Six Feet Tall

November 17, 2011

I’m heading over to Nottingham today to have the nasal prosthesis fitted under general anaesthetic tomorrow.

I just hope I don’t end up looking like this…

Apologies for the lack of communication. Life is far from easy at the moment but I’m determined to stay standing… roughly six feet tall!

 


Having a nose job

August 8, 2011

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!


Let Patients Help

August 1, 2011

Are you an e-Patient? The most under-utilised resource in all of healthcare, is the patient. Patients need to be allowed to take part in their own healthcare. e-Patients are equipped, engaged empowered and enabled.

Some of you may be familiar with TED.com. TED is a non-profit organisation devoted to “ideas worth spreading”. It started as a conference bringing together people from the worlds of technology, entertainment and design. As well as running conferences, it delivers riveting talks by remarkable people, free to the world. These talks are well worth dipping into for inspiration and thought-provoking perspectives.

Here’s one I really enjoyed… Meet e-Patient Dave.

Thanks to Ann @ Transplant News for alerting me to the above talk.

Tune in next week for an update on e-Patient Steph! 😉


Take the MRSA Test

June 8, 2011

How much do you know about MRSA?

I challenge you to take the quiz here and test your knowledge of this resistant bacteria.

The quiz only takes a few minutes to complete.

I’d love to hear how you got on.

Source: MedicineNet.com


I’m fine, how are you?

April 10, 2011

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)


Gone Surfing

April 8, 2011

I was busily rinsing out my hair sinuses with shampoo this morning (please don’t ask why) when I heard the doorbell ring. Quickly wiping away any telltale bubbles from my face, I rushed downstairs to answer the door only to be greeted by our cheery postman who was waiting patiently to thrust a parcel into my hands. To my surprise and delight, the parcel was addressed to me! Hoping there might be some chocolates inside, I ripped it open only to find that it contained a box of this. Darn! 😦

I’ve no idea who sent me this present* as there was no enclosed note – the only clue is a Royal Mail sticker?

So… if you are the mystery benefactor and you happen to read this…. damn you! THANK YOU VERY MUCH! I’m off to practice surfing now.

* SinuSurf surfactant is an easy to use water soluble product that facilitates deeper cleansing and helps remove excess mucus and dried crusts out of nasal passages when mixed with a buffered isotonic saline solution.


Blowing Bubbles

March 23, 2011

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!