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!

Yellowland

The colour yellow tends to have negative connotations. Traditionally, it’s been associated with cowardice and deceit. In hospitals, the colour yellow is used to indicate an infection control risk. Last week, Steph’s hospital chart was awarded another bright yellow sticker.

Yes, you guessed right… I’m infected with MRSA again! 

I’ve been fighting a constant battle with recurrent infections in my head since Christmas. Antibiotics gave temporary relief but the infection repeatedly recurred, accompanied by nasty headaches. Two weeks ago, I requested a hospital appointment to get nasal swabs taken and analysed. Shortly afterwards, I was informed that I was indeed MRSA positive. The prosthetic implant which was inserted into my nasal septum last November, was thought to be the source of the infection.

Pacemakers, artificial heart valves, catheters and many other surgical implants commonly become contaminated with bacterial biofilms. The longer a contaminated device remains in the body, the greater the risk of antimicrobial resistance developing. As my infection had been confirmed MRSA positive, I was advised to have the implant removed as soon as possible. Following consultation with my surgeon in Notts, the decision was taken to remove the prosthetic implant.

Sign on door to Steph’s room at the hospital

Last Tuesday, I was admitted to hospital as a day case and nursed in isolation while the prosthetic implant was removed under sedation. This involved another trip to the operating theatre but on this occasion, I remained conscious throughout. When you are MRSA positive, you’re last in the line for everything so as to minimise the risk of cross infection.

When the call finally came, I was whisked directly into an operating theatre, transferred onto the operating table and attached to the various monitors before being given intravenous sedation. I expected to be knocked out by the sedation but far from it. I was able to continue a conversation with the surgeon and anaesthetist while the implant was being yanked from my head. It felt a bit like having a wisdom tooth removed except that it was from my nose rather than my jaw. I was then wheeled straight back to my isolation room to sleep off the effects of the sedation before being discharged home.

It was hoped that the prosthetic implant would remain in place for at least two years to maintain healing of my septum. Instead, less than three months later, the implant now sits in a specimen container while I await further assessment. My head feels a great deal more comfortable now that the source of infection has been removed. What happens next, is anyone’s guess.

I may be labelled yellow… but I ain’t no coward. MRSA watch out!

Having a nose job

No… I’m not a celebrity. There’ll be no before and after pics although somewhere in the annals of medical literature, Steph’s skull will be recorded in 3D. Many people choose to undergo “a nose job” to enhance their looks. I’m about to have a nose job with a difference! 

The nasal septum is the vertical wall in the middle of the nose that separates the right and left nasal cavities. This wall extends back to the end of the nasal cavity and is made up of cartilage at the front and thin bone at the back. The main functions of the nasal septum are structural support for the nose and regulation of air flow in the nasal passages.

When I had the graft surgery in Nottingham last year, one side of my nasal septum was harvested and used to cover an area of bone within my skull which had been left exposed following previous surgery. The graft tissue healed well in it’s new location but unfortunately, the donor site (my septum) has failed to heal properly and continues to be symptomatic. This failure to heal is rarely seen and is thought to be due to the fact that I’ve an underlying connective tissue disorder, called Ehlers-Danlos syndrome (EDS). My surgeon in Notts has been scratching his head to find a solution to the problem.

Nasal splinting has already been tried and failed. Topical antibiotic ointment has failed. Daily hypertonic sinus rinse-outs (with the addition of baby shampoo) have failed. We even tried occluding the air flow on that side of my nose, using a prosthetic ‘bung’ but nothing has succeeded in getting my septum to heal. I travelled over to Notts recently to discuss what options are left… if any.

At the consultation, it was quickly spelt out to me that we are now in ground-breaking territory in terms of finding a solution. The first surgical option proposed by my surgeon, sounded too invasive for my liking so I asked him to think again. We discussed various other options all of which were ruled out because of my failure to heal. It was then that my surgeon had the brainwave to adapt another tried and tested surgical procedure, to suit my needs.

There is a condition known as a perforated nasal septum. This is basically a hole in the nasal septum which can be caused by nasal surgery, cautery, physical injury or cocaine use. Now, I’m not a cocaine snorter but I do have a large perforation (surgical opening) in the bony posterior area of my septum as a result of previous surgery to improve the drainage from my frontal sinuses. Sometimes, a nasal septal button is used to close an anterior septal perforation. While my perforation is asymptomatic, my surgeon has come up with the novel idea of adapting the button procedure to suit my unique anatomy and thereby solve the problem with my anterior septum.

He’s going to have a nasal septal prosthesis custom-made to fit through the surgical opening at the top of my septum and which will completely encase both sides of my septum with silicone. A 3D model of my skull will first be made from recent scans so that the prosthesis can be made-to-measure in advance of surgery. All that’s required of me, is to turn up and have the thing fitted under general anaesthetic.

I told you I was having a nose job!

I’m fine, how are you?

Tonight is census night in Ireland when an estimated 2 million census forms – one for every household in the country – will be filled in. Two new questions have been added to this year’s form from the previous census carried out in 2006. One of the new questions deals with how healthy you feel you are. Most of the questions are multiple choice and in the section on health, you are asked “How is your health in general?” with an option of five boxes to tick, ranging from… very good to very bad. This question poses a dilemma for me…

I was out to dinner with a group of friends last night and during the evening, the topic of the census form came up. When I mentioned that we would all be faced with a new question about our health, one of my closest friends leaned over and said, “Steph, I hope you tell them how bad your health really is”. I was quite taken aback by this remark as despite living with a chronic illness and being an ‘expert by experience’ patient, I’ve never really thought of myself as having bad health. I’ve always regarded episodes of illness/injury simply as obstacles to be overcome so that ‘normal’ life can be resumed. Admittedly, I’ve had rather a lot of so-called “episodes” but even so, it’s still come as a bit of a shock to realize that others may regard my health as being bad.

Over the years, whenever someone has asked me how I am, I much prefer to reply that “I’m fine” rather than have to watch their eyes glaze over with boredom while I detail my latest woe. Those who want to hear more, will usually dig a bit deeper for it and then I’m perfectly happy to oblige. After last night’s conversation, I’m now wondering… am I right to be so positive about my health or am I actually in denial?

I came across this rhyme recently and loved it so much, I want to share it with you today…

There’s nothing the matter with me,
I’m just as healthy as can be.
I have arthritis in both knees,
And when I talk, I talk with a wheeze.
My pulse is weak, my blood is thin,
But I’m awfully well for the shape I’m in.

All my teeth have had to come out,
And my diet I hate to think about.
I’m overweight and I can’t get thin,
But I’m awfully well for the shape I’m in.

Sleep is denied me night after night,
But every morning I find I’m all right.
My memory’s failing, my head’s in a spin,
But I’m awfully well for the shape I’m in.

Old age is golden I’ve heard it said,
But sometimes I wonder, as I go to bed.
With my ears in a drawer, my teeth in a cup,
And my glasses on a shelf, until I get up.
And when sleep dims my eyes, I say to myself,
Is there anything else I should lay on the shelf?

The reason I know my youth has been spent,
Is my ‘get-up and go’ has got-up and went!
But really I don’t mind when I think with a grin,
Of all the grand places my get-up has been.

I get up each morning and dust off my wits,
Pick up the paper and read the ‘obits’.
If my name is missing, I know I’m not dead,
So I eat a good breakfast and go back to bed.

The moral of this as the tale unfolds,
Is that for you and me, who are growing old.
It is better to say “I’m fine” with a grin,
Than to let people know the shape we are in.

(Source unknown)

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!

Checking-In

My bum hadn’t even touched the seat when I heard my name being called out. It seems not everyone was prepared to brave the elements today as there was no queue and I was in and out of the hospital in double quick time. If only the health service worked like this all the time!

I struggled through the slush and biting easterly winds this morning to get to my hospital appointment. Having examined my head endoscopically, my surgeon was pleased to report his findings. While the three-times-daily sinus wash-outs are not a lot of fun, they seem to be doing the trick. There is no evidence of infection in my sinuses at the moment.

We then discussed the recent swab result and it’s consequences for me. As I’m clinically well right now, I do not require antibiotic treatment despite my positive MRSA status. However, should I develop an acute infection, I’ve been instructed to report to A&E as I’m now resistant to so many antibiotics, I can only be treated with hospital-prescribed antibiotics.

I left the hospital with a prescription for an antibiotic nasal ointment which is an effective topical treatment for methicillin-resistant Staphyloccus aureus (MRSA) and also instructions to continue doing the wash-outs.

I’m now officially on holiday from the hospital until after Christmas. Fingers crossed please, this holiday doesn’t get cut short.

Reasons to be cheerful

I don’t need to be admitted to hospital…Having consulted my GP about the latest infection in my head, he advised that I should be admitted to hospital for IV treatment. With my extensive resistance to antibiotics, treatment is limited to antibiotics which can only be given under hospital supervision. With a heavy heart, I presented myself for admission through A&E yesterday morning. After a long day of tests and assessment, the doctors concluded that I did not need to be admitted to hospital.

The infection is not systemic… While the recent swab analysis showed resistance to the antibiotic which saved my bacon last year, as well as resistance to methicillin (MRSA), yesterday’s tests confirmed that I am not systemically unwell with the present infection and therefore there is no need for intensive antibiotic treatment.

I was assessed by a new doctor… My own consultant was unavailable and so my care was overseen by his senior registrar whom I’d not met before. This worked to my benefit as it meant that my head was fully assessed from a new standpoint. Following a thorough endoscopic examination (the surgically altered internal anatomy of my head earned some interesting comments as he’d not seen anything like it before), I was sent for a CT scan.

The scan ruled out any serious complications… Reassured by the scan result, the doctors decided to opt for conservative treatment. I’ve been commenced on a rigorous regime of daily sinus wash-outs with a hypertonic saline solution. It’s not pleasant but if it manages to flush out the infection without recourse to systemic antibiotics, I’m happy.

It was heaven to come home to my own bed last night… When you are admitted to hospital with a positive MRSA status (colonization or infection), you have to be nursed in isolation to prevent cross-infection. In the hospital which I attend, all MRSA cases are put into a large isolation unit as they do not have en-suite single rooms. I had been dreading going back into this particular isolation unit.

I awoke this morning secure in the knowledge that the right decision has been reached… Conservative treatment is the right decision for now. It makes no sense to bombard my system with potent antibiotics just because I’ve tested positive for MRSA. While pus is discharging down the back of my throat, I’m not having severe headaches and I feel reasonably well. I’ve been instructed to return to the hospital if my symptoms worsen but otherwise I will be reviewed in a few weeks time. I told you I was in good hands!

I’m enormously grateful for the messages of support received over the last few days. It’s a real pleasure to bring you this good news.

No words

I’ll cut to the chase.

I’ve just had a personal call from my surgeon. It’s not good news.

The swab of pus taken last week from the sphenoid sinuses in the centre of my skull, is MRSA positive… here we go again!

No words can adequately describe how I feel right now.

Moving the goalposts

As we await the mother-of-all budgets to be announced in early December, I had hoped to be able to bring you a good news story this week but sadly, that’s not to be. Having enjoyed a summer free of infection in my head, it seems that the holiday is now well and truly over. I’m back on the treadmill of chronic infection once again.

Within 2 days of finishing the antibiotic after the recent acute infection, the congestion in my nasopharynx began to recur and a foul discharge seeped into the back of my throat. I requested an urgent appointment with my surgeon and was seen in his hospital clinic last week. Following a nasal endoscopic examination, the surgeon was able to identify the cause of my symptoms. While my forehead remains completely free of infection, pus could be seen dripping from my sphenoid sinuses. A swab was taken for analysis (culture and sensitivity) and an air of despondency descended on the room.

My surgeon confirmed what I already knew which is that the donor site (one side of nasal septum) used for the graft procedure last February, has still not fully healed. This failure to heal is more of a nuisance than a cause for concern. The infection in my sphenoid sinuses is a new development and is definitely a cause for concern as these sinuses are near the middle of the skull and are the most inaccessible of all the paranasal sinuses. They are also bordered by more vital structures than any other sinus.

While recovering from the surgery in Nottingham earlier this year, I developed severe headaches which were different to anything I’d experienced before. The pain was deep behind my right eye and radiated into the top of my skull and to behind my right ear. I was sent for a precautionary MRI brain scan which came back as normal so a ‘wait and see’ approach was adopted. The headaches gradually petered out over the summer months only to return with a vengeance when I developed the recent acute infection. In hindsight, I now realise that those headaches were classic symptoms of sphenoid sinusitis which subsequently developed into an acute bacterial infection.

The surgeon is now of the opinion that the radically altered internal anatomy of my head, has left my sphenoid sinuses more prone to infection. As the normal drainage channels in my head have been surgically removed, the ostium (opening) of the sphenoid sinuses is now exposed to a greater risk of bacterial infection. I could hardly believe what I was hearing.

I left the consultation armed with a prescription for further antibiotics for when needed. My normal ‘glass half-full’ self seems to have deserted me while I try to digest this bombshell news. All I can tell you is that if feels like the goalposts have just been moved again.

You win some, you…

The good news is… I’m on the mend.  The bad news is… I missed a weekend away with good friends. You can’t win ’em all, I suppose?

I was a bit “under the weather” last week. The back of my throat felt congested and my chest was a bit wheezy but as I’d no cough or cold, I concluded that the symptoms were probably viral in origin and not a cause for concern. I was wrong.

On Thursday evening, the congestion in my upper throat gradually turned sore… very sore… and I began to feel distinctly unwell. I tossed and turned all night in discomfort and while my throat had eased by the following morning, I’d developed severe pain in my head. I now had all the signs and symptoms of a bacterial infection which had homed in overnight on the vulnerable area of my head and I knew treatment was urgently required.

My GP took one look at me and sat down to write a letter to the admitting doctor at the hospital where I’ve been treated on many occasions for the severe infections in my head. However, luck was on my side on this occasion.

Being a Bank Holiday Friday, my GP agreed to let me go home to my own bed armed with oral antibiotics and a concoction of opioid pain relievers, with the promise that I would report to A&E if my condition worsened.

To be honest, the rest of the weekend is a bit of a blur… thanks to whatever was in that prescription. All I can tell you is that the pain in my head has now eased and the worst is over. While I missed out on the holiday with friends, I’m very happy to have avoided being admitted to hospital. Not only is the battle won, I feel like I’ve won my own lottery.