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. An M.R.I. scan revealed that it was neither of these conditions but the Consultant told me there was a problem. The 'problem' was something that I had never heard of and I found it extremely difficult to find any information about the condition I was told I had.

It was recommended that I should see a Neurosurgeon who explained what a Hindbrain Hernia was and how it might affect me. He advised me to leave well alone and to try to manage my symptoms. I did manage for six years until my situation worsened to the extent that surgery was needed.

By now I was desperate for more information, I was frightened, and lacked confidence in my Neurosurgeon, so began my search through phone calls and the internet which ended when I was fortunate to find Graham Flint and The Ann Conroy Trust. I could now see a light at the end of the tunnel!

At my first meeting with Graham, he explained to me and my husband Tony exactly what he would do if I decided to go ahead with the operation for decompression. I had no hesitation in putting my trust in Graham, both Tony and I felt incredibly lucky to have found a specialist who was so experienced in this relatively rare condition and I decided to go ahead with surgery. Before I went into hospital for my operation I was able to speak to Anne Lane at the Queen Elizabeth, who put me in touch with Alison Waldron, who was our specialist Syringomyelia Nurse at that time. Talking to Alison, was enormously helpful. She explained how I might feel post op. and what to expect about recovery. I, of course, could not imagine just how long it would take me to return to feeling well and 'normal' again. This experience made me realise how important it is to have contact with other sufferers who have been in the same situation, to be able to chat about my concerns was so beneficial.

My operation was a total success, although after experiencing some acute back pain, another M.R.I. scan revealed that I also had syringomyelia which had not been obvious on my original scan. My recovery was slightly hampered, but after 18 months of gradual progress and a lot of help from my family and friends, I no longer felt as though I was walking through treacle and life returned to normal. At long last I could do all the things with my grandchildren that I had missed so much!

During my recovery I was so enormously grateful for all the help and support I received from the Trust, I felt a great need to put something back. Graham suggested that I join the committee of the Ann Conroy Trust and I became aware of the great need for more research into syringomyelia and also the need for information about the condition, both to sufferers and the medical profession. I embarked on some fund raising events, Tony became involved and felt that he could offer his business skills to the Trust and was elected Chairman last year. We are both doing our utmost to raise the profile of the Charity and to encourage fundraising. We both know how critical it is to support Graham with his research programme and to set up a nationwide support system for sufferers.

My story is a happy one with a very positive outcome, I have a wonderful husband and a loving and supportive family, I know that I have been very lucky and I would like to think that my experiences might help others in some way. I have had successful surgery but the subsequent diagnosis of Syringomyelia has made me realise how much need there is for research into the condition and for support to both sufferers and their families. I am presently setting up a group for sufferers in my area so that we can meet, to support each other and perhaps raise funds for the charity, which will hopefully benefit us all.