My Weekend in London

Ok so I’m now 1 year and 3 months post scoliosis surgery and I’m (almost!!) back to normal! I really can’t believe all the things I can do now, I work full time and study for a Marketing diploma in the evenings as well as doing my exercises. 

Despite that though, this weekend was a huge milestone for me and a bit of a  challenge!

I went to London to visit a friend and it was the first time I have been away for a weekend by myself on a train/public transport since my surgery and I was worried how I’d cope. 

I won’t lie, I DID find it difficult as I took a small case with me and it was awkward carrying it on and off the train, dragging it round the underground and up and down steps (HOW many steps in the London underground?!). Luckily my friends helped me and carried my case for me up the steps but there’s no way I could have done it alone. 

I also found the amount of walking difficult as we spent most of the weekend walking (HOW big is London??!) and rushing about on the busy underground. After a full day of walking on Sat I just had to lie down when I got back to my friends flat and after that I stupidly put heels on to go back out on the Sat night. Heels + the tube + hours walking = not good!

Anyway, after the weekend was over I started feeling a bit down that my back was so sore and that I felt like an old woman not being able to walk around all day, needing to sit down etc – a nightmare train journey home with no seats was the final straw!! I ended up sitting awkwardly on my case for over an hour which did not help my pain.

I hate the fact that I can’t stand for long so can’t really do nights out in busy clubs (i.e London where it’s ALWAYS busy) unless I get there really early to get a seat and stay in the same place all night, so bar crawls or going out later on are out of the question. It’s hard cos in London and alot of cities all the bars are spread out so you have to walk quite far to get from bar to bar. Also most of the time when I do get a seat they are horrible hard wooden chairs (WHY are these everywhere?!) which are uncomfortable or stools with no backs which are nearly as painful as standing. I don’t like saying anything either as I don’t want to ruin anyone else’s time.

Other people just don’t realise how hard it all still is for me and just because my op was a year ago doesn’t mean I’m “cured” and the fact that I look “normal” and also young is hard as I can’t exactly ask people to move so I can sit down on busy trains. I will say this now – it is STILL hard.

I don’t know where I’m going with this just that I was kind of happy that I’d been as it was an achievement for me. But it made me realise there’s still a way to go.. I mean I work full time now but I drive to work and it’s only a 10 minute journey. 

I’m not sure I could work full time if I lived in London, had to get the tube and rush about all day. 

I don’t think I can do a journey like that again for while! But at least I did it and have come such a long way to get through the weekend 🙂

A few months ago I don’t think I could have even gone, which is what I need to remind myself…so onwards and upwards I guess! 🙂 xx

Scoliosis Surgery – Extended Recovery

I really wanted to write this blog when I was actually going through my recovery to document my thoughts and feelings. I haven’t gotten round to it until now but I found some forum posts that I wrote whilst going through the extended recovery period and just thought they might be interesting to read….

 Scoliosis Surgery Recovery – 3months post op check up

Just got back now and everythings fine – phew! I got to see my surgeon himself which I was pleased about and only waited about 5minutes – must be a first! He said he can see it’s fusing well on the xray I had today, he showed me the xray I had done just after surgery and I could see about 4 broken ribs on it from the costoplasty – no wonder I’ve been in such pain lol. The xray from today shows the ribs have nearly healed but there’s still a way to go yet, he said I should expect to get pain from them for another 3months at least.
I told him that I was a bit unhappy with how my right shoulder blade protrudes and he said that I need to build the muscles up around it which should help to improve the appearance of it, so he’s referred me to physio. Hopefully this will work….

I also told him that I was expecting a bit more of a correction than I’ve got, as the first time I saw him he said he thought my spine was flexible and that he could achieve about a 70-80% correction (instead I got about 50%) but today when I asked him about it, he said that it wouldn’t have been safe in my case to go any straighter than he did, apparantly my curve was stiffer than he first thought too.

But the rib hump has completely gone which is a plus so my back looks good. He showed me some xrays from the side and the difference is amazing.

I don’t have to wear my brace anymore which is good and he said I can start going back to the gym again now but only to do walking on the treadmill and maybe cycling – he said definitely no to the cross trainer yet…! I don’t think I feel ready for the gym just yet, but it’s good to know I could if I wanted to I guess.

4 months post op: My first Physio Appointment Post Surgery

Today I had physio for the first time after my surgery (on the NHS) and I actually found it really good! Except for the fact I nearly slipped over on the ice outside the doctors – they havent gritted outside the drs, how annoying!!I didn’t really hurt myself but jolted my muscles – my poor back..

Anyway, my surgeon referred me for physio as he said I have a ‘weakened scapula’ which makes it stick out more than it should as the muscles around it are really really weak.

So the physio has given me some exercises to help strengthen the muscles and she said it should make my shoulder blade appear much flatter over time – which makes me happy as I’m quite self concious about it.

She’s also given me some gentle exercises to strengthen my lower back. She was really nice and kept saying what a good job they’d done on my back.

So I’m glad I went even though the weather is so bad I nearly didnt risk it!!

Scoliosis Surgery Recovery – 4 months post op: Tramadol Addiction
I’ve been taking Tramadol now for about 4months, and I don’t want to take it anymore, as my pain is not as bad as it was.

For the past couple of weeks I’ve only been taking 1 tablet (50mg) per day (in the afternoon usually) to try and cut down, which isnt alot I dont think?

If I miss this 1 tablet, I feel really weird.. lightheaded, sweaty and feel like I’m getting the flu or something, it’s really hard to explain but it’s not nice!! Then, as I can’t bear the feeling anymore, I take 1 tablet and I start to feel ‘normal’ again within an hour or so.

I cant take this any more, I just want to not have to take it! How do I cut down from 1 a day? I mentioned to my GP a few weeks ago that I was worried about getting addicted and she said I wouldnt be, so what’s going on then?!

Scoliosis Surgery Recovery – 4 months post op: Post Surgery Blues

Today I was supposed to go into work for a couple of hours for a meeting to discuss going back to work and a few other things, my boss said he’d pick me up (I’m still in too much pain to drive) at 1pm.

So I take all morning getting ready which is a real struggle at the moment, it took me about 20 mins to just get my tights on this morning! Then when i’m sat in my coat all ready to go he rings me and says he’s running late can we do it tomorrow! By which point I just burst into tears on the phone, now I feel stupid !!

But it was just the fact that it took so much effort with the amount of pain I’m in and I’m gonna have to do it all again tomorrow now!! I don’t think he realises how much effort it takes just to get dressed atm. Also I spilt milk All over the floor earlier and can’t bend down to clean it up – this again made me get all upset. I just feel useless and emotional right now 🙁

Scoliosis Surgery Recovery – 6 month post op check up:

Just a quick update on me. Today I had my 6month post op check (even though I’m nearly 8months post op but never mind..) and all is ok in terms of metalwork etc… phew..

Am a tad disappointed though as I ended up seeing a registrar and had to wait hours. He seemed to know what he was doing but would have liked to have seen my surgeon really. My surgeon was there but was running really behind and by the time I’d been to xray and came back think he had gone…! 

Just wish I could have gone to xray as soon as I got there instead of waiting aages to be told I needed an xray…… well I could have told them that lol. Just a bit annoying after waiting ages for an appointment, having it cancelled and rearranged etc…

Anyway at least all is ok, I feel like Im finally getting back to myself again now after 8 months and starting to get my life back – I started going back to the gym at 5 months post op and I even went out dancing on Saturday night! 😉 yay!

Post Scoliosis Surgery… Physio

I’ve been having physio ever since my scoliosis surgery just over a year ago but I’m still not 100% there. 

My lower back feels very weak and starts to hurt at the end of the day or if I’ve been standing or sitting for some time, although lying down provides relief.  When I’m at the gym or walking I often feel like holding my lower back for support. My surgeon has said this is normal as I have such a long fusion as the last 3 remaining discs are taking all the pressure, he said over time it should improve as my back gets stronger.

I’ve been having physio to strengthen my lower back and also my right shoulder over the past 6months or so, as the muscles were cut through to get to my ribs there is very little muscle there now which has caused my right scapula to ‘wing.’

The exercises I was given initially were very gentle ‘pilates’ type exercises to avoid damaging the fusion and also some exercises using a resistance band for my shoulder issue.

Today I discussed with my physio the possibility of using a pilates ball to strengthen my ‘core’ muscles, as the core muscles effectively support the lower back. So if these are strong this can help keep the lower back strong (which is important for me as I only have 3 unfused discs at the bottom of my spine) and reduce pain. She said she can give me some gentle exercises to use with the pilates ball at my next appointment but that just sitting on it can really help. 

So, I’m going to get one and see if it helps just sitting on it for half an hour a day while watching TV. Watch this space!

Scoliosis Surgery Recovery

Scoliosis Surgery Recovery

Scoliosis Surgery Recovery – Introduction

Recovering fully from scoliosis surgery can take up to a year or sometimes two depending on how old you are when you have the surgery. The spine takes about a year to fuse and during this time it’s important not to do anything that may damage the fusion as it takes such as impact sports or heavy lifting.

The problem with scoliosis surgery recovery is that it is very slow and it’s easy to get frustrated that things aren’t improving – I get very frustrated at times! 

But it’s important that when this happens to just look back a few months and remember how many more things you can do now. With scoliosis surgery recovery you often see progress month by month rather than week by week.
Things DO get better believe me, I’ve been there 🙂

Scoliosis Surgery Recovery – Journey Home from Hospital

My dad picked me up from hospital to take me home, which was about an hours journey by car. I had been shown how to get in and out of a car safely by the occupational therapist at the hospital but it was still very uncomfortable getting in. 

My tip: take plenty of cushions with you in the car! I had two behind me and one in front of me for support. I was also in my brace which was really uncomfortable but I think helped make me feel more supported. 

The journey was painful, I felt EVERY bump believe me! And getting out of the car was just as bad. I still find it awkward getting in and out of cars now but that’s for another post!

Scoliosis Surgery Recovery – Recovery at Home

When I got first got home after scoliosis surgery I think I realised for the first time that I was a bit taller than before surgery, all the kitchen cabinets and the sink in the bathroom looked lower and it was all very strange. I also remember trying to sit on the sofa and just couldn’t as it was waay too low! 

Luckily before I left the hospital an occupational therapist had my parents measure the heights of all our sofas and my bed and recommended that we got a higher chair for me to sit on (like the one I had by my bed in hospital – I called it a ‘Grandad Chair.’) We got it from Ableworld but it was very similar to the one below from Amazon:

My parents also bought me a table like the one below:

I could then sit on my ‘grandad chair’ to have my meals or go on my laptop. It also slid under the bed too so you can sit up in bed to eat meals. This table was invaluable to me and I used it everyday for months and months following the surgery.

So just a bit of advice really, you will probably need a decent chair with a straight back (plus LOTS of cushions) as there is no way you can sit or lounge on a sofa for a good few months!

Another really handy piece of equipment during scoliosis surgery recovery is a grabber:

This was also invaluable to me as it gave me back a little bit of independence. I used it to pick things up off the floor if I dropped something as I was not allowed to bend for 3months, and actually I still use it now as once you have a spinal fusion it’s awkward bending down anyway – even once you’ve recovered!

I also had a raised toilet seat (this is a must as you can’t get low enough without it at first!), crutches and a stool to sit on to wash myself as I couldn’t get into our shower at first (it’s over the bath). All of these things were provided by the hospital.

The best thing to do before you buy anything is check with the hospital what they will provide you with first as they all tend to be different.

Scoliosis Surgery Recovery: First Few Weeks at Home

The first few weeks of scoliosis surgery recovery at home were difficult, I won’t lie. You may need someone around to help you for at least the first few weeks – my mum took two weeks off work to look after me. 

Just to give you an idea of what it’s like for the first couple of weeks, my daily routine would consist of: 

    • Getting out of bed – This was a chore in itself! To get up was very difficult and I could no longer just sit up to get out of bed like I used to. Instead I had to ‘log-roll’ out which is basically just rolling onto my side and sitting up (I still do this now one year later as it’s easier!!) and then supporting myself on my crutch/someone to stand.  
    • Having a wash – my mum would help me with washing for the first few weeks as I struggled to do this alone. She would set up my perching stool (provided by the hospital) by the sink in the bathroom and put all the towels down on the floor and I would basically use this stool to sit on and have a body wash. I wasn’t allowed to get my scar wet for the first couple of weeks at home (your surgeon will tell you when it’s ok to do so) so it was a PAIN washing my hair during this time. I used a lot of dry shampoo I can tell you!! I can recommend stocking up on dry shampoo and also taking some to the hospital with you so you can freshen up a bit.

  • Getting Dressed – I was able to do this by myself when I was discharged from hospital but it was and still is a struggle. Try putting trousers or tights on without bending your back – not easy! I used to put the clothes I wanted to wear high up on a shelf or something so I could reach them without bending.
  • Painkillers, Painkillers and more Painkillers! I was put on tramadol, paracetemol, antibiotics and piritin (to stop the itching that the tramadol caused) when I was first discharged from hospital. I took my painkillers in the morning at about 6am, lunchtime, tea-time and before bed. I was put on antibiotics as the doctors were worried that I had an infection at the top of my scar as it had started to widen, thankfully I didn’t! So the antibiotics were more of a precautionary measure.
  • Sleeping – I spent a lot of the day in bed sleeping for the first few weeks. Mainly because the painkillers just knocked me out! But it also felt better on my back to lie down than sit up. I could only lie flat on my back for the first few months as any other position felt too uncomfortable. In fact I still find it uncomfortable lying any other way now, which is weird as I could never sleep on my back before surgery.
  • Eating/Drinking – I would get up and sit on my ‘grandad chair’ in my brace (with about 3 cushions behind me!) by the side of my bed to eat my meals, using the table that I mentioned above. I would try and increase the amount of time I spent sitting each day but to start with, it was difficult to sit for longer than an hour or two and then I would need to lie down. If I needed a drink when I was lying down I couldn’t just sit up, I would have to ‘log-roll’ and actually sit on the side of the bed. To solve this issue I mainly used beakers with bendy straws so that I could drink lying down! I would recommend stocking up on bendy straws for the immediate post surgery stages. You will also need someone to make meals for you for the first few weeks as you can’t lift anything or bend to get into cupboards etc, if this isn’t an option then frozen/pre-maid meals that you can just heat up in the microwave are ideal.
  • Walking – I tried to walk for a little each day to keep my strength up – this is very important. For the first few days at home I used my crutches to walk around the house for about 20 minutes, then I would need a lie down / sleep. It’s amazing how doing so little can really tire you out after this surgery. After about 4-6 weeks though I was walking round the block without my crutches for about an hour a day and my mum used to walk with me. Luckily it was summer so it was a good time of year to go out for a walk. I couldn’t believe how quickly I improved though and with my brace on I could soon walk pretty much like I used to before surgery, at a normal pace, by about 6 weeks post op.

Scoliosis Surgery Recovery: 2 Months post op onwards

After the first few weeks you find you can do more and more for yourself, like make yourself a meal and walk much further. At this stage it can start to get boring, as you are not allowed to do much but you do feel better in yourself. I was signed off work for 3months, which was then extended to 4 months! I did start to do work from home after 2 months though. 

It’s important to remember though that I was 24 when I had the surgery, teenagers tend to go back to school part time after about 6-8 weeks.

I kept myself busy during this time with DVDs, magazines, daytime TV, Haribo ;), puzzle books, and the Internet. I even took up cross stitching and baking and became quite good at making cupcakes! 🙂

I also spent a lot of time on scoliosis support forums speaking with others that had been through the same thing. This really helped me as it stopped me from going mad with worry if I felt a new pain or twinge as I could see others were experiencing exactly the same! 

You will feel new pains and the odd twinge or “electric shock” type pain, which are usually the nerves and muscles “waking up” and it’s normal to experience this after this type of surgery. 

It’s also normal to be in pain for quite/uncomfortable for quite a while after the surgery, it’s very frustrating but it doesn’t mean there is anything wrong, your body just needs time to recover.

Keep Moving!

I know I’ve said this already but it’s important to keep moving as much as you can to prevent circulation problems. I say this because at about 6 weeks post op I experienced extreme swelling in my right leg and ankle and when I pressed my fingers into my ankle it left an indent. 

I went to the Dr who was worried because I had just had surgery that I could have a blood clot! Needless to say I was terrified and had to have scan on my leg and blood tests immediately. 

Thankfully I didn’t have a blood clot, instead I had oedema caused by me being immobile for so long. To reduce your risks of blot clots and swelling in the legs post surgery it’s important to keep getting up for regular walks, doing simple leg exercises, drinking lots of water and you could even wear some flight/circulation socks. (They do provide you with these when you are in hospital to wear in bed but I didn’t get any to take home, might be worth asking about this before you are discharged.)

Feeling Down Post Surgery

It’s really easy and I would say completely normal to feel down after this surgery. It’s a huge thing to go through, a massive change to your body and at times I found it all quite hard to deal with. I definitely suffered from the post surgery blues – wondering what on earth I’d done to myself and whether it was the right thing to do.

I was worried that my back would move and go back to how it was before surgery. I was constantly taking photos of my back and comparing them to see if there were any changes – it became an obsession.

If something looked slightly different on one of the photos or was taken from a different angle I would really work myself up with worry. From reading stories on the forum I could see it was normal to feel this way, other people suffered from this type of paranoia too post surgery. And I guess it made sense to feel so worried after all I’d been through.

I also got fed up of the pain, stiffness, not being able to do things for myself, not being able to pick things up that I had dropped and having to sit up ‘straight’ all the time with my brace on. I longed to lounge on the sofa like the rest of my family as at that point I couldn’t see myself ever being able to again. But of course, at around 3months post op I could sit on the sofa again – and it was the best feeling ever!! 🙂

Hope this helps, please feel free to contact me or comment below if you have any questions about scoliosis surgery recovery and I’ll do my best to help.

If you’re feeling a bit blue post surgery, check out some inspirational quotes that helped me feel a bit more positive during my recovery.

Louise xx

Post Surgery: Hospital Experience

Waking up from scoliosis surgery

When I woke up from my scoliosis surgery I remember feeling no pain, I felt as light as air (thank god for morphine!) and I actually remember thinking ‘I’ve had hangovers worse than this.’

I was in ICU, (intensive care unit) I had tubes all over me and was attached to several machines that were monitoring my heart rate, blood pressure etc so I could hear these beeping. I could also hear nurses talking at the other end of the room and I remember wondering at one point if I’d even had the surgery.

I also remember feeling very itchy, I was constantly scratching my chest which the nurse said was a side effect from the morphine and gave me some piritin to help. I also had a really dry mouth so they gave me some water, I did ask for some toast but a nurse said that as my bowels hadn’t “woken up” properly from the anaesthetic that I wasn’t allowed any toast right away.

I had no sense of time in ICU and it is all a bit of a blur, I kept falling asleep and waking up hours later and I didn’t know what day it was. I also had double vision which I was told was from the meds. I could see (two!) clocks on the wall so I knew time had past but it just felt surreal.

I remember speaking to my dad on the phone just hours after the surgery, apparantly he had rang ICU before he went to bed to see how I was and they let him speak to me. I can’t remember what I said or if I even made any sense and after I fell asleep and woke again I felt confused and kept thinking that I’d dreamt the whole converstation.

My boyfriend said that he had seen me as they were initially waking me up from surgery but I don’t remember this.  He said that I looked like I was in pain and it really upset him seeing me like that and that he went home not knowing if I was ok or not but I honestly don’t remember. I only remember waking up in the ICU after my family had all gone home for the night wondering if I’d even had the surgery.

The next few days were a blur passed by so quickly. I was in and out of conciousness and struggled to speak to my family when they visited because I just couldnt keep my eyes open because of all the drugs I was on. I think it was a bit much for my family to see me like that as my mum and boyfriend had to leave to room a few times as they felt faint. 

At the time I couldn’t understand why as I felt fine in myself, just tired. I dread to think what I looked like to them though with all those machines and wires attached to me. In a way it felt like it was happening to someone else.

The ward post surgery

Content to follow…my experience of scoliosis surgery and the immediate post op period in hospital.

Scoliosis Surgery - 1 year post op

Scoliosis Surgery: One Year Post Op

Today I am one whole year post op from my scoliosis correction surgery and I honestly can’t believe how far I’ve come and what I’ve been through in just 12 months. This time last year I had not long woken up in HDU from the extensive 10 hour scoliosis surgery where two rods and 21 screws were inserted into my spine to correct my severe scoliosis curvature and change my life forever.

I will never forget that room, the sounds of the machines, the feel of the wires all over me, the voices, the hospital smells and the cloudy confusion in my head. I remember at that point I was too scared to even look into the future, merely focusing hour by hour on getting better.

If I look at my life as it is today, at that moment one year ago I never thought I would be able to achieve all that I have after such huge life changing surgery.

Really that moment was where my life began.

Today, I am taller, straighter and I am now working full time in a job I enjoy. I also study for a distance learning course and I even manage to go to the gym too! A few months after the surgery I was in so much pain I thought I’d never be able to work full time or even look at a gym again.

I won’t lie, it’s been a tough year for me physically and emotionally, I look back at the early stages of recovery and sometimes I can’t believe that I actually went through all that I did, or was even strong enough to. In a way I am proud of myself for having the courage and determination to get through it and get myself back to work and normality. It’s made me so strong as I now feel I can achieve anything I want to – after all – if I can get through such a massive surgery and come out the other side, I can deal with anything.

The first few weeks of recovery were the worst, I remember the first few days I was confined to my hospital bed and before surgery I never realised how hard that would be. I had never even been in hospital before so it was a bit of a shock! I couldn’t sit up by myself to eat, I couldn’t go to the toilet, I couldn’t even wash myself! After a few days in hospital, your dignity goes right out the window…

For the first few days I was very ill and couldn’t keep anything down. Believe me when you have just had sections of 4 ribs removed (I also had a procedure called a ‘costoplasty‘ to reduce the appearance of my ‘rib hump’ which involved my surgeon cutting sections from my ribs) being sick is incredibly painful. 

I had to have anti-sickness injections injected directly into the muscle of my thigh each time I was sick and I have never had an injection as excruciating as that in my life! I was also put on a drip as I wasn’t eating and as a result I lost half a stone. As the nurses were worried about me losing so much weight they monitored fluids going in and out of me (nice!) and made me see a nutritionist who prescribed me these disgusting drinks, which apparently had 300 calories per bottle, but they also made me sick! 

The situation was not helped by me being in a ward full of women who were not as ill as me and who constantly talked about food… ‘oooh this cake is lovely, I wasn’t fond of the soup tho’ not what you need when the thought of food makes you want to vomit…

I remember lying there one night just praying that one day I’d be able to get out of bed by myself and walk to the toilet – that’s all I wanted. I was actually jealous of other patients in my ward that were getting out of bed by themselves and walking about – as at that point I honestly couldn’t imagine ever being able to do it again. 

I will cover my two weeks in hospital following the surgery in more detail in further posts but I just wanted to highlight that going through this surgery has really made me appreciate being able to do small things like that. Things I used to take for granted everyday.

Today, I still find it hard doing some things like getting dressed (try getting dressed without bending your back – not easy!) bending down, tying my shoelaces and putting tights and socks on but with each month things get easier. I have just learnt to adapt how I do things now.

Again, when I look back to a few months post op where I had to use a grabber to pick things up, a raised toilet seat and I couldn’t even get low enough to sit on the sofa, I realise how far I’ve come.

I remember almost crying a few months ago when I had my first night out since surgery and actually danced again, something I never thought I’d be able to do at one point.

Even after a year, I am not 100% back to “normal” and I sometimes wonder if I ever will be. I still feel stiff (like I have metal rods in my back!) and get sore after a long day or if I am on my feet alot but I am just so thankful that I’ve come out of this surgery and can do all the things I used to do.

It has been tough emotionally on me too, my body changed shape overnight and psychologically this was and still is very difficult for me to deal with. I guess I feel like a different person, like this is not my body. I still check my back in the mirror everyday and worry it will go back to how it was but I have to believe that the metalwork inside me is strong and will hold everything in place.
I wanted to prove with this post that, you CAN lead a normal life after scoliosis surgery, it just takes time to recover. You might not see an improvement week by week during recovery from this surgery, which can be incredibly frustrating, but if you look back months you will notice how you are slowly doing more than you first could. 

This always makes me think of one of my favourite quotes, ‘you can’t see the view if you don’t climb the mountain.’

Here is photograph of my scoliosis scar as it is now, I can’t believe how well it’s faded to be honest!
scoliosis surgery scar
And just for comparison, here is a photograph of my back before scoliosis surgery:

Anyway, I’m off to eat the Haribo cake I was bought to celebrate my one year “rod-i-versay” – yummy 😉

Bye for now!

Louise xx

Image credit: DenisDenis