Horner's Syndrome

In 2010 I was the owner of a Riding School and had been for a couple of years. I had been working with horses for a little over a decade and running and then owning a Riding School was in many ways the natural culmination of that work. Initially I was brought in to run the Riding School, located on the outskirts of the nearest Market Town. The school had been established almost 20 years ago by the land owner but, by her own admission, she was getting tired. When I arrived there were just under one hundred clients. After six months the landowner suggested that I take on the running officially so I bought the rights to the Riding School and began to really grow the business. By the end of 2009 the active client base was up to 300 or so and we were taking new ones on at a rate of one every 2 days. Just as I was beginning to make a profit the landowner decided to sell, without telling either me or any of the liveries, some of whom had been with there through a number of horses. The new owners, when they eventually arrived, did not want the hassle of a school. So even though I still had a client base of between 300 and 400 I had to find a new venue which proved impossible so I had to close the business.

The months either side of the closure were very stressful on me and the family. I managed to keep a small number of clients, those with their own horses and as I was teaching one of these I began to feel unwell and my right eye started to weep. This carried on for a few days before my partner persuaded me to go to the doctor, who diagnosed Conjunctivitis and prescribed drops, which had absolutely no effect. I eventually developed a whole range of symptoms including: headaches right across the front of my head, behind the eyes; a cough; tiny lesions on the right half of the top of my head; a loose bowls; and strangest of all a drying and flacking of the skin on the right hand, which appeared and disappeared in as short a time as half an hour. A return visit to the doctor gave a new diagnoses of Head Shingles for which she prescribed another set of drugs.

There was a mix up with the prescription, one of the drugs came in two boxes with different designs and even two different names, and as a result I found myself taking double the dose and within two days I was being sick every few minutes with a complete inability to keep anything down, even water. By lunchtime of the second day my partner called the doctor’s and when they suggested that I come in she told them that it was impossible, so it was agreed that a doctor would come out on a home visit. It was only once my own doctor arrived around tea-time that the error with the drugs was discovered. Having sorted out the issue around the dosage I got back to what passed for normal in a day or so.

The meds to deal with the Shingles had absolutely no effect. So a few days later we were back at the doctor’s. This time I saw a locum who thought it might not be Shingles and sent me to the eye department at a hospital at a seaside town 35 miles away. The partner drove me as I was not really up to it and we had been advised that it was not good for me to be driving because the tests might prove bad for my eyesight in the short term.

As is often the case when one presents to hospital my blood pressure was taken and it was 240/100. My partner was convinced that I would be hospitalised with those measurements but I was not. After an MRI Scan and much painful digging in my tear ducts with stainless steel medical pokers the doctors were no nearer making a diagnosis. They had, however, noticed that my right upper eyelid had dropped so that it was resting just above the pupil. With symptoms ranging from headaches, a cough, a dropped eyelid and my alarmingly high blood pressure the medics were struggling to come up with any firm diagnosis so they sent me home.

A few days later I received a letter from my doctor asking me to come in for a consultation during which she admitted that she had no idea what I had. We discussed the possibility of me having either a single problem or even three or more separate ones and any combination therein. She was, however, concerned about my blood pressure and put me on a new regime of drugs.

I was 47 and being a male I was not happy at the concept of having to take drugs for the rest of my life so started agitating for the doctor to let me bring my blood pressure down by lifestyle changes. At no point was the concept of a Stroke mentioned, except in passing. There was never any form of conversation around exercise, diet, stress management. The doctor gave me a medicine to help calm the coughing and things were left at that.

Eventually I was sent to a Cough Clinic at yet another local hospital. I underwent a hole range of tests which proved that there was nothing wrong with my lungs. Then a consultant thought he had cracked it: there was a cluster of nerves in my throat which was playing up. He was ever so excited as he told me, so much so that he was bouncing up and down. He sent me for a CT Scan which he hoped would confirm his diagnosis of something he had only ever seen once before and would mean that he could perform a very rare piece of delicate surgery. When, at the my next Out Patient’s appointment, the CT results failed to show any sign of the noodle that he expected he refused to even see me and sent a minion to break the “sad news”.

But the consultant did have some interesting news, which he communicated via a letter to my doctor: he thought I had something called Horner’s Syndrome

Information! What Information?

There I was sitting at home heading toward my 52^nd birthday and now a Stroke Survivor.

The really strange thing was that I really had no idea of what the hell that meant.

Studies suggest that somewhere around 120,000 people have their first Stroke each year in the United Kingdom with a further 30,000 having a second one. Of these 1:5 (30,000) will be fatal. In other words one every four and a half minutes. In the area of England where I live there are 1,000 strokes a year.

On a very rough and hugely unscientific survey, carried out by me amongst those fellow survivors I know personally it seems that most of these Strokes leave the Survivor with a range of deficiencies not so different to my own. I know a woman, in the village, who lives in the old peoples housing and must be in her late seventies or early eighties who had a stroke three weeks ago and is up and a bout. Unsteadily and with the aid of a stick but up and about. A more scientific study (produced by the Stroke Association) indicates that the average length of hospital stay post stroke in the UK was 20 days in 2010 which would allow for very many to stay for only a few days or less.

All this, unfortunately, adds up to a Stroke being a large part of what the National Health Service has to deal with. That being the case you would expect there to be a well oiled machine ready and waiting to burst into life.

Well, I got nothing! I found myself at home after two days in hospital with a bag of meds knowing next to nothing.

After leaving A&E not a single Consultant, Doctor, Nurse, Therapist or any other Medical Professional spent so much as a second explaining anything. There were many opportunities but they were all by passed. The Consultants were only interested in getting a diagnosis. The two more junior doctors I was put in the care of disappeared without trace. The nursing staff were only interested in taking my sats and getting drugs into me. The only people amongst the hospital staff were the cleaners and those bringing the food, who were all very nice and chatty but of no use when it came to Strokes.

The only information I gleaned about Strokes while in hospital was from a noticeboard on which was pinned a copy of some colour leaflets. Even without my history in marketing and having printed thousands of similar pieces of paper it was obvious that they were printed and meant to be part of a folder. I have not seen them again.

One of the things I craved after my Stroke was information and yet there was nothing coming from the very people and organisations I thought would not only be most helpful but would want to provide it.

I was discharged from hospital having been diagnosed as having had a Stroke with a bag of meds, the advice to get my Blood Pressure down, not to go to my GP, to and keep it at 145/90 and a copy of my “Immediate Discharge Letter”.

The letter, which was also supposed to go to my GP,  was full of long words and implications that it was my fault. There was no explanation of what had been found. As it turned out some of what it said was plain wrong or at least missed important information, but more of that in further posts.

There was no conversation about how I was to achieve the stated Blood Pressure target. Nor was there any discussion around any of the other risk factors: alcohol; diet; weight; exercise; stress. 

I was given no information regarding support services; either Health Service based or those provided by the Third Sector. I had no idea that such a thing as a Community Stroke Associate Practitioner even existed.

I was left with the internet as my only source of information and as we all know that is a coat of many colours. Some good and some bad! However I didn’t feel like surfing the world wide web at the time.

I have talked to almost thirty Stroke Survivors and they all agree that the information they received was diabolical to say the least. In this day and age that is nothing short of disgusting. There is no reason why a simple pack cannot be handed to every person who suffers a Stroke. But before that there should be a human being who is able to spend a few minutes explaining what has happened and what the Survivor might find happen into the future.

I have been told time and again that the deficiencies I had immediately after my Stroke was all there would be. Technically that might well may well be right but that is not what it feels like. After your Stroke you are not going to feel very well and as a result you are going to be resting and not using your body as you did beforehand. As you feel better you begin to use your body more and you come across other things you either can’t do or are having difficulty with. What the medics don’t realise is that every time it feels as if you are finding NEW deficiencies.

There should have been somebody telling me all these things: the good and the bad!

Having talked to a number of Stroke Survivors I know that what they really wanted was information. Without facts people tend to fill the space with whatever information they can which generally means that the space is not filled at all. What actually happens is that the black hole of non-information gets bigger and bigger.

All of which is utter rubbish!

All the information is out there and it is a disgrace that there is not a simple and well established routine that gives Stroke Survivors and their Carers everything they need to know.

One way round this impasse is for Stroke Survivors to be a part of the clinical team.

What do you think?