A Real Milestone

Last March, I was fascinated to read an article about groundbreaking surgery to rebuild the windpipe of an 11-year-old boy from Northern Ireland, from his own stem cells. The operation, lasting almost nine hours, took place at London’s Great Ormond Street children’s hospital. Stem cells taken from the boy’s bone marrow, were injected into the fibrous collagen ‘scaffold’ of a donor trachea, or windpipe. The organ, which had first been stripped of it’s own cells, was then implanted into the boy.

I was really delighted to read last week that this pioneering surgery has been hailed a success and doctors now believe it could lead to a revolution in regenerative medicine. What an amazing breakthrough!

“A boy from Northern Ireland was released from hospital yesterday after pioneering surgery to rebuild his windpipe using his stem cells.

Ciaran Finn-Lynch, who in March this year became the first child to undergo a trachea transplant, is set to return home today.

The 11-year-old underwent the operation which involved the removal of his trachea and its replacement with a donor windpipe at Great Ormond Street Hospital in London.

Doctors used stem cells from the boy’s bone marrow to build up the donor windpipe and ensure the organ was not rejected. Four weeks ago, they were able to describe the transplant as a success after proving blood supply had returned to the trachea.

His parents, Colleen and Paul, described the last few months as a “rollercoaster” and paid tribute to the surgeons. “We’re just so grateful. We are delighted they could give Ciaran a chance.”

Ciaran was born with a condition called long segment tracheal stenosis, which leaves sufferers with a very narrow windpipe, making breathing difficult.

He underwent major surgery to reconstruct his airways but, at the age of 2½, a metal stent used to hold his airway open eroded. When a second stent eroded, the idea of a transplant was raised.

The boy’s parents said: “When they first suggested the procedure, we agreed to it, though we knew it would be the first time it had been tried in a child. We had 100 per cent faith in them.”

The surgery had been tried in Spain in 2008 on a mother of two.

Ciaran’s transplant took place four weeks after a donor trachea was found. The surgical team was led by Prof Martin Elliott, who said, “Ciaran is a wonderful boy and a great friend to us all. His treatment offers hope to many whose major airways were previously considered untreatable.”

Source: The Irish Times

More news BBC News HEALTH

Memories

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!

What a week!

It all started last Sunday. We had some visitors staying and I wrongly assumed that my constantly recurring headache was as a result of the extra workload. I’m well-accustomed to popping pain relievers in order to function normally and I make no apology for it. As anyone who suffers from a chronic condition will know, it’s the only way to get things done. The secret however, is knowing when to shout for help.

When I dragged myself out of bed last Monday morning I knew I was in trouble. I’d barely slept a wink overnight as my headache was no longer responding to pain killers. As luck would have it, I’d a hospital appointment already booked with the surgeon for the following morning so expert help was at hand.

By the time the surgeon got to examine my head on Tuesday morning, I was in so much pain I could barely talk. A few hours later, I was lying inside an MRI scanner having a brain scan to rule out a possible brain abscess. Thankfully, nothing of this nature was diagnosed although a nasty infection was visible at the site of my recent surgery.

The same evening, my daughter arrived home from her work placement in a hospital, looking like death. She was suffering a flu-like reaction to travel vaccinations received the day before. Despite running a very high temperature overnight and still looking very pale the next morning, she insisted on going back to work. By lunchtime, she was in A&E of the hospital having developed a severe nose bleed while on the wards. Her nose had to be cauterised to stem the flow of blood and she limped home to bed for the second evening in a row.

The next day, I woke with horrible nausea and the return of colitis as a result of the antibiotics prescribed to treat my head. I had no choice but to lie very low that day.

On Friday morning, my husband was admitted to hospital for a cataract operation. Having collected him from the hospital at lunchtime and brought him home to recover, I was looking forward to a quiet afternoon but no such luck. One of our cats appeared with his tail bent double and I knew immediately that an urgent trip to the vet was in store. Last year, this same cat became very unwell having developed an abscess in his tail (most likely from a bite from another cat) and the tell-tale sign was a drooping tail. So, Friday afternoon was spent getting the cat sorted with an antibiotic.

As if the week hadn’t been testing enough, Saturday morning started with an early morning trip to bring the eye patient back to the hospital for a routine check. Having delivered the patient safely home again, I then attended a funeral before spending the afternoon at the nursing home where both of my parents are in rapid decline at the moment.

Today, apart from frequent trips to the loo, I’ve done nothing but loll around in the garden enjoying the sunshine. The pain in my head has eased but I’m not out of the woods yet. If I go quiet again next week, please don’t worry. Wimbledon fortnight starts tomorrow. Bring it on!

Where did you get that hat?

In March 2007, I underwent an extremely rare operation in a specialist surgical unit in Nottingham. A Riedel’s procedure is an operation of last resort and is only used in patients where all other surgical treatments have failed. The procedure causes a cosmetic defect in the forehead but reconstruction can be done at a later stage if necessary.

This first picture was taken to mark my safe return from the operating theatre. During the surgery my head was opened from ear to ear via a zig-zag coronal incision and my ‘face’ was peeled back to the bridge of my nose, to expose the front of my skull. The diseased anterior wall and floor of both frontal sinuses was cut away leaving behind a large hollow in my forehead. The edges of this bony hollow were then ‘chamfered’ (planed) to make a gentle curve so that the soft tissue of my face could fall in and line the hollow area.

My ‘face’ was then put back where it belongs and the coronal incision was stapled together before a pressure bandage was applied with a drain in place to minimise haematoma formation. Ten days later, the staples (all 59 of them) were removed from my scalp and I was well on the way to making a good recovery. I’ll never forget how good it felt to be able to wash my hair again.

The pictures below document my recovery following this operation. My return home from hospital in April of that year happily coincided with the early arrival of summer so I got to enjoy a whole month of lazing around in the sunshine. The sun proved to be a perfect tonic and quickly dried up the pressure sores on my forehead.

In the last year, I’ve had two further operations on my head in Nottingham plus extensive IV antibiotic therapy to eradicate a bone infection. The final photograph shows how my face looks today now that all the swelling has finally subsided. Reconstructive surgery is available to improve the contours of my forehead but having recently discussed the options with my surgeon, I’ve decided not to proceed.

I’m more than happy to leave well alone.

Up close and personal

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 you Alhi 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.

Patients know best

Had you been wondering where I’d disappeared to? Sorry about that. My elderly parents are in need of an extra helping hand right now so I’ve been otherwise occupied. I’ve also had the little business of an operation to recover from and that’s kept me somewhat quieter than usual. This week, it’s definitely been a case of Steph nose best 😉

Recovery from surgery can usually be measured in steps. You know the way it is… two steps forward, one back until you’re over the worst and then it’s generally steady progress from then on. My recovery on this occasion has taken on a different pattern. The first 10 days post-op were the easy bit and it’s been a bit up and down since then. If there’s one thing I’ve learnt over the years as a patient, it’s never to doubt myself when it comes to reporting symptoms.

I requested another appointment at the hospital yesterday as I sensed something wasn’t right. The consultant examined my head endoscopically and was able to confirm my suspicions. Despite daily wash-outs since the surgery, the inside of my head had crusted up again and was in need of further Spring cleaning. I continued to insist that I could also smell decay. After working on my head for some time, the culprit was soon identified. The donor site for the graft was to blame. Some dead cartilage was visible on one side of the nasal septum where tissue had been removed and rotated upwards into my forehead, for grafting. Once this decaying cartilage had been cut away yesterday, my airway felt very much better. I was patted on the back for my skills of detection and sent on my way with a request to return if symptoms recur.

The culture of healthcare is thankfully changing from one of paternalistic medicine to one of participatory medicine. Everyone is better off when patients are encouraged to engage with the medical profession.

Patients Know Best is actually the name of a company whose website is already integrated into the NHS secure network and helps UK patients with chronic diseases, to manage their health care.

Chapter 27

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.

Making History

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.

Any guesses what label I’ll be given? 🙄

Riding Through The Woods

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.

(Information Source: WebMD and Patient UK)

While I’m Away…

I’m off to Nottingham tomorrow for another surgical review.  I last saw the surgeon in June, just 12 days after the 4-hour operation on my head. He was pleased with my progress at that stage and asked me to return again a month later. I never got to that appointment thanks to the development of an unforeseen complication. Before consenting to surgery, I was warned of the dangers of the operation. Osteomyelitis was not on that list but it sure is now! I hope to have more news to share with you when I get back.

I have something for you to ponder on while I’m away. While undergoing prolonged treatment in hospital for the osteomyelitis, it was very noticeable how few Irish nurses were working in the system. It was a large teaching hospital with the usual cohort of trainee nurses on the wards but there were very few fully trained Irish nurses to be seen. The majority of the nurses were recruited from overseas, from the Philippines and India. These nurses were highly trained and  professional except in one regard. While working on the wards, they had a tendency to speak to one another in their native tongue. As a patient, I found this disconcerting as it excluded me from discussions concerning my own care. I wondered if there was a hospital policy requiring staff to speak in English only, while on duty. Do you have any views on this?