Jon-Peter's story

Jon-Peter’s journey took an unexpected turn in the summer of 2018 when he received a diagnosis of  Chiari Malformation (type 1) following an MRI scan at Dorset County Hospital. Prior to this, he had been experiencing troubling symptoms on the left side of his body, including pins and needles, and pain in his hand and arm. Initially, carpal tunnel or a trapped nerve seemed likely, but his consultant noted inconsistencies during the examination, as his symptoms appeared to correlate with different vertebrae.

The MRI results led to an appointment at the Wessex Neurological Centre at Southampton University Hospital, where the news was that he required decompression surgery, which included the removal of his top C1 vertebra. After a few days, Jon-Peter was discharged, but severe headaches and vomiting soon led to his readmission to Southampton Hospital.

A CT scan revealed a Pseudomeningocele, an abnormal collection of cerebrospinal fluid around his brain. This was a significant concern due to the intense pressure-like headaches and the potential need for further surgery involving a shunt. Doctors were hesitant to proceed with a shunt due to the high risks of malfunction and infection, including meningitis. Thankfully, after a week of strict bed rest and monitoring, the fluid resolved itself.

During this challenging time, the Brain & Spine Foundation provided invaluable information about Chiari Malformation, helping Jon-Peter and his family understand the condition better. He also found support and connection through the Chiari Malformation Facebook support group, where he could connect with others facing similar experiences.

Despite this external support, Jon-Peter longed for a deeper understanding from his family regarding the daily struggles and the impact of his often-invisible condition. Furthermore, his diagnosis brought the disappointment of being unable to continue his family’s tradition of joining the RAF, a path his father and grandfather had taken before him.

Adding to his difficulties, Jon-Peter felt unsupported by his former employers. Despite his condition being classified as a disability under the Equality Act 2010, his contract was terminated due to ill health following their sickness procedures.

Looking back, Jon-Peter acknowledges that navigating such a condition is a long and arduous journey. However, he emphasizes the crucial role of having the right support system in place, highlighting that it is possible to live with the condition and emerge stronger, even if life feels different.

Following his surgery in 2018, Jon-Peter faced a profound mental health crisis, experiencing a mental breakdown and actively contemplating taking his own life. This period was compounded by the disappointment of not being able to join the RAF and the loss of significant family members, his Great Auntie Eunice and his Godmother Auntie Pat.

Now a Brain & Spine Foundation Ambassador, Jon-Peter is embracing his journey of living with Chiari Malformation. He had always intended to use his experiences to help others when he felt ready, aiming to make life easier for himself and those around him. He describes himself as emotional, sensitive, strong, resilient, and compassionate. As a keen sports enthusiast, he finds inspiration in George Wilson “Doddie” Weir’s resilience and strength in the face of motor neurone disease (MND), another debilitating neurological condition.