Eva is trying to get her story published and has had interest in it. Her's is a very well written piece, one that lots of people could relate to and one that that will strike a few chords for sure.

Once again, I was the last to leave the office. The silence inside the normally chaotic fundraising room emphasised the drumming of the wind-driven rain on the windows. I was quite aware that I was only really working at reduced capacity, with all that was happening at home at the time. So it wasn’t really devotion to work that made me stay late, it was better described as guilt, guilt for letting my workload pile up.

February pay day marked a full 2 months since the end of a fifteen year relationship, which had long since turned stale but was difficult to end, until it finally crumbled, like a wizened leaf, at Christmas. Colleagues, friends and family kept telling me how amazed they were at how strong I was being; in that situation you either challenge each obstacle as it comes along, or go into freefall and I was determined not to let that happen. The priority was to get a mortgage approval to buy him out and save the family home. I did not want to admit it, but even with the support of my children aged 23, 21 and 13, the pressure appeared to be taking its toll on my health.

Two days before Valentines Day, I had received another bomb shell. Together with 3 others, I was told that my post was being made redundant and that I needed to apply for one of 2 new posts being created. I adopted my usual ‘Polyanna’ approach, put on a smile and began researching new jobs and submitting my application to compete with my line manager for one of the new in-house posts. After all, I had no chance of obtaining a mortgage if I was unemployed and without a mortgage we would loose our home of over 20 years.

Opening the drawer in my desk, it was a relief to find I had two paracetamol tablets left amongst a heap of empty foil wrappers. It was only two hours since taking the second of three permitted doses of Ibuprofen. Planning for night time was important – another sleepless night would be unbearable. I reached out for the glass of water with my right hand and as my fingers touched it, there was no feeling, movement, but no feeling at all. I cringed as the thought of why I had numbness was something I simply couldn’t face at that time.

This was the first time my hand had been numb. I was getting used to not feeling my toes and the tingling all down my left side occurred three or four times a day. I work in a hospice, have lunch with the care team and have heard them discuss symptoms on a number of occasions, having always regretted not going into the medical profession I took an interest. There were a number of similarities between what I had been experiencing over recent months and those experienced by patients suffering from brain tumours. I also have a friend who has MS, I knew my symptoms were serious, but so was my need to have a clean bill of health to apply for a mortgage.

Silently, I shut down the computer, pulled on my coat and left the office, rubbing my hand in the hope that it would improve with heat. My journey home had to be via an overdue visit to the supermarket, during which I managed to destroy a display of tinned tomatoes by trying to use a numb hand to select a can for the pasta sauce for dinner.

An early night seemed to help and I awoke with feeling in both hands and thankfully, enough sense to call in sick. In the morning I confided with a colleague on Facebook about my symptoms, which began the process of diagnosis rolling. Unbeknown to me, my colleague, Jenny had suffered a brain tumour 20 years ago and she refused to let me hide behind my other problems, insisting I had it investigated immediately.

My subsequent visit to the GP felt more like a confession, as I listed the problems and ashamedly told her that the began months ago, but had increased almost daily. However, I had enjoyed a few short periods when I appeared to be symptom free, but these were closely followed by even more headaches, regular persistent tingling and another limb or digit becoming numb. I played down my lack of co-ordination and dizzy spells, but she saw through my façade. ‘I would like you to have an urgent MRI scan, which I will arrange. Oh, and in the meantime I am sorry but I cannot allow you to drive’.

To my horror, an urgent MRI on the NHS was to be a drawn out process. Had I not paid to see the Neurologist privately, it would have been months before I was placed on the ‘urgent’ waiting list for the scan. It benefited me to go private and speed up the process for the initial meeting at least, as I was unable to work without use of my car. The Neurologist asked a few questions and offered to put me on the waiting list for an MRI on the NHS. I felt relieved that he also agreed to allow me to drive until the tests were complete.

In the six week period awaiting the MRI I was admitted to hospital on two occasions as a result of what now appear to be brain seizures, both occurred at work. The consultants were baffled as to the cause. I was firstly told it was a suspected heart attack, then on the second occasion that I had had a mild stroke. Once again driving and working were banned and still, I relentlessly pursued my mortgage application. In July 2009, at last the results of the tests including the MRI were available and I waited alone nervously in a bleak hospital corridor to see the Neurologist. It is only now, looking back, that I appreciate how worried I was. The specialist was about to deal out a double edged sword, the complexity of which I am still discovering.

‘I think it doubtful that this is Multiple Sclerosis, although I cannot rule it out completely. I don’t think it looks like anything too
alarming’. From this I understood he meant he could not see a tumour. At this point I wanted to be delighted, but knew how ill I had been and he was not exactly reassuring with his choice of words. If I leave now, I thought, I would convince myself that he had missed something. My only alternative would be to go in search of another Neurologist. ‘However’ He continued, ‘If you take a look at this area on your skull you can see what we call an Arnold Chiari Malformation.’

I had never understood how my friend could say she had been relieved to be eventually diagnosed with Multiple Sclerosis. But now I did, I knew there must be a cause other than stress for my illness and I needed to find out exactly what it was if I was to have a chance to fight it.

To put it simply, an Arnold Chiari Malformation, known as a Chiari is a rare condition named after the person who discovered it. I now explain it to friends as having a brain too big for my skull. The malformation is in the area of the nape of the neck and whilst in the womb the skull does not form as it should. There is insufficient space for the brain and over a number of years it causes the cerebellum, which is the part of the brain controlling balance to push through the hole intended for the spinal cord. To my untrained eye it simply looked like a large white mass.

About a week later, my eldest daughter called me on my mobile to say that the neurosurgeon would like to see me the following day. ‘Where are you?’ she asked. I had gone to the nearest railway station and boarded a train to the coast, in an attempt to escape and clear my head. By this time going for a walk was out of the question. I was suffering ‘vibration headaches’ common to Chiari patients, when the vibration of walking causes intolerable head pain. My right leg had also begun to sporadically give way making me stumble or fall and intense sudden attacks of fatigue would develop without warning. I have always valued my independence and at the time it felt under great jeopardy, so a simple act like climbing on board a train for a couple of hours, felt strangely liberating.

That was to be the last day which I spent in the dark. The next morning I met Mr Tom Carroll, a very enthusiastic and passionate Neurosurgeon, one of only a handful in the country who specialise in this condition. He explained about Chiari, gave me a leaflet and booked me in for a second MRI to look at my spine. The leaflet was entitled ‘Decompression Surgery’. ‘Surgery’ He explained ‘would only be recommended if you suffer from Valsalva headaches, or we discover a Syrinx in your spine’.

When he described a Valsalva headache I realised that the pain I had experienced for as long as I could remember was not something everyone had. Laughing or coughing are the most common triggers of a Valsalva. The intensity of this instantaneous headache, which usually only lasts for seconds, is indescribable. There is also an unexplained link with Sudden Adult Death Syndrome. Mr Carroll also showed me an illustration of a Syrinx or Syringomyelia. This is a liquid filled cist or cavity formed in the spinal cord. This can cause paralysis and in extreme circumstances lead to death, it is a progressive condition.

As I left he wrote down a name which would prove invaluable to me for the future. The Ann Conroy Trust, when researched linked me to a fantastic website and support forum. Over the next eight weeks I researched and came to terms with the condition. It helped to prepare me for the news that a Syrinx was evident on the spinal MRI and that surgery was recommended.

On October the 15th 2009 I was wheeled into the operating theatre for major brain surgery – cranial decompression surgery to give it its correct name. During which a cavity is created to allow the flow of CSF (spinal fluid) once again. This should, in time, shrink the Syrinx and reduce the pressure on the nerves in my spinal cord, and that in my brain.

Through sheer perseverance I did secure a mortgage and my children and mother helped to redecorate our home, ready for my return from hospital. 2009 was a difficult year, but I felt I had achieved so much by keeping a positive mental attitude. I now have a 6 inch scar down the back of my head, but this scar and those of all I went through last year are healing nicely.