Jon-Peter's story

In the summer of 2018, I was diagnosed with Chiari Malformation (type 1). This was discovered by chance following an MRI scan I had at Dorset County Hospital. Prior to this I had started experiencing issues with the left-hand side of my body – namely my hand and arm. I had pins and needles and pain and these symptoms seemed to suggest either carpal tunnel or a trapped nerve. However, my consultant was confused during an examination to access my responses as my symptoms were correlating with different vertebrae.

Upon the result of my MRI scan, I was given an appointment at the Wessex Neurological Centre at Southampton University Hospital.

I was told I needed decompression surgery; I also had my top C1 vertebrae removed. After a few days I was released to go home, however I had ongoing severe headaches and vomiting so was readmitted to Southampton Hospital. There, a CT scan showed what the doctor’s called a Pseudomeningocele – an abnormal collection of cerebrospinal fluid surrounding my brain. I was quite worried about this for a couple of reasons. Firstly, the pain wasn’t like a normal headache, it felt like someone was pressing on my head. Secondly, there was a possibility that I would need further surgery. This would have meant having a shunt fitted. The doctors weren’t keen to do this due to the high risks involved. Shunts often go wrong and need to be replaced. Also, there was a reasonable chance I could contract meningitis. In the end they decided to monitor me for another week. I was bed bound during this time but thankfully rest was the best medicine and the fluid on my brain resolved itself.

The Brain & Spine Foundation supported me by providing information on Chiari Malformation which helped me, and my family, understand the condition. I also joined the Chiari Malformation Facebook support group which has put me in contact with others with the same condition as me.

I wish my family really understood what it was like living with Chiari. They find it difficult to fully understand how bad my health is and the daily struggles I face. As you can’t see the root cause (my brain) it makes things more difficult. My condition has further affected me as I am unable to continue my family tradition and join the RAF, like my father and grandfather before me.

I don’t feel I was ever supported by my employers. There were certain things that they should and could have done to support me and didn’t. They decided to terminate my contract due to ill health, having taken the decision to go through their sickness procedures. However, my condition is classed as a disability under the Equality Act 2010 so I should never have been put in that position.

To anyone who may be at the beginning of an experience like mine, I’d like to let you know that it is a long and difficult journey. However, when you have the right support in place there is no reason why you cannot live with the condition. You may not be fully the same again, but you’ll be much stronger having gone through it.

I have recently joined the Brain & Spine Foundation Ambassador programme. This is a big thing for me, as I learn to live with condition. I had always said when I was ready I wanted to do my bit and try and make my health a positive and help make my life and others easier.

I would describe myself as emotional sensitive, strong, resilient and compassionate. I’m a keen sports fan and George Wilson “Doddie” Weir is a big inspiration to me due to his resilience and strength he has shown since being diagnosed with motor neurone disease (MND). Like me, he also lives with the debilitating effects of a neurological condition.