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
January 31, 2008
Last year I reached that magical age when I could officially join the ‘club’. BreastCheck is part of the National Cancer Screening Service in Ireland and invites women aged 50-64 for a free breast x-ray every two years. Breast cancer occurs most commonly in this age bracket and with early detection being the key to successful treatment, regular screening is recommended.
My birthday came and went and when six months later I still hadn’t heard from Breastcheck, I decided to take the matter into my own hands. On researching BreastCheck online I was able to check if my name was registered using a self-search facility. My name wasn’t known. I next phoned BreastCheck to enquire what action should be taken and to my surprise, the helpline was answered by a decidedly grumpy male voice. To be fair, my call was made during the time of the outcry about breast cancer misdiagnosis when women all across the country were up in arms and I would imagine that all breastcare services were probably bombarded with enquiries. I still felt it wasn’t right to have a man dealing with enquiries in what is essentially though not entirely, a woman’s area of health. I persisted however and he took my details assuring me that I’d hear from BreastCheck early in the New Year.
Yeah right, I thought! But actually I did get an appointment in the post and today I attended a mobile unit of BreastCheck to undergo my first mammogram. The unit staff were courteous and welcoming. I arrived early for my appointment and as there was no one else waiting, I was seen straight away. While sleet and rain battered against the window outside, I stripped to the waist and a nurse carefully helped me into position to be x-rayed from two separate angles. Each breast was compressed like a pancake in a vice-like structure causing significant discomfort but it only lasted a few moments while the x-rays were taken. My biggest problem was having to contort my body with an arm raised over my head to get the angle required. I have one shoulder which has been surgically restricted to stop recurrent dislocation and this did not make things any easier. However, it wasn’t long before the procedure was finished and I was invited to look at the images on screen. I was informed that one breast is larger than the other though apparently this is quite common and is nothing to be concerned about.
Having dressed and returned to the reception area, I decided to use the opportunity to ask more about the system used to automatically register women. I was confused as to why I seemed to have slipped the net. I was told that BreastCheck compiles their list from information supplied by the Department of Social and Family Affairs, General Medical Services and private health insurance providers. I then learnt that the process can take up to two years before someone will be called for screening. I was appalled to hear of this as I have several friends who developed breast cancer at my age and with this disease, it’s well-known that time is of the essence. My prompt appointment had come about simply because I’d pre-empted the system by making an enquiry. I would urge all women in this age bracket to ensure that they are in the system and that they attend for mammograms when called. We owe it to ourselves to take whatever steps are necessary to stay safe. Please make time for your breast health.
I have no particular reason to fear breast cancer but because I’m aware that a mammogram can show up some tumours two years before a lump can be felt, I’d rather be safe than sorry. I was pleased to hear that today’s results will be posted out to me personally and to my GP, within three weeks. With that reassurance, I took myself and my lop-sided breasts home to wait.
9 Comments | health, medical | Tagged: breast cancer, BreastCheck, dislocation, screening, x-ray | 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