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)

It just shows you why the MRI is slow, eg the consultant. I know they don't have to be so careful with a dog, but it is exactly the same scan after all.

I have a friend who had a cat who needed an MRI and she had to take her to our local private hospital in the middle of the night! So if you find a few stray hairs in the scanner don't be surprised!.

I'm feeling a bit better today so determined not to 'overdo' it and get back to yesterday's car crash of a day.

pavlov, that sounds horrific. Thank god the dc weren't hurt. It does sound like the start of it all. As to whether they would have done anything, who knows? When you look back on things there are always moments that you can identify as red flags. My SIL is recovering from a disc prolapse and actually improving but isn't really listening to me about taking time to recover, do exercises, graded mobilisation. No, she just wants to get back to work. In fact she's been working from home and not actually off sick. She looks really ill..

goodness, good luck with the dentist and waxing, it shows you must have a high tolerance to pain..

cowmop, def get another opinion. Make a fuss. All this waiting is a farce. four months to get a consultant to read a scan report?!! Shocking.

For all those having difficulty with this stuff it as really worth while contacting PALS at the hospital. They can be extremely helpful in chasing things up and getting things moving. They do carry clout. You can just phone and explain your pain and frustration.

Have a good day.

Pavlov, your story got me thinking. I have had two significant injuries to my lower back that have made walking difficult for several days. On neither occasion was I x-rayed or really looked at. I know one of the vertbrae (L5 I think) is out of line (pushed forwards). I don't think they had MRIs back then (15 - 20 years ago). Glad you are a tiny bit better. Hope the specialist can help soon,- preferably today. Matilda, woo hoo at getting your PIP form off. Now it just needs a sensible decision maker to read it.
Goodness, have followed your other thread, so just wishing you luck. I hope it all works out better than you could have hoped for. RNOH is less than an hour from my home (DH used to go there- and disabled ds sometimes attends the sports base there) so if you need anything---) I can't imagine how hard it must be having your dh away just now. Waiting is so difficult.
As far as in hospital is concerned, agree make sure you have some wipes and tissues, phone charger,- I found lip salve and a small tube of hand/body/face cream useful as my skin got dry.
((Hug)) and best wishes.

It's funny to think, isn't it, that incidents seemingly unrelated can actually be the cause of future issues?

I have attempted to get on top of the washing as we appear to be drowning in clean washing to be put away, and dirty washing to be washed. I thought 'just one task today, get myself moving, I will wash and dry and put away some clothes. BUT, it meant, clearing out the spare room which is now our laundry room, but has become storage for every bit of crap we move from everywhere else. So I can't get to the dryer without climbing over stuff, and so I wasn't doing drying. This means first thing I had to was clear it out. And discovered that one of my cats had taken a shit. I found this out by reaching to pick up a sock, and put my hand in it, hidden under my sock Ewwww! on the one hand, thankfully fresh so not been there forever slattern on the other -now minging hand fresh is not always good . So, cleared the room, hoovered it, gave DH a pile of things to take to the charity shop i expect that will mean the tip as that's on route to DSs pre-school--. I finally got around to sorting the washing, realised that half the children's clothes don't fit, so emptied their drawers out to sort out. Can you see how this is going?

Now. My house is like a washer woman's house. Clothes strewn everywhere, and our stairs are packed with stuff for attic now too. And I have had to stop as my back and leg was going 'waaaaah!' at me. Right into my bloody hip. Oops. But. At least I can get to the dryer I am going to have to sort it. As it really does actually look worse than when I started.

I am sad, DD is staying at her friends, for a sleepover. I am going to miss her. She is going straight from school and will be gone til tomorrow after school but, I am also happy, as DH collected DS early from pre-school, he is now with me, and DH took the car to work. I don't have to go anywhere! I am still in my lounge trousers and scruffy top, and don't have to haul my ass out.

goodness agree with wipes, hand gel, and maybe some roll on deodorant. definitely definitely take your phone charger. I didn't think I would use my phone, but I used it loads!

Helpful tips v gratefully appreciated. Dare I ask why I'll need wipes n hand sanitiser?
I'm almost at breaking point. My high functioning autistic son is being a flicking niiiiiightmare. Just scratched my au pair - 17th I've had in 3 years! What if she leaves? I'm all over the place. I've calked patents and told him that if he's naughty he'll go there. I can't afford for her to leave and everything to go tits up. My three year old is a doddle but how the fuck am I going to run around chasing him up n down the stairs when I'm on my flicking back?
Swear-fest over
Feel better
Sorry

Doesn't he KNOW (he's 6 - being sarcastic) that I'm going through so much stress and neeeeed him to b good. I understand he's sensitive etc and this is a normal (for SEN and other children) reaction, but all the same...

Just seen through the mist enough to selfishly search out my bane and thank you so very much for your messages.
I'm in such a rush of emotion I can barely focus on anything but my desperate attempts it clutch onto virtual (and RL) hands. You're literally keeping me from drowning in a black hole. I do feel bad and apologise for not being able to read and resound to you all about YOUR stuff though. In time... I hope.
I am belligerently anti pano kickers or even paracetamol, having had addiction issues. It's scary for me.

Oh goodness, no wonder you're at breaking point. I'm wondering(sure you have done this) if school or autistic charity would be able to advise. Of course he's going to sense that change is occurring and kicking off. Does your au pair get it? Also do you like/trust her? If so would it be worth offering her a bonus if she sticks with you through this?

If he has SEN is it worth asking for some respite hours for a few weeks?

Not sure quite what the stance is on people with previous addiction issues. You are going to need analgesia. Taking too little will greatly impede your progress because it will be too sore to get moving. Can you meet the anaesthetist to discuss this? Have you told them?

What a stupid lot of questions, please don't answer, I'm just throwing suggestions.

They do say that if you need painkillers you don't get addicted. I've had to take so much for so long it's hard to tell but I don't crave my meds. I can forget until the pain kicks in and I reckon I do have that tendency IYKWIM.

Really, really hope you can breathe, let go a little and find a little calm.
Wet wipes are ace for everything in hospital...hands, quick do under the arms, table, face...well everything! Gel,ummm, good for offering to everyone who comes near you. No harm in letting everyone know that you are infection risk adverse.

Earplugs might be useful, too. Noisy places sometimes. Nice pants. No need to let standards slip..

Hope you get some sleep. Sometimes it helps to write down all these worries before you settle down.x

pavlov, glad to hear you are resting quietly!

His second of twi (I think) assessments is Monday - the DAY before my op.! So I'll be waiting for two major 'results' the following week... His diagnosis and my tumour 'ID'.
Wipes: gotcha. Will buy lots!
Can't remember other questions. Lol
No SEN privision as not yet diagnosed.

Officially, that is

How will I put knickers on if I'm having a tumour removed from my sacrum? How wil I bend or brung feet up to put them on? What should I wear after op? Nighties? PJs? Then... baggy, long dresses?
Someone asked about work. I work fir myself and from home in my dining room. I sit or stand (tutor& assessor)... pre op looked at me as if I were crazy when I said I'd told the parents I'd be taking 2-3 weeks off. Apparently I'll be laying on my side (wtf) and will have to build up to standing and to sitting.

Meeting surgeon for pre op consultation (panic question firing) at 8.30am this morning.
Really feel I need someone to take over the decision I need to make (which surgeon/a and where). How the hell should I know?

That man should never have sat in traffic blocking the hospital entrance. I may have... exploded a little bit.

Thinking of you right now.

Good luck.x

In hospital I wore longish t shirt nighties (ie very safely covering my bottom!). I honestly did buy new pants...not because my normal ones were horrid, I just thought it would be a little bit of niceness. Ditto lovely Orla Keirly handcream. Just stuff that will give you a nice sensory moment.

Once home just soft clothes so leggings with tunic, long jumpers etc. I avoided things with a stiff waistband like jeans.

Hope your appt goes well.

goodness hope your appt goes well. Matilda has some good advice. I agree with contacting autism charity if you haven't already for some advice on whether you can get any extra help with your Ds while you are recouperating. Sounds like you may be able to pay for something? But its finding someone to help quickly that may be a problem, I don't know but they might be able to help you with that. But don't feel you have to sort everything out alone. I know your dh is unfortunately away right now, but he will be there as will your parents and they can do things as they crop up, so you don't need to get everything sorted in advance, your DH must be quite an able person if he gets sent off to India by his work and even if he doesn't do the household/childcare tasks normally I am sure he will cope admirably when he needs to. Don't worry about getting everything on your lists done, if you forget anything someone can get it for you.

I was really meaning to get advice for helping your ds cope with the changes that are happening soon. A friend of mine had fantastic help from Young Minds re her AS son's behaviour. She called them and they called her back for a whole hour with a psychologist specialist. Anyway might be worth trying although you don't have much spare time, I'm guessing?

I think respite would be SS and slow to happen.

How was the appt? Hope you got some answers.x

www.youngminds.org.uk/for_parents

goodness, I hope the appointment today went ok and you have got some of the answers

I suggested wipes ( I was on a respiratory HD ward- emergency admission so no time to prepare) because when you are attached to machinery or drips you can't pop to the sink to wash. Eating in bed can be messier than at a table.
I got some help (direct payments for respite/childcare) from social services disabled childrens team,(Ds now 14 has ASD,ADHD and SLD) but it did not really start till a year after I came out of hospital (not back related). Ds struggled when I changed ( poor attention, slow) and because he wanted things the way they were he was very distressed and tried to force things back to normal which made life very difficult for us all. He understands better now.
You have some time to prepare your son. My son can only understand and empathise from his own perspective, he can empathise with the sore tummy or bruised knee he has experienced but struggles to understand a sore back or wobbly tiored legs- he does not make connections that to every one else is obvious. Do you use social stories? I'm not very good at writing them ( ds cannot read) but I know they are helpful for more able children. Just a simple story explaining something along the lines of -mums back (hip) has been sore. The doctor took a picture (MRI) to find out what was wrong. The MRI showed a sore bit inside that needs to be mended/ operation. Mum will need to sleep in the hospital for x days. Daddy and (granny/ child carer) will take you to school and look after you. (cook dinner/ put you to bed-- that sort of thing. If he is going to visit you in hospital, some picture of a ward may help.

Goodness, hope you went on ok with the pre-op today and everything is going as smoothly as possible. I don't know how on earth you're supposed to pick a surgeon, it seems absurd to load you with all this information out of the blue and then ask you to choose who should do this thing to you that you didn't know you needed and can't know the outcome of. As if you haven't got enough to think about!

I hope the driver blocking the entrance way still had a little bit of skin left after you finished with him!

I bit the bullet and went to the GP today. He took the time to read all my notes and letters from the consultants and then asked what I wanted, at which point I started blubbing. Marvelous. I asked about seeing someone else and said that no one had actually said what the problem is. He said I have degeneration of the discs and "unusually" high wear and tear of the vertebrae around them at the base of my spine and in my neck. That there was nothing surgically that can be done and that it will only get worse. He offered to refer me to pain management again, then said it would be worth trying to up or change my drugs first as it was really the only option the pain team would have anyway. He's put me on buprenorphine patches instead of the codeine to see what happens. I asked about addiction issues surrounding them and his reply was that they were addictive but I needed to decide if I wanted to function and risk being addicted or not use them and be unable to function. So...I've slapped one on and time will tell. Fingers crossed.

Hope everyone else is ok today. Go steady people, just go steady!

Hi cowmop glad to hear the dr has given you some answers at least and has a new drug for you to try. I wouldn't worry too much about addiction as it sounds like if they work you will be needing them long term. The thing to be careful of is side effects or long term damage to other organs. So you really need a drug that is safe from that point of view. Hope you are getting some relief from them already!

I am still doing ok this week, but I have a question for you. I am trying to keep my back straight esp when lifting but I am also having trouble to crouch down. My leg is really stiff and it hurts. Can anyone suggest anything.

live stiff, sore leg - my suggestion is back to GP now, and insist on MRI. honestly I know I am banging on about it, but stiffness/issues with moving that leg means that the nerve is very likely being trapped. Sometimes/often, leg pain can be worse than back pain so don't think that reduced back pain means that things are improving from a nerve point of view. Are you getting the following in your leg? - pins/needles, numb patches (either coming and going or constant), weakness, feeling that the leg is heavy or not moving as well as the other? If so, GP. Like tomorrow. And insist. In the mean time. Nerve pain is notoriously bad to fix without medication.

Also, don't force your back straight. Try to keep it straight naturally, but, don't force the muscles to do what they cant do well. I had this convo with physio who said that correct posture is key, but if your muscles are tight, you cannot force them into the correct posture as all you will do is make them more tense, you need to do some exercises to relax them again. And. Did I ever mention that heat is good

I had my pain clinic appointment today. Lets just say, for now, I have sworn a lot since that appointment I don't have any injections scheduled, they have been refused, but I do have some lovely nortriptyline to goof me out, as I don't have enough brain fuzz to cloud my thinking as it is

goodness hope it went ok for you today? As well as it can anyway.

live, just off the top of my head could you go down with the stronger leg bending in front of you and the weaker or sorer leg further back so taking less weight and less bent? Does that make any sense at all?! Then bring your load you are picking up as close to your body as possible.

Having said that I'm sorry you are doing any bending down and lifting right now. Only a short while ago you couldn't move.

cowmop, sounds a kind of bitter sweet appointment, you got listened to, anyway. I wouldn't write off a pain clinic as I've had good experiences at two although my pain hasn't improved...

I'm seeing my GP tomorrow, a bit weird as I will be telling her my correct diagnosis! She will listen. I'm going to ask about slow release tramadol to trial. Also will be asking her to support my pip application. It's going to be a busy five minutes!

Hope everyone is ok tonight.x

cowmop I am so sorry for such a shit diagnosis. I would say, least you know? but, really, right now, if someone said that to me after being told that it's gonna get worse, I would probably want to punch them I definitely agree with matilda that becoming addicted is only really going to be a problem if you plan to come off them in the near future. If you are going to need them longterm, it won't be such an issue. But, I know from my experience/thoughts when faced with potentially addictive drugs that I think 'i want to be able to come off them easily' denial of a chronic condition so you are bound to worry about that. I think, do as you are, give it a try, if it makes huge amounts of difference then I would say 'feck the addictiveness', if you want to come off them in the future, you can be weaned and addictive side can be managed with support. At least the GP did tell you they are addictive, so you can prepare for that, unlike some GP yes I am glaring at you, my GP who say 'oh no! they are not addictive!'