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Providing expert support to people affected by neurological problems

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Jamie's Story

I suffered horrible headaches for around 7 months but like any other 22 year old I took a couple of pain killers and hoped for the best.  It wasn't until I started to get pains in my neck followed by visual blackouts – as if someone had just closed my eyes – that it became a warning to me. 

The visual blackouts happened few and far in between however, one day in September 2015, it happened when I was driving my car on a national speed limit road and I had to stop. The car got abandoned and I walked home and phoned my GP straight away. 

It took 4 attempts to get the best GP in the practice who had little insight on neurological conditions and I was sent straight to the local hospital after 4 days of pleading my case. The local hospital said my symptoms were strange but they put it down to migraines and told me that if they got any worse to come back up. 

I left there and went straight to another hospital a little further away as I wanted a second opinion as I knew something was wrong because I hadn't been near a doctor in 10 years or maybe more. I was given a CT scan late on at night and admitted to the emergency care ward. I didn't have a clue what was happening, people were phoning asking if I was OK and my reply was “yeah, I think so”. Then the doctor came in and said “you’re going to have a MRI scan as the CT scan has shown some abnormalities”. I lay in the bed thinking all will be OK, there’s nothing to worry about – I think this was more of a shock more than anything.

Jamie in hospital

I got the MRI scan done and then the doctor came back with a full result and a team of junior doctors and various other people. I was told I had papilloedema, hydrocephalus and a Chiari malformation. The neurosurgeons at the hospital in Glasgow wished to see me in the morning so I'd be going by ambulance as soon as possible the next day.

I arrived at the hospital the very next day upbeat and full of laughter to be greeted by a consultant and her team of neurosurgeons. I was examined and then asked if I had eaten that day because they needed to take me to surgery within the next 10 hours or I'd be at risk of losing my vision completely as my optic nerve would be damaged too much. 

I laughed and joked not really realising the severity of what was about to happen as I was still in shock. About 6/7 hours later I was taken to theatre and an EVD (external ventricular drain) was placed to drain the fluid and pressure from the back of my eyes to relieve the papilloedema. Following that, a few days later it was taken out after monitoring and a ventriculoperitoneal shunt was placed in my brain to sort out the hydrocephalus. Normally ventriculoperitoneal shunts can last for years but in my case it only lasted 5 whole weeks before it failed, resulting in another operation and a new VP shunt being placed. 

It was now November and I had spent the last 2 months in and out of hospital. I had been called up for a MRI scan of my spine and head, as the pain at the back got worse and I started to get pins and needles in my hands and feet even sometimes dropping things which never used to happen before. This MRI scan revealed I had syringomyelia and another operation which would be the biggest yet had been booked for New Years Eve with my consent. This operation would be the foramen magnum decompression surgery for the chiari and syringomeilia to slow down the progression of the Chiari and hopefully help the syringomeilia. 

I can honestly say, that New Year is one I will remember for the rest of my days! Not the events that happened as I was completely away with it due to anaesthetic and painkillers but for what the neurosurgeons did to change my quality of life.

I am now over a year down the line from the day I was diagnosed with everything and it has been a roller coaster of emotions both good and bad, I have lost many people I thought were friends due to ignorance and gained friends from people who I never thought would care. My life has changed dramatically and I'm no longer able to do the things I used to do which I took for granted like drive or play contact sports, or even do physical work. I was advised all this from the neurosurgeons but I thought to myself that I can try to get on the best I can. So I did. I have managed to play 20 minutes of 7 a side football wearing a headguard and then I became a manager of an amateur football team to keep me involved in the game which I adore. I also was told I'd never be able to run long distances again due to my balance and coordination. On 2n October 2016, exactly a year on from when my shunt failed, I completed the great Scottish Run in aid of the Brain & Spine Foundation, even though I walked it. I also moved into and decorated my own house in time for Christmas last year.

Jamie's BSF vest

I take on each day as it comes and I am proving myself and everyone wrong on a daily basis. If you listen to your body and accept what you no longer can do then you can make life what you want to within reason! 

This is my story and I'm proud to be a “chiarian” and raise awareness of neurological conditions. Thanks for reading.


Since Jamie wrote his story, he had his 5th operation as the syrinx got worse. He had to shunt his spine in early February (2017).