Yes that’s me in the picture, only 3 years pre children. Since 2011 my life has been changed by pain. What follows is an honest diary of the reality of lumbar fusion surgery.
Warning: read only if you are interested in this surgery!
January 4th 2017. T-1 day
Everything feels somehow very final, as if life will change forever beyond this point. Simple actions bring thoughts of “when will I do this again?” Taking a bath, sitting on the sofa, cooking, racing up and down the stairs at work, power walking into town at lunchtime….
Finally I leave work around 7pm with everything in place for others to babysit my work. I feel more ready now. I sit on the rocking chair in the nursery with Baby on my lap singing to her as she snuggles into me. I hope beyond all hope that it won’t be long before I can sit here with her again. As I gently lay her down in the cot, the pain reminds me that it could be many months before I am able to lay her down again..
So how did I get to this pointI began years of physiotherapy, osteopathy, steroid injections and nerve procedures. It was after my second child was born in 2015 that the pain became untenable. Muscles spasms were frequent and I could hardly lift my baby (who it just so happens is a very heavy baby). In desperation I embarked on a course of prescription painkillers. These helped me get through each day and reduced the muscle spasms, which changed my life but left several difficult side effects. Predictably though the decision came as to whether these were a long term solution for someone of my age.
For around 2 years I have mulled over the decision of whether to go forward with surgery, however whilst there is lots of information out there, I didn’t find many honest and detailed accounts of the experience and outcome. This blog is aimed at people considering having spinal surgery. It’s honest and detailed, so if you are not in the market for surgery it may not be for you!
January 5th 2017. Day 1 – Surgery day. Lumbar Fusion L4-5I
I would say the time prior to surgery was the worst thing about the whole operation. The dreading, waiting, wondering, knowing what is to come. Fortunately I only have 2 hours from arriving at hospital to going into theatre. That time is filled with questions from nurses and visits from Dishy Dr Drake – the anaesthetist and ‘Man-of-few-words’-my surgeon. Finally when I walk down the corridor to theatre the anxiety really takes hold. In the pre theatre room I am shivering and shaking. The epidural into my spine (which will last 12 hours and therefore help post operative pain) is almost the worst than the main event. I am not a fan of epidurals, the feeling of the needle and then the dripping of the liquid through my body is one of the worst sensations I have ever had. Once that is over and the dreaded canula is in I am pretty glad to lie down. Almost immediately Dr Drake starts the general anaesthetic. A feeling of heaviness begins to creep through my body slowly, starting in my feet and gradually making its way upwards. This is closely followed by a feeling of dizziness, as if I had drunk a substantial amount of some kind of /prosecco/Jaeger bomb cocktail and the room begins to spin. Apparently I go to sleep mumbling “too many cocktails”……..
T + 3.5 hours – 2pm
I am dreaming vividly. “Caroline, Caroline”, I hear the voices but I can’t open my eyes. It’s as if they have been glued shut and heavy weights attached. It takes all my might to them briefly. “Hello you’re in recovery,” a kind face says. I am asleep before she can finish her sentence. Wow, this is a good sleep remedy.
T + 6 hours – 4.30pm
Gradually the effects are wearing off and my head is clearing. I manage to speak to Husband and instruct him on what to bring, so things are fairly normal! The pain levels are moderate I would say. Pain is a very subjective area. If you are reading this then you have probably had pain in your life for a few years, as have I, and therefore my tolerance has increased. The pain in my lower back right now is just a bit worse than the worst it has ever been prior to surgery, if I tried to turn over I think it would make me scream. I am not allowed to move for now anyway which seems sensible. Joy would describe my first cup of tea post op at 5pm; it’s the little things…..
T + 8 hours – 6.30pm
I wake to the sounds of the compression device fitted to my lower legs. Brrrrrr…. click.. Tightening onto my legs….. brrrr…. click…. tightening. What the heck is that I am wondering when the door opens and in runs Elder Daughter. She gives me a precious cuddle and then proceeds to inspect everything. She is overjoyed to see a real hospital bed complete with food tray, and obviously desperate to have a go at moving the bed up and down. She has a long list of questions about the “wee bag” (which she later refers to as Mummy’s litter tray) and the drip / canula situation. Meanwhile Baby has managed to climb into the (low level) wardrobe and shut the doors. Chaos reigns for an hour but at least its normality, and a little bit of normality is good when you’ve got tubes coming out of everywhere and intense pain!
January 6th 2017. Day 2 – Cocktails and first steps
5am. I wake up after about 4 hours sleep and the pain is unbearable. Spasms in my lower back and leg pain. I toss and turn, every move like a knife being twisted in my back. My mind is raging, how did it come to this? How did I get to this point? The nurse has left the light on in the bathroom and I just want to get up and switch it off, I can’t sleep with light. It’s no more than 3 feet away from me but I have no way to move my limbs to get there. The frustration and pain drives me to tears for the first time since the operation. By 5.45am I call the nurse and admit defeat: I need more pain killers. She points out that I haven’t had any pain relief since 10pm so everything has worn off. Pain killers are against my normal belief and I struggle to take them, but I know there is no choice if I want to get through this.
7am. Painkillers administered and pain back under control. I am tired but ok and now I have only one aim: to get out of bed.
8am. After much persuasion the nurse removes the catheter and immediately I feel a little better, a bit more free and normal. She then administers more antibiotics through the IV which I also hate – I don’t believe in taking antibiotics unless absolutely necessary. I explain to her that I believe in natural medicine and I only give my kids antibiotics when really necessary. To my surprise she agrees and says she has the same philosophy about natural medicine. She then again urges me to take oxytocin – A synthetic form of morphine. I decline. My body is full of a cocktail of drugs, I don’t want more!
8.30am. A visit from Dishy Dr Drake, the anaesthetist. (Dr Drake Ramoray from Friends is all I can think of!) I am not looking my best that is for sure. He is seriously nice and great at explaining things. This is shortly followed by a visit from my consultant surgeon who performed the operation. He is sporting what looks like a blue shower hat and gown, but when he talks to me he doesn’t acknowledge this which makes the conversation even funnier. He is no charmer like Dr Drake but he informs me in a serious tone that he sees I have “been declining drugs”. Sigh. Ok I say but I can manage without it! He is here all of 5 minutes then he and his costume whoosh out the door, presumably to put screws and a cage into some poor other persons back.
10am. The nurse comes in looking very serious. You HAVE to take this Oxytocin she says and hand me a tablet. Drs orders. She explains that I will be seeing the physiotherapist soon and I will need it, so I agree.
10.30am. Physio Sue arrives and she shows me the famous ‘log roll’ necessary for getting out of bed. She brings a gift… what looks like a giant toddler toilet seat. She exclaims that unfortunately toilets are rather low and that I will need to balance on this in manner of toddler potty training toddler for a few weeks. Surprisingly I accept this information as if this is completely normal so keen am I on the idea of wee-ing by myself! I go to the bathroom, yippee! She says I can wash but not shower. It feels great, even though I have to get 2 sweet young healthcare assistants to wash my back and legs, I am so grateful to be out of bed. I am mobile, almost free of tubes and independent. Later Physio Sue takes me for an interesting walk to the X ray lady, a ferocious South African. Ferocious South African X ray lady barks orders at me and I fail miserably with the task of standing correctly so she barks we have to do it again… finally it’s done and she shows me. Holy moly, I am now officially made of metal. There are 4 screws and a cage in my back, holding my spine straight. Even though I knew this was the outcome I am still shocked.
Finally after all that excitement I log roll back into bed and fall into a deep sleep for 3 hours.
January 7th 2017. Day 3- The power of a shower..
A better night’s sleep mainly because I insisted on taking my usual pain killer, amitriptyline, which I know makes me sleep. Waking up to turn over means sleep is disjointed and it reminds me of the latter stages of pregnancy. I am awake by 6 and manage to log roll out of bed to the bathroom pretty easily.
8am. Armed with my false sense of easiness I then attempt to turn and sit up “perching” in the bed to eat breakfast. A sharp ripping pain stops me in my tracks and drives me to tears. I simply cannot roll over; it feels like one of the incision points is splitting open. It’s a low point when I realise how hard these next few days and weeks are going to be. Small things are insanely hard. Eventually though the nurse helps me breathe through it and I roll over.
When your sole aim of the day is to have a shower, you know life has changed significantly! By 9am the painkillers are working and I walk slowly but steadily down the corridor. Walking is not easy but it doesn’t involve terrible pain either, this really cheers me up as I imagine walking by the river in a few days. We arrive at the room with the walk in shower. Yes, I know you are imagining a beautiful rain shower type affair. Switch that image for a shower in an OAP home and you re about there. Nevertheless the shower was a beautiful experience; to feel clean is a small thing but a real mood lifter. I am allowed to stand in the shower and just need a nurse to help me dry and dress. This is better than I expected and I can now imagine how I will be able to cope at home.
12pm. A surprise visit from Mr Consultant. You work Saturdays, I exclaim!” Of course”, he says! Visit duration is approximately 5 minutes. He congratulates me on getting through the worst and shakes my hand, which is very unexpected since I know I have a long long way to go to be functioning normally again. No visits from the lovely Dr Drake though.
Physio Sue is back and talking about climbing stairs. Madness? No she says, very easy.
As it turns out she is right, there is minimal pain in walking and gingerly climbing stairs, the pain is in getting in and out of bed and sleeping.
Visits from a friend and my parents perk me up but once they have gone the pain seems to spread to my legs. Ups and downs are the name of the game….
January 8th 2017. Day 4- Homeward bound
A better nights sleep with less tossing and turning makes me happier when I wake. Having slept and woken up on my left side it’s actually pretty easy to log roll out of bed today. Getting back in is not so easy though since the wounds are still incredibly sore.
I am surprisingly adept at showering in the OAP shower this morning, and manage without 2 other people helping, what a bonus!
Today’s focus is going home. An occasion which incites completely conflicting emotions – joy and fear. Fear surrounds the issue of how I will cope, or more pertinently how H will cope on his own with 2 children, one of whom is what might be termed as “demanding”.
First though there is the burning issue of what medication I am going home with. I had assumed there would be a long list of painkillers but apparently all except paracetamol are stopped after today. Despite my hatred of painkillers this frankly scares me; I am just not sure how paracetamol can cover it! Mr Consultant is called and confirms that paracetamol should cover it and codeine if necessary. I feel I may be addicted to painkillers and suddenly it’s easy to see how that situation happens.
H arrives and it’s time to negotiate the tricky task of getting my bum onto the car seat. This achieved with some complex manoeuvres, I put the back of the seat down to relieve the pressure of the wounds and am driven home in manner of an invalid, or at least that’s what it feels like.
Once at home things are definitely trickier the bed does not go up and down limiting my “perching” options. To eat my only option is to perch on a bar stool by the kitchen worktop. Annoyingly we have a 30 year old kitchen with no beautiful island/breakfast bar situation, if we had a breakfast bar the next few weeks would be much easier! To write this I am lying on my side lifting up enough to free 2 hands. Lesson of the day: homes do not provide what is needed post surgery.
Luckily my old dad had a hip replacement recently and has as such regaled me with a grabber, bar stool, and toilet seat. Dads, where would we be without them…
January 9th 2017, Day 5- A journey around my street
The lack of painkiller situation left me with an achy night of tossing and turning, but I still woke up feeling positive about my day. Hang on, what day. What plans? The pain is one thing but I am doing a crash course in boredom and frustration. This is at least in part due to a lack of planning and some bad luck: the house is not set up for me. If we had a breakfast bar and comfy bar stools I could perch there and actually do something productive, but without that I am confined to standing and lying on the bed. My day was mostly me shuffling around the house being horrified by the untidiness. Apparently back surgery has left me with the drastic side effect of anal tidiness. Desperation to put piles of toys away into in unreachable places, stack the dishwasher, wash up and cook. Unable to do any of those frustration levels built.
I achieved only 2 things: to shower and to walk outside for 10 minutes. In those 10 minutes however I did notice more about the street I have lived on for 5 years than I ever have before. The pavements are so uneven it was pretty much a game of Russian roulette. The clouds hung low giving everything that quintessential British grey feeling. The air was damp with drizzle and the cold bit at my fingers, but I was outside and oh how glorious that was!
January 10th 2017. Day 6 – To have but not to hold…
The morning begins with some anxiety. Today Baby is starting nursery. This is much to my regret but the only option given that I can’t lift her for 6 weeks minimum, and probably 3 months. (She is 15 months old, extremely heavy and not yet walking.) Everyone is feeling a bit nervous, my parents have been entrusted with the job of taking her for her settling in morning but I know that the nursery is not easy to find and so am quickly trying to explain. B sees me eating my cereal and starts to scream, she wants to sit on my knee and eat it with me, as she loves muesli. Obviously she can’t do that today and the reality is that I can t even comfort her; I can t pick her neither up nor cuddle her on my lap. I can’t give her milk or read her stories or feel her snuggle into me. I can see her but I can’t hold her and its killing me. I convince myself that our bond could break within the next few weeks. Off she goes to nursery and I can t believe I am missing this pivotal day in her life.
Later a brochure pops through the door and onto the mat. It’s for one of those household companies who sell things that could help an older or less mobile person around the house, as well as other things. Usually it would get tossed in the recycle bin and not opened. Today is different; I am on the hunt for solutions. I leaf through it, supportive underwear…. walking sticks, commodes, arm chair booster cushions, extra supportive shoes, cushioned soles, arthritis solutions… and low and behold there are at least 3 things which could improve my situation (see below). So that’s it then, I am now ordering from a catalogue whose market audience are probably 10 years beyond pension age…..
The ipad bed holder arrives and Dad and I spend a good half an hour in contortionist poses trying to get it in the right position. Not something I would ever have dreamed of needing in my life but is proving very useful.
January 11th 2017. Day 7 – Speedy pensioners and other animals
An unsettled night of deep seated aches and pains, perhaps my walk yesterday over did it. After breakfast Baby stands at my feet asking to be picked up and cries when I don’t pick her up. Again there is absolutely nothing I can do to comfort her, not even have her on my knee. The only way to comfort her is for me to go out of sight, back to my upstairs lair, so back to bed I go. Later when our lovely nanny arrives and tries to put her on the bed with me she cries, armed outstretched for Nanny. My heart is breaking. I try my hand at playing shape sorter from a standing up position, using the grabber to pick up shapes and help B to get them in. I am so tempted just to get down on the floor with her….
Trying to focus on the good I decide it’s time for my first post operative walk all the way to the shops, oh yes, a whole quarter of a mile. I walk in a brand new mode: slow deliberate paces, head high, back straight. Several times I sense people right behind me in that awkward position of having to slow themselves down or overtake me. When they do overtake me I realise they are probably in their 70s. I am not just learning a whole new way of walking, I am living inside someone else’s body. Now I understand what it must feel like to be forced to walk slowly, either due to age or physical limitations. I can’t cross the busy road, as I would not be able to move fast enough. I walk through part of a car park and a car pulls out in front of me, expecting me to move, I can’t move fast enough so they have to wait. Instead of zipping across at the zebra crossing I shuffle at what must seem ridiculously slow pace. A mum from Elder Daughter’s school is on the opposite pavement. She spots me and says “hello”, as she walks away she looks unsure whether to ask the burning question “are you ok?” She decides to ask tentatively. “You seem to be walking a bit funny”.
Day 8- 1 week post surgery
Well it’s a week since my back became a home for 4 screws and a metal cage. What a week it’s been. The good news is that compared to this time 1 week ago I am in a much better situation. The horrible pain of days 1-3 is gone and has been replaced by an ache. Today in particular my walk was significantly more pain free. Things are on the up and I am cautiously optimistic.
Summary of abilities 1 week post fusion:
Getting on and off bed – can be done without help and is mostly only mildly painful, more painful in mornings
Showering- possible in a walk in shower without help. Washing hair is trickier only due to not wanting to get the incision sites wet.
Getting dressed- I can dress myself in loose clothes without help except for socks and support tights. Normal tights or skinny jeans would be impossible.
Sitting- can be achieved via perching on a bar stool, significantly less pain when doing this today. My consultant advised that sitting in a hard backed chair with lower back fully supported is possible but only for short periods. Physio recommended no longer than 10 minutes for sitting.
Incision sites/wounds – dressings are not to be changed (and have not been changed post surgery). Swelling is apparent and there is still pain in the sites when moving.