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. For five years prior to that I had experienced a range of symptoms. Initially I noticed pains in my right wrist and numbness in my little finger and was told that I had repetitive strain injury from playing the violin. I was given splints for my wrist and even spent a week in hospital trying out a variety of physiotherapy techniques. The pain, numbness and weakness progressively worsened and moved to my neck and shoulder, making it so painful to play the violin that I eventually had to give up. This was a real blow as music had been my life. I'd played the violin since the age of six and was in the process of studying for a Music degree at university.

Thankfully I made it through my degree and moved to Oxford to work in music publishing. By then typing and writing had become quite painful, but it was something I'd had to get used to. In January 1999, however, I developed further symptoms: a lack of sensation (hot, cold, sharp, dull) in the right side of my face, and down the right side of my body, feeling totally washed out. I had no energy and took two weeks off work thinking I had 'flu. I'd also burnt my wrist without knowing it and my weak voice turned out to be a paralysed vocal cord. My GP referred me to the JR hospital, and after a series of tests in the neurology department I was told that I had syringomyelia. In fact it was the MRI radiographer who, straight after the scan and on my own, told me the results. Prior to this I'd never heard of this condition, so when the radiographer wrote 'syringomyelia' on a scrap of paper for me to take away, I naively did a search on the internet at work that afternoon. I was totally unprepared, and to be honest distraught, with what came up on the internet. It was then quite a few months before I could talk to a neurosurgeon at the hospital to find out exactly what could be done.

I had successful decompression surgery in October 1999 spending 11 days in hospital, and was then looked after by my parents for the next three months before returning to work. Looking back this was a difficult time for us all, and I'm very grateful to my parents for their unfaltering love, care and support throughout the whole time. The road to recovery took some time, but I'm pleased to say that subsequent MRI scans have shown that the syrinx on my spine continues to be much reduced. I have annual hospital appointments and have also met with Mr Flint in Birmingham at his clinic. I've also had voice and speech therapy to help strengthen my voice and acupuncture to help with my neck and arm pains.

Ten years later I am now the proud mother of a beautiful baby boy, and yet again, very pleased with the care I received from the JR hospital, this time their maternity unit. Joshua was born on Mother's Day this year by planned caesarean section: a perfect Mother's Day gift! I was treated under the special Silver Star Unit, and following several lengthy appointments with obstetricians and anaesthetists was advised that delivery by caesarean (general anaesthetic instead of the usual spinal epidural) would be the safest option. Any other delivery risked undoing the good from the decompression surgery.

My parents, Cheryll and Michael Pidd, are life members of the Ann Conroy Trust and raise money from sales of homemade Christmas/Birthday cards and gift tags (often made in January in good time for the following Christmas!). As a sufferer it's great to know that the Ann Conroy Trust is there if I ever need support and the website is a wonderful resource for those who are interested in learning more. Apart from being careful not to overdo the lifting with Joshua, I feel very well and would recommend the surgery. My symptoms have stabilised and most of the time I can forget about the condition and focus on the important things in life: my new family with my husband, Adam.