Osteomyelitis is infection of the bone. Usually caused by a bacterial infection, quite hard to initially diagnose and usually found in the long bones of the body.

Although it affects children and adults, it is usually the result of another infection that gets into the blood stream.

I have added a link to a far more knowledgeable and reliable source on the link section but want to just share some questions to ask and things to be aware of for anyone who is diagnosed with osteomyelitis.

Ask for your CRP levels. These are the C-reactive proteins that measure the level infection in your body. Usually under 5 in a healthy adult, they can be increased by other conditions but you will generally see these levels coming down once you have been given the correct antibiotics to counter the infection.

Make sure that you get your blood levels taken on a regular basis and that these are going down. Your bloods should be taken at least once a week and monitored to ensure that the antibiotics you are taking have taken and are continuing to take effect.

Make sure you take a detailed list of all the medication you are taking and read and take note of the side effects that the antibiotics have. You may have to take them without food or avoid dairy products for a while. This is all very important as you want the antibiotics to work and for you to recover as quickly as possible.

Be aware that some antibiotics actually make you feel worse than you did before becoming ill. If you take care of yourself and increase any vitamins and minerals you may need this should help you recover once you have completed your course of antibiotics. But make sure that they will not interfere with your medication.

Make a diary of your food intake as this might be altered due to the effect of the infection and antibiotics. Be aware of what you are able to eat and make sure that you do as your body is telling you. There are some people who have documented that they become gluten intolerent during infection and have chaged their diet accordingly. This is very personal but be aware of your body and try different food groups that can help you get through this period without as much pain and to help with any stomach and bowel problems that you may have to deal with during the long period of taking medication. Please consult your doctors if you are concerned at all about any problems such as diarrhea as they may have to change your antibiotics to combat colitis and they can also do a full blood count and suggest any supplements that you may be lacking due to the medication.

If you have an open wound make sure that you are cleaning it in the correct manner. Ask for help by somebody in the infection control department if you are unsure as someone who is not specialised or used to dealing with Osteomyelitis may not give you the correct advice.

Ask questions and do not be afraid. I know that there isn’t that much help for you as there would be with more infamous illnesses but this can be beaten. There are loads of us that have lived with, conquered and quashed this disease. Some time and time again and some forever.

Be positive. Be determined. Be honest with yourself and rest when you need to rest and be well when you can be well.

Firstly, I must be brave enough, I must be brave enough – mantra for the day.

So what should I ask my consultant today?

I will write this down as I think and this list is never exhaustive and never enough as I have learnt from past experience. I almost always have a list and am almost always never brave enough to ask everything on it.

I nearly always take someone with me for a couple of reasons. One I can’t remember everything they say and two, I need back up!

I always have a smile on my face (it is my version of a nervous twitch!) and therefore everyone assumes that I am the happiest person and the most stupid person and the most naieve person and the most weak person just waiting to hang onto every word that they say as Gospel.

I love every single one of the people I see just because I am still here and, regardless of what has happened, that is most important to me. The thing is I also have to listen to them all individually contradict each other, in fact, I have had to a couple of them fighting in front of me and therefore I realise that although each and everyone of them are doing their best that perhaps they are not always right.

You see, when you are incredibly vulnerable, you become reliant on these people and you have to trust them. The same, I am afraid, does not happen in reverse.

I have to take what they say in the 10 minute consultation that I have waited hours for in the waiting room and usually weeks (sometimes months) for in my head and live with it.

I don’t get to go away from what they tell me. I don’t get to go home, relax and think about other more wonderful things over a glass of wine. I have to live with and try to make sense of it until my next consultation.

I do try my best to be optimistic but sometimes I feel the raging bull appear as if by magic and not only do I have to suffer but my poor family have to deal with it too.

And so as I sit here my mind becomes blank and all the questions that I have been ruminating on over the past few weeks disappear. I shall go and have a coffee and get on with my morning. I shall come back to this and write the questions down when I think of them
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I had the last operation to cut out any residual infected or necrotic bone from the original osteomyelitis because my forehead was so thin. I had never been diagnosed with MSSA or pseudomonas before and the disease had never gone through the skin and caused a wound, in eight years. So this is definately a different infection that was (on the balance of probabilities seeing as I couldn’t have got up there myself and put pseudomonas an HCAI or found in the soil or MSSA for which I am constantly being swabbed for) caught during surgery. Right?

Just because I now know that it failed because of infection I want to ask why the operation that I went in to have was different to the one I came out with.

I was told that I needed the operation (by neurosurgeon). It was not for cosmetic reasons. I was told the plan was to give me a cranialization whereby the cut would be over the top of my head from ear to ear and that they would take the top slice of a part of my skull at the back (we have two slices, a bit like a sandwich!) and fill the hole left by taking the necessary part of my forehead away (should have asked to keep this for the grandkids!). Bone was better but I am aware that you had a piece of titanium mesh at the ready just in case. You were going to pull my brain forward and stitch it into place in order that there was no gap between my brains’ dura and the new skull and I was getting the last piece of necrotic bone from the back of my frontal sinus taken away for this to happen and that the wonderful drainage holes (that my fantastic ENT surgeon had given to me along with the best time in frequent years) would be blocked in order that the whole unit (my skull with brain inside) would be closed to infection.

Why then did you take a (double) piece of very good bone above my hairline and replace my forehead with that and the good space with titanium?

I know that the back of my sinus you found to be very tough and calcified (almost bony) and therefore were unable to move it. So why, oh why, did you block up my fantastic sinus drainage????

It left an empty enclosed gap just waiting for an infection to happen and was exactly why you said you couldn’t leave my brain where it was in the first place!

Why was I moved the (next? – sorry morphine assisted forgetfulness) day following my operation from an open ward to a side room after one of the nurses whispered to me that I had an infection?

Why was I told that one of the elderly patients in the shared room had C-Dificile?

Why was the shared ward then deep cleansed?

What infections have had to be dealt with since then?

If you suspected pseudomonas why hasn’t that been documented?

Why did I have to wait so long until I was sent to Infection Control and people started monitoring my blood count?

I was at home on Flucloxacillin for 3 weeks post being in hospital on the same plus more antibiotics – why was I not blood-tested at all during this time until I was so sick that the nurses (who were giving me the antibiotics 4 times a day) refused to medicate me and sent me to A&E where I was given an ECG as I was getting major trachicardia (heart racing to a techno beat) and blood test which stated that my CRP was over 30 (the normal rate is below 5 and even when I looked like the Dora the Explorer helium balloon was still low). Only then was I put on different antibiotics (as the Fluclox obiously was not working i.e. resistant to the bug I had)?

Why was the Picc line that I had inserted not monitored correctly? I was unable to walk and talk at the same time and out of breath constantly from October until January and after it had been pulled out of my heart by 6 centimetres. I was told by the nursing team who had been told by the plastics team that you were confident that I was not having any of these symptoms from the picc line and left a message on my phone to tell me so even though I hadn’t seen anybody about it.

When is MSSA re-classified as MRSA? I went through many different types of antibiotics that didn’t work (is that not resistant?).

Out of the whole reconstructed area how much is salvageable?

I can see that on one side of the open wound the bone and skin is coming away does that mean that the hole around it has a good blood supply and that I am dealing with an inch wide space or is it the whole of the area (and I am scared to ask – more?) is damaged?

I understand that you can’t graft skin over dead bone and into a space that is not there but what is the plan now?

Why does everyone keep referring to problems when that part has been dealt with (again my ENT surgeon has had to reopen and redo his last wonderful job and therefore fixed the sinus bit) and we are now dealing with a hole caused by an infection called ……………. (please write them all here!)

If you are not honest and don’t write the infection down it may affect any life insurance that I was honest enough to admit that I had previously on which had said that my brain tumour had been removed, suffered recurrent sinusitis and osteomyelitis and which was the most pressing reason for me to go for the reconstruction in the first place – please be honest as I know this is different I have been told that!

The MSSA/MRSA/Pseudomonas/C-Dif (please delete as appropriate) infection/s that I have – can they be completely eradicated.

These are just some of the more complicated questions that I would really like answered but I will probably just go in and smile : – ).

I know, I know – Fad diet nutter!

And sometimes that is true, but the more I feel for myself how wheat hurts (and I mean, really hurts) me the more I feel that this protein fuelled, low carb (my true love) way of life helps me.

A FB friend recently started and is shedding multitude. I, on the other hand, was veering towards it by natural de-selection. And so, it is with great interest that I have come accross a multitude of personal MRSA websites that feel the same way as I do.

I am not going to go into detail now but will try to put something together that I can truely understand.

Amazing.

After the long awaited and yet fearfully anticipated forehead reconstruction I recovered quite quickly and once my new forehead was revealed I felt over the moon.

It was as if parts of me had been returned – not only physically but within me there was the long forgotten confidence of a rather good – looking girl who had a career, a social life, friends and happiness. Of a girl that thought nothing of singing in front of hundreds of people. Of a girl who would go against the law of apartheid and teach drama to children in the local townships just to see the joy on their faces. Of a girl who give up any chance of a university degree because of her unfailing belief that what she was doing was morally right. Of a girl that could dance until the sunrise and laugh until she cried.

Everything was immediately achievable and the recent past where I had become withdrawn, under-achieving, reclusive and very bad at social situation dissapeared. I had the privalege of being able to step into my past and gain wonders.

Although I was dealing with having 40 odd staples and bald patches of hair and, of course, the sensation of having a rather tight hat which I was unable to take off, I was given, quite literally and more importantly psychologically, a new lease on life.

Little did I know that it was not to last.

I am not necessarily unhappy that I had this experience because it did make me realise how inhibited I had become. After being diagnosed with Post Traumatic Stress Disorder (PTSD) I knew that I had a name to my problem but I am a person to deal with something and so I did and had no idea how much of a hold it had on my life.

I had freedom and peace and the ability to relax for a whole week or so. I could look forward and make plans, smile and immediately mean it without secretly gritting my teeth. The little things that would have upset my day were temporarily nothings.

You see, I have had quite a bit of training in drama and I realised that I had been putting it to good use.

Anyway, after the swaddling headress was undone, the staples removed and the matted hair tidied as well as could be expected I was delighted, confident and able and willing to conquer the world again. I had reasons to live. I had my life back.

Although we all noticed that there was a small area of air between the skin and bone graft at one of the edges, I was reassured that this would subside and eventually bond.

Unfortunately this did not happen.

Over the weeks it stayed and after the swelling that caused my face to look very much like a helium balloon of Dora the Explorer went down it became a little red dot.

This little red dot started to raise alarm bells with the consultants and because they were used to dealing with this latest form of infection and said that it would probably errupt.

It took a couple of months to break through and different types of antibiotics, again unfortunately, did nothing to stop the eventual hole in my head appearing.

I had dealt with dents before but not a wound and although I was too ill to be immediately disconcerted with the disfiguration effect I was still optimistic about the outcome.

As the weeks passed the hole became bigger and the wound opened to expose the bone and soft tissue. Every time I went to a consultant they acknowledged this but I was still optimistic.

It was only at my last visit to my wonderful ENT surgeon that I realised that I was going to have to deal with a lot more than just a skin graft.

He started talking about vascular stuff! I know the bone that is exposed is a bit rubbish, but I am still none the wiser as to how much of this bone is rubbish as almost the whole of my forehead is either bone graft or titanium.

I received the follow up letter from Infection Control stating that they thought that it was the best course of action to come off the antibiotics as they were worried that they would, in turn, cause more problems but they could not be sure that they had eradicated the infection. I have an open door policy in place!

I know that in most cases of raging infection and when that infection is on the site of a foreign body, in my case the titanium mesh, that the foreign body is removed before they start antibiotic therapy as there is a good chance that the infection is deep within it.

As I get better and better within myself, the hole gets larger and larger. Hurting and pulling whenever I turn in bed. There everytime I look in the mirror. It is now almost one inch in diameter and that is the bit that is exposed. The bone is separating and splintering on one side. There is a deep rooted fear that this could just keep getting bigger.

The plasters that I use are no longer covering the area and you can see an obvious defect. I am far too self-conscious to look at it more than once a day when I change the plaster. I have not had a swab for months.

Although I feel fantastic today, I am aware that on the 25th (which is my 39th birthday) I have an appointment with my wonderful, smiley plastics consultant and his team.

He will let me know what he saw in the operation on the 8th February. He will either tell me the plan or give me some ideas. Half of me wants them to include me in those options, the other half just want them to fix it.

Most importantly I just want it to go away. I would love to run but I have no option of that. The hole in my head is getting bigger and the silver plasters don’t!

So I went to see my ENT surgeon on Friday.

I have been off the antibiotics for nearly 3 weeks and so on that note everything is looking good.

There is a problem though. The bone graft under the titanium plate which is almost the size of my forehead is rubbish. It doesn’t have a good blood suppl and has therefore not taken very well and, in turn, it is causing the hole in the skin to get larger.

And so he spoke rapidly about me going to be centre of discussion at their multidisciplinary meetings so that they can all discuss what they are going to do with me.

Frontal bone flap, skin grafts blah, blah, blah!

I just get more complicated as this story unfolds.

My ENT surgeon told me that he often speaks to my plastics consultant and whilst they have conversations regarding world politics, the state of finance, they inevitably turn the conversation around to me!

Needless to say I am going to have to go through another almighty operation but at least I am alive to do it after seemingly beating MSSA, pseudomonas and strep infections to this point.

I spent yesterday and the rest of Friday dealing with my PTSD in its angry phase. Hating the world and feeling as though I had consumed a bottle of wine whilst watching people brush past me all being normal.

l even tried to do ‘normal’ myself and sit and have coffee and a cake without hatred wanting to punch every living soul (including dive bombing pigeons).

Needless to say – PTSD and the pigeons won!

I have been away for a weekend with friends.

Not something new or lavish. Nothing too exciting or extreme. For me it was the start of normality again though and there is nothing quite as good as normal when you have been living in a cocoon of infectious disease and uncertainty for so long and for that I am truely grateful.

Just to be able to have conversations with friends instead of a barrage of nurses, doctors and consultants who look at you with their head slightly leaning to one side with that ‘there, there’ look plastered all over their faces which roughly translates as we don’t have a clue how this is going to turn out for you but we are trying to be decisive.

I still have an affinity with lavatories – I never like to be far away from a good standard of ablution facilities but the other day I walked fast enough to overtake a pensioner with a walking stick! How cool is that.

I have visions of me partaking in the 2012 Olympics in the hidden disability hurdles which will be under the ‘you can’t run but we will certainly try to hide the fact that it was our fault’ section.

It is only now that I realise that I really have no idea what was wrong with me as it is so hard for anyone to give you straight answers nowadays for the fear that you will sue them and as I mentioned before this is the reason I am writing this all down. I want other people to realise that they are not alone.

Although the MSSA infection is supposed to be the better of the Staph infections and in spite of the fact that I was catagorically told that I had a ’suspected’ pseudomonas infection, it was because of the good standing that MSSA has in relation to all of these killer superbugs that MSSA is the only infection that has actually been written down in my notes.

I also have been able to grow Strep and what is euphemously written down as Diptheroids and converted to normal skin flora from the open wound on my forehead. Each of these bacteria are killers if they get too much of a hold on your body and as I start to feel ‘normal’ again I realise that I am truely grateful to be alive and although I obviously am a superwoman that does not make me forget to count my blessings when I have what everyone else would consider a boring old day.

To me it is a kick in the teeth to infection and another point in my favour.

How lucky am I to be alive?