For as long as I can remember I have suffered from neck
pain, sometimes it was so painful that I couldn’t turn my head. In 2015 I lost my mum and that’s when it got so bad I decided it was time to find out what was going on.

I had my first MRI in 2016 and was immediately referred to a Neurologist, they then asked me to have another MRI but this time using contrast so they could get a better idea of what was going on. It was 2016 that I was diagnosed with Chiari Malformation and Syringomyelia. Chiari Malformation is where the lower part of your brain pushes down into the spinal canal, Syringomyelia is a fluid cyst (Syrinx) that forms within the spinal cord. 

I was then admitted to Queen Square Hospital at the end  of 2016
so the pressure in my head could be monitored and they advised me it was 3 times the level of a normal persons. I was given 3 options I could have a VP shunt put into my head (a thin plastic tube that helps drain CSF fluid from my brain into my stomach) with a valve and magnet attached so pressure could be monitored or Foramen decompression surgery (involves making a vertical cut at the back of the neck and head to remove a small piece of bone, to create extra space at the base of the skull for the brain and spinal cord) or I could leave it and monitor it (along with a lot of painkillers) and unfortunately not allowed to go on an aeroplane. I chose
option monitor. 

My incredible surgeon Mr Toma was so surprised that I still managed to go to my appointments in high heels and totter my way in, he told me that he used my MRI images for his students as he couldn’t believe that I carried on the way I did, he made me promise if symptoms worsened (tingles or numbness) that I would go and see him immediately as if the syrinx started growing then
we would have no choice but to have one of the 2 surgeries as if the fluid moved too much into my spinal chord the damage could be irreversible. 

I had regular MRI’s every 3-6 Months (I am a pro now). I
still had headaches and my neck was still super painful but I could carry on it wasn’t debilitating until 2020, the headaches and neck pain got so bad I would often have to sit with a hot water bottle on my head or a really tight hairband to try and relieve the pressure, it was starting to affect the nerves in my hands and arms as I now had pretty much consistent pain. So now I knew monitoring it wasn’t an option. I had the VP shunt in March 2021, recovery wasn’t too bad and my symptoms although still there they didn’t stop my daily
life and I no longer relied on the headbands.

Since 2021 I would continue regular MRI’s and regular contact with my surgeon, unfortunately the VP shunt wasn’t having the desired
affect and the syrinx hasn’t shrunk but my pressure has come down dramatically and I was told that I can now go on aeroplane. About 6 weeks ago I started feeling numbness and tingling in my legs, I was instantly scared as this is something that I have always been told to keep an eye out for. I had another MRI and this time my surgeon explained that although the syrinx hasn’t grown (it is so close to my spinal cord) it was probably time to put a plan in place for the 3^rd option, foremen decompression surgery. 

There isn’t a rush but we all know it is inevitable. So with this in mind, I have always wanted to take part in a marathon and when I came back from my last hospital appointment I decided if I was going to have this surgery in the not too distant future then there is no time like now……I am not looking to beat a record, I am not looking to run the whole way because I know I can’t but I am looking to finish and to cross that finish line with my head held high.

I am starting my fundraising early as I know this is going to be a hard 7 Months as I AM NOT a runner so I need all the support I can get.