More Terrible Back Stories

[Matildathecat]

This is the support thread for all sufferers of back pain. Acute, chronic, agony or niggles, we are strictly non competitive. All newcomers very welcome. (Though be warned, the language can be a little 'ripe' ).

Here are our previous threads:

www.mumsnet.com/Talk/general_health/1871592-The-Back-Story
www.mumsnet.com/Talk/general_health/1992406-The-Back-Story-Continues

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.

So come and join us for moans, advice, downright rants or just a laugh.

Thank you , he can walk holding one hand and has a Kaye walker an I have a mountain buggy pushchair with mummy hooks on the handle so I can fold and hook it on there save carrying it... But he gets tired and often will want a lift and obviously he can't climb in and out of the car and stuff like that . He is a big 2 year old though so it's only going to get worse ( although I hope he will walk independently at some point ) . I can and do exercise and it does help so
I'm not sure if he is right or not . I'm no expert but have always had a bad back and I'm 40 this year so I figure it's just going to get worse as I get older and more worn .

By he at bottom of post I mean chiropractor .

bish what kind of back pain do you have ? Lumbar? Radiation into legs? You talk about horse falls, you may have done some specific damage that may be treatable through for example cortisone injections depending on type of pain. And perhaps specific physio exercises would help, or a referral to osteo by GP for massage and acupuncture (also available via pain clinic), especially if you find exercising does help. There is a good few options to consider that are not just drugs, but a GP default position is send away with painkillers. You have to fight a little (sometimes a lot) to access the other treatment or investigations. You don't have to just accept this as your fate.

Seems to me you need a fresh pair of eyes on the situation. I suggest GP and ask for a physio referral if he won't ref straight to MRI.

Bad Back is not a diagnosis it's a description. A woman of your age shouldn't accept this without a lot more information and investigation.

But you can improve things immediately with OTC meds without fear of sliding into the gutter of addiction .

Honestly, don't just ignore this. For one thing it sounds an expensive situation!

Hellooo!

I am delighted at having a successful day. Finally got to see the GP, proper GP, that is, who it is impossible to get an appointment with and I have waited 10 days.

Anyway, I have Pregabalin ( none of that cheap Gabapentin substitute) Naproxen 250, and Tramadol 50. Yay, drugs!

He actually said that the PCT will come down hard on him for prescribing the Pregabalin as it's so expensive, his exact words were "if I lose my job, so what? You are entitled to the drugs that work." Isn't that brilliant? I should have gone the whole hog and asked for Diazepam too, but forgot as was lulled into a lovely feeling of happiness at being understood. Hey ho, don't think I actually need it at the moment anyway.

Also I have had some exciting news which I can't share on here, sorry, sorry, but am fit to burst ( no I'm not pregnant, that would be bad.)

Oh, I forgot. I've been on grandma duty and looked after GS for a few hours today. It was lovely, if very hard work as he is crawling everywhere and wants to do the walking while you hold his hands, bent double, thing. I am slightly throbbing but now I have my drugs I will be ok.

Well done, Downton - so glad your GP was (just about) worth the wait! The news sounds very exciting too.

Pavlov, is it your appointment with the consultant soon? Hope it goes well & that he's able to go through the MRI results with you properly.

Wishing everyone a good evening. I had a great weekend - very little pain & able to walk loads. Yesterday not so good but improving again today. It's done this before so not getting my hopes up too much, but any respite from the godawful leg pain is brilliant & I'm enjoying it!

downton go you! Hope they help. I like tramadol actually for pain relief but not at night time. 50mg is a nice dose to start with. And Yey for pregabalin. Hw daft he will get a bollocking for prescribing if it's the best meds to use. Ridiculous. I don't really like this codrydemol, it's a bid weird on my emotions and tolerance reduces so hardly been taking it, luckily pain has not been so bad until yesterday a few days. Intrigued about he news!!

Consultant appt tomorrow loon thanks for asking. I am still do write my list of symptoms and questions. I need to get on with that. But I need to do my ikea shop and still not got my headphones Ordered. Oh how to prioritise?!!

Ohh, exciting news! Scouted by top modeling agency? Yay for drugs that work. Hope you are relaxing after chasing the scuttler.

Might be able to post something on the FB page. It's private right?

I am scuttled out!

It is .

Tomorrow, pavlov, oh! good luck. No under stating, ok? Can you press him for injections?

I have constant pain in my neck and shoulders . Periodic pain in lower neck which feels like the vertebrae bang together and a lot in my lower back . My elbows hurt all the time and general stiffness all over all the time . I fell badly when I was 11 and it's been painful ever since . Two pregnancies and having my son to carry around has just made it worse .

Oh and I got squashed whilst doing cross country when I was 17 . I just describe it as buggered when asked .

I have seen this chiropractor for about 3 years now and spent thousands trying to fix it ( luckily on insurance ) .It's been better than it is now at times but I think with my ds it's never going to be ok. I do my best to ignore it to be honest as I have never met anyone ( apart from horsey friend) who has the same problems . It's just normal or me if that makes sense .

Sorry you're suffering, Bish. I don't know much about upper back problems - have you seen the GP? I'm guessing any muscular element would likely improve when you're no longer having to push a buggie everywhere, but sounds like there could be more going on.

Re. supplements for joints: I take something called joint synergex for osteoarthritis in my toes. It's got fish oils, glucosamine & various other stuff in it & I think it helps a bit (ringing endorsement there!). I get it from Healthspan. Doesn't make a jot of different to my lower back / leg pain which is discogenic / nerve pain.

Has your chiro suggested any further investigations?

Difference, not different.

Just spotted that you've been having chiro treatment for 3 years! Really does sound like this needs looking into further.

matilda I am doing my list now. I shall add that. I didn't think to ask him specifically but was going to ask him what he means by 'treating conservatively' I also want to ask him about disc replacement. They do it in RDE (Royal Devon and Exeter Hospital) which I can 'choose' to be seen at, and there is a bloody good surgeon there which I was going to ask to see, but I had gone through the whole process for so long that when I got 'given' my neuro appt I didn't want to start it all over again by asking to be referred to there. I was so bloody relieved I just wanted to be seen (didn't know I would be waiting another 18 weeks or else I would have got referred to Exeter) and this surgeon does artificial disc replacement. I am under the impression that hospitals don't tend to share/discuss the successes/specialisms of other hospitals, even though it's all bloody NHS, as I mentioned this to the guy at spinal pathway team and he said I would need to speak to RDE surgeon directly and that would involve referral, but it's not advocated at my local hospital -mainly as there is no trained surgeon there

But, this guy also had told me fusion has to be done by orthopaedic surgeon and there is no one available to do it at my current hospital (because they don't necessarily advocate it at this hospital he says) but then one appeared at the hospital by the next MRI and meet up with this bloke and his view changed! As turns out my surgeon is that surgeon, and regularly does spinal fusion, his view is it goes hand in hand with discectomies, but I don't know for sure if he is the best person - they are two different skills aren't they 'carpentry' (ortho) and 'electrics' (neuro). but, he had to good at both as he did a laminectomy, and was expecting to maybe have to fuse the spine. they don't get two surgeons to do that. But, this surgeon in Exeter, he is known for fusion and replacement disc surgery. Certainly it's not common knowledge that fusion happens at my local surgery as I told school gate friend about possible fusion and her husband works in physio and he told her I must have it wrong/was it in local hospital as they don't do fusion in this hospital.

This reticence to commit to fusion makes my head spin and i don't want to go tomorrow as I don't want to talk about it.

I am not going to get any answers I want to hear. Once apon a time it could have been really straightforward like it is for some people - horrendous back pain that does not go away with conservative treatment, everything is tried, MRI shows significant nerve impingement and the conversation goes 'Mrs Pavlov you have a prolapsed disc, we can fix it by performing a microdiscectomy, these are the risks, these are the statistics of success, lets crack on' followed by surgery, recovery, back to normal. Job Done.

It's not going to happen this time. Whatever is going on in my spine, it cannot be 100% fixed and I know that now. He is going to either tell me he doesn't think surgery is a good idea for whatever reason, and i will be upset as that will only leave conservative treatment which has not been forthcoming to date and means that there is no fixing of this. Or, he is going to tell me he thinks I should have more surgery, for whatever reason, which means the conversation about 15 months ago I had with spinal pathway team about fusion being 'end game' when there is no alternative left that will work is now here, well it means that this is 'end game'. And I am scared that 'end game' is not 'we can fix this' but is 'we can make this better but not back to how you were or anywhere close' and that even if it does not go wrong/is not successful it is not going to fix me and it is hugely risky and I don't want more surgery, with no guarantees for me being ok again.

If I don't go, then I don't have to be disappointed/upset/afraid with whatever I am told, and maybe I can pretend on my good days that it's going to be ok. And I am going on my own as it's holidays so DH needs to be with the children and my BF who would normally come with me if I asked her is working so can't.

Obviously I am going to go. I have been on this treadmill of a waiting game long enough to know if I miss this I won't get another chance to talk to god himself the surgeon.

feel tearful, just want to curl up and pretend it's not a problem any more.

sorry that was, as my DS would say 'epic'.

Oh pavlov, it's a real shame you've got to go by yourself. Is there anyone else who could have the children for a bit? Sounds like you could do with some support.

Thinking of you tomorrow & hoping they can at least give you a bit of clarity about what's going on & what they recommend. It's a hell of a lot to take on board without all the confusing information.

I sort of get the impression the decision might be left to me to make. like 'we will do it if you want' as that's sort of how the letter he sent me read. But, how the fuck am I supposed to know the answer to that? I have not had years of training and experience in medicine to know if surgery is the best thing for me. I only know this, what I am experiencing now is not the best thing for me, is not where i want to be left, but I don't know the answers apart from that. I am expert in my own health, but not this big.

Of course, first step is injections, I won't have anyone cut open my spine again until I have had a good shot at those blasted injections that I appear to have to sell me one and only kidney to get hold of. I do know that much.

DH says he will be 'useless' anyway. Which is probably true as he hates hospitals. Yeah, cos I love them I do.

ok, I feel better. I have just 'spent' over £200 on stuff in ikea. I am pleased to say it's all needed though. table and chairs (cheap but i love them!), some rails with hooks for the walls to put utensils and all sorts hanging off, some shelves which I can attach hooks to and hang cups off too, containers to hang off the rails to put film/foil in (with a little lid!). I would have got so much more (and had beans on toast for the rest of the month) if they did more as delivery.

I am tempted to add a new duvet cover to the list. Seeing as we have an ikea duvet and their own covers fit best…and the children need new pillows. and…

luckily, I am reviewing the list tomorrow with DH before I place the order, and seeing if anyone else wants to add to the order as it's at max delivery costs so won't cost more to add more items, and we can split delivery if they want. Done this before, worked out well as our 'local' ikea is 100 miles away!

I've actually been seeing someone for most of my life in one way or another . I have had X-rays and they said the cartlidge is all gone or squished in between my vertabrae or something along those lines . Either way it isn't fixable .