This being the start of a new year, my surgeon had a new senior registrar in tow at his out-patient clinic yesterday. Having outlined my extensive medical and surgical history, the consultant summed up by saying that a book could be written about my case. Four different surgeons have operated on my head at this stage and at least four more have been consulted, in an effort to solve the problem of chronic infection. Just recently, I found an old file at home which contained a detailed record of all the surgery I’ve had over the years. I was amazed to find that on my head alone, I’ve undergone a staggering 26 operations under general anaesthetic. I knew it was a lot but I’d lost count years ago as I’ve been through many day procedures and other operations as well. Yesterday’s consultation concluded with the surgeon suggesting, not for the first time, that I should write a book about my experiences. Right now, a new chapter has already begun.
My last trip to the operating theatre 2 weeks ago, was for a ‘drill-out’ of a small area of recurring bone infection in my head. The exposed bone was treated with an antibiotic medication and I was discharged home the following day. Once I’d rec
overed from the effects of the anaesthetic, my head felt good and I was confident that the treatment had been successful. However, a week later my symptoms gradually returned and my hopes were shattered once more. An uncharacteristic despondency descended over me as we entered the New Year.
On examination in the outpatient clinic yesterday, the surgeon confirmed that the infection has recurred in the bone. I was concerned that he would opt to refer me back to the specialist unit in the UK but to my relief, he decided to proceed there and then with some further work on my head. While the treatment was unpleasant (without anaesthetic), it certainly wasn’t unbearable and I have been asked to return in 2 week’s time for another session. If this treatment fails, then I will definitely have to return to Nottingham for further assessment. The story continues.
Biopsy Report 
Oh Steph, I am not surprised you are feeling down – I sincerely hope that this time the infection is well and truly zapped. It seems to me that you are having more than your fair share of procedures and infections and that 2010 is the year that you get a break from it all. Good luck for the next session although I can barely type that because I am just willing it all to go away for you. In the meantime I will be willing you well each and every day. With very best wishes.
Steph, I hope you are feeling a little better today. Rest plenty and stay warm. Big hugs.
Oh Darls. GrannyMar did mention and I’ve been meaning to email for ages. I did send a hooray via Skype but you must have signed out. I don’t blame you for being despondent. All these setbacks, prodding and poking, light at the end of the tunnel and constant recurrence, it’s more than a soul can bare. I just hope he knows what he’s doing! All the best and let’s hope that continued and regular antibiotic treatment finally kills this voracious bug.
achelois – Thanks! It’s sure tough having your hopes raised and dashed continually. The despondency has lifted now so I’ve decided not to get my hopes up on this occasion. This means it’ll be a nice surprise if the treatment actually succeeds and if it doesn’t, then I can at least remain philosophical about it. I don’t know why I’m telling you this as I’m quite sure you know very well how to deal with disappointment.
Grannymar – My head is actually sorer today but that’s all part of the healing process. As long as I’ve no headache and can’t smell rotting flesh, then I’m onto a winner!
One of the worst aspects of the present problem is that the area of infection is in the region where the receptor nerve cells are for sense of smell. As soon as the infection starts up, I can smell ‘decay’ 24 hours a day and it ain’t nice.
Baino – No worries. My computer is in the kitchen and was in general use over Christmas so it’s quite likely that I was signed out of Skype at times. I’m just sorry to continually bring ‘bad’ news so that everyone repeatedly, has to commiserate.
My surgeon and I have a good understanding of each other and if I suspected for a moment that he wasn’t making progress on my behalf, then I’d be off to the UK in a shot. My head has defied all the norms in terms of surgical outcome. The last two operations in the UK were meant to be the ‘definitive’ surgery to fix the problem. The radical surgery improved my overall situation but it has not succeeded in stamping out the chronic infection so for now, conservative treatment is the order of the day.
Hi Steph, I sincerely hope this last treatment (without anaesthetic – *shudder*) has finally done the trick for you.
A book about your medical experiences/ treatments, sounds an excellent idea – and even more so if it were to be included in the general medical training curriculum (?) Who knows, maybe some up and coming bright spark will discover a new bone steroid cure, or gene alteration method (of the ‘bugs’ DNA, not yours!) or some such thing – and render surgery and antibiotics obsolete.
(Have had so many different antibiotics for my own lifelong, chronic lung infection (bronchiectasis), that I am now super allergic to the whole range! Prednison is about all they give me nowadays. Not good for the bones though, (i.e., ribs) when I cough)!
Best of luck to you Steph. Fingers crossed that all will be well this time. xx
Geri – Thanks! I’m sorry to hear about your lungs. In many ways, your condition has a lot of similarities to mine. I, too have real problems with allergic response/resistance to antibiotics from years of treatment for chronic infection. Ideally, the surgeon says that I should be on antibiotics now (long-term) to back-up the surgical treatment but this isn’t an option as it would cause an antibiotic-associated colitis again. It really is a vicious circle. The surgeon told his registrar that if things worsen with my head, his only other option is to admit me to hospital x 4 weeks, to have antibiotics administered through a central line into my chest. The problem with this course of action, is that it can be soul-destroying if the infection recurs once the antibiotic treatment is stopped. Been there, got the t-shirt!
You’re quite right, it’s time some new ‘magic’ cure was discovered to treat chronic infection.
Steph what can I add that hasn’t already been said.
I really hope Chapter 27 has a very good ending.
Hoping for new bone infection cures yesterday – and discover this on the news this morning.
http://news.bbc.co.uk/2/hi/health/8438209.stm
Discovered in Italy. Maybe they should call it the ‘Pinnochio’ treatment(?!)
Looks promising.
Oh Steph, I’m sorry to hear this further set back. For some reason I couldn’t get your comments to open to leave a message yesterday.
All this love and best wishes for you should really channel itself into a bone healing cure 😉 but til then I’ll be keeping everything crossed for you that the situation improves asap
Hugs BG Xx
Lily – I like that idea for sure! 😀 While I’d multiple sinus wash-outs as a child, the real surgery began as far back as 1987. It’s high time this story came to an end and preferably with a ‘happy’ ending.
Geri – I like your discovery although it won’t help your poor lungs. It does look promising for the future, particularly for those cancer patients who need re-constructive bone surgery following tumour removal.
If our bones were replaced with ‘trees’, I wonder would we creak in the wind 😉
Bendy – Thanks! I think my comments facility must have frozen over yesterday 😉
I’m sure this extremely cold weather isn’t helping your situation much. Here’s sending you warm hugs!
Oh Steph – I’m not going to commiserate – instead I’m going to start 2010 in an up mode and congratulate, commend and cheer your spirit. When life gives you lemons you have the most wonderful way of making lemonade. We are rooting for a head healthy 2010 for you. Big healthy hugs coming from the west to you. xx Ann
Ann – Cheers! I really appreciate that, thanks! I really look forward to the day when I can bring my loyal readers, a reason to celebrate.
Dying to hear how you guys got on?
Oh Steph, you poor thing. I really hope they can sort you out here to save you returning to Nottingham. Take care xx
magnumlady – Me too! I’ve had two ops in Nottingham in recent years and I really don’t fancy going back for any more. As you know only too well, being in hospital is difficult enough but being far away from home as well, doesn’t make it any easier!
btw I can feel your heating from here! 😉
Good luck at your appointment xx
Jeanie – Thanks, you’re very good to remember.
Hi,
My name is Sharon Ray and I am the assistant editor of Cysticfibrosis.net. I am contacting you today in hopes of developing a relationship with your website; we have seen your site and think your content is great. Cysticfibrosis.net offer a free informational resource to both the general and professional public on this terrible disease.
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Hello Sharon
You’re welcome to link to my blog if that’s what you wish. However, please note that I do not support any advertising on this blog.
Thanks
Steph