- About the Conditions
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It was December 2000 and I was busy wrapping Christmas presents late at night with my mum and sister, when I experienced some numbness in my face and hand. I was scared but put it down to over tiredness and rushing about. I was a sister in charge of the oncology outpatients department at a busy Birmingham Hospital and worked long hours also working in another local hospital at weekends. I had just started my Masters degree at the time and the presentations and essays were hard work. Over the next few weeks I continued getting the tingling and numbness, flashing in my eyes, memory loss and sometimes falling over when I got out of bed. I longed for a few days off over Christmas.
New Years day 2000 my friend was driving us to the pub and I got tingling and numbness in my arms and chest and I started to panic.
Fortunately the pub was right next to a hospital so I popped in for a check up! The doctor on call thought it was anxiety and although I am not an anxious person, I was obviously distressed by the time I got there. Reassured I went to the pub and a couple of drinks steadied my nerves. I went to see the GP twice and they thought it might be epilepsy. I had nursed people with epilepsy and this diagnosis didn't fit to me. I spoke to one of my Oncology Consultants at the hospital who sent me for an MRI brain the very next day! I had a job interview during these two days and I couldn't focus on answering the questions worrying about what might be wrong. I didn't get the job!
I waited anxiously for the consultant to tell me the result as the MRI dept had phoned for his number to tell him there was something wrong on the scan. He told me that it wasn't cancer as we all fear, but a Chiari Malformation and explained what it was. I rushed straight home to research it on the internet. I told the GP what was happening.
I was referred to Mr Flint at the QE and saw him in clinic some 7 weeks later. I also saw Alison Waldron his Specialist nurse in her clinic a month after. We agreed to 'watch and wait' for a while to see if I could manage without surgery but by September, when I returned from a holiday in Australia, I was getting worse with a nerve type pain down my left arm, numb feet and really bad headaches. I rang his secretary Anne and asked her to put me on the list.
I spent the next year having panic attacks when I was driving as I was fearful something would happen to me, ice cold feet and pain in my arm, amongst other things.
I went for surgery on Dec 17th 2002. Anne made me laugh as she said it must have been at the back of my mind, which is exactly where it was! People always ask if they can pick my brains and I used to reply that someone had beaten them to it!
I was only in hospital 3 days, got let out, overdid it and got rushed back in with vomiting, which was thought to be a raised intercranial pressure. After a CT scan and a lumbar puncture I was let out on the 23rd Dec. I went back to work in April 2003 and the bad headaches returned. I felt so low, I couldn't bear this for the rest of my life. I was 28. I had another lumbar puncture. I then had two yearly MRIs thanks to my Oncology Consultant friend. I haven't needed any more LPs.
I have been a member and trustee of the ACT since April 2004 and have run the Birmingham/ Dudley Group since late 2005 / early 2006. I finished my MSc, learnt to scuba dive, bought a house, did more travelling and lecturing at conferences. I am a complementary therapist, practising a range of treatments. I went on to be the acting manager of the oncology unit, then a chemotherapy sister and have recently changed trusts - I am now an oncology / chemotherapy clinical nurse specialist over 2 hospitals. I was lucky that I had a quick diagnosis, although a reasonable wait for surgery. I have hardly lost any time from work with my CM. I really enjoyed working with Graham Flint, Tony Kember, Barbara, the other trustees and helpers for Syringomyelia 2007.
I still get the odd headache, poor balance, walking into things, short term memory problems now and then. I get on with my life and manage to do most things that other people do, although I found the scuba diving course hard. I have just got engaged to Steve who I went to sixth form with 17 years ago! We have booked our wedding for next June in the Dominican Republic. I am always available if anyone needs a chat. I realise I am lucky to be able to live a nearly 'normal' life and I am aware that there are people less fortunate than myself!