Joan Purvis

In January last year my GP picked up that I was experiencing a loss of balance and couldn't walk in a straight line. She referred me to a specialist, who ordered an MRI scan. When I returned to the specialist for the result, I thought he would tell me I wasn't walking well because I was getting older - I was 73. Instead, he told me the MRI showed I had a Chiari I malformation at the base of my brain and a syrinx in my spine.

Internet 'scared me'
I was flabbergasted. I didn't know what it all meant as I hadn't heard these terms before. I went home and looked the condition up on the internet, where I found that Arnold-Chiari is a congenital brain defect that causes the bottom part of the brain (cerebellum) to lie in the upper part of the neck instead of within the skull. This obstructs the flow of cerebrospinal fluid.
The rest of what I found scared me so much that I turned off the computer. At the mention of an operation on some of the sites, I freaked. I trained as a nurse many years ago, and well remember the neurosurgical ward.
There were sites that had "wrong diagnosis" in the headings and that put me off too. There was even a site "Chiari in a King Charles Spaniel"!
The specialist referred me to a neurologist. I couldn't get an appointment for three months. When I saw him, he told me that he couldn't help me and my walking would only get worse. He referred me to a neurosurgeon and I knew what this meant: an operation.

The neurosurgeon explained that surgery would give the cerebellum more room in the base of the skull and neck, and improve the flow of cerebrospinal fluid at the same time. He couldn't guarantee I would be 100 per cent well again, but said things would improve.
I really was still in the dark a bit. It was only after the operation that I found some better websites and researched more. (See More info links below.)
It seems I was born with the condition and symptoms such as mine usually appear in mid-life. I said I was past that stage, and the neurosurgeon said: "Well, you've been lucky", and if I had concerns I should take it up with the manufacturers!
At the end of May 2007 I was admitted to hospital for a procedure described as a cranio/spinal decompression of the brain and clearance of membranes.
All went well and my surgeon was very attentive. Unfortunately, I developed a condition due to low sodium levels and was quite ill. I spent three weeks in hospital before being sent to a wonderful rehabilitation facility.

Regaining confidence
In the months leading up to my diagnosis, I lost confidence in my ability to walk. The intensive physio and occupational therapy I received at the rehabilitation hospital helped me to regain some of that confidence. After almost three weeks of exceptional care from the staff, I was discharged.
Before I came home the occupational therapist visited my house with me and suggested ways to assist me in living safely. Now, I have rails in the shower and at the front and back doors.
On reflection, I realised I must have had the condition for some time. I had been a bushwalker and done aerobics, but hadn't been able to do the balance exercises in the latter half of 2006. Also, several years previously I had been asked to do the drunk's walk in a party game and hadn't been able to balance. (I wasn't drunk!)
I was a very healthy person until I turned 70, but after that a few medical problems arose, including high blood pressure, shingles and sinusitis, which improved after an operation. Eight months after the neurosurgery to correct the Chiari malformation, I still experience a few problems, which my specialist physician is following up on.
But I am grateful to have a GP who picked up my weird gait, for the introduction of the MRI machine and for very capable medical staff.
Twenty years ago I would have been thought of as someone who'd had too many drinks. Now I can walk a straight line again. I do get tired, but that is only natural.
The internet really didn't help me in my quest to find out more about the condition, and it is only in the last month or so that I have come to understand it. I hope that anyone diagnosed with this condition takes heart from my experience.