Throughout her early teenage years, our youngest daughter, Lucie suffered from unexplained headaches, back & neck pain, unusual sensations in her left side and some loss of feeling in left arm & hand. 

Lucie was a Fun loving, gregarious & energetic teenager and despite seeing GPs on many occasions and describing all of her bewildering symptoms, to the doctors she always appeared to be fit and healthy. 

After several visits she was referred to NHS physiotherapists who, during their hurried 20-minute sessions, generally advised her to try different exercises to improve her posture. This went on for several months with symptoms gradually worsening and often becoming very alarming. 

Eventually, out of desperation, we sought help from a private physiotherapist. Thankfully, within minutes of starting to assess her, this lady realised that Lucie had no reflex response in her left leg. As a result of this discovery Lucie was referred to a Neurologist/Neurosurgeon who arranged an MRI Scan on her neck & spine…. 

A week later, we returned to the hospital and the brilliant but very matter of fact Neurosurgeon told 15 yr old Lucie …

“You do have an issue… It is serious; but it isn’t going to kill you! However, without intervention the condition will progress & it is likely that you will become disabled in years to come. There is no cure for the condition but with surgery, I can hopefully arrest it’s progress and prevent further neurological deterioration”  (This is not verbatim but are the bits that I, as a distressed parent, will probably never forget!)  

We learnt that Lucie had a rare condition known as an “Arnold Chiari malformation” of her brain (sometimes referred to as a hind brain hernia). In layman’s terms this meant that the lower portion of Lucie’s brain was too big for her skull and consequently, part of her cerebellum was being squeezed down into her spinal canal. As a result of this, her cerebral spinal fluid (CSF), which should be able to flow freely down the spinal cord, was restricted, leading to raised pressure inside her head. This in turn had lead to another associated rare condition known as Syringomyelia where a “Syrinx” (or fluid filled cyst) had formed inside her spinal chord. 

Once established, a Syrinx tends to expand over time, compressing or destroying the surrounding nerve tissue. Common signs & symptoms of a syrinx include pain in the neck and shoulders, muscle weakness, pain and stiffness in the legs, numbness or decreased sensation. 

3 days after her 16th birthday Lucie underwent decompression surgery on her foreman magnum. This procedure aims to create additional space inside the base of the skull to allow the CSF to flow more freely down the spinal cord. It was hoped that this surgery would lead to a gradual shrinking of Lucie’s Syrinx... Unfortunately, following further MRI scans, the surgeon was still unhappy with the size of the syrinx. So, 8 months after her initial surgery Lucie returned to the operating table, this time to have a “shunt” inserted into her spinal cord to drain fluid from the Syrinx. It was always made clear that this shunt (which would remain in place in her spine, draining into her abdomen) would not work forever and might have to be revisited in later life.   

Lucie bounced back from her first operation in less than 4 weeks and to our amazement was fit enough to commence her first year of sixth form in early September. However, recovery from the second operation was much more challenging and in addition to very significant neck & back pain Lucie would often sleep for most of the day and night.  

With AS & A levels on the horizon, these new symptoms were particularly difficult for Lucie to manage and necessitated her having a lot of time away from school.

She was subsequently diagnosed with Chronic fatigue syndrome, which we now understand is quite common with spinal cord injury.  

Fatigue continued to be one of Lucie’s most visible symptoms and has at times made her life & career choices more complicated than those of her peers.

After taking a deferral and an extra year to finish her A levels, Lucie was very nervous about pursuing further education, anticipating that she would struggle to keep up with a university workload. So she chose to work part time in retail for nearly 3 years.

However, at the age of 22, Lucie decided that she was ready for the challenge and secured a place at Birmingham City University, to study textile design. During that time she would often spend the whole day at college working and the remainder of the day sleeping to recover!  

I’m proud to say that Lucie graduated with a BA Hons in 2019. 

Since her operations, Lucie has continued to have annual MRI scans to keep an eye on the status of her syrinx. 

She continues to live with significant back & neck pain, lack of feeling in her left side, pins & needles in hands and arms and shooting pains. 

In recent years, during annual appointments with her Neurosurgeon, (despite always recounting her numerous symptoms) she has been advised that, unless her condition deteriorates significantly, there are no further surgical interventions, which are likely to reduce her symptoms. She has to try avoid straining so shouldn't, for example, lift heavy loads but otherwise the advice is  “live your life”….

Fortunately, by nature, Lucie has always been a predominantly upbeat character and we’re very proud of her determination to enjoy life to the full.

Lucie now works as a wardrobe mistress. Having always been very interested in clothes and costume, she had long held the ambition to work in theatre wardrobe. She has already worked in several theatre productions in London & the Cotswolds. Of course this work often involves long hours but she really enjoys the “ buzz” of the role. Rest days for Lucie will normally involve extensive sleeping but she remains determined to follow her dream. 

Hopefully with the help of The Ann Conroy trust, on-going & future research will continue to help people living with Chiari Malformation & syringomyelia to live a better quality of life. 

Your donations would be much appreciated.