Making History

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?

A Rare Bird

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.

Swallow This

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.

One size fits all?

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.

Home Again

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!

Anyone for Tennis?

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.”

Anything’s Possible

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.

All Tagged Out

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!

It Never Ends

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.

Room 101

Room 101 is a BBC comedy television series in which celebrities are invited to discuss their hates with the host in order to have them consigned to the eponymous chamber from the novel Nineteen Eighty-Four. My own experience of Room ‘101′ was far from humorous though it did succeed in banishing forever, the mystery of my medical condition. The year was 1993. The location was a hospital. The journey was tough but the race was won!

Years ago while recuperating at home following surgery, I developed unforeseen complications and was rushed back into hospital as an emergency. I was to remain there for a further week while undergoing treatment to stabilise my condition. Within 36 hours of arriving home for the second time, I became seriously unwell again and was rushed back to hospital by ambulance. That night I did something I’ve never done before, or since – I shared my bedroom with a strange man. You see I’d been admitted to a cardiac unit for observation and found myself installed next to a man with a seriously hairy chest. We were the only occupants of the room and all I could do was laugh at the situation I found myself in. I hasten to add that we were both hooked up to monitors and all activity was closely observed!

The following morning, I was declared fit enough to be moved out of the cardiac unit into a single room, number 101, to undergo further investigation under the care of a physician. I was very unwell at the time and this second relapse was a mystery to everyone. The new physician examined me thoroughly and then disappeared, leaving behind a lot of unanswered questions. Over the next few days, I reached the lowest physical and psychological ebb I’ve ever experienced. A whole month had elapsed since the surgery and I appeared to be losing the battle. My children were both very young at the time and my husband was under huge pressure trying to manage everything on his own. I remembering phoning home one Saturday evening to check that our 3-year old had settled for the night only to find no-one at home. This totally cracked me up. I was so low at that point, I couldn’t fathom out what was happening and that’s when the realisation hit that life was going on without me, regardless. I cried myself to sleep that night.

The next morning things started to improve. My husband phoned to say they’d had a lovely meal out at our friends’ house the previous evening. He sounded on such good form, I hadn’t the heart to tell him how low I’d felt as a consequence of being left out of the loop. Shortly after his call, I turned on the television to find the London marathon in progress and having nothing better to do, I watched the whole thing from beginning to end. I spotted a female competitor with the number ‘101′ on her chest and from that moment on, she and I became an inseparable team. As the race entered the final straight, my running friend was placed third and was steadily gaining on the two women ahead of her. I watched with enormous excitement as she overtook them both and crossed the finishing line as the winner. I was ecstatic and cheered my little heart out. I knew this was a sign that I too, was going to be a winner in the long run. Later that same day, the physician reappeared at my bedside having researched my condition in the interim. He had established that I had an underlying genetic condition known as Ehlers-Danlos syndrome (EDS) and this diagnosis unravelled the puzzle of my illness. The battle was won.

An Update: Thanks to my son, Robin, I can now tell you that the winner of the 1993 London Marathon was Katrin Dörre-Heinig… number 101. Talk about a flash-back!