Kathryn Williams

Me & Samii
Professor Madjid Samii & Kathryn Williams
International Neuroscience Institute,
Hanover, Germany
December 2006

34 years old

In June 2005, I was diagnosed with a large left Occipital Parietal Arachnoid Cyst on the brain.

I was 34 years old.

The discovery was made after I slipped on a living room mat. Within twenty minutes I began to go numb down the right side of my body, starting at the top of my face and my hand up into my arm. I noticed what I would later describe as a feeling of 'weakness' come over me. Assuming a concussion, I took panadol and went to bed.

The following morning I went to the After Hours Medical Centre where I was referred to the hospital. I was not allowed to drive. I relayed the events of the previous evening to three different A&E doctors, over a period of 5 hours, before it was decided an urgent CT Scan would be arranged for that week.

I was called by my GP's Receptionist a week later to come in and discuss the CT Scan results. My GP had never heard of an Arachnoid Cyst and  I was referred to a Neurosurgeon at Wellington Hospital, Mr Martin Hunn.

There didn't seem to be much information on Arachnoid Cysts, which increased my anxiety and concern at being diagnosed with the condition. I found medical appointments challenging, dealing with an uncertain prognosis and feeling there was a lack of clear, concise information available.  It seemed the approach by clinicians to arachnoid cysts was a 'wait and see approach'.

With no clear indication of what to expect in the future, except the cyst was classified as asymptomatic, with no reason to believe it would not continue to be so;  my specialists feedback was futile in allaying the fears I had developed emotionally and psychologically in response to the diagnosis.

Of course many questions arise with a diagnosis.

Was I born with the cyst? Did the cyst develop from a head trauma that occured in my childhood of which has long since been forgotten? Did the cyst develop from an infection, also long since forgotten?

In September 2006 I travelled to Sydney to consult with Professor Marcus Stoodley, a Neurosurgeon with an expertise in cyst formation and had worked with my Neurosurgeon in London.  His recommendation was that it required treatment. However, my Neurosurgeon did not concur.

So in November 2006 I sent my scans to the International Neuroscience Institute in Hannover, Germany. for a third opinion.  I had been told about the Institute by a New Zealander who had surgery there for a brain tumour, an Aucoustic Neuroma.

The International Neuroscience Institute is one of the worlds leading centres for the treatment of diseases and disorders of the nervous system. In collaboration with the Medical University of Hannover and specialists of external institutions, highly specialized medical teams are assembled to treat special disorders. The Director of the Institute, Professor Madjid Samii took my case.

Professor Samii proposed a fenestration; removal of the Arachnoid Cyst ‘wall’ in an attempt to re route the CSF fluid through the chambers of the brain.

On the 4th December 2006 I flew to Germany. The costs were financed privately, not by an insurance company or the public health system, but by private donations.

The fenestration was unable to be performed due to the 'mass' of the cyst; instead a cystoperitoneal shunt was inserted to relieve the pressure of the cyst on my brain.

 What Have I Learnt?

  • Lifestyle is the single most important factor influencing wellness in Arachnoid Cyst patients
  • A diagnosis does not define anyone
  • Everyone has a choice as to how they respond to being diagnosed with an Arachnoid Cyst
  • Everyone has the capacity and ability to create plans/strategies that are right for them to better cope and manage their everyday lifestyle in a manner that works for them.
  • Everyone needs help to achieve and maintain wellness
MRI Image of Kathryn Williams - Large Left Occipital Parietal Arachnoid Cyst

Cyst is the light grey area on the right of the brain image. This is the left hemisphere of the brain. The image shows how the cyst has pushed the left hemisphere of the brain up to make space for itself. (Left Hemisphere of the brain is pictured on the right hand side of the image).

MRI image of the arachnoid cyst.