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!
11 Comments | EDS, health, Steph's Story, surgery | Tagged: nasal septal button, perforated nasal septum, septal prosthesis | Permalink
Posted by Steph
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!
18 Comments | antibiotics, EDS, health, MRSA, osteomyelitis, Steph's Story, surgeons | Tagged: bacterial biofilm formation | Permalink
Posted by Steph
May 26, 2010
Well… I finally got to Nottingham to see the surgeon having had my two previous attempts foiled by that damn volcano. As a result of the enforced delay, I had emailed the surgeon in advance, to alert him to the fact that my head still hadn’t healed properly. While his reply was reassuring, I wasn’t convinced that all was well. I’m sorry to have to report that my concern was justified.
When the surgeon looked inside my head, he groaned. He asked me to remind him of how many weeks I was now post-op and his face fell at my reply of three months. “I’ve never, ever seen this happen before”, the surgeon said. Now it was my turn to groan. Those words have become increasingly familiar over the years as things have gone wrong with my health. Delayed healing has now been added to that list of peculiarities.
It wasn’t all bad news though as the graft has actually healed well. However, the surgeon echoed the words of my surgeon at home when he said that “in solving one problem, another has been created”. In other words, the small area of bone which was chronically infected, has healed perfectly thanks to the graft but the donor site for the graft, is now refusing to heal. That’s when I heard the MRSA word mentioned again. A swab was taken for analysis. Personally, I think it’s more likely that the problem is linked to my connective tissue disorder, Ehlers-Danlos syndrome (EDS), but who am I to know?
When the surgeon first heard of my problem with delayed healing (via my email), he was of the opinion that repeat internal splinting of my airway might be required. However, having seen the situation for himself, he changed his mind and decided that one side of my nose should be temporarily sealed off. Apparently, exposure to air (breathing) can dry out the airway to such an extent that it delays the healing process following certain types of surgery. With this in mind, I was subsequently dispatched to another department of the hospital to begin the next stage of treatment.
The ‘expert’ in making facial moulds greeted me on arrival in the maxillofacial department. This department deals with diseases, injuries and deformities of the oral and maxillofacial region and my visit provided a fascinating glimpse into the world of facial reconstruction using prosthetics. I was there to have a simple mould made of the inside of my nose so that a prosthesis could be made to seal off one side of the airway. However, the ‘bomb crater’ left in my forehead following previous surgery, was also of interest to my new friend. I was shown the photographs which were taken of my face at the hospital last year, to record the cosmetic disfigurement. During my earlier consultation with the surgeon, I’d already ruled out going down the road of re-constructive surgery as it’s fraught with possible complications*. I’d no hesitation in telling the maxillofacial expert “thanks but, no thanks!”
My new ‘nose’ will arrive in the post in due course and my surgeon in Ireland will oversee the healing process. I’ve been warned that the prosthetic ‘bung’ will be visible and will give my voice a nasal intonation but it’s only a temporary arrangement and I’ll happily settle for it as long as I’m spared another battle with MRSA. Fingers crossed please that the swab result turns out negative!
* I’m pretty sure this blogging friend would agree with my decision.
19 Comments | connective tissue, EDS, health, MRSA, Steph's Story, surgery | Tagged: cosmetic disfigurement, maxillofacial, re-constructive surgery | Permalink
Posted by Steph
October 30, 2009
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? 🙄
13 Comments | chronic frontal sinus infection, connective tissue, EDS, health, hospital, operation, osteomyelitis, riedel's procedure, Steph's Story | Permalink
Posted by Steph
May 12, 2009
I had a check-up with the gastroenterologist this morning to get the results of the tests I had a couple of weeks ago. I’d hardly sat down in his consulting room when he announced “I’ve got the answer to your problem”. I could have hugged him there and then. You see, after two months of struggling with constant diarrhoea and pain, I’d reached a stage where I didn’t care what diagnosis was made as long as treatment was available. As it turns out, I’m not just a fine old bird, I’m a rare one as well!
Ever heard of microscopic colitis? I certainly hadn’t until today. I know about ulcerative colitis and Crohn’s and coeliac disease but no, Steph had to go and get something much rarer. The biopsies and blood tests have confirmed that I’ve developed an inflammatory bowel condition known as microscopic colitis (MC). The cause of MC is currently unknown. One theory is that the use of non-steroidal-anti-inflammatory drugs (NSAIDs) may contribute to the development of the condition. Another theory is that MC is caused by an autoimmune response where the body’s immune system attacks other tissues in the body. This is similar to the autoimmune disorders that cause chronic ulcerative colitis and Crohn’s disease. It’s also thought that bacteria or viruses may play a role in the development of MC but the exact relationship is unknown. As I’ve been on NSAIDs for years, have a long history of problems with autoimmunity and appear to be riddled with bacteria, it seems I was a sitting duck to develop this condition. My EDS is also thought likely to be a predisposing factor.
The symptoms of microscopic colitis are chronic, watery diarrhoea, accompanied by cramps and abdominal pain. Other symptoms include fever, joint pain, and fatigue. I’ve had them all unfortunately. The condition has been known to resolve spontaneously after several years but most patients have recurrent symptoms. Treatment varies depending on the severity of the symptoms. Anti-diarrhoeal and anti-spasmodic agents are the first line of treatment but as they’ve failed to work for me so far, I’ve been started on the same anti-inflammatory drug used to treat ulcerative colitis and Crohn’s. If this treatment fails, I will move onto corticosteroids but hopefully this won’t be necessary. Steroids and Steph do not go well together.
Living with any form of colitis is never easy but today at least, has felt positive. I’m very fortunate to have been thoroughly investigated and diagnosed in a matter of weeks. Some people have to wait years for a diagnosis. The tests might have drawn a blank leaving limited treatment options or worse, the diagnosis could have been very much more serious. Next week, I head to the UK for investigations of a very different kind but that’s a story for another day. In the meantime, thanks to an upstart airline, I’m off in a few days to dip my toes in the Med. I might not return.
21 Comments | EDS, health, Steph's Story | Tagged: autoimmune response, bacteria, coeliac disease, Crohn's disease, gastroenterologist, microscopic colitis, NSAIDs, ulcerative colitis | Permalink
Posted by Steph
September 12, 2008
I had the dubious pleasure of donning a theatre gown again yesterday but thankfully, only briefly on this occasion. Some weeks ago, I attended my GP with intermittent discomfort in the centre of my chest. The pain had gradually worsened over a period of days and as there is a strong history of hiatus hernia in the family and I was otherwise feeling well, I felt sure that a hernia must be to blame. Following examination, my doctor agreed that a hernia was a possible explanation for the symptoms but refused to prescribe treatment until first ruling out other potential causes. Despite my protests about not wanting any more medical intervention, he put me on the waiting list to have a gastroscopy performed at our local public hospital.
These days, GP surgeries are able to bypass the consultant system to fast-track patients for endoscopic investigation. In the past, a patient had to be referred to a consultant before a decision could be made to proceed with further investigation. Nowadays, family doctors have set guidelines to follow and if the patient fits the particular criteria, they are referred via a direct access scheme for endoscopic examination. This speeds up the investigation process and eliminates unnecessary specialist consultations. The endoscopy unit is consultant-led, it’s highly staffed so that it runs efficiently and the waiting list is the same for everyone regardless of health insurance or medical card status.
I only had to wait three weeks for the gastroscopy appointment and attended the hospital yesterday having fasted overnight as instructed. I’ve undergone this procedure before so I knew exactly what to expect. There was no delay, I was assessed immediately by a nurse and asked to change into a theatre gown. Following a short wait, I was escorted to the examination room to meet with the doctor and his assistant. I was given the option to have light sedation for the procedure and I didn’t hesitate in accepting. I’ve seen enough of hospital procedures to know I’d rather not see any more. I lay up on an examination trolley and following the insertion of a cannula into the back of my hand to administer the sedative, I was asked to lie over onto one side. A plastic mouth guard was placed between my teeth to protect them and stop me biting the endoscope. The next thing I knew was when I awoke in the recovery room feeling relaxed and sleepy following the sedation. An hour later, I was ready for home having received the diagnosis. I was informed that I have a significant peptic (gastric) ulcer in my stomach and shown the pretty pictures taken during the procedure. This news came as a surprise as I was expecting to hear I had a hernia but No, there was no evidence of a hernia seen.
The leading cause of a gastric ulcer is currently believed to be infection of the stomach by a bacteria called “Helicobacter pyloridus” (H. pylori). Another major cause of ulcers is the chronic use of anti-inflammatory medications, commonly referred to as NSAIDs (nonsteroidal anti-inflammatory drugs). I had two biopsies taken yesterday which will show if H. pylori is the cause of the problem and in the meantime, I’ve started on a six-week course of tablets to reduce acid production and aid healing of the ulcer – yet more pills to add to the daily pile! If H. pylori infection is found, I will be commenced on two different antibiotics to eliminate the bacteria. It’s quite possible that NSAIDs are to blame in my case as I’ve been on various types for years (though always in conjunction with a gastro-resistant medication), to control the joint pain I experience from my connective tissue disorder (EDS). Whatever the cause, I have to return in two months time to have a repeat gastroscopy performed to assess the situation.
I’m really in favour of this direct access scheme for out-patient care as it’s an equitable system which is efficiently run. I left the hospital yesterday feeling lucky to have received such good attention. The only difficult thing to swallow now is the fact that when I next return to see my GP, I have to admit that he was right and I was wrong.
15 Comments | antibiotics, biopsy, connective tissue, EDS, health, hospital, hospital trolley, medical, patient, Steph's Story | Tagged: gastroscopy, H. pylori infection, hiatus hernia, NSAIDs, peptic ulcer, sedation | Permalink
Posted by Steph
August 12, 2008
Have you ever been a medical mystery? I’m talking about those patients whose symptoms fail to fall neatly into the diagnostic criteria for a particular illness. You go to your doctor feeling really ill, your doctor listens carefully to your woes and recommends a battery of tests to help with the diagnosis. Several days later, your doctor rings to tell you that all your tests have come back normal. You’re still feeling lousy and you’re meant to be pleased with this news?
I’ve found an interesting new blog written by A Country Doctor (based in the USA) which provides a refreshing look at illness. Today he discusses how the labelling of a patient can affect a patient’s response to an illness.
“Labels are good if they help you understand what’s going on, and bad if they lock you into some sort of fixed category where you either don’t believe you can get out or, perhaps worse, start to feel comfortable and liberated from your own responsibility for your life and health.”
Receiving a diagnosis is never any fun but sometimes it’s almost preferable to not knowing what’s wrong. There’s little to recommend about being a medical mystery. The patient is suffering from very real symptoms yet nobody seems to be able to explain why and it’s not unusual for them to get to a stage where they begin to doubt their own sanity. Doctors these days have a large array of tests available to them to assist with a diagnosis. It seems that the days are gone when doctors rely on their own diagnostic skills to make a judgement. Today, tests are often ordered before an opinion is given. If the tests fail to show any abnormality, doctors generally take great pride in reassuring the patient that all is normal. However, from the patient’s perspective all is not normal if they continue to suffer from the original symptoms and are no closer to receiving help with the problem.
As the Country Doctor says “Somehow in the last generation of doctors, we seem to have lost our ability, or perhaps our perceived right, to give patients advice about their health; only if we diagnose them with a disease, or pre-disease, do we have something to tell them.”
Having been a medical puzzle myself for many years, I can assure you that it was a huge relief to finally receive a diagnosis. The missing piece of the jigsaw was found and suddenly my medical history made sense. My ‘label’ has not caused me to become fixated with illness, rather it has helped me to understand my condition more fully and to take responsibility for my own health. When I consult a medical doctor, it’s because I want to find out what it is wrong and receive advice on how best to deal with the symptoms. I think that doctors would do well to remember that not all patients have symptoms that fit the label and very often, these are the patients who most need their help.
5 Comments | diagnosis, doctors, EDS, health, medical, patient, Steph's Story | Tagged: a country doctor, diagnostic label, medical puzzle | Permalink
Posted by Steph
July 28, 2008
My good friend Bendy Girl, who is also an EDS‘er, asked me to bring back some photos of my holiday. Thankfully, she didn’t specify that I had to take the pictures myself. I didn’t. All credit is due to my husband, Jaimie, who has me spoilt with his beautiful, professional photographs. We have just spent three fantastic days together in Connemara in the West of Ireland. I hope you enjoy these shots.
This was the view from my ‘hotel’ last night.
And the lovely view from my bedroom window.
My hotel for the night, with broadband connection.
A salmon jumping on the river at Ballynahinch Castle.
Galway hooker in Roundstone Bay.
Herbaceous border in restored Victorian gardens at Kylemore Abbey.
Cut turf drying out on Roundstone Bog.
Sea Holly growing on a Connemara beach.
We’ve had some very good times over the years camping in this location, especially when our children were young. On this occasion however, we only spent the last night of our holiday in a tent. The rest of the time we ‘cheated’ by staying in the luxury of the Ardagh Hotel, just outside Clifden on the Ballyconneely Road. This is a place we’ve also come to love in recent years as our bones grow older and wearier. Our two night stay this weekend included a 5-course gourmet dinner plus two superb breakfasts and the price was €149 per person sharing. To put this into perspective, it costs me at least €150 each time I have to see a specialist. I’ll leave you to guess which one leaves me feeling better.
I hope these pictures are enough to make Bendy Girl happy too!
12 Comments | consultants, EDS, health | Tagged: Connemara, Find Me A Tent | Permalink
Posted by Steph
June 24, 2008
Yes, it’s that time of year again. For the next two weeks, I shall be glued to the television screen at every available opportunity, watching the Ladies Singles draw unfold. This year, my money’s on the Serbian player, Ana Ivanovic to win the title. She’s the top seed and the world No. 1 player having just won her first Grand Slam at the French Open, so she’s got it all going for her.
I’ve been hooked on Ladies tennis for as long as I can remember. I used to love playing the game myself but my funny joints (EDS) put a stop to play so these days, I merely enjoy it as a spectator sport. Last year, I made my first ever trip to Wimbledon to see the real thing. I booked the flights in advance of my operation in March so that I’d have the trip to look forward to after the surgery. It was a fantastic experience but now that I’ve done it, I’m happy to watch the Championships from the comfort of my own home. In all of the many years I’ve had surgery, I’ve never managed to time it right so that I can really put my feet up to enjoy the tennis. My family always groan when Wimbledon fortnight arrives as meals have to wait their turn. Even blogging is likely to suffer so don’t say you weren’t warned!
I’ve just dropped my daughter off to the airport for an early morning flight to the sun. She’s knows better than to stick around when Wimbledon is on. It’s every man for himself for the next two weeks. Perhaps my marriage vows should have read “For better or for worse, in sickness and in health, and for Wimbledon.”
8 Comments | EDS, general, surgery, Uncategorized | Tagged: joints, Wimbledon | Permalink
Posted by Steph
May 28, 2008
On reading Grannymar’s post One Armed Bandit last week, I was reminded of a time in my own life when I fought a one-armed battle. I have an inherited connective tissue disorder known as Ehlers-Danlos syndrome (EDS) which leaves me with a tendency to stumble and fall a lot. Being right-handed, my right shoulder has taken many blows over the years but it’s still going strong.
When I was in college many moons ago, I slipped and fell dislocating my right shoulder in the process. Luckily it went back into it’s socket spontaneously but the damage had been done. The anterior ligaments of the joint were torn and my arm needed immobilisation in a sling for many weeks to facilitate repair. From that day onwards, my right shoulder was unstable and certain movements were extremely painful. The joint would easily sub-locate and on numerous occasions this happened when swimming, leaving me stranded in pain with one arm stuck up in the air!
When my first child was a toddler, I stumbled one day while carrying him and again badly tore the shoulder ligaments. As my arms were full, I could not reach out to save my fall and landed on my right elbow sending the full force of the blow through my shoulder joint. I was seen by an orthopaedic surgeon who recommended an operation to stabilise the joint. I underwent open surgery (it’s done by micro-surgery these days) to have the ligaments of the shoulder joint re-structured to form a support network and they were also shortened to limit movement in the joint. A large metal screw was used to hold the re-attached ligaments in their new position. When I awoke from the anaesthetic, my whole right arm was tightly strapped across my chest and it was a struggle even to breathe. I was to spend the next six weeks in this tight strapping with only one arm usable. It was a difficult time as I had a small toddler to look after but we soon devised ways and means to get around most problems. I became a dab left-hander at doing most tasks though it took a while to get used to getting dressed one-handed and trips to the toilet took rather longer than usual. You try pulling up and down your clothes with one hand and you’ll realise what I’m talking about!
Once the ligaments had healed, all the strapping was removed and I started on a long programme of physiotherapy to recover movement in the joint. This was a very painful process and as time went on, the pain got worse instead of better so I was sent back to the surgeon for review. He was puzzled by the pain and recommended further rest for the arm, in a sling. A few weeks later I noticed a protruding lump at the top of my right arm which was very painful to touch. The metal screw used to fixate the ligaments had wriggled it’s way loose and x-rays showed that at least one inch of it was protruding from the bone. Back I went into hospital for more surgery to remove the piece of offending metal which I still have to this day, as a souvenir. Yet more weeks ensued with my arm in a sling before I was allowed to start physiotherapy again. You have no idea what pleasure it was to finally eat a meal using a knife to cut my food.
One of the aims of the surgery was to restrict movement of my arm in certain directions, to reduce the likelihood of further dislocation. No matter how hard I try, I cannot rotate my arm outwards and have learnt instead to rotate my body to reach objects on my right-hand side. I used to love playing tennis but my restricted shoulder movements made this impossible. Not to be defeated, I went back to tennis lessons starting at beginner level and learnt to play the game left-handed. Anything is possible when you’re determined to succeed. This all came to abrupt end however with another stumble which resulted in torn ankle ligaments but that’s another story. These days my right shoulder joint makes lots of strange creaking noises but it remains pain-free. I only wish the rest of my joints were as good.
7 Comments | connective tissue, EDS, health, hospital, medical, physiotherapy, Steph's Story, surgeons, surgery, Uncategorized | Tagged: anaesthetic, dislocation, ligaments, shoulder joint, x-ray | Permalink
Posted by Steph