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.