The Back Story

[Matildathecat]

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)

I meant to say re sciatica. it was only when the osteo asked me if I had leg pain, and I said yes it was quite bad with pins and needles etc, and we discussed history of back pain that I realised the leg pain I had been having was sciatica and I didn't even know that's what it was! so, my disc probably 'went' that first major time when DS was young, and it was getting worse over the year or so.

And I remember when went that time, first week in October 2010. And suspect I know why. Even though it had 'gone' at work that first time which was like 7 years before, that might, or might not have been related but there was a very specific cause, and it was not realised until a MNer suggested a link, and confirmed as probable by neuro - my spine was hit by a glass shower screen, fell on it from height. At the time I didn't pay much attention to it, I had a small cut and a small dark bruise on my spine, local pain from bruising. It was ignored as I broke my nose in the process (shower screen had fallen off brackets after I had stood up from crouching below it picking something up, fell forward, hit the sink, which broke into large pieces and hit me in the face as it flew apart, and then the screen slid down my back) and had a head injury and so in A&E they were largely checking I had no serious head trauma. I didn't, just a cut eye and broken nose.

Funny thing is, my back then 'went' when I bent to get DS from the bed 10 days later. I know the date, as it was a saturday and I was due to go into hospital on the monday to have my nose straightened and I dragged myself there, and they gave me lots of strong codeine in the hospital on an empty stomach. I could barely walk! But, I still didn't connect those two things as the bruise and cut had mostly gone. So, the neurosurgeon thinks I probably cracked a vertebrae at that time, and it healed, but the glass knocked the vertebrae out of alignment very slightly and it healed in that position. It would explain why the rest of my spine is fine and why over time the health of that disc has deteriorated, as it was damaged.

How crazy is that?!!

Hellogoodness, glad you've joined us. As pavlov says we all have differing complaints and diagnoses but we all have spinal problems and several here have had surgery. I know your husband is away, too so just an all inclusive crap time for you just now. Have you tried downloading and Mindfulness apps? They are quite soothing. Do keep posting here, due to our problems we're around quite a bit.(although not at 5am. Poor you

pavlov, bloody hell! What a horrible accident. Was it at home? Just goes to show, you never know...how is the pain today and did you get help yesterday?

I'm in agony. Just walked sooo slowly but for a reasonable distance with friend and dogs. It was so beautiful in the park, but my back and leg were just getting worse and worse. I HATE complaining about it all the time so didn't say much but OMG I'm so glad to be home, lying down on my hottie. Think I overdid it yesterday. The sad truth is that I can do roughly 20% of what I used to. when I gather the strength and the codeine kicks in and I get off mn I am going to do a final check of the dreaded forms and bloody well post them! Then I promise not to mention PIP again for a while.

live, hope you do get the help! sounds like you will need it. Quite honestly my kitchen is the room I struggle with most. Bending, lifting, carrying. None of it good or possible.

I agree about the pre warning episodes. We probably all had them. We just didn't realise. Gps are sadly very poor at diagnosing discs IME. Apparently 95% of people who present with back pain are not discs so it's a fairly safe bet to say it's muscular. Even those who do have bulging discs do get better in a few weeks. I paid for an MRI after three weeks and even though it doesn't make you better, I felt better to know what the hell was wrong with me.

Just spoken to secretary of neurosurgeon. He has still not looked at my MRI. Even she sounded fed up this time. She of course made excuses for him, but said she will chase him tomorrow and get him to put something in writing. She said he may well have looked at the MRI results on his desk now, but that 'things had been moved around on his desk' and that she had reprinted my report for him. I have no idea what that means from their point of view. It means, from my point of view, that the pain clinic appointment this week is going to be a waste of time as they have already said they are not prepared to do anything much until they/I know whether neurosurgery route has run it's course. It's been over 6 weeks. I just can't believe that it's ok to just let me be like this. And, it seems, this is pretty much a year since I was last saying this when they eventually put me on a waiting list to see neurosurgeon and I waited something like 2 days short of the 18 fucking weeks maximum waiting time to see him.

It sort of feels like. I am managing. I am working. I am not hugely depressed, I am plodding along, so no rush. In the meantime I am trying hard to get up and get moving, exercise, get myself well, without really know why I am in this pain so without really knowing what will make it worse and what will help. I shall presume it's my disc again, but I don't really know that.

No, that's actually not good enough. If you've previously had an ok response to injections it makes no difference at all whether neurosurgery has 'run it's course'. You have severe pain, you have done every fucking thing you can, you are having more sick time, your job may be in jeopardy and they are refusing injections....no make a fuss. Cry. Sob.

This useless inability of the surgeon to read a report defies belief. You really need to get cross.

I'm cross, can you tell .

I do think gabapentin definitely helps my leg pain, I think you're considering pregablin again? Worth a try. As I said happy to send TENs if you want to try it.

I have a lovely new symptom. As well as severe back pain and left sided sciatica I have a large patch like a scald on my right thigh. Happy days.

matilda x-posts. Sorry you are in so much pain after your walk I hate not being able to do the things I enjoy, and your dogs are a huge part of your life aren't they?! it's just so crap that everything takes so much effort.

I am cross. I am tearful. I am just feeling so out of control. I don't really know what else I can do. So, yes, I shall cry. But, I don't even know if this appt will give me what I want as don't actually know why I have it. Presuming it's the nurse practitioner appointment as that was discussed, and it can't be the hydrotherapy appointment as that has not come through.

If they had dealt with this when it first started to be a problem, I am sure it could have been nipped in the bud, injections, other therapy, more surgery whatever it is that is needed, could have been done sooner and not waited until it has deteriorated so far it feels like the surgery was pointless. It didn't have to be pointless, as despite it not been 100% successful it did make a big difference. They have just wasted their time, my time, and all that goes with surgery. And more than that, Where before I had hope and determination, I feel like that has just gone 'puff'. I am sure it will return in coming days but right now, I feel really bloody down about it.

Do you think the tens machine will work? the pain clinic guy mentioned it last appt, maybe I can get one on wednesday, if not, I will maybe take you up on the offer of borrowing yours to see if it helps, thank you

I remember the week or so of loveliness following last injection. It last for just under two weeks, and then the leg pain only gradually returned, but I remember, I had been unable to step over this grassy bank near where I work, and had to walk around it as it hurt my leg to step up onto it. About 3-4 days post injection, I remember absentmindedly walking up to the grassy bank and sort of skipping onto and over it like I used to, stopping and going 'wow, not done that for a while!' so it did work, just not for as long as we wanted. it did however demonstrate that it was my nerve that was causing the leg pain. not that it sped things up any...

Pavlov, what a terrible accident. I can understand how your back wasn't noticed and seemed not to have happened at the time. Poor you.

I really appreciate the welcome messages from you.
Yes I am supported in RL. I've been v productive about that.
And yes, I'm toooootally freaked out - largely because I have no pain. That's apparently typical of the two types of tumour that this could be.
I'm really, reeeeeeeeally not up for an op on my sacrum and for laying down for... weeks when I've no pain. Seems bizarre. Bizarre being totally inappropriate word. Can't think. Talking about not thinking, I can't seem to remember anything so apologies if my response doesn't have your names in them. Terrible working memory at the best of times! Lol
I did download the meditation apps but need to start suing them again. I even bought the speaker head band thing! Good to be reminded.

I have been told that a disability permit for my car will be on its way within 2/3 days. Isn't that the most fabulously helpful, depressing and weird thing for someone who's just found out and has been coping. They have my recent medical report and doctor notes. I think that this must all be v serious. Sooooooo strange as I'm sitting here pain-free knowing it's all going to kick off BIg tIMe and take over my life, painfully, for a while to come.
For those few who have read my panic-posts on other threads (trying not to be alone and to find the right group for support), forgive me if I duplicate-post. I'm on cancer ones (as tumour suspected to be low grade sarcoma) and now here - as well as one I started when I had initially found out. It's hard to know which way to turn and as someone undergoing scans, MRIs etc. for cancer, with a tumour in my sacrum & spinal canal), no pain in my back, i feel like an intruder wherever I go. In fact, I cold easily imagine they'd got it wrong about being in MY back I'm so pain free (for now). I don't want the op. It'll be a painful and long journey. Even going to the loo, sitting and standing will be hard for weeks n weeks, said the nurse at pre op

goodness, you are most definitely welcome here and not an intruder. I 100% empathise with the car badge thing. I was told so many times how difficult it was to get one yada yada that I almost didn't bother. I got it extremely easily which completely freaked me. It was so obvious I was properly disabled yet I couldn't bear it being official.

So glad you have good support in RL. I think in your position joining various groups is a good idea because, as you say, you have bits of each problem. I guess the fact that you aren't in pain now is good (if all a bit adding to the weirdness).

Please don't fixate too much on the post op pain. They are good on this. If you're lucky you will be fed spoonfuls of oromorph at regular intervals. I liked(!) this more than the IV morphine pump I had first time around. I was worried that oromorph plus paracetamol wouldn't be enough but it was. Where did you decide to go in the end? Do you have a date? Sorry, too many questions.

Final addition to my list on your other thread...wet wipes! In abundance. Very handy things.

Breathe, breathe...

Ca you link to the other thread goodness I will go and have a nose. And agreed you are most welcome here and there are no intruders on the back story thread. If there is a problem with your back, any part, any type of problem, then this is the place for you.

I feeling better. Moving around more, but robotic as any twisting pops my back again. I am no longer tearful. Not exactly happy, morose I guess is closer to now I feel emotionally. Physically, did school run and diving lessons (dd, not me!) and am pooped but least I got there and back.

How you feeling now matilda? Better at all?

www.mumsnet.com/Talk/general_health/1968549-Tamoxigang-New-Year-New-Thread-46

I can't seem to remember anything. I remembered one of you lovely ladies asking for the link. I'll now go back and see what else you asked.

I've taken notes. Lol
I'll try to respond to all. I can't remember who asked what. Here goes and thank you for caring and showing you're there for me.
Disabled badge. Lady called to ask whether I was currently on pain relief. Answer: no
Burst out crying as had done school run, called 4 medics (2 secretaries, urinary place and insurance co.) already that morning - and it wasn't yet 11am. She said... Don't worry, I'm giving you the badge. I'm sending it out marked as urgent. It'll be with you within two days.
Interlude: crap. Hubby is in India and texted to say goodnight I love you. Shit I need him here at the mo. He will back Friday morning, please gd. Just days before the op when all will change and it feels like my problems will begin. I'm about to be transported into a world I don't even cTe to read about as IT SCARES ME. I can sympathise and help others but I can't live it. It's such a shock and I feel like I'm voluntarily going towards something I can't relate to. I have no pain! Can't be me!
Back to my responses...
Was going to say I feel overwhelmed and weirded out by reality. Think I've covered that. Lol
Feel so scared at times that I think I'll throw up.
Someone ever so kind told me to think positive, it will be alright. Wanted to punch her and get her to promise me.

Op date is next Tuesday. Next Tuesday!!!!! At RNOH. I chose two surgeons so that I have it there vs Wellington. But went for urinary consultation on Saturday. She said to go back to one surgeon I have most faith in (as does she cos works w him and knows he's done this before) and share my concerns. Going Wednesday at 8.15am
Having jap water torture and dentist appointment tomorrow. Niiiice
Now don't know whether to have just him at Wellington or him with tumour man without spine experience but linked to RNOH and sarcoma service.

I don't even like to choose which holiday we go on for fear of choosing the wrong one and having a bad experience... let alone a surgeon

God how tough. I don't know how you can be expected to make such a terrible decision. How can you possibly know?

I hope you are allowing yourself plenty of treats. Wine? Massage? Facial? Cashmere? Chocolate? They all help me.

pavlov, thanks for asking. I've felt as though I've been hit by a cricket bat all day plus vile leg pain. I thank my lucky stars my boys are grown up and I no longer work. Also for strong drugs.

PIP form gone by recorded delivery. Yay! Any ideas as to whether they have any timescales. My life is spent being patient.

Hope you are feeling slightly better. Sometimes it does just really, really get you down. I'm sorry others are suffering too but it does help to chat and moan to those who understand..

Sorry to hear you guys are all having so much pain and difficulties at the moment. Keep strong and go steady. thanks for all your advice. will write more tomorrow.

Had a lovely evening out for coffee. Had sent her an email of what was going on so we hardly needed to talk about anything. Was so wonderfully ... normal!

Going with my mum
Have the hairiest lower body known to man. Having myself waxed pre-op on Sunday. Didn't know I'd be having diagnostic humiliation tests today. Just adds to the joy!

Hi everyone. Sorry for any that are still in lots of pain and hello Goodness. I'm so sorry you find yourself in this situation and in what seems like diagnostic no mans land. Hope the dentist isn't too grim today.

Matilda well done on sending the forms in, hopefully they'll get their bums in gear and get you sorted quickly.
pavlov sorry you've had a pants time recently, but glad the pains easing up again. Regarding test results, I rang my consultants secretary 4 weeks after my 2nd MRI after hearing nothing to be told it takes 3 months to get results. "But" says I "There are posters in the MRI suite saying I should have results in 2 weeks." "Oh yes" was the response, "That's all very well for them to say." Er well yeah, what with them being the ones responsible for it! What she actually meant was my consultant was a) part time and b) always on holiday and so was massively behind. In the end it was over 4 months before I heard and this was by letter. It basically said he had read the radiologists report, disagreed with him on a point about the damage in my neck, but couldn't do anything about it or any of my pain and too try pain management. Helpful!

I'm just about too surrender and am going to make an appointment with my GP to see if I can see anybody else. It's been a couple of years since I saw a consultant and he was an ortho, so I'm hoping there is somebody else. I would like at least to know exactly what is wrong with me as it is definitely getting worse and I'm very rapidly moving into not being able to function despite all the medication. I know it could be worse, but I'm still fed up.

Sorry for the moan.

Cosmopolitan, seeing someone else seems like the move to make.
Thank you for your good wishes.

Cowmop
Bloody auto correct

goodnessknows you sound incredibly well balanced and logical about all this, despite you saying you feel otherwise, given the circumstances.

You mentioned in your other thread that the aching is bothering you. Is it starting to cause pain rather than ache? paracetamol and low level codeine is fabulous for low level pain that needs just a little more than paracetamol. you can get it over the counter, but if you need stronger stuff do talk to the GP. Be sure to talk about medication relief post surgery too, before you have surgery, in case this does not get discussed in great length post surgery and before you leave. I am sure it will though. A bit tip from here, which I am still not so good with is to not be stubborn about taking pain relief, just suck it up, take it and feel better.

It's so daunting for you that they can't tell you from the MRI how much nerve is involved etc, at the very least, even if they can't tell you if it's benign for certain until post surgery and it's been tested.

Do you work? How are they? Do they even know? Glad you got to have some normality with coffee and a chat with a friend.

cowmop I definitely agree to get a second opinion. I just cannot believe how flippant they are with our lives. I know one thing though, this process I have experienced, the navigation of the NHS has helped me be more 'lean' in my own case management, I don't fob people off, if there is a problem I tell them the truth and I try really hard to not forget to do things I have promised, following up certain things. It's actually quite easy to do, a promise to check whether there is a warrant out for a £100 court fine not paid and call them back to stop them panicking is put on the back burner when someone on licence assaults his partner badly and has to be recalled. but, that person who potentially owes a fine, they are human too (you could argue they could do it themselves, but many offenders have limited capacity to manage their lives further than getting dressed and feeding themselves sometimes not that), or a promise to do something else important to them but trivial to me. So I have learnt from this experience.

I do get that appointments are not easily gained, but really, would it not have been better for your specialist to get you in for an appointment, or telephone you and tell you, so that you can ask questions about what that even means that he disagrees. I am fully expecting to be given a similar letter, and I will ask my GP to arrange another MRI, or to refer me to another surgeon for second opinion. My arrogant surgeon won't like that, but tough, it's not his life, it's mine that is held in the air right now.

matilda is it done?! Have you sent it?! I am loathed to tell you how long it took to assess my claim 6 months but, they did need to write to a million people, they got copies of my MRI, wrote to my GP, the physio, a different physio, and it was the physio response that took so long and held it up. If you have much of that info, hopefully they won't need to do so much chasing, but I would not expect anything back other than an acknowledgement letter for a couple of months.

pavlov your story of how your back was injured is very interesting, but awful. Not surprising the back injury was missed, but all the problems it has led to are dreadful. I really get what you are saying about needing to advocate for yourself if you feel your medical care is not sufficient, because it is just a job to the doctors, but to us it is our lives being changed so much by what simple things we can and can't do and being in so much pain.

Funnily enough my dog has had an MRI scan! She had a spinal problem something like a stroke where a tiny clot damages the spinal cord internally. We now joke that we all have bad backs in my family, even the dog. Results from her MRI were back within the week btw. It did cost £2000 luckily she was insured.

goodness glad you had a nice coffee with friends. I agree with what Pavlov said about codeine plus paracetamol being good for pain that needs something more than paracetamol on its own. Thinking of you, hope all the pre ops go ok.

live that is so bad, it's funny, about your dog getting MRI results back in a week!

My accident was so surreal it doesn't even feel so horrific. At the time, I was running a bath for the children and the glass shower screen was pushed away from the bath into the bathroom on it's bracket. DD was by the bath swirling the water, DS was next to me on the other side, sink right in front of me. I was actually weirdly pleased it all got me, as literally centimeters either way and it would have been one of the children who got it. And, DS and I were both at the same height as I was ducked down, so it would have been his face (it got me on my right side, nose and eye, so just a little further right and it would have been him) and I remember thinking that as soon as it happened. DD got a cut toe and DS refused to have a bath for a long time afterward. The damage to was not that bad, a cut by eye that needed some glue and a broken nose (which, to be fair probably only broke as it's been broken a few times before and so it weak now) and a huge lump on my head where I had actually lifted the screen off it's brackets! (I have a little dent there now) I was more worried about the blood from my nose and eye leaking onto our new carpet in the hallway as I got the children out of the bathroom!

re the damage to my back, I am not even sure I told them at A&E that I had hit my back. They didn't check it I know that, not even a glance. DH thinks I did tell them. So, although all this fuss since, I didn't actually ever add the two together. Until a MNer called dillytante said to me when I was complaining about my back problem when I was literally not able to move that she remembered me due to my thread about the bathroom incident and were they linked. I was like 'no, no, this is a disc problem' and then. Lightbulb moment! As I remembered my back being hit (I had forgotten) and then my back 'going' 10 days later and then problems ever since! I didn't know at the time that my vertebrae was misaligned. So, when the neursurgeon said to me that there was a misalignment between L5-S1 and asked if I had ever had any back trauma, I was like Yes! I know what it is! Neuro said it is not certain that is the cause, but given the exact location of the injury was between the two vertebrae, and that my spine is otherwise fine, he said it was likely. Mad eh?

It's just one of those odd curve balls life chucks at us. I do wonder if I had an MRI/x-ray at the time if it would have made any difference to now, but, I don't even know if they could/would have done anything to fix it even if they knew, as I was not in pain, could walk fine etc. I guess it would have made future diagnosis easier and maybe there would have been more urgency when my back went 10 days later to make sure there was no more damage, but, hindsight is a wonderful thing, and I have to just get on with it as it is now.