The Back Pain Emporium, Internet Shopping, Drugs and Dealing with Doctors. Thread 6.

[MatildaTheRedNosedReinCat]

For anyone experiencing back pain it can be a very scary time. What is wrong? Who can help? How long will this last? We,on this thread are here to support you;offer empathy and help to navigate the almost impossible task of getting a diagnosis and the right treatment.We are not doctors but people who have trodden this path slowly and painfully. We also chat a LOT and welcome all newcomers. It is strictly non competetive regarding pain and no niggle is too minor.

Those who have long term back problems know that the best way to help manage back pain is to internet shop for shoes, bags, and back support devices. Those who are new to back pain, these are important lessons to learn. And here within this thread is where you will learn those lessons.

You will also find other helpful advice on pain management, different treatment options from hydrotherapy and physio to surgery, experiences of others navigating the big and scary medical world, both private and NHS (and abroad from the UK) too, as well as issues around work, being a parent while managing pain and disability, and the impact on the relationships around us. Not to mention the pain of dealing with claiming disablity benefits .

Between us all, we have a huge wealth of knowledge and experience, and more than the practical advice, the jargon and information, we know what back pain is like, how much is affects everything around us, and sometimes, all we need is to have people listen who Get It.

We talk painkillers regularly,sometimes drink wine , have hot water bottles and wheat bags galore, and hold hands a lot. It's potentially all very Unmumsnetty as we do actually show some lovin' from time to time, although we Never Ever call each other hun.

If you have advice, need advice, need a hand to hold, want to do some shopping, then come in. We are friendly. We talk a lot. Come in, have a brew and say hello

This is our 6th thread, here is the 5th, which has links too the others:
www.mumsnet.com/Talk/general_health/a2203923-Back-Pain-and-Internet-Shopping-Thread-Number-5

loon DH has been marvellous, really looking after me, as have my friends, Nurse friend in particular just been a godsend. She phoned 111 for me when she visited at the weekend and insisted a OOH GP come out instead of me going to them 20 mins away. Children have also been lovely, not a huge amount they can do right now, but cuddles, DD encouraging me as I walk, making sure nothing on the floor as I walk to the loo, being my eyes for me, holding my hand. DH has this week off work, then back on Monday, but by that time I should be fine to take care of myself in the day. The evenings are sort with childcare of various kinds until 5:30pm as I can't drive to get them (mixture of after school activities at school, or that they can be taken to by parents of other children, over to friends for tea some nights and after school club too, until DH finishes work). I am hoping to be driving in 4 weeks, but right now, 1 week on I can barely move my neck! Fucking typical, as it's not my neck I have had surgery on!

Not sure if this neck this is part of the CSF leak or something else - muscle is rock solid between shoulder blades and hurts like fucking hell, can't move my arms easily, but tramadol and oramorph help but mean I can't stay awake with the children here. However, can't bear the pain. The thing that makes me think it is the CSF leak is that as it gets worse and worse, so does the headache. GP said take diazepam if I have muscle spasm, so she seems to think that's not unusual.

I have my stitches out at GP surgery friday so will make a docs appt at the same time to have a catch up about it all.

Sorry not replied to other's posts, I will tomorrow, I hope, when I feel better. Mornings seem the best for me, by afternoon/evening I am fit for nothing

Hi all
Sorry I haven't been around, work has been so mega busy and I'm in so much pain when I get home that I'm done in for the night.
I haven't managed to read all but wanted to say a HUGE congratulations to Ally and send get well soon vibes to Pavlov.

I have a date for my MRI! WOO! 1st Feb, will they tell me anything then or do I have to wait and go back to see the specialist? Also am I allowed to ask for a copy of the MRI?

Hope you are all as pain free as possible

Brilliant news Ally!!! We need a champagne emotion!

At last an MRI date for you Tickle (still waiting for mine). I think it unlikely you will get results on the day. I have always had to wait for the results to be sent to the specialist and then either an appointment or the report to the GP- although I have not had a back MRI. I asked for a copy (on a disc) of my sinus MRI and had to pay about £10 I think. This was because my NHS surgery was cancelled ( as you will know the planning for a parent/carer being in hospital is complex!) and my DHs health insurance allowed me to go privately at that point - it is primarily for him and needed the MRI ( I was able to get a date close to my original date so all the childcare and time off worked fine). The only difficulty was the systems were slightly different.

Pavlov sounds like your local GP is looking after you well. The neck pain sounds awful. I found even the slightest head movement would worsen the thumping in my head, but only remember neck stiffness, not as you describe. I do hope it eases. Thinking of you and hoping the best for your recovery. I'll try and do it right this time

I feel a bit of a fraud being on this thread at the moment as my back is reasonable at present - not that I am complaining. Other bits of me are not so good - but I am finally managing gently without a wrist splint so progress. Just need to sort my ear out (middle ear infection - very deaf). Ds made a huge mess today - pulled all the many DVDs out(and tipped out the discs) and tipped toys all over my nicely cleaned floor. Grr. It will take me hours to clear it up tomorrow. I did not hear him tipping things up despite only being in the kitchen end of the same room getting tea. I use a long handled dust pan and brush for the toys - with 'help' from ds for the ones that won't brush up - but the DVDs require sorting . Tempted to remove them!!

Bravo for Ally!!!! . So delighted for you. Really hope you have a great big treat lined up, you really deserve it after so much soreness and worry.

Pavlov, so sorry you are having such a rough time. Such bad luck. I'm glad you are being well cared for.

To all others, I'm reading and nodding. Sorry it's hard. Maggs, do stick around! as an old hand at back troubles you have lots to offer here. You must be a very patient woman,mi would have been very or even at the mess

Hi. Had a crazy few work days, coupled with a terrible cold for us all, so been dragging ourselves along. I'm terrified every time I cough or sneeze in case something goes. We also have a fair bit of snow, and I'm really scared I slip or fall and the back goes again. Argh!! Having a lot of tightness in my back, kind of above my incision, but think this has been how I've been carrying myself. Stupid girl.

So sorry to hear of your troubles, Pav. The CSF leak sounds awful. Can't check back for names as I'm on the app, but hoping all of you suffering with flare ups, and general pain are feeling slightly brighter soon.

Don't leave Mags If you can't be here then neither can I!
Pavlov So sorry for your problems. I was re hospitalised after surgery but they didn't think it was a dural leak - firstly because - I think - it didn't ease when lying down and also because the surgeon was adamant that he hadn't nicked it. I always thought afterwards that it was related to the amount of opiates I'd had but who knows. Anyway - talking about myself again - my point was - I sympathise with crippling head pain and the stress of organising family life after surgery - not easy. Remind me to tell you of my school run sit on scooter adventures!

berrie I bet it was csf leak you know. I didn't even discuss this with surgeon. GP was certain it is what it was. And the crippling headache has been shocking for sure yes. It annoys me when surgeon's don't acknowledge errors. It's not like you are gonna sue them for it, as CSF leak risk is noted at time of consent, and likely before too. It was for me. It's just one of those things when they go near the dural sac, but it does make me wonder if this means Mr S himself didn't do the surgery as this is routine surgery for him so seems a silly mistake for him to make.

Mags you are not allowed to leave, you are one of 'us'. This place here is not just for current back pain sufferers, it's for all of us who have been, are currently, and may again the future suffer from back pain. And it's nice to hear people coming back and reporting reduction in pain. You are one of our resident posters now so don't disappear

Being unable to do much other than lay flat (and most comfortably on my side) is that I have spent money online. I can't post shitloads, but I can click buttons to browse pages. Just bought more clothes for my little ones. Well, they have had a growth spurt!

Pavlov, good to hear you're being so well cared for - you deserve it. And glad you're able to enjoy some internet shopping at least!

Wishing a low pain day to everyone.

Thanks guys and also thanks for all the support through tonguegate!

Sorry to hear so many of you struggling - I only have a trapped nerve in my neck to annoy me at the minute - merely an annoyance!

Ok - I am still here, thanks. I have gone back to a little gentle Pilates, now I am feeling less under the weather. I have restored only a small part of yesterdays chaos, but am rather overwhelmed - so resorted to the big list. Next item is deliver a letter by hand (to avoid delays) which gives me a break from the chaos.
Glad you are feeling well enough to internet shop Pavlov! Good sign! Hope you have some lovely goodies on their way.
There have been some mega chesty cold bugs this year. I think we must all (on this thread) fear coughing and sneezing, but I hope your families colds are fading away into good health Casper. No snow here (home counties) yet - but its clear cold and sunny. I have a pair of snow boots (originally bought for ds when he had similar sized feet to mine but he grew out of them)- they are very granny style but who cares? I have been known to turn up at work in full mountain kit (boots and sticks) rather than risk a fall (it was a hard slip down icy steps that started my trouble)- we live in the sticks so it can look very odd when you get out of the train in the city at the other end!
Berrie sorry you had a difficult time post operatively. I know CSF leaks can occur spontaneously (although mine was probably running full pelt face first into scaffolding whilst looking down desperately trying to catch ds -then a fast moving fearless pre-schooler who looked about to test gravity - I caught him)- so I imagine all the trauma of surgery could be a risk even without a nick. Our personal experiences are part of this thread Berrie so it's fine I hope to mention ourselves.
Hope everyone is having a better day.

Ally I'm so glad to hear that all you've been through has been worthwhile

Pavlov how are you feeling today? Hope you are making progress.

Can I ask if something (I suspect a disc) is causing pain, does it do more damage to take painkillers so that you can do the movements that would normally cause pain IYSWIM? I get that being more relaxed is never a bad thing but I'm terrified of making it worse cos it's bloody bad enough, as I'm sure you'll all understand.

Well I am not an expert but until others come along I would say take pain killers but be gentle Hexie! Pain and the protective muscle spasms that it can trigger are generally unhelpful for backs.

Hexie, I'm going to be honest! I doubt if you will get such amazing pain control that you are able to start doing gymnastics. If you are able to move more easily, do gentle exercises and do some day to day stuff that's all considered to be good. Obviously be careful but as I say, you won't be so pain free you forget you are injured. And still rest. Take the drugs.

Pav, I think that in a top teaching hospital they kind of expect to have high level students ( trained and quite experienced doctors) doing the surgery with GS acting as the assistant but overseeing the op and intervening and helping where necessary. I know I was very surprised and a bit miffed that this happened to me. Unless you stipulate and it is agreed that only the consultant operates this happens.mi did feel a little cheated. However, he wrote up post op notes so had very clearly been highly involved. In my case notes he commented on scar tissue being highly adherent to the dura and therefore left. I wonder if there was something similar which made a minute nick in yours.myou can imagine that tiny nick tearing more perhaps when you started to mobilise ie go home. Just one of those things but still very unfortunate. For those who have never undergone surgery please listen to all this . Surgery carries real risks.

It's ironic that I paid to have my first surgery done privately in order to be certain I would have the consultant operating . Since re-categorised from surgeon to butcher .

Am in awful pain. Feel stressed with decorating, visitors, too much to do and zero inclination to do anything. Have just cancelled tomorrow mornings outing and feel so relieved. I never think of just cancelling. Should do it more often.. Am on my bed, with drugs and am not moving for a long time.

matilda I don't feel too upset that Mr S probably didn't do the actual surgery. he was definitely there, as he spoke to me in recovery about how there was significant pressure on the nerves and that he felt confident the nerves were now free and clear from pressure. I will have a good chat with him when I see him about what might have happened. The notes from discharge stated that the surgery was 'uneventful' so they obviously didn't know they had nicked it. It was a very clearly highlighted risk, which Mr S explained to me in person, wrote it in my letter recommending surgery to the GP, and it was explained in the hospital too. I was told, out of all the risks that go with spinal surgery, the CSF leak, although not common, is more likely to occur than other risks.

The woman in the bed next to me was in due to CSF leak, worse than what I have (her wound was leaking) and she had been in 10 days post op as they were expecting it, the doc said straight away he had caught it (not my surgeon). She then went home, and returned again, and when I saw her, she was in total, in hospital 4 weeks with a couple of days at home around christmas and had not left when I did (although it was looking hopeful she would be going home in the coming days). Funnily, she was also told there was nothing wrong with her back that warranted surgery at A&E, (thoracic) and so she paid for a private MRI and was told it was pressing on her spinal cord and she had surgery there and then.

Anyway, I'll recover. I have been up and about today, not doing stuff, just laying on the sofa, standing with DH while he made a coffee, had a wash and change of clothes while he changed the bedding and put a wash on, watched Marco Polo episode on Netflix, sad I am almost at the end of this series! I am now back in bed, after being up with the children, who are Really Very Loud!

Horrific headache is gone, left with fuzzy head, light heated when I stand, and some pressure in my head that I can still feel. My ears are ringing, and I am strangely a little deaf in one ear if not laying down. Sound is amplified and when people talk, it makes a little musical note in my left ear. Light still a bit bright, and I threw up this morning, but I reduced my anti-sickness meds from 2 different types to just one. so that might be it. It's definitely going in the right direction, just slowly!

I have had some back and leg pain today though, as I threw up, I felt my right leg twang, and it make me swear. Not really through excess pain, but fear it might be returning. I was told to expect it as I increase movement, for a while, but didn't realise that walking to the kitchen and standing there for 5 minutes counted as being mobile .

berrie it's absolutely fine to talk about yourself! In fact, it's compulsory to make me feel better! We all are here through common experiences and it's good to share those experiences, it helps us know we are not alone with our woes.

Thank you, Maggiso and Matilda.

Do you mind me asking what happened with you, Matilda? Don't worry if you can't be bothered or are too sore to type it out just give me a rough idea where to find the relevant post

So sorry Matilda I hope the lie down helps soon. Are you missing anything nice tomorrow?

You've got me wondering about who did my surgery now! I know the consultant was there as his registrar told me that he had gone round the operating theatre showing everyone how amazingly big the piece of disc that they'd removed was..."about half the size of the pat of butter" he said pointing at my marmalade on toast. " I laughed at that as it seemed fairly small to me! But he told it me in a voice of awe and wonder and wanted to know had I really had no loss of bowel and bladder function at all? No - no I didn't but I have been fucking incapacitated for years and years and sent away with codeine and advice to sleep with a cushion between my knees

*matilda. Please have a Very MNy I am so sorry you are in so much pain. Do you think the patches are going to help long term? Are you feeling better pain wise, or where you managing better before these patches? It's awful when things need to be done, decided, when pain clouds our thinking. Visitors are difficult too, are you able to say no to any more, give yourself some space, or are they compulsory ones? A friend of mine called to ask if I was up for a visitor today, she is lovely, but I sense she is less interested in making sure I am ok and catching up and being with each others' company and more interested in filling her day as it's her day off. I normally don't even mind that some days, I like her company. But, today I didn't want to be her time filler and I just said 'not up for it'. It's not always easy though, especially when the pain is chronic, to keep avoiding people, but it's so tiring when all you want to do is close the door and lay down.

Hope you feel better soon my lovely, I am sending you a spray of the Sanctuary spritz you bought me in hospital, to perk you up. It makes me feel lovely and refreshed when I am stuck in bed

mags how long did it take for you to feel 'normal' again post leak? I would like to be back to normal by the end of the week

There are so many posts I haven't replied to directly, as over the last week I have been somewhat pre-occupied, then not really able to register fully the posts due to my fuzzy head. Now I am feeling a bit clearer so I shall do my best to be less memememe

Sorry you're having a bad day, matilda.

Forgot to ask about your ear, magg - what's going on there? An infection? Hope you've got antibiotics if you need them. I had untreated ear infections in my teens & twenties & ending up having 3 ear ops. as I got something called mastoid disease. In fact that's the last time I had a general - nearly 20 years ago! Must admit I'm relieved I haven't had to for the back so far.

Berrie, that does sound big for a bit of shaved disc protrusion. I read that most are approx. pea-sized. It does seem crazy, doesn't it, that something so relatively small can cause so many problems. I guess there's just not much space in the spinal canal, & I presume some of us have narrower ones than others, too?

Berrie - 1/2 a pat of butter! Gosh. Is that about a normal size bit of disc to remove? I know my surgeon said the bit he removed in my first surgery was about the size of a £2 coin, but I've no idea if that's large or not.

I do at least know it was the consultant who did mine, as I was in a private hospital (on the NHS) and he was the only one there.... But the anaesthetist was possibly the loveliest man in the world! I had a bit of a crush....

Hope everyone is not too sore today. I'm about to leave work and venture out in the snow. Snow boots on and VERY carefully....!

Oops. Cross posted. Wow - ok for pea sized. So my £2 coin bit was quite large. Explains a lot about why I was in so much pain then.....

Cor...if mine was big - £2 coin enormous!!!!
Wish we had snow...
Love snow...