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 syringomyeliaA cavity, within the spinal cord, which is filled with cerebrospinal fluid. Syringomyelia cavities come in various “shapes and sizes”, from short, spindle-shaped cavities through to long, tense cavities extending throughout the greater part of the spinal cord. Read more. 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 “SyringomyeliaA cavity, within the spinal cord, which is filled with cerebrospinal fluid. Syringomyelia cavities come in various “shapes and sizes”, from short, spindle-shaped cavities through to long, tense cavities extending throughout the greater part of the spinal cord. Read more: a disorder of CSFCerebrospinal Fluid (CSF), is a clear, colourless liquid that fills and surrounds the brain and the spinal cord and provides a mechanical barrier against shock. Formed primarily in the ventricles of the brain, the cerebrospinal fluid supports the brain and provides lubrication between surrounding bones and the brain and spinal cord. When an individual suffers a head injury, the fluid acts as a cushion, dulling the force by distributing its impact. The fluid helps to maintain pressure within the cranium at a constant level. An increase in the volume of blood or brain tissue results in a corresponding decrease in the fluid. Conversely, if there is a decrease in the volume of matter within the cranium, as occurs in atrophy... 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 clinicalDerived from the Greek term for a bed, this word refers to activities, or diagnoses made on the basis of talking to and examining a patient. It should precede any special investigations, which are directed by the clinical findings. Latterly, the word has been adopted and distorted, in a rather curious way, by football commentators. 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 malformationAn anatomical abnormality affecting the lowermost part of brain, where it joins the spinal cord, at the top of the neck. Various sub-types are described - see under their individual names. The term hindbrain hernia is sometimes used to incorporate all forms.. The average age of clinicalDerived from the Greek term for a bed, this word refers to activities, or diagnoses made on the basis of talking to and examining a patient. It should precede any special investigations, which are directed by the clinical findings. Latterly, the word has been adopted and distorted, in a rather curious way, by football commentators. 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 cervicalThe word cervix means neck. We all have a neck, holding up our head. Ladies, in addition, have a neck (cervix) to their womb. The word cervical therefore refers to the neck. Ladies, at a certain age, are offered cervical screening – formerly known as smear tests. People with neck problems are sometimes given a collar to wear, commonly referred to as a cervical collar, although this is an unnecessary duplication of words; where else would a collar be worn? spondylosisTranslated from the Greek, this word (“spondyl” + “osis”) should really refer to any disease process affecting one of the vertebrae, or the spinal column more generally. It could, therefore, refer to infections, injuries, tumours or any other disease processes. In practice, its use is reserved to refer to degenerative, age-related changes. Doctors often use the term “arthritis”, to refer to spondylosis but this can sometimes cause alarm to a patient, who then fears the onset of more generalised arthritis. Whilst inflammation of the small joints in the spine is indeed part of the “wear and tear” changes of advancing years, it does not, by any means, indicate the onset of more widespread joint disease, elsewhere in the body.. 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 amitriptylineA drug originally developed to treat depression but which can also be used, in smaller doses, to treat neuropathic pain., then tramadol, Lynn was investigated with an MR scan, which revealed her Chiari malformationAn anatomical abnormality affecting the lowermost part of brain, where it joins the spinal cord, at the top of the neck. Various sub-types are described - see under their individual names. The term hindbrain hernia is sometimes used to incorporate all forms.. 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 malformationAn anatomical abnormality affecting the lowermost part of brain, where it joins the spinal cord, at the top of the neck. Various sub-types are described - see under their individual names. The term hindbrain hernia is sometimes used to incorporate all forms..
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 decompressionA surgical operation which aims to expand the internal dimensions of the craniovertebral junction and, thereby, relieve compression of the neural elements within, and/or to improve the flow of cerebrospinal fluid across the craniovertebral junction. 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 malformationAn anatomical abnormality affecting the lowermost part of brain, where it joins the spinal cord, at the top of the neck. Various sub-types are described - see under their individual names. The term hindbrain hernia is sometimes used to incorporate all forms. “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 malformationAn anatomical abnormality affecting the lowermost part of brain, where it joins the spinal cord, at the top of the neck. Various sub-types are described - see under their individual names. The term hindbrain hernia is sometimes used to incorporate all forms. is made.