Back Pain and Internet Shopping. Thread Number 5.

[PavlovtheCat]

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.

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, 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 and say hello

You will see just how much we do talk if you read our previous threads (where you may glean lots of answers about pain relief, surgery etc, best winter boots etc):
www.mumsnet.com/Talk/general_health/2049637-Back-Again-Back-Pain-Support-Thread
www.mumsnet.com/Talk/general_health/1871592-The-Back-Story
www.mumsnet.com/Talk/general_health/1992406-The-Back-Story-Continues
www.mumsnet.com/Talk/general_health/2023274-More-Terrible-Back-Stories

Good luck mulledpavlov Glad you ate getting it checked out. So I went to the neurosurgeon hoping for a magic injection. He looked at me (crying with pain until flat with legs raised) looked at medicine (tilidin100mg, diazepam5mg, ibuflamm600) looked at mrt pictures and pointed out that the disc Is touching the nerve in 3 different places. He suggested surgery to get it away from the nerve as over a month of acute pain is too long. He'd be able to offer me a slot next Tuesday. I'd be In hospital 5 days. Then 2 weeks complete rest at home, only a little walking daily. Then as I have a small baby he would avoid the 4 week residential rehabilitation but prescribe intensive physio and rehabilitation at home. He thinks physio in my present state a waste of time. He has an 85% success rate. The other 15% see no improvement. In his opinion often because they waited so long permanent nerve damage had taken place.next Tuesday feels pretty fast to me. I asked why we can't go for the magic injection. I have to be honest, I didn't understand his answer.

DH says in his opinion, we can do it now or wait until January. But if I've not improved by January we'll have to go for it as I can't stay on my back forever.

I've been lucky enough to be in hospital twice in my life - once to be born and once to give birth. I am very frightened of an operation in the vicinity of my spine and a major nerve. Sorry for mememe post. Trying to decide what to do. Any suggestions gladly read.

I think I posted to Pavlov a couple of days ago my Bil (very sporty and active) had back surgery and has actually been back skiing since, I think he got in quickly too. I would go for it personally, if the disc is touching the nerves in three places I don't think you'd get a massive amount of improvement from an injection. The ones I had (12!!!!!) only gave me two weeks relief which was disappointing . As long as you can ensure you have support in the weeks after the op then go for it. You could be doing really well in no time at all.

Pavlov I am most insulted by your DH, LostyTheSnowman is about as witty as I get you know, humph.

Wow freedom,four month residential rehab programme!!!! I'm impressed. I think you are probably struggling to reconcile the nhs system with the standard of care you are getting. Here most people don't get to see a specialist doctor early enough to make a difference in my opinion and thendon't get enough or any rehab. In your situation I would go for it.but discs are not my thing

Buggeration where's my message fi

ooops sorry about that wad on tablet and thought it wasn't posting

mulled pavlov hope you are home on sofa suitably reassured not in theatre

Freedom I am sorry the news isn't better but with the symptoms you have I am not surprised. ((Hugs)) The people I know who have had successful back surgery have had it for acute disc bulges, endangering nerves. But I have not had back surgery - so cannot really help with your decision. Others will be along later. My friend had disc surgery (which has left a very tiny scar) and she bounced back very well and is far fitter and more able than me. Could your Mum stay if you had surgery next week? I imagine health care and hospitals in Germany are better and nicer than the UK ( where patients are nursed together on wards, and there is no convalescence care).
Losty I am not surprised you were disappointed with only 2 weeks help from all those injections!! Did you get to your new specialist?
I saw the specialist clinic and am now on a waiting list for both lower and upper back MRIs. Depending on the result I could get steroid injections, physio, pain clinic or referral to a back surgeon, or a mixture. She wasn't happy about the intermittent numbness I get ( which has been going on for years), noted reduced sensitivity and strength in the right leg and foot, relative to the left, mild scoliosis, with probable spondylolisthesis (needs MRI to confirm). She wants to rule out cracked vertebrae (had to have lots of corticosteroids but that was after I injured my back, not before- the initial injury was 20 years ago), but I don't think there is anything new or too serious. So all in all after all these years of mostly sub-acute back problems (that my GP dismissed as normal- we all get that, and the physio I nearly walked out on last year dismissing it as poor core strength) someone listened to me and took the symtoms seriously- Phew!
Hope all the other appointments today have been helpful. Thinking of you Mulledwine and inselaffe.

Berrie, poor you. Is anxiety a long standing problem or just brought on by the pain? I was never an anxious type before all this happened but it really does knock your confidence. Do you have a friend who would take you out? I do, she really takes care of me. Other than very local trips I rarely go out alone now. If nobody is around could you build up very slowly?

losty I'm that you have been left without decent analgesia when can you speak to your GP ? (Ours are fab, I called at 8.30 last week and GP phoned back at 9, maybe harder in the wilds). Still you can gaze at your tree o boost your endorphins

pav what's happening? Tell your DH that mulled wing and mince pies are jolly lovely"

Berrie, sorry I missed your post (I keep forgetting to update threads). Similar happened to me when I was first ill (not back - but I was off work a long time). It was partly fear of not coping - or collapsing somewhere and not being able to get back home. Its difficult when your body has let you down so catastrophically- its hard to trust it again! ((Hugs)). One step at a time.
At least most of you have NC'd for Christmas - I have thought of something but haven't a clue how to do it and have forgotten my new password. Well done at sorting yours out Berrie!

Berrie crying can be very cleansing. But I'm sorry you feel rubbish. Being unwell is incredibly stressful. You're not going on at all.

Thank you. I did feel better after a good sob but it was really indulgent crying since no one died, I'm not in pain - I'm just a bit mental! I think it was worse today as I felt like crap Mum for not going out to get things for the children - it was guilt. I think that I have it all the time now but manage to hide it from myself. I am able to go about normally with the family at the weekend. I am able to go to work. I can convince myself that I have so much school prep, laundry etc to do on my days off that I need to stay at home. I struggle during the school holidays because of the guilt about not taking the children out much. I had panic attacks this summer when I did.
I've struggled with depression in the past but I'm not depressed. I don't even feel particularly anxious because I avoid all situations which make me so...sigh. I dunno. Matilda - I don't have a particularly good network of friends. I don't tend to develop friendships easily because I avoid social situations.
Again - I am sorry because there is some big stuff on here today but just felt so low about it today.

Have said this before but Pav and freedom my discectomy which was giving me very similar symptoms to you was really successful and ended my many many years of pain. I think if I hadn't stepped in the empty washing basket and skidded backwards falling on the worktop last September , I wouldn't be talking to you now! Best of luck to everyone!

freedom, I'm so sorry, I didn't update the thread when I posted earlier so didn't see your news.

Ok, I am possibly not the person to ask for reassurance about discectomy. But here goes. I've now had long, detailed discussions with top neurosurgeons, lawyers and barristers about the rights and wrongs of offering this surgery. Your type of situation is, apparently, pretty much the 'best' in terms of success and yes, you can get completely better. It's much more foggy when the disc prolapse is small or the main presenting feature is back pain. In nearly all cases you do eventually get better but that can take up to two fucking years! And, what's worse, if it's not better then! the surgery is much less successful. We had a poster on here a while back in this type of situation. I doesn't know how she is.

There are lots and lots of people who have this done, we all know them. They don't post here because they are fine.

And the aftercare sounds great. Five days in hospital sounds quite a long time. If you really want to go home sooner there's no real reason to stay that long. You can be sore and sleepy at home more comfortably than hospital (in the uk, anyway).

If you feel you'd like to wait I think I would agree. Do you have any personal recommendations about this surgeon? Did you like him? He sounds honest about his outcomes. Is your German good enough to ask every question you can think of? Did he discuss complications? All difficult questions, but ones that need discussion.

Enjoy your mums care as much as you can.xx

Berrie, you've got friends here . You are so entertaining, I can't believe you don't find it easy to socialise, or is that just when you are feeling low? The author of the Ratgate Saga has excellent credentials as a chum.

Seriously, though, if you are sure you aren't depressed, please still see your GP and consider counselling, meds or CBT. Not going out is sad. Crying about not going out is very sad.

I've made some of my closest friends dog walking. They've been bloody lifesavers regarding walking said mutt but also chatting as you walk (hobble) is so therapeutic. And dogs have to be taken out so no choice. Maybe borrow one and see? (Although obviously you don't make friends on a daily basis, though most walkers stop for a few words).

Matilda Thanks
The dog has far worse socialisation problems than me! We have to go to a very big space faaaaar from any other dogs!! and if a car goes past on the way there he tends to bite me

Oops sorry. Am I correct in recalling this is the sofa eating dog. Ah well. At least you have each other .

Home. Will read and respond in a bit.

Had emergency MRi. nerve is compressed (still) at two levels (i know!) but no clear signs of spinal cord compression, which is all they were interested in, as such no emergency treatment required - they are happy that the nerve compression can wait til January to be fixed (as am I and can rest knowing it's not all gone pete tong).

However, I was so pleased to get the hell out of there after waiting forever that I didn't ask what was causing the lady bit numbness. I didn't get a discharge form, and I got the feeling the doc was about to go off-shift as she said 'i have had a quick look with the neuro radiologist and the good news is there are no signs of red flag compression'. or something like that, and was like 'you must be desperate for a coffee, Warrens is that way' and guided me out

Everyone was lovely though, was not made to feel fraudulent. Doc is a GP in training and said she is not an expert in spinal cord compression and so sought advice on whether I needed MRI following examination, and said that she would have done exactly what the GP did if she was acting as GP, and would have sent me to A&E for expert opinion. Ironic then that the person I saw was not that expert . MRI staff helped me onto the bed, helped me take my boots off, I had a wheelchair and was pushed to the MRI section of the hospital, and back again.

And, get this. I got a staff discount when I bought coffee and pie on the way out. I wasn't asked, like I normally am (have been there with work pass on before for planned appts and asked if I was staff), he just gave me the discount and said he would bring it over So all ended well.

Am in agony now though, as was 'nil by mouth' so watched people being brought cups of coffee (although we all know it would have been warm dishwater) and sandwiches while I couldn't have anything, so missed meds as would have been sick if i took them on empty stomach, and only took tramadol, so now about to neck a ton of codeine and some diazepam, tucked up in bed.

I am off to catch up on the gossip.

holly please don't apologise for 'not being as bad as others'. It's not true that others have it 'worse' here, just different at different times. There is no competition, as otherwise none of us would be able to talk here. This place is a sanctuary to moan, cry and complain about the shit going on for us, as well as the place to talk about internet shopping, christmas decorations and rats in the kitchen

freedom I can't advise on whether to do surgery or not, it's such a personal decision, but agree with matilda in that if you chose to go for this, you probably fit the category of people most likely to have a successful outcome - acute leg pain, not been dragging on for months/years, clear evidence of prolapse. And, the rehab does sound amazing, so much more comprehensive that in UK, and that is probably worth considering with the surgery, the aftercare can make a huge difference, and it sounds like, should you chose to have the surgery, the best possible care will be given to help you recover. They have taken into account you having a baby too, and that is important as they are considering you as a person, not a body to cut open.

berry also meant to say, my own discectomy last year was successful, in that it fixed the nerve pain in my left leg immediately, and if it were not for all the other shit going on, I would have recovered. I actually think that it being left for so long allowed the other stuff to manifest, with constant inflammation etc, although, given the end plate damage etc and the misaligned vertebrae, I think I was probably always destined to be in the % that ultimately was not successful, but if I take away the stenosis and arthritis and simply look at the discectomy itself, it was completely successful. Unfortunately, this time, it appears this surgery is like some kind of 'keeping me going' surgery, as it won't fix me 100%, nothing is going to do that now, but it will remove the nerve pain which is significant and I can concentrate on rebuilding strength in my core to help the back pain.

(sorry for my multiple posts, not making notes and reading posts I want to respond to) losty what are you doing for pain relief right now without the patches or codeine? Are you managing ok?

Someone asked upthread a while ago, and I forgot to answer, about the lidocaine patches. Someone on here has used them/using them, and mentioned them a while ago, and so I asked my GP about them, and if they were effective, and she said, honestly, 'i don't really know, but no harm in giving them a try', got out her medicine book to find out the dose etc, and read up contraindications, then prescribed me some to try. Might be worth trying for those who want to address the specific pain of an area (doesn't help nerve pain, is local anaesthetic so only helps the area it's on). I am undecided, but not used them as much as I should as I keep forgetting to, but I do think they have helped. Although, I also think they might have disguised some pain that led me to doing too much, and without my stick on DS's birthday.

Well I guess that's sort of good news, pav. tbh I'm confused by the spinal cord bit. I was under the impression that the spinal cord separates into multiple nerves known as the cauda equina (horse tail). So surely compression of any of these nerves causing saddle parasthaesia is some form of CES? Must check my anatomy. Or they think you are safe for now because not incontinent?

New fury today at local hospital. They have introduced new parking regs and BB holders have to register with them (parking fry for BB holders) If you don't realise this you will get £100 fine. It's done by camera so no escape. Isn't that shocking? Oh, and to register you need to present your BB which, of course, you left in your car.

Parking free, not fry.

matilda I am confused too, especially as she didn't tell me what could be causing the numbness (and I didn't ask). She didn't mention CES, she said 'spinal cord compression' and I sort of presumed she was talking about the same thing. But, she also said she had no expert knowledge as she was a gp in training, but also that she had 'quickly' reviewed it, and also with w neuro radiologist. I was a little because she was not clear about that part, and I was the last person in the MRI scanner that I was seen in, as they shut it up and left with me. Is that person who does the MRI the neuro radiologist, or is that someone else? I guess there would be a duty one. She also apologised for leaving me waiting too long, said she was not told I had returned from MRI. She was lovely in her manner, but didn't really tell me anything, not whether I had reflexes working ok etc, but did say I had 'tone' referring to the finger thing.

I am going to send an email to Mr S's secretary tomorrow, to let her/him know I have been to A&E and that there is now a more recent MRI, could he take a look before surgery. He will be able to review it and maybe explain any changes.

I have no idea why I didn't ask any questions. I was like 'great! I have been here since 1:30pm, it's now 8pm and I am starving! and it's all good news so I can go home!' but on the way I did worry that she might not have really spoken to the neuro radiologist and just reviewed it herself and decided all was ok as she was in a rush to go home. She wouldn't have done that would she?

and I got the impression that she considered my one time incontinence, which I mentioned to her, as possibly child birth linked, as she referred back to me saying I had children, asked me if I gave birth vaginally and what my usual pelvic floor was like and did I ever have moments when I put the key in the door and need to go badly and sometimes not make it. She was less concerned about it once I told her I had given birth to two children.

Wow. So much has happened on here today!

pavlov I am glad it was good news and you got your coffee in the end!

freedom Being new to this as well, I have no advice to offer, other than offering a hand to hold and having read what the others have written their advice sounds sensible. Could you make a pros and cons list and talk it through with your Mum and/or DH. Maybe also think through how you would feel in each scenario - trying to continue with low intervention; having the operation and it not working; having the operation and it working. I find that sometimes when I have to make a tough decision that trying to imagine myself in those scenarios can give me a gut instinct as to which is the right decision for me. Please don't do this if you think it will make you more upset and certainly not today (although it's pretty late in Germany at the moment so hopefully you are asleep!) as you've had a tough day emotionally - take some time out first.

Thank you for the PM - I will respond once I've posted this :)

Berrie Echoing what all the others have said. Please take care of yourself. Every parent brings their children up differently. Yours aren't missing out as long as they are growing up with a Mum who loves them, which they are :)

My update - the clinic was okay. They were (surprisingly!) really nice. The physiotherapist was very quiet. He thinks that because I have a good range of movement (although painful) that it is nerve damage/something to do with hypersensitivity rather than anything physically wrong with my spine due to my brain getting scrambled so it can no longer properly interpret what the body is telling it. He said he has seen it before in car accident victims at much lower speeds. He said this would explain why it moves around my body and also hurts in my back away from my spine (he pressed very gently and it felt like he was pushing really hard so much so that it hurt... I couldn't see what he was doing so assumed he had pushed hard and later he showed me on my arm that he'd very lightly tapped my back. That was unbelievably freaky ). The only bit he wasn't sure about is the second piece of pain I have between my shoulder blades. He said that feels wrong (not sure what word he used) but is happy that my MRI can stay as the 23rd December.

I have a new GP - was booked in anyway for more Tramadol and the physiotherapist called her beforehand to put me on something else. So I have to wean myself off Tramadol this week and onto some kind of nerve suppressant that should hopefully deal with the rest of the pain. Best case scenario: it's just the nervous system gone wonky and I need to take these pills for anything up to a year until it eventually calms down (not sure how I work in this time... that's the only bit that worries me), worst case: it's the nerves plus something unknown so I need to wait for the MRI. Side effects of the new drugs include extreme tiredness so I have to take them before bed. I'm looking forward to getting rid of the tingling and Tramadol to be honest! I have a second physiotherapist appointment on 9th January to discuss all the results and put a plan of action in place.

And the new GP is lovely. Her first day back off maternity leave and very sensible and nice.

Right. Off for my Christmas namechange...