Lynn Burton: A personal account of living with Chiari

Lynn’s ability to support and empathise with other people was born, at least in part, out of her own experiences of living with Chiari and syringomyelia. In common with those of many others, Lynn’s recollections were not always happy ones. She gave an account of these in a lecture that she delivered, first to our Nurse Training Day, held in Sheffield in June 2012, and subsequently at our annual patient meeting, held at Ryton Gardens in September of the same year. Lynn later refined this account, to be one of four personal stories forming part of a chapter entitled “Patient perspectives”, included in the monograph “Syringomyelia: a disorder of CSF circulation” published, with support from the Ann Conroy Trust, in 2014. This book in now copyright to the publishers and large parts of its content cannot, therefore, be reproduced in full. Below, however, is a summary of the main points that Lynn made, in this and her earlier accounts.

Lynn’s Chiari symptoms began when she was in her twenties. At the time they were regarded as being migraine and this, of course, is something with which many readers will be familiar. Migraine is, after all, a very common condition, much more common than Chiari, and always likely to be a doctor’s initial clinical diagnosis, for long-standing headaches. Amongst her many talents, Lynn was an accomplished singer and entertainer and she described how her first Chiari headache came on while “I was working as a singer and the ‘migraine’ followed a new dance routine”. Significantly, this dance routine “included movements in which I bent my head forwards”.
Lynn, seemingly, was not troubled further until her early thirties. This is fairly typical of Chiari malformation. The average age of clinical presentation is in the middle of the fourth decade of life, although there is a wide age range around this mean. Lynn spoke of how, when she bent over to lift her new-born daughter out of her Moses basket, “my head suddenly pounded and I couldn’t move”. When the discomfort persisted into the next day, Lynn consulted her family doctor, who diagnosed cervical spondylosis. We recognise that, with some ladies, childbirth is what first precipitates the onset of Chiari headaches but this is far from always being the case. Curiously, as Lynn goes on to relate, she later gave birth to a son “with no post-natal problems”.
Over the following years Lynn developed various sensory disturbances, affecting various parts of her body; “tingling in my face, and around my mouth, tingling in my fingers, blurred vision and a feeling that my spine pushed into my neck whenever I walked”. Then, in 1998, Lynn experienced, for the first time, how laughing could bring on severe discomfort – “my head pounded with pain”. She needed to hold the back of her head. Sadly, despite her undergoing numerous operations to remedy this problem, Chiari headaches brought on by laughing continued to plague Lynn throughout her life. Those who knew her witnessed how Lynn, nevertheless, refused to let these wretched headaches stop her from laughing with her friends and enjoying life.
Unfortunately, form this point onwards, Lynn’s headaches “didn’t go away”, and became a regular part of her life, occurring “almost daily”. The sensory symptoms in her body also returned and persisted. She began, also, to experience “balance problems and blurred vision”. In 1999 Lynn saw a rheumatologist and was diagnosed, first with fibromyalgia and, later, with rheumatoid arthritis. She was treated with steroids, without benefit, before being suspected of having multiple sclerosis; many readers may nod their heads, in recognition, at this point. After treatment with more steroids, then amitriptyline, then tramadol, Lynn was investigated with an MR scan, which revealed her Chiari malformation. At this point Lynn’s experiences became somewhat negative. Instead of receiving, finally, a clear explanation for the symptoms that she had experienced for so many years, Lynn was left with the belief that the Chiari was an incidental finding. Worse still, she was left with the feeling that she was seen as a neurotic individual and that “all my symptoms were psychological”. She was even referred to a psychiatrist, an event which she described as “a low point for me” causing her, for the first time, to shed tears. Happily, the psychiatrist reassured Lynn that she was quite sane and her symptoms were not psychological in nature. He family doctor was also supportive, referring Lynn to another neurologist, in London, who seemed to be much more attentive to the Chiari malformation.
Inevitably, Lynn then consulted the internet and read about “a serious and complicated condition” that, if left untreated “can lead to total and permanent paralysis”. This was an experience that Lynn was to witness in others who would, years later, call her, in distress, on the Ann Conroy Trust helpline. Fortunately, in Lynn’s case, her medical advisors gave her a “far less sensational” explanation, allowing her to make some rational decisions about treatment.
Lynn’s first surgery followed, a craniovertebral decompression in 2005. She described her experiences, waking up in the darkness of an intensive care unit after the operation, thinking at first that things had gone wrong and that she had been “sent down to you-know-where”. Lynn did not do as well as she had hoped after her operation, which is why she was always at pains to give people a balanced view about surgery and what it might or might not achieve, in individual cases. She encouraged people to ask questions of their surgeon, before making a decision about surgery.
Lynn subsequently underwent several other operations, over the years, in attempt to help her symptoms but eventually accepted that most of them were to be part of her life. Her account spoke of how “I now still have ongoing problems”, issues to which Lynn became resigned and with which she learnt to live. Lynn went on to help others to do the same thing, when surgeons and physicians could do no more.
The final paragraph of Lynn’s account begins by saying that her Chiari malformation “has without a doubt changed my life”. It goes on to list some of the limiting effects that the condition had on her life. Notwithstanding these, Lynn said that “I nevertheless maintain a positive outlook”. Those who knew Lynn and who benefitted from her counsel, will have witnessed this. Lynn’s concluding remarks were that she knew only too well, “what a scary and lonely place the world is”, after a diagnosis of Chiari malformation is made.

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