I am home!

I failed to mention in the last blogpost that I was writing from home!  Amazingly I was discharged from hospital on Thursday evening as I had completed the checklist of 'milestones to achieve before discharge'.   As you can see I did most of the checklist on Thursday itself; it's incredible how quickly everything comes together once you manage to sit and stand.

I was also just so determined to get home.  I was struggling to sleep in hospital and was not having a good experience with the nurses, all of which will be elaborated on in my next blogpost.

I had only managed to sit for more than 10 seconds for the first time on Thursday, let alone stand, walk or manage the stairs, so the journey home was certainly a challenge.  I live about 25 miles from the hospital and some of the journey is bumpy country roads so I had to keep taking deep breaths and thinking of my own bed!

Thank you to everyone who has contacted me to wish me luck for the operation and recovery; it's amazing to have so much support x

The lead up to the operation

Everybody having an operation the same day as your admission has to arrive at 7am regardless of what time the surgery will be. This is so that you can meet your anaesthetist and see you surgeon before they start their days work. You also have to arrive early so that they can finalise the list for theatre, and to secure your time slot.

Failure to arrive on time could result in the cancellation of your surgery and so, ever the panickers, we arrived at the hospital at about 6.40am. The doors to Ward A are automatic and programmed to open at 7am and not one minute earlier so there were a number of people milling about in the main entrance, a short distance from the ward. Oddly we then found ourselves queuing up outside the door like we were vying for a good spot at a concert. This feeling was zapped as soon as the doors swung open, we traipsed inside and were assigned our beds.

When I had my surgery three years ago, it was the sight of the hospital bed which set off my tears so I had prayed I could stay strong this time, and not add to the stress of my poor parents.  I was taken to Room 8, bed B, and kept my calm. In fact, I found that everything that morning just filled me with more excitement; this was finally it.

The lady in bed A was very quiet and very nervous. The Prof was her surgeon also and so I heard that she was having her coccyx removed! He began explaining that the coccyx was named by the Greeks after it's similar appearance to a cuckoo beak... Perhaps he was just talking to try and calm her but when he then said “well it does when you get in there anyway” it made her go quite pale. 

Due to my possibility of infection, I was last on the list. They didn't tell me how many were before, just that I was last on the list. I couldn't believe it. But then it also made perfect sense, and I knew I should have seen it coming. They couldn't risk having the infected metal in the theatre when another operation was yet to come.  

This was the most sensible thinking the surgeons had so far shown that morning...

The first thing The Prof said to me was “now remind me, did we decide to take all the metal out or just part of it?” I really hope he was joking but he still wrote a little reminder to himself on my back for when I wasn't awake to tell him!

"Removal of metal"

When a spinal registrar came to see me and also asked what I was having done, I have to admit I felt a little bit anxious. Can you imagine how this made Mum feel!? He added two arrows to the graffiti on my back so they knew, his words not mine,  “where to operate”...

My anaesthetist was a much more collected and reassuring figure. I asked him roughly what time I could expect to be going into theatre and he said early afternoon, between 12 and 1 o'clock.

At least 6 hours to wait.

   

Time actually went pretty quickly and there were visits from nurses and forms to fill in. I was brought a hospital gown and paper knickers, and measured and fitted with the long socks you have to wear while bed-bound to prevent thrombosis.

I was going to wait until 12ish to put on this fetching outfit but then a porter arrived at 11.40am to take me down to theatre! It was quick change, hug from my parents and then I was whisked away.

I passed The Prof dressed in his scrubs with a funny little hat on and it struck me how this is his day job, something he does every week. He really is so clever, even if part-mad-professor too. I was wheeled down to operating theatre 3 and passed lots of people who all smiled and wished me well. I heard a chap call to The Prof that he was going to grab a sandwich before they start, and The Prof say he wasn't need for about half an hour. All weird things to remember, I know, but all things which highlighted how normal this was for them and helped a little with my nerves.

Though obviously not too much as my heart was beating very fast and, despite my remaining calm on the outside, gave me away when they began attaching all the wires and heart monitor in the anaesthetic room.  My anaesthetist got me to hold my hand over the edge of the bed to try and get the vein up; it was nervous too and trying to hide. Once the needle was in they injected something to relax me and I remember going all funny and feeling like I was floating. When I tried to speak to tell them I understood they were about to give the anaesthetic I couldn't speak properly and then that was it, I was gone...

...and I woke up in Intensive Care after a three hour op with a completely metal-free spine.   

London 2012 Opening Ceremony

I just had to do a post about the London 2012 Opening Ceremony last night - I am still buzzing from just how good it was!  I may be a teeny bit biased but what a show, and so British.  Through scenes of organised chaos it told our country's story to a backdrop of our musical talent... and humour.  The scene with the Queen and James Bond was absolute genius and showed all those who believe the Monarchy to be stuffy and out of date just how wrong they are.

For me in particular though,  it was the homage to the NHS, and the inclusion of our nurses and Great Ormond Street Hospital patients, that made me practically burst with pride.  The NHS is something all we Brits should be immensely proud of.  As someone who has had lots of dealings with the NHS, and will be back in hospital in two days time,  I will never be able to stress enough how grateful I am to this institution.  Free health care at point of access. We all need to realise just how lucky we are and I am so happy it got such a tribute last night -  it makes me proud to be British.

A week today...

... my second operation will be over.

It is constantly in my thoughts to the point that I woke this morning at 5.30am, and then 7am on the dot. I will have to get up at 5.30am next week and I am due at hospital at 7am. How is my body clock so fine tuned to wake me up at these exact times? Are my thoughts never switched off?

I'm obviously nervous, but I'm also just anxious for it to be over so that my next treatment can be decided.  As soon as the infection is treated I should finally start feeling better. Healthy.

Removing metal work is an unpredictable operation; until they begin unscrewing each screw the surgeons don't know how it will go.  Some may be easy to remove, others not so -  I just pray mine are all fine.  I have complete trust in the surgeons and the Bone Infection Unit physicians who will take over my care once the operation is finished and so, my nerves are not really related to how the operation itself will go; I am nervous that they somehow won't find infection.  If they don't,  I am back to square one.

I know that this is extremely unlikely but, as there is still a chance I can't seem to stop myself dwelling on it.  They won't know until they operate and take the samples as I explained in my post How the infection is being treated .

While this worry has been getting me down, I have also now channelled my thinking into how the operation is a positive thing, regardless of the outcome.  From the CT scan of my thoracic spine the surgeons know that I have screws very close to, or maybe interfering with, nerves.  Having these screws removed will greatly improve my pain, and will mean that, hopefully, I can stop taking the neuropathic painkillers.  As amazing as these tablets have been over the past couple of months, taking them has been no walk in the park and I will also be glad to not have to remember to take them three times a day!

All in all, this week cannot go quick enough and I am looking forward to finishing this stage of 'operation: get better' so that I can move on to the next...

How the infection is being treated

The first thing they need to do to treat the infection is remove all the metal in my back.

During the operation itself they will go in through the same scar, remove every screw and then both the rods.  They will take biopsies of bone from around each screw which will then be sent to the lab to be tested.  It will take about a week for the tests to be conclusive but after that they should know what treatment I need to kill off the infection entirely; there is a different treatment for each bacteria.

If they did the biopsies of bone now, without removing the metal, then even if they treated the infection, the bacteria could still remain.  This is because the bacteria can survive in the biofilm on metal and so, in order to guarantee that all the infection in the body is completely wiped out, they must remove all the metal.  If they didn't then bacteria could survive in the biofilm and launch a new attack.

It is just a case of having the operation now, and finding out what I need to have next.  I am getting closer every day...

What to take to hospital

In just 11 days I will be off to hospital with my bag packed and for those in the same position I thought I would list what I will be taking with me.

When I had my surgery before I wore the hospital gowns not my own clothes but I will take clothes along just in case, and I will need some to wear on the journey home.

• Clothes: loose fitting, comfortable clothes/pyjamas. Preferably tops with buttons which do up at the front just purely for ease of getting dressed.
• Slippers – slip-on slippers as you won't be able to bend down to put on shoes or booties
• Dressing gown – for when you can walk to the bathroom again. Also good if you get cold as it can be used as a blanket
• Eye-mask – there are always lights on in the ward so my eye-mask was great and will definitely be coming back with me
  
  
  
• Dry shampoo – a saviour for when you can't shower and wash your hair. I'll be taking the tropical or blush 'flavour' which have a nice scent and help make you feel better
• Soap/shower gel – you can take in your own nice smelling soaps for the nurses to use when they give you a body wash. Again this helps lots as it's nice to feel fresh and smell of home rather than hospital!
• Pocket mirror – you won't look your best but it's good to have
• Vaseline or similar – dry lips are the worst
• Face wipes/make up remover – while make up will not be worn, being clean helps you feel less groggy
• Moisturiser – again something which will just help you feel fresher
• Deodrant
• Toothbrush/toothpaste
• Mouthwash – mini travel size version. It's a personal preference but again it's something that just helps you feel cleaner and fresher
• Hair brush
• Hair ties/hair clips – to keep hair off face
  
  

• Diary/note book & pen – I'm so glad I kept a note of what happened each day, it's a great thing to look back on now and realise how far I have come
• I-pod – I planned to read lots but found I just wanted to listen to music and sleep so I'd definitely recommend taking one
• Puzzle/crossword book - I found these good as you can dip in and out without using too much concentration
• Books – just in case I do feel like reading this time
• Good luck/get well cards – you can put them up round your bed :)

You will have a little bed-side cabinet where you can put all your things so don't worry about having too much.

I will also be taking some VitaCoco Coconut Water. This wasn't well known when I had my surgery three years ago, but my brother found out about it and brought some in for me. It's brilliant for hydration and contains vitamins, minerals and electrolytes the body needs to keep hydrated.

Good luck all and hope this was useful

Rose x

Explaining the symptoms of my infection

Whether you are either preparing to go through, or have already been through, an operation like scoliosis corrective surgery the last thing you want or need is to be worrying about complications that can arise once you think it's all over.  I don't know if others have found the same, but while I was told the risks they were never really explained to me. Some may prefer this, whereas I like to know as much as possible - even to the point that I watched a video of the surgery before having it done.  I felt like so much was being kept from me, and having surgery is so unknown I just wanted to know exactly what to expect.  I found it reassuring to know what would be happening but, it's really not something I'd recommend for anyone who is even the teeniest bit squeemish.

From my experience, I think it is hugely important to know the signs of infection to look out for, especially when scoliosis suffers are the least complaining people you will meet and have the highest pain thresholds.  Even more so because there are no straight answers about how long it is 'normal' to still have pain after surgery and because we are, in a way, almost used to being in pain.  I wonder how many of you out there have got to point where you do not notice your pain as much, you block it out and just accept it as normal and there to stay.

I explained a little in my blogpost Spotting the signs of a bone infection what the symptoms of a 'normal' bone infection would be but, I think it's also important to tell you what my specific symptoms have been.

I gradually weened myself off painkillers and by about 6 months after my operation I was drug-free.  This was amazing as I had taken tablets daily for 4 years yet never truly been pain-free.  Pain-free and drug-free.  Unfortunately it didn't last.  Pain returned quite suddenly just after the year anniversary mark and gradually got worse over the next few months.  It got so bad that I was bed bound and finding it hard to breathe.  I got quite scared that something had gone wrong so mum phoned and asked for an appointment to see the hospital Spinal Team.  Ridiculously I didn't get an appointment and had to wait for my already scheduled 18 month check up to voice my worries (my complaints about aftercare are another story, please read this.)

I was told that I still had pain because my ribs were still broken.  I had costoplasty as well as the spinal instrumentation which is where they brake and remove part of the ribs which make up the 'rib-hump' some scoliosis suffers get; I had 4 ribs broken on my right side and a whole rib removed from my left side.  They checked my x-rays for any signs of the metal loosening, told me nothing had moved and booked me another check-up for a years time.  I felt a little annoyed that I hadn't been told my ribs would take so long to heal but I also felt reassured that this was the reason for my pain.  I went away feeling awed by just how huge the operation really was and how much healing my body still had to do.

Since then I have slowly become more and more unwell.  I got used to the pain and began to not notice it as much. It also became normal to be taking daily painkillers again.  I didn't question it and I didn't like to complain.  Additionally, my other symptoms seemed completely unrelated:

• Extreme fatigue
• Loss of appetite
• Noticeable unexplained weight loss
• Tummy pains
• Night sweats
• Lack of concentration & inability to think straight
• Heart beating noticeably faster than normal
• General sickness symptoms such as noticeably bad skin & hair falling out

As you will see, it is a very varied list of symptoms which, again, is why infections are notoriously difficult to diagnose and identify.  If you feel any of these things then ask for a blood test to check for infection.  The CRP level (C-reactive protein) shows up levels of inflammation and is the tell-tale sign that your immune system is fighting something.   

If you still have pain that is worrying you then make sure a doctor, preferably a spinal surgeon, examines your back.  I've realised that my back was never looked at in the after care.  They checked the scar from afar, and they checked the x-rays... but nothing more.  It wasn't until I saw a spinal surgeon at the Bone Infection Department in February that my back was actually physically examined.  He pressed down my spine on each bolt which reproduced my pain and made me visibly wince.  The pain that I get all round my left side shot through me and I felt the sharp, shooting sensation that I had always thought to be muscular pain.  He was shocked and said "you're in pain, aren't you".  This made me burst into tears and realise just how much pain I was living with.  By working out that it was the T8 screw he could then look on the x-ray, MRI and CT scans I have had for any signs of what is causing the pain.  It appears there is fluid around the screw and it is also, to use the doctors terms,  "nearly significantly displaced" aka very close to or touching nerves.  This is another reason why I am having the metal taken out, removing this screw could help to stop the pain.  Discovering this has also meant that I am on medication can really helps me now; neuropathic pain killers.  

Don't just live with it, and don't feel you can't complain about pain you are having.  Even if it seems like nothing in comparison to the pain you had before surgery, it is still important to let the doctors know what you are feeling.  I covered it up too much, I didn't want to seem like I was ungrateful for what they had done.  But really, if you don't tell them,  they won't know.  

* A DATE FOR THE DIARY *

I have my surgery date: 

31^st July, 7am

I cannot wait to finally feel better and am counting down the days!   

Scoliosis is what you have, not who you are

Pre-operative assessment – Round 2

Thursday, 14th June

Today was my pre-operative assessment clinic, all 4 long hours of it.  Having had a pre-op before, I knew what to expect, and would describe it as a full-body MOT checking you are well enough to undergo an operation, followed by the final consultation with the surgeon (mine being named The Prof for this blog).

I had been preparing for both; vitamins for the former, research for the latter.

My main aim of the day was to talk to The Prof about something which has, quite literally, been giving me nightmares.  I get copies of all correspondence sent between the doctors – that's 6 hospital doctors and 2 GP's in my case; their commitment is unbelievable – and the most recent came from The Prof.  He mentioned the risks of the operation which we had already discussed, but seeing them in writing made them easier to process and one just stuck out at me.  I didn't actually realise how much I was subconsciously thinking about it, or how much it was worrying me, until I woke up shaking from a nightmare.

Loss of correction.

Memories of how my back used to look that I didn't even realise I still had were all coming back and, well, haunting me.  It is so easy to forget how something used to be and I think, in a way, I have come to take the new appearance of my back for granted. The idea of it returning to how it was genuinely terrifies and upsets me.

I was offered a 'plastic jacket' after my previous surgery but as they were so pleased with the fusion I was never fitted for one.  I will be going in to my final year of university this September, and it worries me that all the sitting at desks and so on will affect the healing and, in turn, increase the curving. I don't have any qualms about the appearance of a brace (though research has told me that they are barely noticeable) and I am of the mind set that it is only for a year at most – a year of recovery that once passed you can't alter.

I researched plastic jackets and braces extensively, explained to The Prof and asked his advice.

As the metal has been in for 3 years, he thinks the fusion should be good.  Therefore, while 'loss of correction' is listed among the risks, the actual risk of it is very minimal.  They will monitor my x-rays to check the fusion is as expected, and we will discuss it again once the operation is done.

I trust him completely and feel fully reassured that this is something I can stop worrying about.

We went through the risks and the operation process again.  The risks include infection (yes, you have to risk infection to treat infection), loss of correction, and tearing of the lining around the spinal cord which can lead to a leak of fluid.  I don't know the proper terms for the last risk but The Prof explained the leaked fluid can cause pain, and also how the nerves can come out through the tear – let 's just hope this doesn't happen!  Unfortunately though, there is a degree of uncertainty when removing metal.  They never really know how it's going to go, or how close screws are to nerves, until they are operating.  Again I am having to take a risk, but I am confident in my decision to go ahead with the operation.

Having met with The Prof quite a number of times now, and having always been polite, reasonable and understanding, I feel that he is much more relaxed during consultations.  This relaxed manner in turn makes me (and my parents who, forever there for me, come to all consultations) more relaxed too. I don't burst in to tears anymore, I don't forget what I wanted to ask and I don't get nervous before seeing him.  I feel that because we have always respected and listened to him, he also respects us for remaining calm and maybe even respects me a little for how I am dealing with this.

I feel even more proud that he seemed very impressed by my knowledge of what is going on and the interest I have taken in my condition and my care.  I told him how interested I am by what they do, and that I even watched a video of the surgery before I had it done.  He was surprised to say the least but it was amazing to have my thoughts on the surgery listened to by such a pioneering surgeon.  Even more amazing is that he then asked me to be involved in new research they have just been given the go-ahead for.  It feels overwhelming to have the opportunity to maybe be able to help him, and the rest of spinal research - especially after how much they have helped and will continue to help me again next month.  I will be sent the first paperwork soon...

Spotting the signs of a bone infection

With infection being one of the main risks of scoliosis corrective surgery, my mum clearly remembers asking how would we know if I had an infection? 

“You will know” 

Considering it took a total of nearly 30 consultations & investigations before my infection was diagnosed, this reply seems a little blasé. We obviously didn't just know and I feel that the minimal follow-up treatment let down the unbelievable care I received from the surgeons and hospital staff. 

First though, I think it is important to describe what I have come to understand as the 'normal' bone infection they would expect to see, and how they would expect to see it. The bacteria which survives in the biofilm on the metal rods and metal screws spreads into the bone surrounding the screws. This then creates a larger-than-needed hole for the screws resulting in them loosening and, if left long enough, snapping. As you can see on this x-ray image of my spine, just a simple x-ray can get a pretty good, clear image of the screws and so they can check for this very simply in follow-up appointments.

Infection would visibly show up as dark area
around pedicle screws

And to be honest, that's about all they do do. Excluding my 6 month and 3 year follow-up appointments (where I saw my surgeon, nicknamed The Prof for this blog), it was in the others that I experienced my only taste of unprofessionalism from the clinical staff. Not only were my appointments so routine I could predict exactly how they would go; arrive to be met by a grumpy secretary, be sent for an x-ray, see a different 'member of the spinal team' who would look at x-ray and tell me nothing had loosened, brief chat about how the pain was, go home. I now know that this 'loosening' was, in fact, them looking for signs of infection so I am pleased they do have an active system in place for picking up those signs.

Additionally, as the word 'infection' suggests, you would expect symptoms such as fever and severe red soreness and heat over the infected area. 

Admittedly these signs are much more obvious and could hardly fail to be picked up yet, they didn't pick up my signs, did they? Signs which had been there since my 1 year check up. Signs which have since been used to diagnose my problem.

My night sweats were passed off as localised sweating as the nerves rejoined, my pain from where I still had broken ribs, the pain around my T8 screw was explained as just 'skin irritation'.

I asked for physio during my 18 month appointment as the pain was so bad I could barely breathe... I never got an appointment. During this consultation the 'member of the spinal team' told us how he “shouldn't even be here” and answered the phone to his son and told him how to cash in a cheque. Gradually you get used to the pain you have and begin to accept that this will remain; there is no guarantee the surgery will fix the pain as well as the curve.  

When I saw The Prof, and told him what the other consultants had shrugged my symptoms off to be, he said “they'd tell you anything.” To me, the after-care was so routine that it lost it's usefulness. I know that you can't expect to see the surgeons everytime, but the consultants you do see need to be far more clued in to what they are doing, far more professional and ultimately, they need to actually listen to the patient. A comprehensive list of questions covering general health, as well as spine related issues, would also help; it didn't occur to me that my weight loss could be related to my spine and to my pain!

In addition, despite that my particular bone infection does not appear to be the 'normal' one or, at least, not the 'normal' manifestion of one, simply scanning your eyes over an x-ray during a consultation does not seem sufficient after such a huge operation especially as it was just a simple blood-test which first picked up the signs of infection last year. 

It has been repeated many times how notoriously difficult it is to spot, and diagnose, infections as they can vary so much and even take up to 5 years to manifest as any symptoms. While I completely understand this, I fully believe that had a simple blood test been part of my after-care treatment, my signs of infection could have been picked up in the correct department over 2 years ago. 

Just a blood test, and this could not all have taken so long or made me so unwell.

Operation: Take 2

After 3 years, 15 consultations in four different departments in three different hospitals, under the care of 6 hospital doctors and 2 GPs, an endoscopy and a colonoscopy, a CT scan of the small bowel, an inpatient stay in the Infectious Diseases Department and an MRI scan of the whole spine, a CT scan of the thoracic spine, 10 X-rays, an ECG and countless blood tests ranging from the common blood samples to tests for tropical and rare diseases which take over a week in the lab to complete, I finally came away from my 16th consultation last Thursday with a definite plan of action.

The final imaging I had done was a CT scan of the thoracic spine. The results of which were hoped to confirm that the high level of antibodies and inflammation in my blood are being caused by an infection in my metalwork. The result was to be delivered by The Prof*, the very man who performed my operation 3 years ago and who has been idolised by myself and all who know me. I have been completely in awe of him since the first consultation when surgery was discussed and this incredibly clever man explained to me what could be done to fix my scoliosis, and also the risks.

Having this complication he would be the first, and easiest, person to subject to all the blame. Many people have said this, and many people in my situation probably would have gone in there pointing the finger and shouting and screaming. I believe this is a ridiculous way to behave and an equally ridiculous accusation. People in general, the majority who have had little contact with the NHS themselves, are too quick to criticise the surgeons, doctors etc. of the NHS; in my experience, no one works harder or with more dedication and passion. I also have the sense to remember why The Prof was idolised in the first place; he all but corrected my scoliosis.

And yes, I have had complications from the surgery but I was made very aware of the risks from day one; paralysis, nerve damage and infection being the ones I remember.  I signed a consent form confirming my understanding of what I was having done and all the possible risks involved - of course, it never really crossed my mind that I would actually face one.

The CT scan images have strongly brought home the risk of paralysis.

The report of my CT scan did not conclude any definite signs of infection, but did find ‘displaced’ screws. Displaced in this instance meaning millimetres from my spinal cord.

Computed Tomography is a fascinating type of imaging which takes pictures like cross-section slices; providing hundreds of images of my spine in which the positioning of each screw can be scrutinised. These screws, or ‘pedicle screws’, are placed to give support and strength while the vertebrae fuse.

The pink area of the image shows the pedicles

An X-ray of a thin pedicle with screw in place. The
'black hole' contains the spinal cord.

Incorrect placing of the screw.

Some people have very thin pedicles and I just so happen to be one of them, thus making the ‘optimum positioning’ for the screws an almost impossibly small target. This revelation has made two things clear: 1; I finally comprehend the enormity of the operation and 2; I am even more in awe of this amazing man and his expertise.

He thinks that the metal work should come out and so, the metal work is coming out.

Infections can take up to 5 or 6 years to establish themselves or be diagnosed and are notoriously difficult to identity often taking a lengthy diagnostic process. He explained that infections are caused by different bacteria (such as propionibacterium which causes acne and lives on the skin) which get in during the surgery and live on the biofilm on the surface of the metal. A different antibiotic is needed for each bacterium and unless the metal is taken out, it could survive on the metal and strike again. For this reason alone it is advised I have the metal taken out; the only way of guaranteeing complete removal of infection.

Additionally, they believe there could be a mechanical problem with the T8 screw (the screw in the 8^th vertebrae in the thoracic part of the spine) as this appears to be displaced, have fluid round it and be the source of my pain. For the pain I am temporarily taking neuropathic pain killers three times a day which already are allowing me to get back to normal (starting with trips to garden centres and other non-strenuous activities, of course).  

They will take bone specimens at each screw which will be ‘grown’ in the lab after the operation. After about a week the samples will show which bacteria is present and determine which antibiotics I need. There is the possibility I could have them for 6 weeks by IV drip but we will cross that when, and if, it comes to it.

Incredibly, the operation itself will only take 1 and a half to 2 hours which, in comparison to my last 7 and a half hour surgery, is no time at all. Obviously, I’m feeling apprehensive and well, just about every emotion possible really - I wonder how much of that is to do with the tablets!

I’ve done it before; I know I can do it again.

What is scoliosis to me?

Scoliosis is a condition in which the spine bends to the side abnormally; either to the right or left. The curvature can be moderate to severe. Any part of the spine can be bent in scoliosis. It is often accompanied by a twisting of the body resulting in prominence of the ribs.

It was not a disease that put me into a neat little box. You can be born with it or develop it. You can get C curves or S curves. Crucially, in two separate cases of scoliosis with the same degree of curvature, one can get agonising back pain on a daily basis while the other can have none.  In fact, in the vast majority of cases scoliosis is not painful.

The majority of children with scoliosis require no treatment, as the condition resolves on its own as the child grows. A very small number of patients with scoliosis may require surgery. If left untreated, the condition can lead to serious spine, chest, pelvis, heart and lung damage.

I think it is essential that I stress these enormous variations; scoliosis is actually a quite common condition in growing children. You may be diagnosed with it but then never think of it again and get an ordinary level of back pain; a common complaint of around 10 million Britons. So if, on the huge off chance, you are reading this because you, family member or friend have been diagnosed with scoliosis please don’t take my experience as the universal model; just as every case of scoliosis is unique, my experience of it is unique to me.

I write this 3 years on from my corrective surgery and my feelings towards this illness have altered remarkably. What was my definition of scoliosis?

Life ruining.

I hated it. I hated that I had stopped dancing and I was too stubborn and proud to continue it as a hobby where I would no longer be at a professional standard. At 16, I made this decision on my own, still away from home at Elmhurst, and I guess I built alongside it a growing hatred for scoliosis. It is a visible deformity. Yep, it’s classed as a deformity and a disease ‘diseasing’ not just your body but also your mind. It was all I saw when I looked in a mirror, and of course the pain was a constant reminder. I couldn’t even look at an x-ray image without bursting in to tears; the image of ruination.

Puberty is a hard time for any girl, but this doubled with the ideals of beauty from 5 years of ballet school made this an even harder situation.

I felt very sorry for myself. I felt like… the most unlucky person the world.

I have a physiotherapy session at the John Radcliffe Hospital to thank for completely changing this.

It was not your average “pull around and give you some exercises to do at home” physiotherapy and more similar to a psychological and emotional investigation. The surgeons need to know how affected you are psychologically as well as physically because scoliosis surgery is an operation full of risks and should only be done when absolutely necessary.

She asked me, ‘What would you be doing now if you didn’t have scoliosis?’

Dancing. I had wanted to be a dancer. But having scoliosis and the pain had ruined that for me.

She continued to question me on what dancing meant to me, how much I had achieved and brought to the table all the wonderful, good things that had come from the years I’d enjoyed at Elmhurst. I answered her with total, and almost exhilarating, honesty (as best I could through the tears) and there was something amazingly therapeutic about focussing on the good times. It was there that I realised just how lucky I was. I should not be bitter or full of self-pity but thankful to have experienced it at all.

She then told me to take a little box and put all the happy memories inside, close the lid and put it away safely in the back of my mind. That way it is not forgotten and could be opened and looked at whenever I wanted … but kept separate to my scoliosis. As simple as that might sound, it is this method of remembering all the good things and being grateful for them and then putting them out of my mind and separate to my condition that continues to help me to this day. It is without doubt the turning point that makes me able to view scoliosis in a completely new way. So what is my definition of scoliosis now?

Life changing.

Yes, it has changed my life in ways that I have not wanted it to and yes, this has been indescribably hard at times but just because I had to stop something that I loved didn’t mean that I wouldn’t go on to do something that I loved just as much. I love university and I’ve just had the most amazing time studying in Lyon for 5 months; things I would probably never have done. There is no point thinking about, or dwelling on, what could have been and thanks to the NHS and their physiotherapists and surgeons I am perfectly at peace with my piece of ‘bad luck’ seeing instead my luck and being a much stronger and happier person thanks to developing scoliosis.

Being diagnosed with scoliosis

When I was 15 years old I was diagnosed with idiopathic scoliosis. A shock for anyone but for me an absolute blow. It not only had consequences for my day-to-day life but also for my chosen career. Yes, at 15 I knew actually what I wanted to do with my life. In fact, I’d known since I was 8. I was going to be a ballerina. I know this is the dream cherished by most little girls but I was blessed with a real talent and an inexhaustible passion for dance.

I endured the gruelling process of auditioning for the top ballet and theatre art schools and witnessed first-hand the highest degree of pushy-parent-syndrome. After a harsh pep talk 10 year old girls with fear of failure in their eyes were shoved into the auditions, their parents “this is your LAST CHANCE” ringing in their ears. For me, it was meals at Bella Pasta, practising in the small hotel room and eating Thorntons chocs snuggled up in bed before an early night; looking back I now realise just how rare and charming this is. It was all an adventure that I myself had chosen to be on and my parents were there, as they always have been, telling me “just do your best, we love you.” Despite getting through to the final audition stage for White Lodge I did not receive a place – and I will never forget that, my first taste of failure. I did however gain one of the 11 places for Year 7 students at Elmhurst School for Dance. I spent 5 years at Elmhurst and my memories of it are certainly bitter-sweet.

Attending a school like Elmhurst, a boarding school, but not your average boarding school, not a ‘normal’ school, is an experience I will never regret. The opportunities were incredible; I was chosen to tour with the English National Ballet’s new production of the Nutcracker dancing in Bristol, Manchester, Southampton and London at the London Coliseum. All before I was 16 years old.

When school uniform is a leotard, studio walls are lined with mirrors and long finger-nailed teachers prod and poke every inch of your posture, my scoliosis was detected very early on. Only 11 degrees and some pain which the physio said was just growing pain; it was nothing to really worry about. I was even told that a dancer in the Birmingham Royal Ballet Company had a curve of the same degree.

I was not to be so lucky.

With the schools own physio and having Bupa private health care (another perk of being registered at the school) you might think that my treatment would have been smooth and caring. Unfortunately I only have bitter memories of both.

The physio told me it was my fault the curve was worsening and that I was making up the pain.

I could barely hold my left arm above my head let alone complete a whole ballet class.

I was put ‘off dance’ by the Sister to try to reduce the pain and eventually I had to accept that this would be permanent. This perfectly coincided with all my friends preparing and auditioning for sixth forms at all the top dance and theatre arts establishments. It was hell and I wasn’t allowed to get away from it. I was made to sit through every single dance class, taking notes and could be called upon by the teacher at any moment to repeat what she’d said or give a friend a correction. I never confided in any of my class mates how hard I found this and will always bare a scar from when one called me a ‘quitter.’ It was never an easy environment to grow up in but before I had always shared the experience with others. For this I was completely on my own. I felt I’d failed and I’ve never cried so much on my own at any other point of my journey with scoliosis. It was awful, I do still feel cheated and my slight vendetta against all of you who have perfectly formed and functioning spines will never go away. Do you realise how lucky you are?

Bupa refused to continue my health cover when I left Elmhurst as it seems that when you might actually need them, they turn you away. Even to this day I grimace at the Bupa care adverts promising the world when in reality if you bare a medical condition which may need help Bupa ‘health care’ do not, well, ‘care’.

But with that I became an NHS patient and that is what my blogs will cover. This is about me, my scoliosis and the NHS.