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.