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.