I am a 45 year old nurse who was diagnosed with Chiari Malformation with C2 - T1 Syringomyelia a year ago. How I got to that point is bizarre, but at least a diagnosis was made. Up to that point I considered myself fit and healthy, maybe with a few health issues which I put down to getting older.

In March last year I had been at the gym, working out, doing my usual routine when I started with a sudden pain in my left arm while running on the treadmill. I thought maybe I had been over doing it so missed out a few days with no improvement. By this time by arm was very painful, it felt like someone had got hold of my arm and was twisting it round and round. I went to my GP who gave me pain relief and sent me for some physio. After 2 weeks of physio and pain relief, there was no improvement so I was sent back to my GP. He referred me to see an orthopedic specialist as he thought I had a trapped ulna nerve. I went to see the specialist and she referred me for an MRI saying it wasn't a trapped nerve.

My MRI appointment came within 2 days which I thought was strange. When I arrived for my appointment the lady said they were doing my brain and neck, which also set off alarm bells. I am very claustrophobic so found the whole experience very scary. That afternoon I got a call from MRI asking me to go back for another MRI the next day to have contrast so they could see more clearly. By this point I realised something was wrong. After the MRI I insisted the radiologist tell me what was wrong as it was coming up to the Easter holidays and I wanted to know what I was dealing with. I was so shocked when he told me, I have been a nurse for 25 years and never heard of the condition.

I was seen by the Neuro surgeon the next day who told me clearly I needed urgent surgery as the syrinx (a fluid-filled cyst in the spinal column) was so large it was touch and go whether I would even make it! My children at the time were 19 and 22 years old. I had to go and tell them as both were away at uni, they both came home. I am originally from England so had to ring and tell my parents about the daunting surgery I was facing, they flew with my brother out from England. Without the support of my husband I don't know how I got through those days until my surgery.

I went in for the surgery the day before to meet the anesthetist, have blood tests and to prepare me for surgery. I had my surgery April 9th and was in theatre 9 hours as it was so complex. I had a Laminectomy with a syringosubarachnoid shunt insertion, foramen magnum decompression with excision of C1 posterior arch and a duraplasty with pericranium. It was all so complex but it saved my life.

Photographs of Diane post surgery (left) and recovering at home (right).

When I came out of theatre my husband didn’t recognise me as I was wheeled past into the High Dependency Unit, where I stayed overnight. I was transferred to the ward the next day and had to lay flat for the next 5 days. Then it was a gradual recovery, the first time out of bed was daunting but each day things became easier. I was in hospital 9 days.

My parents looked after me at home so my husband could work as he is self-employed, and so that my children could go back to their studies. I have been left with some deficit and on the right side as the syrinx had caused so much scarring to my spinal cord. I can't feel my right leg or midriff but I can walk quite normally which amazes me. I still get headaches but they are not as bad as they were. I also have damage to the nerves in my left arm that causes me a lot of pain, and I take regular pain relief. I still attend the Pain Clinic but only every 3 months.

I had my first yearly MRI and it all looks good so that's a relief. Would I have the surgery again? Without a doubt, as without it I wouldn't be here today. I realised as I learnt about my condition that it is a life-long thing even after the surgery.

Love Diane xxxx

If you have a question, you can contact me at ladydianeinnz@hotmail.com.