A Scoliosis Diary

8th August 2013

Before I start writing about Scoliosis, some people may not know what it means. Basically it is a curvature in the spine, in my case, my spine curves in a 'C' shape but in some other cases it is an 'S'.

Mine was first noticed (in May 2012) when I was in my bathroom showing my mum how I couldn't touch my toes and she noticed that the right side of my back was higher than the other side. She then called in my Dad and sister to have a look. I was just laughing and didn't think of it as a big deal until my sister took a picture of it and showed it to me. It was quite visible so my mum searched something in Google and came across 'curvature of the spine' and 'Scoliosis'. A couple of days later we went to the doctors and she said everything was fine and mentioned just having physiotherapy. I visited our local hospital to have it x-rayed and at my next referral the doctor said it was 23 degrees. I did not think that was bad at the time and I thought it would just go away as I wasn't in any pain.

My next visit to hospital involved having an MRI scan. This wasn't as bad as I thought because the doctors and nurses managed to fit me in that same day. In the tube-like structure I listened to Adele, I was calculating how many songs would be left until I finished (it was for 20 minutes and I thought that a song more or less lasts for 3 minutes so about 6 songs) - which now thinking about it was quite an odd thing to do. I don't actually remember what the scan looked like unfortunately but it was really weird seeing all the x-rays i've had of my spine. It's something you'd see on Holby City and I still can't get my head around it.

I still didn't think I would have a brace or surgery until just a few days ago when I had yet another x-ray. This one showed a curvature of 43/48 degrees which is a huge growth and the consultant together with his two other colleagues, started talking surgery. I wanted to cry and not listen to anything they said. I had my head set that I wasn't going to have the operation but I had to think hard. On the journey home from hospital I was thinking a lot, I was worried that it will hurt and I think I'd be too scared to do sports or normal things but after reading other peoples experiences it doesn't seem that bad. I think I'm going to go forward with the operation but I still have to do more thinking for the next four months, until i see the doctor. I will always keep in mind that many people have even worse operations and suffering so in some ways I am quite lucky.

This is just the start of my story so I will keep you posted when I have more news :)

18th August 2013

Whilst on holiday my sister took some photos of my back. I have researched and now understand what the operation will do, so I have drawn over one picture showing before and after.

           












BEFORE: This picture below basically shows that the purple lines are the straight parts of my spine and the black bit is obviously the curved part of my spine.            

AFTER: This picture below shows my interpretation of what I think the operation will do, the metal rods are clamped on to my spine and straighten it. They will be there for the rest of my life and obviously it will leave a scar but at least I will have a straight spine! 

21st September 2013

So its been over a month since I last wrote something on this blog and obviously being September, it means one thing and one thing only. School. GREAT. I'm in year 10 now which is the fourth year at senior school and the first GCSE year which quite honestly is terrifying.

Going back to school has meant that I see all my friends again which is a bonus. Luckily and weirdly enough I was talking to my friend and she had just had an operation on her back (it wasn't scoliosis it was something like a slipped disc). So I was talking to her and it turns out she is at the same hospital as me (Evelina Children's hospital in London) and she happens to also have the same Doctor as me! So obviously i was non-stop talking to her and asking her questions such as 'Where do you go to have the operation?' 'What happens when you are put to sleep?' and 'Whats it like when you wake up?' She was so happy to answer the questions (I think) and that did seem to calm me down a bit.

She made it sound like the operation was a breeze so you just get put to sleep, wake up and go home. Obviously her surgery was different but it seemed to be OK for her.
Having this talk to her made me realise that the operation won't be that bad, I just need to go in with a positive attitude and all will be OK. I'm going back to hospital for another appointment where I'll probably have another x-ray and get the chance to ask questions.

10th December 2013

So today I went back to the hospital for another X-ray and appointment, this appointment was really meant to decide when I'm happy to have the operation but for some reason I didn't really want to talk to the doctor, this may be because I wasn't really sure how I felt and was trying to keep tears in (I'm such a wimp), I'm not too sure but he did show me the X-ray of today, and he compared it to one in January which I have finally managed to get a copy of.

The one on the right was from January and the one on the left was of today. As you can see the top and bottom of my spine are straight as i tried showing in the pictures a couple of months ago but its obvious the curve has got worse over the time of around a year because I've been growing and the doctor said I still have some more growing to do so that means it will continue to add on more degrees to it. Luckily for me, the swimming I do helps makes my muscles stronger so I don't usually get a lot of pain in my back, the only pain I do get it carrying my heavy bag to and from school, it seems I can hold it only on my right arm, if I try the left, I can't do it for long at all because it really hurts.

My family and I are now stuck in the grey zone, I can have it but I don't have to, if I do do it then I will have to consider waiting for after my GCSE's or maybe even during the time, whereas if I do not then it may get worse when I'm older and I may get insecure about it. But it really all depends on how much and when I grow until I next have an appointment. 

At the hospital, my friend who had already had her operation was there too which was odd, she seemed very tired as her parents explained that she had her appendix out within this week! I honestly salute her for being so brave and having to cope with two operations and physiotherapy, no wonder she's tired. I decided not to ask her about the operation because she seemed extremely knackered and I would only make her more tired, but it was nice to see her again.

These next two months are mainly for discussing with school, growing, researching, asking questions and deciding how I feel which honestly, I have no clue how I feel, I prefer having people making decisions for me but I guess for this its all down to my decision and I don't even know what it is yet. But anyway, it's a school night and I need to go to sleep haha.

22nd April 2014

So as you may or may not know, I do a lot of swimming, I'm in a club and compete in galas and opens and do lots of training for races. My mum, the embarrassing woman she is, decided to email a swimming magazine called the 'Swimming Times' about my scoliosis and everything. Turns out I ended up having a three page spread in it so I thought I would show you. Just to warn you, there are a couple really embarrassing pictures of me in it so do try to ignore those! 

So that's a new experience for me!

27th May 2014

Today has been very very odd and surprising and confusing and really a whole mixture of feelings. As all hospital trips start, I had another x-ray (but this time I didn't have to wear an ugly gown because I had a vest and leggings on so just had to take off my bra!) which was really quick then after that all we did was wait for about three hours. During this waiting time my mind was going crazy. I was thinking about surgery and how really I have been quite wrong about it. It's not a breeze, it is a huge operation and I don't think I am mentally strong enough for it. I also kept telling myself that I must not cry when I'm talking to whatever consultant I end up having and I must speak up for myself. Every other time I have seen the consultant, my parents would do the most speaking. But it's my back and I need to let the doctor know how I feel.

My dad and I were actually going for a wander when my name was called which was great timing *sarcasm*. I had a new consultant today who made my family and I very confused by telling us that the degree my spine was 33 degrees. Obviously my family and I had to question him on that and it turns out that each doctor measures them all differently so he had to change that measurement to how my last consultant measures it. It's all very confusing. As he went out the room we were introduced to a physiotherapist who made the whole situation clearer. I can't remember her name but she told us that each measurement given by whatever doctor is either 5 degrees more or 5 degrees less than what the actual measurement is. She was very helpful and understanding so I thank her for that.

Once the consultant measured it for what we hope was right, he told us that the degree was at 49. Which means that throughout 6 months my spine has only increased by 2 degrees! On the x-ray they both look fairly the same which was a huge shock! The man was basically telling us that I don't need the operation as the growth seems to be slowing and as I am not in much pain. I of course am very happy with this result but I am still left very confused because the doctor from last time has been encouraging this big operation which scares me, but all my consultants have had different ideas and it's got me in a muddle.

This doctor has told us to come back in 6 months but if I am in pain, come earlier and see if it has progressed any more. After this odd day, I don't really know how I feel and what's going on in my mind. I know inside that I don't want an operation because it is life changing and after what the doctor said, I don't really need it. I am scared that it will become painful and I would have wished I had had the operation earlier. Of course I don't know when that will be and I don't know if it will happen. I just need to stop and think everything through and then I'll write more when I have decided how I feel because right now I have no clue.

21st December 2014

Obviously I procrastinated since I last wrote and never wrote any more than that (whoops). But anyway last week I went back to Evelina and the usual happened except for the fact that I didn't have to wait hours for my appointment - maybe one? And by no surprise I had a new, different consultant (I did want to see the main doctor and we did ask but he was at the airport…). 

This consultant was really nice and inspected my back and did loads of weird doctor things like check the base of my feet? That was quite odd but I guess he's got to do what he's got to do! We checked the x-ray today and he didn't measure it but it looked the same as last time so he assumed it would be at about 50 degrees so again, a slight movement. He asked how I felt about it, if there was any pain as such and I told him that I'm getting a bit more pain but its bearable and I did say that I didn't like the way it looked. 

At first I didn't mind it but now I look back on holiday photos and I can really see it and for me it makes me a bit insecure. 

I'm still able to do things, most of the time I don't care how it looks if I wear a strappy top but the other day I looked in the mirror sideways on and I didn't like what I was looking at, I could only see one side of my back and it's almost like I'm hunched and at that moment I thought to myself, I wanted to have the operation. 

My family and I decided that it would be best to have the operation but the consultant said its all up to me (and I'm terrible at making decisions). I feel like it would be best in the long term to have it now because what if it hurts when I'm older or grows more and makes me feel like I can't wear backless dresses? It is a big operation and the doctor went through all the possibilities that could happen which were really scary - I could get paralysed or go blind! But he reassured me that is very rare and that he's never seen it happen. Also I couldn't help but feel that people go through worse operations everyday and some face worse possibilities than this so I nodded my head to agree. The consultant said he wanted me to be sure and told me he wanted to hear me say it so I said "Yes" quite quietly and now I'm on the waiting list for June.

It's done, I've agreed to it, now I have to wait for June to come around and see what happens.

Georgi out.

PS: Just thought I'd let you know that for some reason I'm listening to The Pina Colada Song - It's almost 1am.

10th June 2015

I haven't returned to the hospital since my last entry but I do finally have a date for the surgery: 28th August. This is later than I thought it would be but at least I can go on holiday and enjoy my summer! I am currently in the middle of my GCSEs and I have no clue how it is going or how well I've done (I'm not very good at exams or revision but we'll see on results day). I have 4 left and my last exam is in exactly a week today so I'm so excited to do no work for two months.

One thing that recently annoyed me was when I went to see my favourite band, Amber Run and the whole time my back was in so much pain because I was standing up for hours. I tried to ignore it which was easy because the gig was a m a z i n g, but it was just a bit frustrating as I couldn't sit down anywhere. It was still the best night of my life anyway AND I managed to be in a picture they posted:

Try and spot me!

So basically what will happen now is that I'm going to finish my exams, have a fab summer, go on holiday then on 27th I will go into hospital and get ready for my operation (summer goals I know).  I am now being introduced to the post-op stage and I have no idea what to expect. I am actually going to quit my swimming club as I have a new coach and I'm not enjoying it any more but swimming is going to be essential for me to help me recover and be stronger which is why I am joining another club and will aim to train once a week. 

That is literally all that is going on right now and my next entry will probably be either before or after my surgery so I'll keep you posted!

31st July 2015 - Pre-op

A pre-operation meant I spent the day in hospital talking to staff and having tests done and mainly preparing myself with what will take place in a month's time.

The day started in a small room in which a woman called Gillian measured my weight (57.6kg), height (5ft7/ 171cm), blood pressure (113/75), temperature (36.5 degrees celsius - I'm always cold haha). 

We then went to a consultant room in which I spoke to a woman called Rachel, she will be with me every step of the way when I'm in hospital and she is very nice. She asked loads of health questions like if I'm on medication or if I'm allergic to anything and gave me some advice for before my surgery like to try and use antibacterial hand wipes and scrubs to keep my back clear of spots and to eat bran flakes because apparently they help with my bowels lol. I also met a woman called Lucy who checked all my reflexes and muscles by tickling my tummy and telling me to push her arm away from me… 

Rachel was then informing my parents and I what to expect and what the procedure consists of so that we understood completely. This gave us a chance to ask questions and become comfortable with the whole experience. My surgeon, Dr Lam also joined us straight after he'd been operating! He's very confident and seems to be an excellent surgeon, he even said he felt rewarded when he corrects scoliosis and he likes looking at the neat job he's done! I feel comforted that he is my surgeon and hopefully he can feel rewarded when he corrects my curve in August. He also said that the area where the scar will be is from T2 - L2 which is basically all the way down my back. 

Rachel also then had to do some skin swabs to check for any signs of MRSA.

We were also introduced to a little boy called Jack who will be having surgery before me on the same day. He is only 5 and has scoliosis too but in his operation, a rod will be inserted in his back which is connected to a magnet that makes the rod to extend. This means that throughout his growth, the rod can get larger with him and prevent his spine from curving even more - so damn clever.

After this meeting I felt a bit more calm and happy that I knew more about it like how each screw they use is worth £600! So that means I'll be worth over £6000 after surgery oooo. I also learnt that the bone used to fuse onto my spine will be taken from the very top of my spine or even synthetic bone like coral which is groovy. 

I then went to the x-ray room and had a few pictures taken:

1. Usual straight on from the back

2. Leaning to the right

3.Leaning to the left

4. Leaning on a cushion thing which was to show how flexible my spine was

Fashion darling

The weird cushion roller thing which was rather uncomfortable

The x-ray showing how flexible my spine is whilst pushed by the roller

After x-rays and also lunch (I had a sausage roll and chips) we went to St Thomas' hospital to have medical photos taken. This was the point in the day I wish I had worn nice underwear… We were led to a photo studio room with lighting and a white backdrop when I was told I needed to have some photos taken of me in my underwear. It was really embarrassing to be standing in front of this photographer standing straight and then bending and switching from side to side but as long as only doctors see these for medical uses thats fine by me.

After that awful experience, we went back to Evelina and I had a blood test which was fine, a lot of people make out blood tests to be horrible but I simply turned my head away and got on with it.

FINALLY after all my tests and odd poses for pictures we went to the Savannah Ward of the hospital and were given a tour around where my bed will be and the parents' room. It was a lot smaller than I had thought but that's fine by me. That means I will never be far away from a nurse!

And that was how my day went. I guess I'll write again most likely after my operation, wish me luck!

Wednesday 26th August - 2 days

It is 11.23pm currently and I am sitting in my bed listening to music and writing this. 

My mind is going crazy and is all over the place. I don't know at all what to expect and I am a bit scared, but I'm also excited. I want to just get it over and done with, all this waiting around is tense and I don't really know what to do with myself.

I have been doing some of my bridging work for sixth form which is important for me to do as I don't think I will be back at school until around late October so I reckon I'll be reading "Tess of the D'Urbervilles" in hospital...

Speaking of hospitals, my sister had her tonsils out today (my parents have got a lot on their plates this week!). She was telling me how weird it is to be put to sleep and she also thought her surgeon fancied her hahahaha. 

We also recently got back from holiday and I, again, was a bit self-conscious about my back but my parents tell me that noone notices my wonkiness unless they're looking for it. 

On 'Tsougrias' (a beach on a small island neighbouring Skiathos in Greece) we met a doctor who knows a lot about scoliosis and he told me the operation is so common these days, there really isn't much to be worried or scared about, and the equipment used is so modern and clever along with amazing surgeons and nurses I shall be in perfect hands. He literally said it like it's no big deal at all so that made me feel a bit better.

But there is still a craziness about this whole situation, operations are really weird if you think about it, some gal/guy cuts you open, sorts some stuff out, then closes you up again. I don't know if thats just me thinking that way (it is 11:53 btw) or everyone has odd thoughts in the days leading up to surgery...who knows.

Tomorrow I will go into the hospital at around 2pm and have some more tests done, I will then be allowed to go out and explore London and have my 'Last Supper' with my parents before spending my first night in my  hospital bed. The next day I'll wake up, put my hair in plaits (if possible, I had it cut today and its super short compared to what I'm used to), probably have a shower too and just wait for little Jack to be done until it is my turn to go under the knife. 

It's weird because I'm not that bothered about the actual operation, I'm more worried about the small things like the tubes and food and my recovery in general. 

It just doesn't seem real to me that I will be struggling to walk or sit down in a couple of days. But I do have to mention, one thing I am super excited about though is going home in an ambulance.

Til next time.

Sunday 13th September - 2 weeks post op

I'M ALIVE

I have a lot to write about my surgery experience before I forget and I also have a lot of school work to catch up on (but that can wait).

On 27th August I went into Evelina Children's Hospital and was introduced to some members of staff, there was also a girl there called Chloe who had had the same operation the day before and was already up and walking which was amazing to see. She kept telling me I'll be fine and that it's not bad at all. We saw Jack again who seemed quite excited to be sleeping in a bed that can move when you pressed the buttons! I then had a lot more tests done like blood tests and measurements and all was chill and fine, I was quite relaxed. We were then allowed to go out of hospital for my 'last supper' and my parents and I decided to go along The South Bank and found a burger shop (even though I had fish and chips). Once the meal was over we returned to the hospital and I slept in my hospital bed (which is comfier than I thought). My Mum slept on a funny pull down bed next to me.

The next day was 28th August, the day of the op. I woke up and was feeling absolutely fine, we then waved Jack off - who was still quite excited - and wished him good luck. The next few hours were a waiting game, I read magazines, watched some TV but gradually got a bit more emotional and shaky due to nerves. Because of this, I was allowed to take a pre-med to calm me down and it helped so much, I highly recommend taking it if offered. I was also given numbing cream on the back of my hands to prepare them for the cannulas and tubes.

Fast forward a couple hours and it was time to be wheeled away to the anaesthetics, Chloe was very comforting and told me that it's a piece of cake and I'm in good hands which calmed me down just as well as the pre-med did! I was then taken to a room where these two anaesthetic women worked, they were very nice and put an oxygen mask on me which I didn't mind (it felt like I was breathing in really clean air). They then were talking to me and my parents about our holiday and the last thing I remember was talking about dolphins....then I guess I was put to sleep. 

I don't actually remember waking up or much of the ICU room, I remember waking up and telling my parents that I wasn't paralysed or blind! The rest of my time in there is one big blur, I hardly remember anything! My parents told me that I was singing the Simpsons theme tune? As you can tell I was extremely drugged up and I really didn't know what was going on...

I can't remember going back to the ward but I know as I lay in my hospital bed that I didn't quite believe I had done it (I still don't now!). People will say morphine is a life-saver in recovery but if I'm honest I hardly used it at all - I was hardly in pain, simply uncomfortable a lot of the time which didn't bother me!

Four days went by and I was getting stronger and stronger. In my opinion, the worst bit was taking pills, only because I'm terrible at swallowing them anyway. A nurse would wake me up every night at about 1am with a pot of pills, including a huge ibuprofen, some paracetamol and a senna pill which tasted like grass...

The nurses at Evelina are so caring and kind, they made me feel special and brave and also made me stronger so I thank them so much for all of their work!

The best bits about the whole experience is the fact I am almost 2 inches taller and I also got to go home in an ambulance. I met the nicest paramedics who showed me the trailer for Game of Thrones, (I NEED to watch it now) and we had a good ol' chin wag.  

My recovery at home was fine. I simply sat on a big arm chair and watched TV for a few days. I also went on walks which are the best thing to do and made me stronger very quickly, (I walked all the way to my local Sainsburys and back only a week after the operation which was crazy!) I also rarely took pain killers because 1. I didn't like them and 2. I didn't feel like I needed them. The only harsh pain I got was in my right shoulder which was most likely the muscles trying to adjust to their new shape - this went away in around a week. 

I managed to become more flexible and quicker at doing things like sitting down and getting changed about 2 weeks after coming home.  I then went back to school in my third week of recovery because I got really bored at home and felt able to come in for a lesson or two a day. 

I also had nurses that came round twice a week to change my dressing and clean the scar. Gradually it would heal as they took the dressing off but I had a bit of trouble with the very top of my scar as a stitch came to the surface so was preventing it from healing. This problem was treated when one nurse pulled out part of the stitch (it was about 1.5cm!) which caused it to heal perfectly. I have now been discharged from the nurses as my wound has healed! 

Today I am basically in school full time, but I still get tired quicker than usual. I'm also not in any pain at all, I can sleep fine, I can sit on any chair I'm given, but I can't bend fully (and I'm not really supposed to try) or throw things, but that's ok! I didn't have the operation very long ago so I am healing a lot faster than previously thought. 

My family and friends have been so supportive and helpful and patient which I feel helped me get better quicker, along with the fact I try to be positive all the time! 

This experience has been life-changing in a good way, I am so glad I have finally got my wonky issue sorted and I feel so much more confident in myself and my body now, this wouldn't have been possible if it wasn't for Evelina hospital and all its staff - especially Mr Lam and every single nurse and person working there. Thank you!!!

Putting on my groovy stockings the morning of the op

Getting wheeled away to theatre

In ICU! 

Friends and family visits

Getting up to walk for the first time

WALKING

Day of going home - trying out the stairs

Waiting to get my Xray taken

BEFORE AND AFTER

Sunday 28th August 2016

Today marks one year since my surgery and I am feeling better than ever. Not only does the scar show what I've been through but it also looks quite cool and sparks conversations. In honour of the first year having metal in my spine I decided to recreate the photo I took before surgery.

August 2015

August 2016

You can see how much the surgery has improved not only my posture and shape of my back but my confidence too! Now being 5ft 9 and no longer wonky, I can observe myself in a mirror wearing clothes that finally seem to fit and look right on me giving me a confidence boost and a sense of pride. Who wouldn't want that?

For any questions please let me know, I'd love to help:

Instagram: @georgiward 

- Georgi