morning goodness. cowmop so sorry you had such a shit experience with the doctor sad there seems to be so many incompetent medical professionals about! it's scary.

livelablove Sat 08-Feb-14 11:55:59

Oops and we will make pavlov list them as she loves a list!

livelablove Sat 08-Feb-14 11:52:39

Hi goodness glad you still sound happy.
We were going to make a list with little summaries of all the regular posters, but we never got round to it. Maybe we could start that up again.

Tbh I am almost recovered now, from a bad episode of sciatica. I still have a few issues but am working on them with physio and exercises. I am mainly still coming on this thread to get advice on getting my back as healthy as possible to avoid future problems- and of course to chat and hear how everyone is doing. I have got quite interested in the subject now too as I am trying to educate myself on how to look after my back. Actually almost everyone in my family has back problems and so I was thinking I hope I can pass on some of what I am learning to my dd so she can have a good chance of avoiding any problems she may be prone to.

Well you probably won't remember all that grin but maybe we will do those short summaries we started and

GoodnessKnows Sat 08-Feb-14 09:33:46

Lost, exactly. No Himalayas in the Boonies!
This territory is relatively well mapped out and has professional mountaineers stationed at hot spots all over the place. Will find out more after next week's care plan meeting.

Telling asleep. Taken my 8am drugs

Would anyone mind summarising their own 'back story' as now I'm, hopefully, please gd, gd forbid, etc. out of Scary Town, I'd love to know what's going on with you all. Just don't seem to be able to retain anything. Nothing. I'm able to remember if reminded.

LostInWales Sat 08-Feb-14 09:22:38

goodness one of my first thoughts today was 'I hope goodness is feeling happy this morning' I know the road ahead isn't clear and smooth but at least it doesn't go over the himalayas. Now save me a seat on the plane out to Matilda, gin slings by tea time in the lovely warm?

Done far too much this week so as the weather is grim and the forecast even grimmer me and my electric blanked are going to have a mostly horizontal day, lovely.

GoodnessKnows Sat 08-Feb-14 09:00:15

Matilda, you stay, send DH home... and I'll move in with you.
You know, I could kinda do with a break.

Matildathecat Sat 08-Feb-14 05:22:11

Well, I never ever thought I would be pleased that someone has a sarcoma. What a weird way life has of making you think differently. I am relieved and delighted for you that this is the outcome and perfectly manageable. The goodness household can breathe again. I love the list. All true esp the bit about friends. OMG what a difference that makes.

I'm suffering big time. We had a brilliant night out on the waterfront. Laser show then a surprise firework display. Met a really old chum of DH who has, really bizarrely become a Dr of backs and is offering advice. Didn't really come away for medical stuff but who knows? Small bits of help and advice can make all the difference.

Hope everyone is surviving the grim weather. It had better improve by next week or I'm staying put! The guest who doesn't leave!

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