I know I haven’t been writing on this blog for some time now but I have been writing!

I have just been concentrating on the positive things that I need to achieve and want and am able to do. I have been collecting my thoughts, spending time with family and friends, dreaming, and fighting yet another infection!

I went to see my consultant and in spite of the infections they are hoping to do the operation to re-repair my forehead, only this time they will use vascular surgery and take veins and skin from my forearm and I am positive that this will work.

Although I can now drink my coffee through the hole, I have threatened to appear on Britain’s Got Talent with a stream of multicoloured smoke if I don’t get fixed soon.

At this moment in time I am awaiting a date to be co-ordinated for the surgery to take place as it has to fit in with all of my consultants.

I am alive! I am positive! I am grateful!

Thank you.

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.

Dear Sir or Madam:

I tried to make an appointment this morning to see a doctor urgently as I have been feeling so dizzy everyday and it seems to be getting worse.

If you choose to help me then please do quickly. I will write for my right to appeal the decision by the DLA tomorrow and send it special delivery with a copy of this letter included. If you chose not to help me then please take this letter as a formal complaint.

I do not know if this dizziness is related to my head or my PTSD but I think I deserve to be seen by someone who has an incling about what I am going through. 1 doctor has left, 1 had an appointment on 23 April and 1 sometime in May.

I had not felt that I was able to come to see anyone at your surgery as I have recently received my letter of refusal from the DLA who say that they contacted you regarding my condition. As my dizziness only began after this news which is crippling when you have been as ill as I have I presume that it is from my PTSD which will have returned because of this devastating news. If your surgery wrote this down then you must take responsibility for the outcome. I can not and will not be more ill than I am and have been.

As I think that having 1/3 of my skull removed in July this year, my veins and tissue removed from my arm, MSSA, Pseudomonas and Post Traumatic Stress Disorder is enough to qualify I am very angry by not being supported by this surgery. I have been practically housebound for 9 months. I refuse to be more ill than I am and lie about my good days – they are too precious to me.

I was too angry to even bother to come and see you.

This morning I received a call from my life assurance policy holder who said they could extend my life cover years if I go through the channels including yourselves again.

It was then that I knew that whoever filled in the form for the DLA would also fill in the form for life cover. I also know that I would not get extra life cover because of my condition and this has to be noted. As I have not been told that I can be fixed and that I will survive I should have been given more support anyway. The best I have got when I ask my consultants if I will live is ‘I hope so’. How would the form have been filled in if I had a more regular and less controversial condition that was as life threatening?

I am so distraught that I can not talk and have been on the verge of crying everyday and every hour for the last 2 weeks. My dizziness is getting worse and it feels as if my body has been cut into 5 different sections and they are all rolling in different directions. I feel so drunk from dizziness that I have not driven. In fact I have only felt well enough to drive about 5 times in total since surgery.

If the best I can do is write to the surgery that is supposed to be my first point of care then so be it. I am too tired now but not only is the balance of my life in your hands but that of my son and the rest of my famly.

I am living on my sons inheritance, I am not on any benefits, I can’t work with a one inch piece of rotting bone poking through my head and the chance of infection returning. All I can do is pray that this will all be but a memory after the next lot of surgery and recovery.

Because of my honesty on my life insurance which was taken out after my initial surgery they will argue that my condition is related to sinusitis and osteomyelitis and my son will chance receiving nothing. I know this is not true because I was told that I had to have the operation in order to take away the infected bone from the initial condition and one of my surgeons told me that this infection was completely different. Both my ENT and Plastic surgeons have told me about the pseudomonas and my family were with me at the time and yet it is not written down in my notes once. I want it on record that should I die that it is not from the original conditions of sinusitis and osteomyelitis (one of my reasons for having it removed was so that it could be taken off my life cover for my son).

I have battled MSSA and Pseudomonas following incubation from my surgery on 6th August. I have also grown strep and diptheroids on my wound. Each one of these bacteria can be fatal.

I have been through so many different types of antibiotics because they did not work i.e. resistant.

I had a different surgery to one that I was told. I was supposed to have my brain moved into the hole between the front of the reconstructed skull and this was unable to be done as the dura has become calcified. Yet I still had the sinus obliterated and this is where the infection occured. If the drainage had been left the chance of the infections being able to take such a hold on me would have not have been there as they would have just drained out through the fantastic drainage for which I have had to have 2 follow up operations to correct.

I am scheduled to have reconstruction surgery sometime in July to reduce the risk of infection and if the infection has not returned.

I have been taken off of antibiotics because I was so ill on them that I was in constant pain and was very close to being incontinent. This was only a few weeks ago and so for only 3 weeks since the beginning of August can be classified as good and I am not due to be better for another 6 months at least and therefore you could help me still.

The surgeons and Infection Control do not know if the infection will return. If this would have been in my foot it would have been amputated.

My family have been supportive and incredible throughout every year since 2002. This has an overwhelming bearing on how they live their lives. My father, my mother, my sister and now my boyfriend now stay with me to help but because we do not shout we get pushed aside.

I am appealing for the help that I am entitled to.

Yours sincerely,

Alexandra Jones

I sat down to write a letter to appeal the Disability Living Allowance today and try as I might I couldn’t.

I feel angry and then I doubt myself.

All in all it just makes me feel so low. I know that I must do it as if I don’t they will just tell me that ‘you should have appealed’.

I want to be as well as I can be when I can be. I have no control over when I am ill but I am not lying about it.

The last letter from Infection Control said that they thought it was best for me to come off antibiotics because of the extra harm they are doing to my body. They also said that they would not necessarily stop any further infection. They could not tell me if any infection would return.

All I do know is that if my infection was anywhere else in my body they would have taken any prosthesis out BEFORE they even began the long antibiotic therapy or just amputated.

Seeing as that amputation was not possible because the MSSA / Pseudomonas infection was in my head I have to live with the knowledge that I can be struck down again before the next operation in July when I will hopefully and finally be well enough to have most of my forehead and the skull up to the midline of my hair removed and completely replaced with titanium mesh.

As you can imagine the flashbacks and flashforwards are not a pleasant experience!

I would love to work but have a one inch hole with protruding bone in my head and not the most exciting prospective employee at the moment and I figure if I could get the DLA it might just help me tick the disability box for an employer and perhaps I could get a little job that could fit between now and the operation.

Anyway, I shall try again tomorrow. I am not going to be more ill and suffer more than I have – I am going to get as strong as I can to get through this operation and if I have to be poor then so be it. I will write about that too!

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
—–

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 : – ).