It was in October 2012 that our 17 year old daughter Georgia was diagnosed with 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. and related 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.  

Georgia had been experiencing various health issues since she was 15 years old, and now looking back, probably before.  We had many visits to the GP with referrals to different specialists including a neurologist.  She had two MRIAn abbreviation for magnetic resonance imaging. scans, a barium meal, x rays, nerve testing amongst other tests.  Lots of different conditions were picked up including scoliosisA curvature of the spinal column, which commonly develops during adolescence. Many cases are idiopathic but some may be caused by, or at least are associated with syringomyelia. It is currently unclear as to whether Chiari malformations alone can cause scoliosis to develop. and a low moving colon, but nothing that explained all her symptoms.  It was eventually concluded by a Neurologist that Georgia was suffering from anxiety and stress related to school/college pressure and exams and that her MRIAn abbreviation for magnetic resonance imaging. scans showed nothing unusual.

We felt very confused and helpless.  Georgia was experiencing sudden shots of pain; her hand was numb and she often felt nauseous.  Her balance was also not good.  She was under a lot of pressure at school and put herself under pressure too, so we felt that perhaps this ‘diagnosis’ of anxiety/stress could be true.

However, her symptoms continued and worsened so we asked for another MRIAn abbreviation for magnetic resonance imaging. scan.  This time the radiologist who was interpreting the results. Noticed the Chiari.  It had also showed on the previous scans but was not picked up – probably because the symptoms did not quite fit and Georgia had never experienced a headache!

Georgia was immediately referred to a Neurosurgeon who, because of the fact that fluid was being pushed into Georgia’s spinal cordThe main nerve trunk running down the spinal canal and connecting the individual’s mind and consciousness to the rest of his or her body. It is about the size of a person’s little finger, in diameter. It cannot repair itself if damaged. – a condition called 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, put Georgia onto an urgent list for an urgent decompression surgery.

We all felt shocked, upset and worried.  To go from a diagnosis of anxiety to the need for neurosurgery was a lot to take in.  Georgia received her appointment through the post on her 18th birthday.

We, as her parents, felt so guilty.  Georgia was a teenager at the time and we all know that teenagers have lots of different struggles with hormonal changes and social and academic pressures.  When we were told her symptoms were most likely caused by anxiety, we did believe this might be the case.  However, I am so glad we did keep pushing for more tests.  I just remember feeling so confused and stressed – not knowing how best to support her or what to think.  It was almost a relief to have a diagnosis.

A friend of ours did some online research for us and found the Ann Conroy Trust.  We were so relieved because some of the research we had done had come up with stories that were not reassuring.  The Ann Conroy Trust helpline, run at the time by a wonderful lady called Lynn, helped us by listening and signposting.  Talking to someone who has experienced what you are going through and knows the conditions you have been diagnosed with is so helpful. 

Georgia had her operation six weeks after being diagnosed.  Her surgeon, as well as being incredibly skilled, was so kind to her and to us and the operation was successful.  The decompression worked and the fluid in her spinal cordThe main nerve trunk running down the spinal canal and connecting the individual’s mind and consciousness to the rest of his or her body. It is about the size of a person’s little finger, in diameter. It cannot repair itself if damaged. drained away.

Georgia will always have symptoms of Chiari and from the damage caused by the fluid in her spinal cordThe main nerve trunk running down the spinal canal and connecting the individual’s mind and consciousness to the rest of his or her body. It is about the size of a person’s little finger, in diameter. It cannot repair itself if damaged. but the operation prevented the condition from worsening.  

It was a long road to getting ‘well’ again.  With pain management, counselling and support from the Ann Conroy Trust Georgia got back on track and is now working full time as a journalist for The Times. Yesterday, she had her first front page article.  

I believe a helpline is so important to help people like us and like Georgia.  Not to provide advice because we all have to make our own decisions, but to listen and signpost and to just be there for people who have had their own diagnosis and are feeling as scared and confused as we were.

I hope that the small amount that I can offer will help others in the way that Lynn helped us.