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.