Just home from Nottingham following another trip to see the surgeon. The outcome wasn’t quite what I’d expected but if it results in the avoidance of further surgery, I welcome it with open arms…
Those of you who follow this blog will remember that I underwent a graft procedure last year having developed post-operative complications following previous surgery on my head. The graft healed well but the donor site for the graft (upper part of nasal septum) has failed to heal and despite regular medical supervision over the past year, using conventional treatment options, I’m still in trouble. Hence I was referred back to the specialist unit in Nottingham for further assessment.
The surgeon had a good look around the inside of my head yesterday using a flexible endoscope and local anaesthetic. Once nasal debridement had been achieved on the affected side, pictures were taken for comparison with previous records. I was then shown the recording with a step-by-step commentary from the surgeon, outlining the nature of the problem.
While my underlying connective tissue disorder (EDS) is a contributory factor, the surgeon suspects that resistant bacteria are the main cause of my failure to heal. Apparently, with a long history of chronic sinus infection, surgery, MRSA, osteomyelitis and long-term antibiotic use, I’m a prime candidate for bacterial biofilm formation… huh?
In other words… the mucosal lining of my head is banjaxed and I can’t shift thickened mucus (snot!) without some extra help. The solution to this problem… wait for it… is to use baby shampoo to rinse out my head!
I thought the surgeon was having me on but no, he was absolutely serious. Baby shampoo when used in nasal irrigations, has been shown to serve as an antimicrobial agent and works to affect mucus properties and promote secretion clearance. I bet you never thought you’d hear that about a baby product!
I’ve been prescribed a 6-week course of twice daily sinus rinse-outs using a well-known baby shampoo at 1% dilution in a commercial saline solution, as an adjuvant therapy to a combination of other conventional medications.
And so… if you see me frothing at the mouth, with bubbles emanating from my nose and ears… you know why!
In recent years a primary concern for patients being admitted to hospital has been the risk of contracting methicillin-resistant Staphylococcus aureus, commonly known as MRSA.
Many cases of MRSA arise from the transfer of germs from patient to patient due to lack of good hygiene. To address this, hospitals have revised their hygiene practice. Measures have included the introduction of hand-sanitising kits and tougher visitor regulations to reduce the risk of infections being brought in from outside. However, the concern over post-operative infections lingers.
The Royal College of Surgeons Ireland (RCSI) is introducing a Surgical Development Initiative for trainee surgeons which will focus on maximising patient safety and preventing infections following surgery. The RCSI initiative is being launched this month to the new group of surgical trainees who commence their basic surgical training in July. It has been developed specifically for trainees to improve practice in the areas of hand hygiene, the optimal use of antimicrobial prophylaxis, the care of wound sites after surgery and the prevention of bloodstream infection that can result from infected intravascular devices.
The RCSI’s new project is in line with the World Health Organisation’s (WHO) recent prioritisation of patient safety, to prevent healthcare-associated infection (HCAI) and its ‘Safe Surgery Saves Lives‘ initiative which is endorsed by RCSI.
In tackling post-operative infections, WHO has recently published it’s WHO Surgical Safety checklist. The 19-point checklist has shown improved compliance with standards and a decrease in complications from surgery in the eight pilot hospitals where it was used for evaluation. It demonstrated a decrease in mortality from 1.5 per cent to 0.8 per cent and a drop in surgical site infection (SSI) rates from 6.2 per cent to 3.4 per cent.
As someone who has battled against serious post-operative infections (MRSA, cellulitis and osteomyelitis), I welcome any initiative which will reduce the risk of surgical site and healthcare-associated infections.
The WHO surgical safety checklist is an essential aide to patient safety. This video demonstrates how the checklist is used at Great Ormond Street Hospital…
Lying in the recovery room in a post-anaesthetic induced haze, I remember hearing the surgeon say, “we’ve taken multiple biopsies, you have a nasty osteomyelitis in your head but don’t worry, you’ll be fine.”
Exactly a year to the day later, the same surgeon had a look inside my head yesterday and declared it “mended.” Hallelujah!
It’s been a long journey. Thanks for keeping me company!
HOW TO MAKE EXERCISE FUN…
Watch how few people use the stairs at the beginning of this video. And then watch what happens when they make the stairs into a piano.
When I got out of bed this morning, I knew there was something significant about today’s date but I couldn’t think what? Having escorted my husband to the private hospital where he’s undergoing a minor operation today, I drove home deep in thought. It was another few hours before the penny dropped and then the memories came flooding back.
This day last year, I was re-admitted to a large, public hospital via the emergency department having been at home for only 6 days following a week of IV treatment in the hospital. I’d developed a nasty infection in my head following an operation some weeks earlier. At home, the pain in my head had gradually increased to a point where I could no longer bear it and I knew I needed help. As I sat in A&E going through the process of admission, the swelling around my eyes began to visibly worsen so I was rapidly hooked up to several drips and put in the queue for transfer to a ward. As luck would have it, a bed was found within hours and this was to become my home for the next twelve long days.
On arrival in the ward, my first reaction was the gloominess of my surroundings. I was transferred to a bed in a dark, cramped corner of the ward where I lay exhausted but grateful to have escaped A&E so quickly. On looking around the room, it soon became obvious that I was the youngest by far, by at least 25 years and I’m no spring chicken myself! Two of the patients were bed bound, a third was a psychiatric patient and the fourth lady (in the bed next to me, luckily) was a sprightly 90 year old who became a great buddy over the following days. We were soon doing the crossword together everyday but sadly, she was discharged home all too soon only to be replaced by a seriously ill, incontinent patient.
I’ll never forget the days spent in that ward. The two old dears in the beds nearest the windows complained whenever the windows were opened so they remained closed most of the time despite having two incontinent patients in the room. I used to take myself and my drip to sit by a window in the corridor, to escape the awful conditions in that room. I was also trying to escape the attention of the psychiatric patient who was very restless and needed 24 hour care with her own special nurse.
Every morning, a new agency nurse would arrive on our ward to care for the daily needs of our confused room mate. Each day, I would watch the same situation evolve where the mood of the psychiatric patient would gradually deteriorate to a point where her young nurse could no longer calm her and we would then be exposed to many hours of disturbed behaviour. After a few days of observing this situation, I could clearly see where these inexperienced nurses were going wrong so in order to save my own sanity, I decided to intervene. Every time a new nurse arrived, I would quietly warn them of the pitfalls that lay ahead and give them tips on how best to manage the situation. This worked a treat and our days became slightly less chaotic as a result.
The nights were another story. The agency tended to supply ‘carers’ rather than nurses for night time duty. Many of them were college students with little or no nursing experience who had simply enrolled with the agency as a summer job. Having put my eldest son through college and with my daughter still in college, I understood these ‘kids’ and often chatted with them quietly for hours while their charge slept soundly thanks to heavy duty nightime sedation. As my bed was nearest to the door, these carers tended to sit all night on a chair at the end of my bed, using the light from the corridor as a reading light. I would often settle down to sleep for the night with a hunk of a male student sitting just inches away from my feet!
Until this morning, I hadn’t given another thought to the time spent in that room. I was eventually transferred to another ward where I spent a much happier fortnight being nursed back to health in a lovely bright, airy room and where my companions were delightful. Sitting here a whole year later writing about my memories from that time, it feels like it was only yesterday. Today, it’s my husband’s turn to experience hospital life from a horizontal position. When I collect him from the day unit shortly, I know I’m going to find it very hard not to smirk at his tales of woe!
I was asked recently if I’d ever posted any pictures on this blog to document the problems I’ve had with my head over the years. The answer is, no but it started me thinking that perhaps it’s time I should. Words can only convey so much of a story whereas pictures say so much more. So, thank youAlhi for giving me the push that was needed!
My story goes back a long way as I’ve had multiple surgeries on my head as a result of having chronic sinus infections for most of my adult life. About 5 years ago, a decision was taken to insert a stent close to the base of my brain, to drain a recurring abscess in the right frontal sinus. It was at this stage that my husband decided to record my surgical journey with a series of ‘up close and personal’ photographs. Little did we know then of the battle that lay ahead.
This first photograph was taken in 2005, several days after the operation to have the stent inserted in my head. The incision follows the contour of my eye socket and is continued through the eyebrow for maximum disguise. This operation was actually the fifth time this incision had been used to access the right side of my forehead. All previous access had been gained through my nose or upper jaw.
The second photograph was taken 3 weeks later while I was still recuperating from the surgery. I was actually on a sailing holiday at the time when I developed severe headaches and my eyes and forehead started to swell. I knew something serious was going on but I didn’t know what so we made haste back to the hospital. This photograph marks the beginning of my journey with MRSA.
This last photograph was taken following my treatment for the orbital cellulitis. Once the MRSA wound infection had been diagnosed, the stent had to be removed from my head and it took several courses of intensive IV antibiotic treatment, administered over a 3 month period before I was finally discharged from the hospital. I’ve included this picture as it shows how well the incision healed despite the setback.
Less than a year later, the MRSA infection recurred and resulted in the development of chronic osteomyelitis in the frontal bone of my head. Further extensive surgery and treatment has been required in the meantime but I’m going to save those pictures for another day.
I said I’d come back and let you know how my head is faring. Sorry to keep you waiting. I’ve been busy trying to keep on, keeping on!
As you know, I had a fairly easy post-operative phase before the internal splinting was taken out of my head last week. I mistakenly thought that I was over the worst. How wrong I was. My head felt very raw and painful once the splints came out and especially the side of the nasal septum where the tissue was taken for the graft. I was also struggling with the return of the chest infection I’d had in the week leading up to surgery. As each day passed, my head got progressively sorer and a horrible facial neuralgia developed. I knew something wasn’t right as I was reaching for pain relief on an increasing (instead of a decreasing) basis so I requested an appointment with the referring surgeon.
I was seen in the hospital two days ago and the surgeon had a good look around the inside of my head. He spotted the problem within seconds. Since having the splints removed a week earlier, my head had been seeping blood internally and despite daily wash-outs, this crud had congealed causing pressure on surrounding structures. He spent about 30 minutes working on my head with surgical instruments before hoovering up all the debris. A final inspection brought the very good news that the graft is healing well with no sign of rejection. I left the hospital with a definite bounce in my step and I’ve not looked back since. Next stop is Nottingham in a month’s time for what I hope will be, a final review.
You may be wondering what the title of this blog post is about. Some time ago, I received a comment on my blog from a new visitor who was delighted to find my personal story. You see Alex has been on an uncannily similar journey to my own with years of fighting infection in her forehead, multiple surgeries, hospital-acquired infections, osteomyelitis and long-term IV antibiotic treatment. She too lives with a hidden disability except for the large dent in her forehead. Alex recently started her own blog called Bugs Drugs and Rock n Roll, to document her journey. It was Alex who taught me about KOKO. When you live with a chronic condition, you soon learn how to keep on, keeping on.
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 recovered 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.
Last June, I was admitted to a specialist unit of an NHS hospital for surgery on my head. I was no stranger to the place having had a major operation there two years previously. Revision surgery was now required as further complications had developed. On this occasion, I was under the care of a surgeon who specializes in image-guided endoscopic surgery. I was about to undergo an operation which required high precision and carried a significant risk of accidental damage to critical organs. I was also about to make medical history.
I was admitted to the hospital the day before the operation, to be assessed for the complex surgery which lay ahead. My first port of call was to a photographic studio in the basement of the hospital, to have my head photographed from every angle. This was because of my stunning good looks to record the cosmetic defect in my facial profile, due to previous surgery. Next, it was off to the nuclear medicine department to have my head scanned under the supervision of the surgeon. These scans were subsequently used for navigational purposes throughout the technically demanding surgery.
When all the preparations were complete, it was time for a consultation with the surgeon and his team. It was at this stage I learnt that plans were afoot to record my operation for teaching purposes. My history of multiple sinus surgeries* provided the surgical team with an unusual challenge and the operation now planned, had the potential to become a valuable training resource. I had absolutely no hesitation in granting them permission to make me a ‘film star’ for a day. Anything that helps to lessen the risks associated with complex surgery and ultimately, increases patient safety, is to be encouraged.
*For those with an interest in Otorhinolaryngology…
My ENT surgical history includes : A bilateral antrostomy; a Caldwell Luc procedure; multiple endoscopic nasal surgeries; 5 external frontoethmoidectomies; a Riedel’s procedure and a modified endoscopic Lothrop procedure (Draf 111).
My ENT medical history includes recurrent sinus infections, chronic frontal sinus disease, MRSA infection, orbital cellulitis and osteomyelitis.
I also have an inherited connective tissue disorder called Ehlers-Danlos syndrome (EDS) which has added to the complications over the years.
Well, as you can see, I’ve lived to tell the tale. While the signs are encouraging, it’s still too early to know if the latest operation will prove successful in the long run. After what seems like a lifetime of surgery, I feel I’ve earned a place in medical history.
I recently wrote about a crisis point when I came close to losing hope of winning the battle against a serious infection. I’d been re-admitted to hospital having developed complications at home following specialised surgery in the UK. It was a tough time but I never expected the outcome that followed…
Osteomyelitis, an infection of bone, was raging inside my skull and was failing to respond to a combination of IV antibiotics. I was considered at high risk of developing cavernous sinus thrombosis, meningitis, intra-cranial infection or septicaemia, all potentially fatal conditions. My eyesight was also under serious threat. When my condition deteriorated further, it was decided that I should be taken to the operating theatre to have multiple bone biopsies taken for analysis. On waking from the anaesthetic, I was informed that osteomyelitis had been confirmed and that a new regime of IV antibiotics would be commenced. Within hours of starting the new treatment, I’d turned the corner and was out of danger.
When the surgical team arrived at my bedside the following morning, they were beaming from ear to ear. The senior registrar turned to me and said, “You do realise that you’re famous, don’t you”? I looked at him in puzzlement. He told me that when my head was examined in theatre, it had caused enormous excitement. The pioneering surgery carried out in the UK, had proved fascinating to the Irish surgeons. The internal anatomy of my skull has been so radically altered, I’ve become an original of the species. It seems I’m now regarded as a rare medical specimen. Thankfully, an alive one!
Next week, I’ll tell you about how I became a ‘film star’ for a day.
Thanks folks for all your kind wishes last week for my trip back to see the surgeon. I’m sorry to take so long to report back on the outcome. While the day in Nottingham went smoothly, I was totally exhausted following it. With the arrival of our late summer, Connemara beckoned and I joyfully obeyed the call. I’m now suitably revived.
Since finishing all the treatment for the osteomyelits, I’ve been having recurring headaches along with episodes of acute bone pain. Despite taking strong pain killers plus an anti-inflammatory medication, the headaches have continued intermittently leaving me to wonder if the bone infection had really cleared. A recent blood test did little to allay this fear as it confirmed that the inflammatory marker (CRP), is markedly raised again.
(Image credit: Display at entrance to Nottingham Castle – photo taken on my mobile phone)
In Nottingham, the surgeon carried out an endoscopic examination of my head and and the report back was encouraging. The bone which was exposed by the surgery, has healed well despite the set-backs. However, the surgeon agreed that the abnormal blood test was a cause for concern. I had another blood test before leaving the hospital and a radioisotope bone scan has been requested, to check for any residual infection in the bone.
Due to the nature of my ongoing symptoms, the surgeon has advised that neuropathic pain is the most likely cause. This type of pain occurs as a result of damage to nerves following surgery/bone infections. Neuropathic pain is difficult to treat but can be eased by ‘tricyclic’ antidepressant medicines, by an action that is separate to their action on depression. Treatment is usually long term.
“Neuropathic pain (‘neuralgia’) is a pain that comes from problems with signals from the nerves. There are various causes. It is different to the common type of pain that is due to an injury, burn, pressure, etc. Traditional painkillers such as paracetamol, anti-inflammatories, codeine and morphine may help, but often do not help very much. However, neuropathic pain is often eased by antidepressant medicines – by an action that is separate to their action on depression. It is thought that they work by interfering with the way nerve impulses are transmitted. There are several tricyclic antidepressants, but amitriptyline is the one most commonly used for neuralgic pain. In many cases the pain is stopped, or greatly eased, by amitriptyline”.
I was sent home with a prescription for a low dose of amitriptyline. The side effect of this medication is increasing drowsiness so I’ve been advised to take it only at night and to persevere with it as it can take several weeks to get maximum benefit. If, after 3 weeks, I’ve not experienced any relief from the pain, I’ve been instructed to double the dosage every week until benefit is achieved. So… if my blogging becomes more sporadic with words slurred, you’ll know why!
The surgeon’s parting words to me were “you’re not out of the woods yet but there is light at the end of the tunnel”. That sums it up nicely.