Progress of Sorts

Where did we get to? Oh yes, I remember… I was in ‘yellowland‘ having the nasal prosthesis removed under sedation. That’s just over a year ago now and I guess you’d like to know how my head has been in the interim? Here goes…

When I returned to see the surgeon for a check-up, it was lovely to be able to report that I’d had no headaches or active infection since the prosthesis had been removed. However, I also had to report that the healing of my nasal septum had broken down again and this was confirmed on examination. We both looked at each other in disbelief. What to do next?

I was given two options… return to Nottingham for advice or do nothing and see what happens. I chose the latter as I couldn’t stomach the thought of any further intervention. A month later, I went to discuss the situation with my GP. I wanted to find out if there could be an immunological explanation for my long history of infection and failure to heal. My GP agreed to run some blood tests.

A month later, when I was in the throes of a bad flare-up of infection in my head, my GP phoned with the blood results. I did indeed have a ‘blip’ in my immune response which was considered worthy of further investigation. A letter of referral was sent to the local hospital requesting an appointment with the immunology team. I expected to wait months for this appointment within the public system but within a week, I’d been called into the hospital to undergo a rigorous assessment of my immune system. When I queried why I’d been seen so quickly, I was told that I was a “fascinating” case and as a result, I’d been bumped up the waiting list. My hopes were raised.

Three hours and many blood tests later, I left the hospital having been thoroughly grilled on every aspect of my medical history… and also examined from top to toe. I couldn’t believe the thoroughness of the assessment. Following the blood tests, I was injected with the pneumococcal vaccine, started on a long-term prophylactic dose of antibiotic, two new inhalers (one oral, one nasal) were added to my prescription and I was given a date to return for pulmonary function tests.

When I returned to the hospital three months later for all the test results, I had high hopes of receiving news of a breakthrough. The appointment turned out to be a complete anticlimax. I didn’t get to see the consultant as had been promised. Instead, I was told by a seemingly bored, doctor that the blood tests confirmed a minor defect in my immune system… no IgM factor… and that there’s “no treatment available for it”. The tests had also confirmed my allergic status, asthma etc. and I was simply told “Keep taking the pills and come back in a year’s time for review.” Hopes dashed again.

The good news is… since undergoing the original immune assessment, I’ve only had one acute infection in my head since last June and I’ve also had fewer headaches. This is an all-time record! I’m convinced this progress is due to the continuous prophylactic dose of antibiotic. In the past, I’ve been on antibiotics for months at a time but never, for a year at a time. It’s seems such a simple solution and apparently, can be continued indefinitely. The question is… why didn’t someone think of this before?

So… progress of sorts. My nasal septum has still not healed and I’m due a check-up with the surgeon next month.

Tune in next week and I’ll tell you about my tooth extraction which… wait for it… failed to heal!

Blowing Bubbles

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!

At Long Last

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.

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!

I Know Him So Well

I traipsed into the hospital again this week as the recurring symptoms in my head had begun to wear me down. I was in need of reassurance and I knew that the surgeon would put me straight. After years of dealing with the infections in my head, we’ve got to know and respect each other well.

On entering the examination room, the surgeon asked if I would mind having two young medical students present while he examined my head. I was perfectly happy to agree to this, in fact I positively welcomed it. I knew from previous experience that it was likely to add an interesting dimension to the consultation.

While the surgeon was preparing the endoscope, I chatted to the two female students to put them at ease. I asked them what they thought of the new HPAT (Health Professionals Admission Test)* which was introduced last year as part of the entry exam for medicine. They reckoned the test had evened out the ratio of male/female students that succeeded in getting into medical school last year. In recent years, the percentage of students studying medicine has been 70/30 in favour of females. This would suggest that an aptitude test suits the male psyche better, while swotting for exams is more of a female forte. The surgeon then piped up and declared that if he or any of his colleagues were asked to sit the HPAT today, he reckoned they’d all fail. We all laughed at this concept.

The room went silent while the surgeon delved deep inside my head with the endoscope. Shortly afterwards, he emerged with a large lump of something horrible and announced triumphantly “that’s some bogey”. I’m beyond mortification at this stage so I just grinned over at the two girls who looked horrified on my behalf. The students looked on in silence as the surgeon and I continued to banter about the state of my head. The many years of treatment have left us both comfortable enough in each other’s presence, to be able to employ banter as a coping mechanism. The girls were not aware of my previous medical/surgical history and therefore had no idea that I knew this surgeon so well. The look of disbelief on their faces, was priceless.

When the surgeon had finished his task, he took photographs of the inside of my head and used these to reassure me about the cause of my present symptoms. It appears that the donor site used for the recent graft surgery, is slow to heal and is causing irritation to surrounding structures. My post-operative check-up in Nottingham next week, should elicit more information on this. The good news is that the graft continues to heal well.

Before I exited the room, the surgeon gave me a big grin as he explained to the students that I was no ordinary patient. “This is a very rare case”, they were told.  I grinned back and left him to explain.

*The HPAT allows all Leaving Cert students with over 480 points to apply for medicine. Entry is decided by a combination of CAO points and HPAT results, which examines spacial and logical reasoning, problem-solving and interpersonal skills.

With thanks to the Amateur Transplants for the parody.

In case you didn’t know… the ABC used in the above video, is a well-known mnemonic for AIRWAY, BREATHING and CIRCULATION. The ABC protocol exists to remind rescuers delivering emergency treatment to an unconscious or unresponsive patient, of the importance of airway, breathing, and circulation to the maintenance of a patient’s life.

KOKO

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.

Cometh the Hour

It was a close call. When the surgeon looked inside my head, he said he groaned. My airway was inflamed leaving precious little room to manoevre surgical instruments. On waking from the anaesthetic, the surgeon remarked “You sure like to give me a challenge!”

I’d arrived on the operating table by the skin of my teeth. For the previous 10 days, I’d been battling a nasty upper respiratory infection and right up to the last minute, I didn’t know if I’d be well enough to make the trip to Nottingham. An antibiotic luckily cleared my head and chest in time but the evidence that a battle had taken place, was left behind.

The intricate endoscopic surgery took over 2 hours to complete. The inflamed area of bone in my forehead was first drilled out to prepare a clean surface for the reconstruction. The surgeon then fashioned a large flap of mucosa taken from the nasal septum and used this to line the exposed bone of the anterior frontal wall. The graft is held in place by a disposable dressing until it heals and my airway has been internally splinted to prevent the formation of adhesions. Photographs were taken throughout the procedure for the benefit of my surgeon in Ireland. He is due to remove the stitches and splints in another 10 days and I’ll return to Nottingham for the verdict in two month’s time. I’ve been warned that the donor site in my head will be sorer than the host site but so far, so good. Exhaustion is the main symptom.

I was discharged from the hospital the following day and returned to the hotel with my husband. On hearing of our circumstances, the hotel staff had kindly facilitated my husband by allowing him to keep his room until it was time for us to leave for the evening flight home. I was delighted to be able to watch the rugby match in peace and quiet. As the final whistle blew, we left Nottingham city centre for the airport. I came home victorious in more ways than one.

Cometh the hour, cometh the woman!

(Picture taken on mobile phone – Nottingham Main Square).

Good News?

The jury is still out. I’ve been back to Nottingham to receive the verdict on my head. The day went pretty much as expected and depending on how you look at it, the news overall was good.

Monday was a long and tiring day, not helped by the biting wind and frequent showers of sleet in Nottingham. I’d an early start to catch the morning flight and arrived into the city centre in time for a late breakfast. Once revived, I headed to the local library to avail of the internet facilities and the warmth. Shopping is not an attractive option when your mind is otherwise focussed. I made my way to the hospital with plenty of time to spare and the surgeon saw me exactly on time for my appointment. We were off to a good start.

Having looked at my recent CT scan on computer, the doc was pleased to find that there hasn’t been any significant deterioration since the last scan. He examined my head endoscopically and using local anaesthetic, did some ‘house’ work on the previous operation site near the base of my brain. Using an endoscopic camera, he was able to give me a guided tour of the inside of my head by projecting the images onto a screen. It was amazing to finally get to see the small area of bone that has caused so much trouble in recent months.

In layman’s terms, the surface of this inflamed bone looked like white paint which has blistered in the sunshine while the rest of my internal anatomy, was pink and glistening. At this point, the surgeon informed me that the exposed bone will require further intricate surgery. He proposes to line the bone with a mucosal ‘flap’ graft which will provide the blood supply needed to promote healing. My airway will be internally splinted for about 10 days to prevent adhesions. Last summer’s radical surgery in fact included a similar graft repair to another area of exposed bone and the surgeon showed me how well this area has now healed. This was exactly the sort of the reassurance I needed. I left the hospital armed with a bevy of syringes and plastic tubes together with strict instructions to flush out my head daily using a sterile solution. Having navigated through airport security without being arrested for the strange contents of my bag, I arrived home totally exhausted. I’m still exhausted two days later.

I now know exactly what needs to be done and how it will be done. While this is good news, I’m still struggling with the reality of having to face going back to Nottingham for further surgery. The operation will be a minor one compared to previous surgeries but even so, I still find myself deliberating over it. I’ve been instructed to ring the surgeon within the next few days to discuss a date for surgery.

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.

Tie a Yellow Ribbon

I’m coming home. I’ve done my time.

Now I’ve got to know what is and isn’t mine.

It’s been three long years six long days in the UK. I’m ready for home.

I was discharged from the hospital on Saturday and have spent the last few days resting-up at a friend’s house near Birmingham, in preparation for the flight home. It’s been bliss to be able to recuperate in peace and quiet without the constant disruptions of hospital life. My post-operative path has been more rocky than anticipated but the surgeon is now happy for me to fly this evening. Things have already begun to improve following a change in medication so I’m confident all will be well. I return to Notts next Monday for follow-up.

Thanks for all comments and well wishes. I will catch-up with you all once things settle down a bit. So much has happened, its gonna be hard to know where to start. See you on the other side of the pond.