Personal Stories

Jill Redpath - Newly diagnosed Arnold Chiari sufferer Jill Redpath shares her experience of Chiari Malformtion - and why she has a King Charles Spaniel to thank for finding out about the Trust, as she now sets up a local group in more

Christine Barnes - I am 53 years old - but a young version!! I have always been a very active person, the kind that never sits still and so this condition hit me hard... read more

Sue Kember - I was first diagnosed with a Hindbrain Hernia about 10 years ago. Very bad headaches, which occurred when I did certain things, made me visit my GP whose first thoughts included a tumour or aneurism... read more

Sally Partington - My problems started in October 2005 when I developed shingles. I immediately started a course of strong medication and whilst it helped with the shingles, I developed a constant dull headache... read more

Jean Shepherd - Firstly I feel it is necessary to state the following is not a criticism of the NHS for the time it took to receive a diagnosis or of the length of time between acknowledgement of something amiss and the resolution of that problem - it is just what happened... read more

Melanie Bernstein - In 1999, at the age of 24, I was diagnosed with syringomyelia/ACM following an MRI scan at the John Radcliffe Hospital (JR) in Oxford and in October that year underwent decompression surgery performed by Mr Teddy... read more

Joan Purvis - In January last year my GP picked up that I was experiencing a loss of balance and couldn't walk in a straight line. She referred me to a specialist, who ordered an MRI scan... read more

Steven Evans - Anyone who has undergone decompression surgery will tell you how difficult it is to look at the television if it features anything that looks like brain surgery... read more

Rebecca Pitt - It was December 2000 and I was busy wrapping Christmas presents late at night with my mum and sister, when I experienced some numbness in my face and hand... read more

Malcolm Cooke - Apart from being hospitalised with pneumonia at the age of five I enjoyed reasonably good health as a youth and was accepted as grade FE for National Service at age 25... read more

Jessica's Story as told by Kirsty Leigh - After reading the stories in the newsletter about adults with Chiari, I felt compelled to tell you about my brave 7 year old daughter's story, and hope it will help other parents in the same dilemma... read more

Cerys Carlson - Hi, my name is Cerys; i am a 9 year old girl living with an Arnold Chiari Type 1 malformation with an acquired nystagmus... read more

Steve Ansell - Hello, my name is Steve Ansell and I have undergone a decompression for ACM last October 23rd 2008. My story (after consulting the Neuro Surgeon), seems to have started back on 7th January 1958, my birthday... read more

Matthew Paskin - We came across the Ann Conroy Trust, like most people, in a desperate attempt to find out what it meant to have an CM... read more

Helen Bennett - Hello, my name is Helen and I was diagnosed with Chiari Malformation Type 1 with Syringomyelia a week after my thirty-sixth birthday... read more

Aife Joyce - I was diagnosed in May 2008 with Arnold Chiari 1 Malformation with a small syrinx. I was referred to a neurosurgeon in CUH Co. Cork. Ireland, a Mr Michael O'Sullivan... read more

Paul Houlton - I was born on Easter Sunday 1965 in Whiston Hospital. This was in the days before ultrascans, so it was a shock to my parents when I was born with spina bifida, and hydrocephalus rapidly followed... read more