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!

Preparing for Scoliosis Surgery

I thought I'd write a post about preparing for scoliosis surgery, as I know that before my surgery it was something I was worried about. It was difficult to know what I should be doing and how to prepare.

Firstly, I recommend that anyone facing this surgery, as well as their close friends/family members should read Scoliosis Surgery: The Definitive Patient's Reference (3rd Edition). It's a really easy to read book that is written from the perspective of somebody who has been through the surgery. It contains loads of information on how to prepare for scoliosis surgery, what's involved in the surgery itself, recovery tips and more. 

It really helped me and my family to understand what I would be going through and I think even my surgeon was surprised at how much I knew about scoliosis and scoliosis surgery having read this book! 

I also recommend that you get talking to others who have been through the surgery, join a support forum and ask as many questions as you can think of. 

I spent a lot of my time during the months leading up to my surgery emailing and chatting to others who had been through the surgery. The amount of help, advice and support I received was invaluable and inspirational. I found that the people I spoke to had had amazing results and lived a normal life post surgery, which reassured me that I was doing the right thing.

So remember, you're not alone in this. It's good to talk about what you're going through with others who understand. If it wasn't for the help and support of others going through the same thing, I doubt I would have been able to go through with it myself.

Some practical ways to prepare in the months leading up to scoliosis surgery are: 

• Exercise - I got myself as fit as possible as I thought the stronger I was, the better chance I'd have of a quick recovery. Post surgery it's important to have strong 'core' muscles and strong leg muscles to support your back. Leading up to the surgery I did alot of swimming, Pilates and I went to the gym about 4 times a week. I guess getting super fit was my way of regaining control of a situation that was out of my control. Exercise also helped me to "de-stress" and forget about the surgery for a while.
• Diet - I tried to eat as healthy as possible, I ate lots of fruit and vegetables, drunk plenty of water and I also took vitamin tablets. Again, I just wanted to give my body the best chance possible (remember you should always check with your doctor before changing your diet - places like Holland & Barrett offer a huge range of vitamins and supplements).
• Get a haircut - I had my long hair cut into a bob before surgery and I'm glad I did! I couldn't wash my hair for a good few weeks and it looked a right state in hospital all matted from lying down for days on end. It's really difficult to wash your hair once you are home recovering too, as you can't get your scar wet and it's impossible to lean over the sink or bath. It's alot easier to manage with short hair believe me - and don't forget to stock up on dry shampoo!
• Quit Smoking - If you smoke, you should try and quit straight away! This is because smoking can actually interfere with a fusion and stop it fusing properly. If you're worried about this, speak with your surgeon.
• Check what equipment your hospital will provide you with post surgery - you will need some equipment to help you cope around the house post scoliosis surgery. Such equipment includes a good chair, a raised toilet seat, a grabber (to pick things up off the floor), a bath/shower chair (useful to help with shaving your legs!) and anything else you can think of that will help you to stay as comfortable as possible - i.e. lots of cushions! The hospital should provide you with most, if not all of these things. So make sure you check with them before you buy anything!
• Stock up on DVDs - or books or magazines or anything you think will help keep you busy whilst at home recovering. The first couple of weeks you will feel too ill to do much but after a few weeks at home with daytime TV - believe me, it can get boring! 
• Prepare your meals in advance - if you live alone you will need a bit of help making meals your for a while. If this isn't an option, a good idea is to make some meals before you go into hospital and freeze them so that you can just heat them up. You could also stock up on ready made meals, tinned and easy to prepare food.
• Stock up on toiletries and anything else you may need for when you get home, as you won't be able to leave the house for a good few weeks. Even after then it can be daunting venturing into busy shops immediately post surgery - I know it was for me - I was scared in case anyone bumped into me! Of course you can always send other people out to get what you need, my mum was great at picking up my prescriptions for me. :)
• Stop taking Ibruprofen (if you take it) about two weeks before surgery. I was told this at my pre-op - if there are other meds or supplements you shouldn't be taking you will be told at your pre-op. The best thing to do is check with your Dr/surgeon if you are concerned about anything you are taking.
• Pack what you need for hospital - in plenty of time so you can get everything you need without getting stressed. Take a look at my hospital list that I created before I went in for my surgery for ideas on what to take with you. :) Travel sized toiletries are ideal.
• Pamper yourself - Don't forget to pamper yourself a bit leading up to surgery - this can help you relax and take your mind off things which is very important. Plus you deserve it after what you are about to go through! I would recommend having some fun with your friends or (for the women!) getting a leg wax (as it's difficult to shave your legs after surgery for a long while!!) and it just makes you feel alot better in yourself, which is important.
• Relax - I know it's difficult but you really do have to relax. I really stressed myself out before surgery and suffered with insomnia, anxiety, palpitations, panic attacks - the works! Try to get a good night sleep before the surgery if possible (I didn't - even with sleeping tablets) and try relaxation techniques such as hypnotherapy or listening to some relaxing music. Exercise such as pilates or swimming can also help you to relax, whilst strengthening your back muscles at the same time! 
 

I hope this post has been useful, please feel free to contact me if you have any questions about preparing for scoliosis surgery and I'd be happy to share my experiences with you. :)

Raising Money for Scoliosis!!

Please help me raise money for the SAUK - The Scoliosis Association! 

Now and again I may recommend products that have helped me deal with my scoliosis in order to help others suffering with the condition.

If you buy any products after clicking on the links/ads in this blog, half of all commissions will be donated to the The Scoliosis Association.

 So if you like the look of any product featured on this blog, please feel free to shop and share with your friends as it's for a fantastic cause! 

Thanks, Louise :)

  

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!

Post Scoliosis Surgery - Back to Work!

Content to follow... my experiences of going back to work following scoliosis surgery.

Post Scoliosis Surgery... Bye Bye Brace!

Content to follow...my experiences of removing my brace following scoliosis surgery.

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.')

My parents also bought me a table like this:
 
 

I could then sit on my 'grandad chair' to have my meals or go on my laptop.

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 recovery from scoliosis surgery is a grabber:

 

This was invaluable to me as it gave me back a little bit of independance. 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 post scoliosis surgery 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 alot 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 alot 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.

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 alot of time on a scoliosis support forum 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 blod 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 and the 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: Now or Never...

This part is all a blur, sometimes I wonder how I got through it at all.

I had to be at the hospital at 3pm on the 28^th July 2010, that morning I was surprisingly calm and a little excited.

I knew it was something I had to deal with and I think after waiting a year I was keen to get it over with and excited to finally deal with it and move on with my life.

When we arrived and I saw all the other people on my ward in their hospital beds I did get a little upset – I’d never been in hospital before and it was all a bit overwhelming.

The worst part was when my family left and I was in hospital alone.

I started to unpack my things and spoke to the lady in the bed next to me who told me all about ‘Percy the Peacock’ who apparently woke everyone on the ward up at 4am each morning.

 I also had some tea and just kind of sat there on my bed, worrying.

I didn’t know what I was supposed to do. Should I get into my pyjamas’? Get into bed? Or just sit on my bed?

My scoliosis surgeon came to see me before I could decide what to do and we spoke a bit about the surgery and if I had any questions.

I felt slightly better after speaking to him but just knew I wouldn’t sleep at all that night.

I was right, I didn’t, despite taking two sleeping tablets the nurses gave me.

I read my book instead, although the words didn’t go in.

The Day of the Surgery

The morning of the surgery I was woken at 6am by the nurses administering the morning pills shortly followed by breakfast. I wasn’t allowed any breakfast but felt so sick with fear I doubt I would have been able to eat a thing anyway.

It all felt kind of surreal, like it wasn’t me this was happening to and I was watching somebody else.

I was made to have a shower, change into some paper pants and a gown and just wait. Those were the longest few hours of my life; every time a nurse walked past the ward I looked up expecting it to be time.  If I’d have known how long it would be until I had another shower I would have taken time to appreciate that ‘last shower.’ As it goes I was so nervous, I kind of showered without even realising what I was doing.

My parents came back to visit me again but weren’t allowed in the ward at this time, so I met them in the day room. It didn’t feel real that in a few minutes I would be called away and be taken for major surgery - it kind of felt like it wasn’t happening to me, like I was in a dream.

We chatted for a bit, I can’t remember what we spoke about, just small talk I guess to pass the time and take our minds off what was about to happen – I couldn’t really concentrate on what was being said if I’m honest.

After what felt like an age I was eventually called through by one of the porters that they were ready for me. I couldn’t help thinking that this could be the last time I would see them again.

I had to sign some forms and answered a few questions then I got into my bed and the porter wheeled me to the operating theatre. He tried to make a few jokes to take my mind off things but it didn’t really help my nerves.

This was it, now or never.

Scoliosis Surgery : A Difficult Decision...

In January 2009 I was referred to a scoliosis surgeon by the spinal specialist that had been monitoring me all these years. He could tell I was confused about what to do and suggested I had a chat with a scoliosis surgeon to see what could be achieved.

I was nervous about seeing an actual scoliosis surgeon; it made it all more real. Would I would be told I needed surgery? How would I cope with this?!

I went to see the scoliosis surgeon in April 2009. During the appointment I was told matter-of-factly that I was at risk of progression by 1-2degrees a year due to the severity of my curves.

He also said he would do the surgery if I wanted it, if not there was not much he could do apart from monitor me every 5 years.

He told me my curves measured around 83 degrees, and that they would start to affect my organs at 85 degrees.

Just to give you an idea of severity, anything of over 50degrees is classed as ‘severe’ and therefore surgery will be offered on the NHS.

After the appointment with the surgeon I was distraught.

The surgeon had confirmed my worst fears – the scoliosis is likely to progress.

At that moment I felt my world collapse, I knew that I’d have to have this surgery, be it now, in a few years or later on in life.

I just didn’t know what to do; it was one of the worst times of my life and one of the hardest decisions I’ve ever had to make. 

Do I have surgery now and risk paralysis?

Or do I have surgery later on in life and hope it wouldn’t get any worse? 

I couldn’t sleep, I couldn’t eat. It was all I thought about. I was terrified and I just didn’t know what to do for the best.

It was worse because I knew that only I could make this decision.

A stressful time

The next few months were some of the worst months of my life. I felt alone and scared and just didn’t know what to do for the best.

My way of dealing with it all and gaining some control was to get as much information on scoliosis and the surgery as I could.

I decided to join a support forum and began chatting to others with scoliosis and who had been through the surgery themselves.

It was a revelation to me. I began to feel less alone and alot happier for the first time in 9 years.

I also began to feel ‘normal’ as I saw pictures of other people’s backs – they looked just like mine!! My back was normal for someone with scoliosis – I wasn’t a freak!

I researched late into the night, read through ALOT of surgery experiences, spoke to others with the condition, read scoliosis surgery books including Scoliosis Surgery: The Definitive Patient's Reference (3rd Edition) and this really helped me to prepare for surgery and learn all the surgical terms and techniques. If I was going to go through this I wanted to know EVERY little thing about it.

A tough decision

Eventually, after months of research, tears and stress, I decided on the surgery.

I knew that it would be difficult and a long recovery, but I knew if I didn’t go through with it, my back would continue to deteriorate with age.

I don’t think I could have made this decision with the support of others on the forum, as reading their experiences and seeing their surgery photos and how well they were doing after surgery made the whole thing seem less scary.

I guess I wanted to take back control of the one thing that had been controlling me all these years.

I just wanted to be normal.

Waiting

I ended up waiting for a whole year for the scoliosis surgery, during this time I suffered panic attacks, nightmares, insomnia, heart palpitations... I was just petrified.

And the fact that I had never been in hospital before didn’t help.

I was scared of the unknown. 

My emotions were everywhere; I kept talking myself out of it, changing my mind from one day to the next, worrying whether this was the right thing to do.

My life had been put on hold whilst I waited, I felt like I couldn’t make plans or pursue the career I wanted as I just didn’t know when my surgery date would be.

I couldn’t see my future as I just didn’t know what would happen.

I knew it was highly unlikely, but I couldn’t stop worrying that something would go wrong and that I’d end up worse off than I was, maybe paralysed – how would my family and I cope?

I felt selfish for putting my family through all this stress too and would often cry myself to sleep.

During the day I went to work as normal, studied for a diploma, and tried my best to smile, enjoy myself and continue my everyday life.

I even went on a holiday to try to relax and forget about it all, but the holiday was ruined by my panic attacks and palpitations.

It was always in the back of my mind.

I just wanted this all to be over.

I concentrated on reading everything I saw about scoliosis and the surgery, getting super fit at the gym and eating healthily.

I wanted to give myself the best possible chance of a smooth operation and recovery.

The day I was actually given my surgery date I was at work, I remember shaking when I read the text from my dad telling me the date.

I stared at my phone for about 10minutes in shock - this was what I had been waiting for all these months...it was now real.

What on earth was I doing?!

My Scoliosis Journey: A Secret Struggle

After the initial diagnosis of my scoliosis at 14, I was monitored by an orthopaedic specialist over the next few years – thankfully my scoliosis didn’t get any worse.

But the psychological damage did.

You would be surprised at how much having a twisted back affects your self-esteem, especially as a teenage girl.

I felt ugly and deformed; I spent all my time in large, baggy clothes – wearing a size 12 when I was a size 8 to hide my rib hump.

I’ve lost count over the amount of times I burst into tears over how I looked.

How many times I saw my back in one of those three-way mirrors in changing rooms, or a photograph and just wanted to cry.

It’s funny; before I was told about my scoliosis I was proud of my body, now I just wanted to hide it.

I hated summer and holidays the most. I longed to be like the other girls on the beach, able to wear little vest tops and bikinis without feeling self-conscious. I was young and slim; I should have been showing off my body not hiding under baggy clothes.

Every year when I went to see the specialist I just wanted to scream out ‘please just fix my back’ but I was too scared of the risks and my parents were dead against the surgery, worried I would end up worse off.

They didn’t realise how much I suffered psychologically, how I constantly looked at other people’s backs and wished I looked like them.

I knew the curves were bad but I buried my head in the sand, I just didn’t want to deal with it so I convinced myself they would never get worse and I tried to get on with my life.  I went to university, went out clubbing, got a boyfriend, had nice holidays. I just wanted to be normal, enjoy myself for a change. 

All the while with this hanging over me - always in the back of my mind.

I didn’t tell anyone about my back, my friends at uni, not even my boyfriend. I was too ashamed.

In a way, I think this made it worse as I had no-one to talk to. I became withdrawn and unsociable. If I only I'd have had the courage to talk to my friends about it I would have felt so much better, I know this now. But sometimes it's hard to actually admit you have a condition and deal with it.

From bad to worse...

When I was 21 the pain started.

Three years of drinking, partying, eating junk and lack of exercise whilst at university had taken its toll on my back.

I developed excruciating muscle spasms around my curves as the muscles struggled to support my curving spine. I also started to suffer from painful pins and needles and numbness in parts of my back from the curve pressing on my spinal cord.

I tried everything to get rid of the pain.

First was the NHS physio, which in my opinion was a complete waste of time. In my experience, the NHS physio’s I saw  didn’t seem to know what to do with people who have scoliosis. A few weeks of stretching exercises and I was “cured” and sent on my way, still in pain.

Determined to get rid of my pain I tried acupuncture, swimming, took Pilates classes and joined a gym in an attempt to get fit and strengthen my back. I even resorted  to paying privately for more physio, which I really couldn’t afford. 

The weekly massages from the private physio as well as the exercise helped to manage the pain, but it was always there.

For the next couple of years I was miserable, I felt deformed and was in pain.

To make matters worse I started researching scoliosis on the Internet, and was distraught at what I was reading. Scoliosis did get worse. Especially severe scoliosis like mine, in fact it could progress by 1-2 degree a year due to gravity pulling on the spine. I also read that the strain placed on the back during pregnancy and also the menopause could cause scoliosis to progress.

This was not what I had been told by the specialists I’d seen in the past, in fact, they gave me the impression that once I’d stopped growing it wouldn’t get worse.

The worst part was that I read that if it progressed so far it could have serious consequences as the twisting rib cage could push against the heart and lungs causing physical damage.

I began to read stories on forums about people with untreated scoliosis that had progressed so much they were on oxygen to help them breathe.

As you can imagine I got myself into quite a state reading about what could happen to me if my scoliosis was left to progress throughout my life.

I became depressed and felt that I had nothing to look forward to in life – either a horrific operation or let myself become more and more deformed, potentially compromising my health.

I tried to convey my worries to my parents, but it usually ended in a row, with them telling me to stop reading things on the Internet and to believe the specialists we had seen.

The more stories I read though, the more I believed that it would get worse.

These were real people, all with similar stories, discharged as teenagers only to be having surgery in their 40s after their curves had progressed during the menopause.  

My Scoliosis Journey: The Beginning

I thought I would just backtrack a bit and write about when I first diagnosed with scoliosis when I was 14. How I felt and what I went through in the 10 years between my initial diagnosis and my scoliosis surgery last year.

So...here goes.

It all started when I was 14. I was a normal teenage girl, obsessed with Ben from A1, falling out with my parents, hanging out with friends. Like many teenage girls I felt self-conscious and awkward about my body.

Little did I know that my body issues were about to get so much worse.

From the age of 13, like many other teenage girls, I had started to notice some changes with my body. I only wish that these changes were just puberty related.

 My ribs began to stick out on my right side and my right shoulder blade stuck painfully into the hard plastic chairs during school assembly. My parents were always telling me to ‘stand up straight,’ thinking that I was a “normal” slouchy teenager - they never imagined that there might actually be something seriously wrong with me.

After a few months of complaining about my ribs and shoulder blade to my mum she made an appointment with the Dr, I think mainly just to keep me quiet.  ‘It won’t be anything serious,’ she said ‘but best just to put your mind at ease.’

 To be honest, I didn’t even want to go. I was expecting the Dr to laugh at me and send me home for wasting her time. After all, it was only some sticky out ribs. Maybe she would tell me that I was just too skinny and to go home and eat some cake.

Instead, she asked me to bend forward and touch my toes while she examined my ribs. I was quite athletic at the time; I loved keeping fit and swimming. I remember feeling so proud that I could actually touch my toes that I was half expecting her to applaud me for my amazing flexibility.

‘You have scoliosis.’ She said sympathetically.

The three words that changed my life forever.

I just stared at her, stunned. Scoliosis? What was that? I’d never even heard of it.

‘It’s a curvature of the spine,’ she explained, ‘you’ll have to go for an x-ray to find out how severe it is.’

Tears prickled in my eyes. This sounded serious. I went home, up to my room, slammed the door, lay on my bed and cried. At that moment I thought my life was over, I thought I’d end up in a wheelchair and I’d never be able to play sports again or live a normal life. I just kept thinking ‘why me?’ over and over, I had thought that I was so fit and healthy that it came as a huge shock.

 If I could go back and speak to the teenage me I’d tell her not to be so over-dramatic, but then I didn’t know the first thing about scoliosis - and it scared the hell out of me.

I can still remember the first time I saw the x-ray of my spine. As the consultant put it up on the light box, I just stared at it in disbelief. It was curved into a backward ‘S’ shape and twisted so much that my ribcage was twisted, pushing out my right shoulder blade and forming a ‘rib hump’ on my back. I just couldn’t believe that it looked this severe and yet nobody had even realised there was anything wrong. I didn’t even suffer with any back pain.

‘I can see from the x-ray that you have finished growing,’ the consultant said, ‘this is good news; it means that your curvature should not get drastically worse. However, we will need to keep monitoring it each year .’

The room started spinning as I tried to take in what the consultant was saying. ‘Why did this happen?’ I tried to think of things I might have done to cause this, was it my fault for carrying heavy my heavy school bag on one shoulder?

‘You have what we call Adolescent Idiopathic Scoliosis, we don’t know what causes it but it generally happens during a teenager’s growth spurt.’

He then went on to say that they usually brace teenagers with scoliosis to prevent it getting worse during their growth spurt, but as I’d finished growing bracing would do nothing for me.

Mine was already way too severe for that.

He said I could have an operation where they would make an incision ‘through the front and back’ (his words) and ‘insert metal rods and screws’ into my back to correct the curvature and prevent it getting any worse in the future. However he stressed that this was highly risky and only recommended for ‘cosmetic reasons.’

I was gobsmacked. One minute I was a normal teenager,  the next I was being told I need major surgery.

Even though I longed to look normal, it all sounded so horrific and scary to me that there was no way I was ever having the surgery.

Scoliosis Surgery - All restrictions lifted!

Today I had my one year post op check up and was relieved to be told that all looks ok with the fusion and that all restrictions are now lifted! Woohooo!

My surgeon said I can now do anything I like including rollercoasters and bungee jumping!! (I don't think so somehow...) It's amazing that after all I've been through I can now just do anything and go back to normal, I think it's truly amazing how the body recovers and what they can do nowadays.

It's great because for the first three months I had to wear a brace and was told no bending, lifting or twisting to protect the fusion. I walked for about an hour most days for exercise from about 4 weeks post onwards - I was actually surprised how soon after surgery I could walk again.

After 3 months I was told I could go back to the gym and walk on the treadmill and cycle but no cross trainer or contact sports etc.

For the past 6months I've been trying to get on with my life but have not really been sure about what I can / can't do so it's soo good to finally be told I can do anything I want to again!

 I was quite worried before the appointment as I know sometimes there are (rare!) complications where the spine doesn't fuse and I was also worried whether the metalwork would be ok but I was reassured that everything was still in place thankfully. And he thinks that the spine should be fused fully now after a year - this is also a relief as for the past year I've been on edge worried to do anything incase I damage the fusion!

It was actually quite an emotional experience going back to the hospital one year on and thinking that this time last year it was just after my surgery and I would have just been taken to the ward from HDU. Walking past the ward I was in today and the smells in the hospital just brought it all back to me. Just thinking about it makes me shudder as I remember how ill I felt and how I could hardly move and I remember just thinking at the time 'What have I done?!'

It's taken me 12months to realise that it was worth it and I'm now glad I had the surgery as one year out of my life in the grand scheme of things really isn't much and overall, it has improved my life and confidence for the better.