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.

Yes, yes to lifting your leg.

I made the mistake the other day, of saying to DH "look I can't even lift my leg", and promptly did a little kick and nearly fell over!

Oh the pain.

I am also starting to put on weight. I know it's probably going to get me killed to say it as I have never had weight issues but it's something that has never happened to me before, even when PG i didn't really put on weight as I was so sick throughout both of them, so to have it creeping up made me look like someone with an unhealthy problem with my weight when the nurse weighed me this week! She was like 'you are in normal range' and I was like 'but I have out on 3 lb!' (from my 'normal' weight, actually put on more as I have been under my normal weight for a while, I have put on about 7 lb in about 3 months).

mormin' all, sorry to hear several of you in bad pain, wish i had a magic wand for you, really do. pavlov it seems to be sod's law with kids and back pain as soon as it gets a bit better, they do something that requires movement you shouldnt do or gives you pain later. That's kids for you. couldn't dh have kept dd away from you for a couple of hours so could could feel a bit better sleepwise.
nancy66 you have hit the nail on the head- I too worry about it becoming "unexplained, can't do anything , sorry" situation
Friday today- my fav day of the week. I was born on one too. The real beginning to the weekend. not that weekends mean anything to me presently but still like the FRiday vibe.
Less of the pubic bone ache today, hope it stays like that, felt very sore last few days, bit like matilda's cricket bat feeling but on the front, not pleasant.
"last" diazapam pav, will it be possible to get more, you are in a very high level of pain right now, they have to give you something to deal ith that surely? are you resting fully since you have time off work- it is hard to adjust to that if you are a very energetic person usually. or do you have to keep moving to stop seizing up?
downton the rubbing of a hurt area because of "gate theory of pain"- that there are gates that open and close the channel along which the message goes to the brain, telling you to feel pain. certain things make the gate open or close either a bit or fully- heat, rubbing, etc because they increase activity in the cells around the affected area and close the gate. hope i am describing it properly0 can always google, it's quite a well established thory apparently. but it doesn't mean they know everything about pain- as we all know ....

With the leg raise test, I think it goes something like this:

No pain when the most painful leg is raised = almost certainly not disc prolapse.

Pain when painful leg is raised = could well be disc prolapse, but not necessarily.

Pain in both legs = almost certainly prolapse.

I think relevant pain is when it starts with the leg somewhere between 30 & 80 degrees; but not sure if I've remembered that correctly. It wasn't fully diagnostic for me as I get pain in right leg at about 60 degrees but none at all in my "good" left leg.

My MRI shows bulging on the left side too so I do worry about developing pain in that leg as well.

With regard to toxic material from the disc nucleus, pavlov, I remember Sarah Key says that if it actually bursts out of the disc walls, it is reabsorbed into the body within a few weeks.

I've been doing her back block exercises again after a longish break. When I first did them last Autumn I was convinced I'd found the answer to the pain. Got up from the first session & could suddenly bend right down & touch my toes again - it felt like something had "let go" & my nerve was free again.

Sadly that didn't continue, & sometimes it seemed to irritate things further so I was stiffer than ever. At the moment, though, I do seem to be getting less hip pain since restarting - but could be coincidental.

I find the tennis ball self-massage brilliant for muscular aches in the shoulder area, but it's too painful for me in the lumbar region.

I've had weight gain, too - about 7lb in the last few months. BMI still okay but some of my clothes feel tight, so I know it's really not okay! And as an apple shape anyway, that 7lb is the difference between looking reasonably slim & looking 4 months pregnant. It's crept up on me so I'm sure it's just being less active & nibbling that bit more. Have given up all sweet stuff except fruit over the past few weeks but it's not making any bloody difference so far. Hardly drink anyway as it makes me flush (rosacea) so can't cut down on calories there. Just need to eat less / do more - easier said than done.

I Remember a doctor in A&E almost dismissing me as I could still lift my leg off the bed to about 45 degrees, albeit with immense pain, because I wouldn't be able to do that with serious disc prolapse.

I was in A&E because I had been sent there by another hospital with suspected cauda equina and it was the quickest route in. I already had MRI results showing two prolapses and was on the waiting list for surgery. There was a team on standby waiting for me and I was prepped for surgery. Because this doctor didn't sign the form saying I needed emergency treatment I sat there all day with a cannula in expecting to be taken down at any moment. They had to discharge me in the end as the paperwork ( you would think everything was available online but the trusts didn't share patient information) wasn't correct. I was really upset and angry and went to PALS who sorted an appointment with the head neuro consultant a few days later. By then the worry about cauda equina had passed but he took one look at my scan from across the room and said "you need surgery! I'll have you in in 3 weeks."

To cut a long story short, I was moving house and had lost confidence in that particular hospital, so I cancelled and decided to wait as I was still on the list in my local area at a nice private hospital. By the time I got there I had had serious improvement so cancelled the surgery altogether. 10 months later I'm back to square one.

That's ridiculous, Downton! I thought the main point of the straight leg raise test was to give the doctor - probably a GP - some idea of whether a prolapse was possible / likely, so that s/he could offer appropriate treatment / refer you on. And I suppose neurological tests were the only available tools pre-MRI.

But to do the test AFTER you already know you have two prolapses & are in agony - & then to dismiss a positive result that corroborates what's already known - well, it's crazy! What a fucking idiot that doctor was.

Are you still just waiting for physio, or is your GP going to refer you to a neurosurgeon in your new area? I do think you need a repeat MRI. I'm still really fascinated by the fact that your pain disappeared for a good few months, & wondering how that can be. Somehow I guess the compression in your lumbar spine was reduced so the prolapsed discs were no longer pressing on nerves? Do you have any theories? I know pain can just go away with disc prolapses but thought it was unusual after the first few months.

My neuro consultant told me that your body eats away at the protruding disc as it knows it shouldn't be there. Although this usually happens in the first three months, which is why most people recover from a "slipped disc" within that time. That's why, when you first go to the GP with back problems they try drugs and physio. For most people that works.

When it lasts longer than 3 months they send you for an MRI to see what's going on. It's unusual to go 12 months like that and then recover, but not unheard of. Neuro says that he often gets in and finds the disc is already softening, which means the body is starting to deal with it and the patient would probably see improvement in time without the surgery.

So he has kept me on file and I can go back at any time. However, having had one "recovery" I'm doing everything I can to hold off on the surgery again. I know it's not always a definitive answer. My friend had the op, three months later her other disc went and she had to have surgery again. She was out of action for 6 months and I can't risk that unless I absolutely have no choice. Also, you only have to read peoples stories on here. Probably these people are the 10% ( or whatever) that it doesn't work for but it scares me.

I'm at the GPs next week and am armed with information ( and experience) so while I wait for physio I will be asking about the other drugs, why I've been given Gabapentin rather than Pregabalin (cost!) and requesting a new MRI and possibly an appointment with my neuro- although I think I can just ring his secretary direct- but I want to hold fire on that for now.

Hi, thanks for the hello Pavlov!! Thanks all for taking the time to read and respond to my questions.
Especially when many of you are clearly in huge amounts of pain and suffering with your own backs.
Hoping everyone can get the answers and relief that they need.

Thanks, Downton, I didn't know that the disc carried on changing / softening once the nucleus was protruding out. Maybe there is hope for me then.

I'm frightened of surgery for all the reasons you mention. Also, I can walk & do things (as long as I don't stand still - at all! Bloody ridiculous), albeit in pain, & don't want to risk losing that ability to function. Have read that sometimes back surgery can lead to reduced pain but also reduced "walking tolerance" - not sure what that even means, if it doesn't involve being in pain when you're walking?

It's scary isn't it? I guess, for me, I need to reach the point of no return before I accept that I need surgery. I thought I had reached that point previously ( as above) but now that I have experienced one recovery it has made me more confused. However, I don't doubt that if I get into the state I was in before, being at home now and not having the issues with living away, I would do anything to try and improve things.

With regards to walking ( I'm convinced that's what helped cure me) they told me my nerve damage was likely to be irreversible, that included loss of feeling/ numbness and weakness in my leg. That wasn't true. I have got the sensation back and have no numbness at present, unless I lie on my back and then the numbness/pins and needles start.

pavlov, my first and loveliest consultant told me the pulpy contents of the disc can drip out and is incredibly irritant. That makes sense because for the first ten weeks or more I was extremely unwell. Couldn't eat, skinny, weak and never in my life felt worse. That's passed and like you probably the disc is dehydrated on one side and bulging on the other. So miserable but it will pass. It will pass.

That same consultant did a very simple test called the SlumpTest which is more accurate at diagnosing a disc than the leg raises apparently. ( though she did that, too). You sit on the edge of a couch feet dangling, let your head roll fowards then extend one leg and then flex the foot. The sooner your pain kicks in the more positive the test. It's essentially putting tension through the spinal cord and shouldn't hurt at all.

Have to go. Hope everyone's day is going well.

Oh and btw pavlov, my dog was sick last night, too. Threw up on the floor then stood looking terribly surprised!

90 degrees. If I could could lift my leg 90 degrees with or without pain I would be impressed! Maths is not my strong point. 45 degrees. half a right angle

matilda wonder if your dog has the same thing DD has. DH took the children to see the lego movie as she felt fine and was so upset about not going to school. She fell asleep in the film and said she felt unwell coming home. Then perked up and got so upset that DH was taking DS out with a friend to fly a kite, properly upset! 'it's my favourite thing in the world! how could you take him and not me! I want to coooooome!' tears down her face. So she has gone too. Most likely a Bad Idea.

downton i never knew that about the disc softening and being eaten up, but had heard that if it leaks it can be an irritant, none of the docs I ever spoke to accepted that though, just looked at me like this I am intrigued to know what is going on inside your spine though, given your recovery and relapse after such a time of being ok.

I called the doctor. It's a locum and I'm waiting for a callback. Not going to give me any more diazepam, not a chance!

Hydro was surprisingly good. I shall try to be less cynical next time all I felt very sad that the minimal hardly anything at all exercises he got me to do actually hurt a little to do. It's nothing compared to how I used to move, I feel such a shadow of my former self. Not even good that I don't even want to go fly a kite in this glorious weather in Devon (no smog issues here, but we did have it last week, typically the day after I cleaned the car, it was filthy the next day).

Sorry for those with increased pain. Send me over the FB stuff so i can join please ladies!

Hi Pavlov maybe you could get some of that robaxin (sp) frozen is trying and see if it makes a substitute for diazapam. It might be easier to get dr to give you it if they aren't scared of abuse issues.
Yes come on the fb page so we can see photos of the family.

how do i get on itlive?

will pm you

go it, ta live

't'. got. tut at my spellchecking...

I had the loveliest massage today. Exactly right, firm in the ok places very gentle in the sore spots. She commented on how hot my back was, though. Then exercises together. She builds it really slowly checking all the way. I do push myself because I just love it.

Isn't it weird that we've all been given such different descriptions of our discs? If it ruptures then dehydrates the contents have to go somewhere, right?

downton keep the faith, if it got better before surely it can again. live' pain has almost gone. Have you sorted any other meds yet?

Lying on bed after very protracted visit from an old friend I've not seen on 10 years. She suddenly contacted me and insisted. Am I a pity object? A way of Doing Good? arghhhh!

That's great about the massage helping. Bit weird about the do-gooder friend.

matilda that's just what my chiro said, back was very hot to touch. I think that's inflammation as she followed with saying as she touched my back that there was a lot of inflammation all up my spine. So guess you are inflamed too? Do you ever use diazepam? I do only use it sparingly, but wow last night, the difference it has made, along with my massage, and hydro today. I feel like a new woman! well, not that far, but certainly feel much better. but I also feel like it won't last (it's already building back up) and the locum didn't call back (receptionist said she might not, due to the time I called, my own GP would have called no probs, even if it was past their closing time by the time he called).

I am just thinking that if you have inflammation and spasms, then the odd diazepam in circumstances such as this might help.

I have been told so much shit about what happens to the disc, including that if I give it long enough (5-10 years I was told, before the second MRI result showed further degeneration) that soon enough it will disappear completely and then I won't have any more pain, and that often people in their 50's and 60's onwards get to go skiing and all sorts again and when I asked this hcp what holds the vertebrae in place once that happens? he said that it fuses itself together in time. He omitted to tell me that 1) that might not actually ever happen on it's own leaving me in excruciating pain and 2) if it did happen, it would fucking hurt, for years, while it fused together 3) by the time it happened, arthritis would be inevitable if not already suffering quite badly from it.

I was also told that discs don't leak, there is no 'stuff' inside them to leak out. By a physio, who told me to do pelvic floor exercises only to help me address the fact I was stooped at almost a right angle, shuffling and not moving my leg and had virtually no feeling/movement in one of my feet on the tests they do. Funnily I didn't see her again after that last visit!

hello ladies, sorry not been in the right "place"to post for a while but have been lurking. frozen what have you been up to!??

I got the stupid letter about my mri in the end. it said fuck all. basically " dear ms denial, your mri showed your spine is clearly inflamed but not inflamed enough to give you the expensive drugs that actually work.would you like to increase your dose of celebrex (I'm already on the max dose and it's not enough that's why they did the mri)

anyway after a lot of phone calls I got an appointment to see consultant, who turned out to be a locum. I hadn't seen before, who told me the dose of celebrex was "excessive stop immediately" the other anti-inflammatory he prescribed turned me into a drunk like weirdo. cue lots more phone calls, lots of tears, the Rheumatology nurse being really mean to me and my gp really going to bat for me leading to call from original rheumatologist this afternoon confirming that I do qualify for the nhs scrap heap, I.e. chronic pain team referral, he can't see why the other guy saw celebrex dose as excessive. Take more opiates. best quote from a hcp this week "i know we go on about addiction etc people like you don't need to worry about that"

I feel lost truly lost.

Denial that is awful. You shouldn't have to fight to get good care. Sending you

Thank you live. Thing is Deep down I know that the expensive drugs come with some quite serious risks. So I'm not even sure I want them. I'm going to award myself a biscuit . However in e.g.the US if I had adequate insurance I would definitely already be on these drugs as they treat much more aggressively from the outset. I can't quite get past the fact that this inflammation that has been steadily increasing over the past three years is not being smothered /hindered / treated at all my back (I'm on drugs that should slow it down in the rest of my body) and that is apparently ok / acceptable. It will definitely get worse.......

Hey ho I wonder what the chronic pain team will suggest for everyone I'm only allowed two units

Hello girls!