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
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
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
April 29, 2008
I’ve been tagged by Mousie. Now Mousie’s not someone you mess about with as one day you may end up on a trolley in her A&E Dept and that’s when you’ll be glad you did as she asked! Having said that, I’ve never been good at obeying rules so I’m going to do my own thing with this meme. If you want to see how it should have been done, pop on over to Mousethinks and, be impressed.
I’ve been asked to share some facts about myself, some random, some weird. As the theme of this blog is medical/health-related, I’m going to stick with my medical misadventures. Here goes!
I am a twin. My mother spent the final month of her pregnancy in a small nursing home, on strict bed rest. My twin brother arrived into this world 20 minutes ahead of me but he arrived so quickly, my mother never made it to the delivery room. They tried to transfer my mother immediately afterwards but I decided to arrive while she was on the stairs. She was rushed back to her bed just in time for my delivery. In all the excitement, my brother got forgotten and was later rescued from under the bedclothes. That all happened 50 years ago last May.
I once smashed my big toe when my ‘hot jar’ landed on it. When I was a little girl, we didn’t have the luxury of rubber hot water bottles. I had a heavy ceramic jar filled with hot water, with a large ceramic screw lid on top and it was used to take the chill off the bed as our house had no central heating at that stage. Anyway I managed to drop this thing on my foot one day causing my toe to bleed profusely. I can recall having my foot immersed in a basin of hot water (with Dettol) and watching the water turn bright red. I also remember my Dad giving me a piggy back every day into school. A few week’s later I felt something peculiar in my sock and found a discarded toe nail.
During my college days, I was the proud owner of a gold Yamaha 50cc motorbike having worked for a whole summer in a German canning factory, to fund it. One dark wet winter’s evening on driving home, an oncoming car suddenly turned across my path without warning, at a road junction. In that split second, I had a clear choice. 1) to crash into the side of the car or 2) to take evasive action and swerve into the path of oncoming traffic. I chose to hit the car and I can still recall the ‘thump’ and the sensation of being catapulted through the air, over the roof of the car. I was lucky in that I survived and was carted off to hospital by ambulance but I lost my dear bike that night. It took many years before I rid myself of the nickname, Evel Knievel.
Those of you who have read this blog before will know that I have an inherited connective tissue disorder (EDS) which leaves me prone to joint laxity. I’m right-handed and so my right shoulder takes the brunt if/when I have a fall. After several dislocations it eventually got to the stage where I needed surgery to stabilise my right shoulder joint. The surgeon carried out a ‘Putti-Platt’ procedure to shorten the ligaments and prevent further dislocation. Now no matter how hard I try, I cannot rotate my right arm outwards (no external rotation) to reach things on my right side. Think about this, the next time you reach for your driver’s seat belt.
And that’s as far as I got last night before I became all tagged out and went to bed feeling rotten. I’ve not been feeling well since last Friday having woken with marked congestion in my nasopharynx (area behind nose and above soft palate) but with no sign of a cold or sore throat. The congestion continued over the weekend and I began to feel like I was fighting a viral infection. My husband had to abandon the bed by Sunday night as loud snoring prevented him from getting any decent sleep. Yesterday, the congestion moved on up into my forehead and overnight it turned into a fulminating infection with pus literally bubbling over in my head. With my past history, I cannot afford to take risks so I headed to the doctor first thing this morning to get nasal swabs taken before starting on an antibiotic. So my medical misadventures are ongoing. I’m going to call it a day now as my head feels like it’s been taken over by aliens. I’m not going to tag anyone with this meme for fear it may be infectious. Enjoy the lucky escape!
9 Comments | antibiotics, connective tissue, EDS, hospital, hospital trolley, medical | Tagged: ambulance, dislocation, infection, ligaments, nasal swab | Permalink
Posted by Steph
March 4, 2008
I’m in the wars again. Last month I was started on a potent steroid treatment for a medical condition unrelated to the connective tissue disorder (EDS) from which I suffer. The treatment has worked well for the purpose intended but it appears to have had some unwelcome side effects.
Last Saturday morning while out walking on rough terrain, I twisted an ankle while coming down a stony track. I have always stumbled a lot as my joints tend to collapse easily due to poor proprioceptive response. I have the hypermobility type of Ehlers-Danlos syndrome where lax ligaments are a classic feature. I’ve lost count of the number of times I’ve torn/sprained ligaments. However, on this occasion I escaped with only a mild sprain and was able to walk gingerly back to my car. This incident could easily have spoilt my chances of making it to the IBA awards that same night but luckily, I was fine and thoroughly enjoyed the ‘outing’ although my ankle was very swollen the following morning.
I awoke today with pain in my forehead and an obvious sinus infection so the day did not get off to a good start. Over the last few weeks I’ve noticed that my lower back has become progressively weak. I’ve found myself having difficulty getting up from sitting or bending and today my back finally gave way when I leant forward to do some very minor task. My lower back immediately went into acute pain and spasm and I knew instantly that I was in significant trouble. I’m well-used to back pain having developed an unstable pelvis during my last pregnancy. I spent the final three months of that pregnancy on crutches with my pelvis tightly strapped in a special brace to support a rapidly expanding girth. Ever since those days, I’ve suffered from chronic pelvic pain and recurrent tears of the sacro-iliac joints. Today’s pain in my lower back is somewhat different but very acute none the less. If I were to stop my life every time I experienced joint pain, I’d never get anything done so this morning I simply took a couple of powerful painkillers and hoped for the best. I eased myself into the car with difficulty and drove to visit my parents in their nursing home. A stupid decision. By the time I’d arrived, I could hardly get out of the car and was in such pain I could barely walk/talk, let alone push my mother around in her wheelchair. I only stayed a short while before making the painful journey home again. I found myself approaching traffic lights slowly in the hope they’d go green in time to avoid braking. I normally despise drivers who behave like this but after today’s difficult journey, I hope I’ll be a little bit more compassionate to other road users in future.
My conclusion to this tale of woe is that I’m highly suspicious now that the steroid treatment has affected my normal levels of resistance leaving me susceptible to infection and joint instability. I might be entirely wrong about this and I’m sure my GP will be able to advise further. I may not have been blessed with good fortune when it comes to health matters but I do have good powers of recovery so I’m confident I’ll be back on track in no time. I usually keep quiet when in pain and only confess to it, if and when I have to. Tonight, I’ve used the luxury of this outlet to offload my frustration. I don’t need sympathy thanks, just understanding. Thank you for listening.
12 Comments | connective tissue, EDS, general practitioner, health, medical, Steph's Story | Tagged: ligaments, pregnancy | Permalink
Posted by Steph
October 27, 2007
For as long as I can remember I’ve been told that I’ve been very ‘unlucky’. My medical history includes numerous joint injuries, recurrent sinus infections and multiple trips into hospital for surgery.
As a teenager I suffered intermittently from joint pain when participating in contact sports at school. X-rays results were always normal (MRI scans weren’t available in those days) so the cause of the pain was a bit of a mystery. On leaving school, I embarked on a career in physiotherapy but the joint problems followed me there. During my first year in college, I suffered numerous falls as a result of joints giving way unexpectedly and on one occasion I dislocated a shoulder, badly tearing the ligaments in the process. As a result, my shoulder tended to dislocate easily and surgery was recommended. An operation called a ‘Putti-Platt’ procedure was carried out to restrict my shoulder movements and prevent future dislocation. The recovery was a long haul with many set-backs along the way but eventually the pain my shoulder settled down.
During my college days I was also involved in a road traffic accident where I was knocked off a small motorbike and catapulted over the roof of a car. Luckily, no bones were broken but I sustained knee and groin ligament damage and months of rehabilitation followed surgery. There seemed to be no end to the string of bad luck. When the time came to enter my final year of physiotherapy training, I had successfully passed all academic exams but was unable to complete the practical aspects of the course due to continuing joint pain. I was advised to take a year out from training with a view to returning once I’d regained physical fitness. That was over thirty years ago and I never did get back to finishing the course. I did however succeed in discovering the underlying cause of all the joint problems.
By the time I reached my mid-thirties I was married with two children and my medical history continued to grow. Even pregnancy had proved problematic. I suffered several miscarriages and spent three months on crutches during my last pregnancy due to lax pelvic ligaments. I also suffered recurrent sinus infections while pregnant which has left it’s legacy to this day.
When my youngest child was three years old, I was admitted to hospital for an operation to eliminate a recurrent frontal sinus infection. Unfortunately, the surgery nearly put an end to me as well. I finally left the hospital some six weeks later having experienced a very severe reaction to an antibiotic. I’d developed a condition known as pseudomembranous colitis which left me extremely ill and weak, and eventually it turned into an acute arthritis affecting each of my previously injured joints. When I was at my lowest ebb in hospital a renowned physician was consulted to sort out the problems. His expertise was exactly what was required as he succeeded where others had failed by finding the missing piece of the puzzle that was my medical history.
I was diagnosed with Ehlers-Danlos syndrome (EDS), Hypermobility Type, which is a genetic disorder that affects collagen structure and function. The abnormalities in the manufacturing of collagen within the body affect connective tissues, causing them to be abnormally weak. The symptoms of EDS include unstable, flexible joints with a painful tendency to dislocate and subluxate. This is due to ligaments which, because they are lacking proper collagen – the molecule that provides strength to ligaments – are overly stretchable. There is also a tendency to develop abnormal scar tissue following injury or surgery. The skin is another feature of EDS – it has a smooth, velvety texture and bruises easily. The severity of the condition varies from person to person and there is no known cure. Treatment is supportive.
At long last the mystery of my medical misadventures had been solved. It was a great relief to find out why I seemed to be ‘different’ to everyone else. However, I soon discovered that the condition is poorly understood and many doctors do not know how to take care of a patient with EDS. This can be very detrimental where surgery is concerned. I have continued over the years to require surgery on an on-going basis but I am always careful to ensure that the surgeon is aware of the problems associated with EDS. I’ve been very lucky to find an excellent physiotherapist who is extremely knowledgeable about EDS and she comes to my rescue when help is needed.
Regular controlled exercise is hugely important to stay on top of a condition like EDS. I have learnt techniques to improve muscle tone and avoid injuries. I cannot walk on a hard surface for any length of time without experiencing joint pain, so soft ground and good footwear are a must. One of the few benefits of EDS is that I have very clear, soft-looking skin. People often comment on how well I look which is a great bonus although it can be deceiving as well.
Those of you who have read my blog before now will know that in recent years I’ve had a serious battle on my hands with an MRSA infection and osteomyelitis following surgery for recurrent sinus problems. My life may not exactly have gone according to plan but it ain’t bad when all things are considered. My husband deserves a medal for putting up with so much over the years. He’s the real hero here.
17 Comments | connective tissue, EDS, medical, MRSA, osteomyelitis, patient's story, physiotherapy, Steph's Story, surgery | Tagged: collagen, dislocation, joints, ligaments | Permalink
Posted by Steph