Neurological Foundation - Chair of Neurosurgery

There are no bandages or tell-tale signs

Irene's Story

“I first became a supporter of the Neurological Foundation in 1996  when my father was struck down by a stroke after a silent heart attack. My father was a fit, healthy, strong, articulate 64-year-old, who was a leader in the New Zealand meat industry and often laughed that his doctor said he had a heart like a horse. Until this happened, I thought that a stroke was an elderly ladies’ illness and did not realise that they could strike at any age or stage of one’s life.

"I was astounded at the way the stroke changed my father from someone who was articulate, respected around the world, had dined with the Queen, and negotiated the sale of New Zealand meat with world leaders in the 1980s, to a frail invalid, almost overnight. The change was so fast and radical.

"He was left unable to speak or walk. We supported him through six months of intensive therapy, which in hindsight gave me the realisation that my dad would not be around forever and this was a really special time for us. He regained his ability to walk a little, but not to talk. He could say yes, and it was amazing the conversations we were able to have based around this one word and gestures.

"It was painful watching the frustration and the determination that he had in trying to get better. Sadly he died six months later from a second heart attack. 
This personal experience made me realise the importance of the Neurological Foundation and the need for individuals to support the research and training of people in this field.

"Since then, I have sadly  seen first hand the impact of a range of  neurological conditions on family and friends.  The devastation  not just for the suffer, but also family and friends  when their loved ones suffer from  neurological illnesses is huge and yet unlike many other illnesses there are no bandages, or tell tale signs to let people know that someone is ill. ‘It is all in their head’ so to speak. 

"I have found that people don’t know how to deal with it. They’re not sure what to say or what support they can give. It amazed me the way someone’s brain can get so out of kilter, it can think some things quite clearly, but be completely scrambled on other thoughts. Or able to think clearly one minute and make no sense the next. This experience left me with a new interest in the workings of the brain and understanding the complexities of it.

"The brain is such a complex piece of equipment, it fascinates me."

While I had experienced the pain of  having family members with neurological conditions, I had not experienced the roller coaster ride that ones life becomes when you have a  child with a life threatening condition requiring surgery. This changed in  2003  when one of my children was diagnosed with a juvenile nasal angiofibroma. This is a rare condition where a vascular tumour grows in the cavity behind the nasal passages. While not malignant, this tumour is invasive and can grow around vital arteries and even into the brain.  Waiting while your child is in surgery for eight hours having their face peeled back  above the jaw and their cheek bone removed  to gain access to the inside of the head, is not something one wishes for their children.  Fortunately children are resiliant and initially life seemed to be back to normal,  but 12 months later, another tumour was found. We had to go to Christchurch for surgery as the tumour was in a different part of the head and there was a fear that it had progressed to the brain.

"This time they used what we jokingly  called the 'flip top jaw' method where they cut horizontally through the upper jaw to drop that down and allow entry to behind the nose.

"Fortunately the tumour had not spread to the brain and they thought they had successfully removed it all.

"Six months later we were devastated to get the news that the tumour seemed to be growing back. The surgeons  were keen to attempt to remove this again, but, by this time, we had real concerns about our child’s ability to cope with more, such invasive surgery.

"On talking to a friend in Australia, she suggested we send scans to a friend of hers in Sydney who was a specialist in this field. We liked this idea as the equipment they had in Australia  at that time, allowed less invasive methods of surgery than  was available in the South Island. With modern technology,  we were able to get scans on a CD and posted to Australia. After a phone consult with the specialist he agreed we should travel over for an appointment with a view to operating.

"We headed to Australia in anticipation that the problem would be fixed. I still remember when we were told that they couldn’t operate as the tumour had grown and was wrapped around both the estuation tube and the carotid artery and it was too risky for them to attempt. The surgeons had offered to see if a specialist in Adelaide was prepared to operate. We had a worrying 24 hours while we sat in Sydney waiting for the word – yes or no.

"He agreed to see us so it was more bookings and on a plane to Adelaide. We stayed at Ronald McDonald house, these are such wonderful facilities as we knew no one and had nowhere to stay, but they took us in. We were told there was a high risk of stroke with the surgery and that because of where the tumour was, there could be hearing loss. Fortunately the surgery was successful. We flew home five days later and we've seen a full recovery. Amazing!

This experience has shown me first hand, the importance of research  looking at new techniques and ways of dealing with conditions. 10 years ago the chance of surviving this type of condition was far less and our family would be facing life without one of our children rather than enjoying life with them as they grow into an adult.

The new Chair in Neurosurgery will  help ensure that  families like my own,  will see  better outcomes  for their own family members.  With vital research being conducted here, and a real focus on improving services offered by having a team of  specialised surgeons spread across both Christchurch and Dunedin, the whole South Island will benefit.  the position will help  attract top class neurosurgeons to the South to take advantage of the research facilities available, it will make a real difference to those suffering from conditions of the brain, head and spine. These can be such  devastating conditions for everyone involved.”