Following our recent awareness post about brain aneurysms, we share the story of Headway Gauteng client Anton van Niekerk, a South African stroke survivor whose aneurysm rupture in 2015 transformed his life. His story, featured in “Finding Yourself After Stroke” compiled by Letisha Living, offers insights for survivors and their families.
When everything changed in an instant
Anton van Niekerk was 43 years old, living in Johannesburg, when his life changed forever on February 22, 2015. Looking back, there had been warning signs he’d dismissed.
“I had been having headaches from about six months prior to having had stroke but thought I would have it checked out the next time I went for my full medical examination that April.”
What started as a quiet Saturday night of catching up on work became a medical emergency. Anton had decided to work late and sleep in the spare room to avoid disturbing his wife.
“I did not want to disturb my wife, I decided to sleep in the spare bedroom. I could not fall sleep, so I was watching videos on YouTube when I experienced a strange sensation spreading from my toes upward. When it reached my torso, I lost consciousness. I think it happened about 1am in the morning. When I regained consciousness, it was about 3am. I realised I was in trouble because I could not hear, see, move or speak.”
The life saving moment
What happened next shows how important it is to have someone who can recognise the signs and act quickly:
“I forced air over my vocal cords and tried to shout ‘HELP ME’ but only a faint whisper came out. The cats heard me and made enough of a ruckus to wake my wife up. When she heard the faint ‘help me’ coming down the passage, she knew something was wrong and rushed to the spare room where she found me almost paralysed, deaf and blind.”
Anton’s wife’s immediate response – calling an ambulance despite his claim it was just a headache – likely saved his life. The paramedics quickly identified what had happened.
From emergency to surgery and rehabilitation
At the hospital, doctors worked to understand what had happened. After initial tests including a lumbar puncture that revealed blood, a CT scan confirmed the severity of Anton’s condition. He had suffered both an aneurysm and arteriovenous malformation (AVM) rupture in his frontal lobe, with bleeding in two places in his brain. There was also a possible second aneurysm that would need attention later.
Anton was immediately transferred to Krugersdorp Netcare Hospital’s ICU, where he spent six weeks. The neurosurgeon was able to stop the bleeding, but Anton needed specialised intervention for the aneurysm itself. After consultation with specialists at Netcare Unitas Hospital, it was determined he would need a craniotomy.
“I had the craniotomy on Friday 05 March 2015. The surgeon removed the AVM and successfully clipped the aneurism, then on Thursday 17 March, I was transferred to the Netcare Rehabilitation Hospital in Auckland Park where the therapists determined that I would require approximately eight weeks of rehabilitation.”
The rehabilitation was intensive and comprehensive. Anton arrived unable to perform basic functions:
“I was wheeled into the rehab hospital in a wheelchair, I wore a nappy and couldn’t wash or feed myself. I had intensive Psych, Physio, Speech and Occupational therapies while in hospital. They discharged me from the hospital on Friday 24 April 2015 after 5 weeks, rehabilitation goals achieved. I could walk, talk, wash and feed myself and perform my ablutions.”
But his medical journey wasn’t over. A follow-up scan revealed the second aneurysm needed treatment:
“On Friday 22 May 2015 I went back to my surgeon for a check-up. They did another CT scan and confirmed there was another aneurism in the frontal lobe of my brain. I was sent back to Unitas, and the intervention team there successfully coiled the aneurism, so I didn’t have to have another craniotomy and all the rehab again.”
The road to recovery is never linear
Recovery from brain injury extends far beyond medical treatment, as Anton discovered when relationships and social connections became part of the challenge. Some people disappeared from his life entirely, while unexpected support came from others.
“I also lost a lot of my friends along the way. People who I thought was close friends just stayed away and eventually disappeared completely. There were a few people who I never expected anything from who stuck to my side throughout.”
Even family relationships were tested. Anton’s father struggled to accept what had happened:
“My father attended one of these meetings and never again. He never accepted my condition and wanted to know why this happened to me. The more I told him ‘why not’ the less he wanted to do with me.”
However, Anton’s life partner became his anchor throughout the entire journey:
“My life partner was amazing during this whole time. She researched every piece of information the doctors gave us to fully understand what was happening. She visited me every day, some days she visited twice if I’d forgotten she’d been there already and asked for her. She was with me throughout my rehab in hospital, coming every day to follow my progress.”
A crucial turning point came when Anton discovered Headway Gauteng:
“Through the rehab hospital I heard of a brain injury association called Headway Gauteng. I approached them for group therapy and once they approved me, I immediately started therapy sessions with them twice a week. The therapy consisted of group Biokinetics, Psych, Speech and Occupational therapy groups. I am still attending at present, although the sessions are online now, and will probably continue participating for the foreseeable future.”
The organisation became a lifeline that continues to this day, providing both therapy and later, volunteer opportunities that gave Anton purpose and structure in his new life.
Living with brain injury
Years later, Anton continues to navigate the lasting effects of his stroke. The changes aren’t always visible to others, but they require ongoing management and adaptation:
“The only real deficit I have now is executive functioning like planning, problem solving, decision making, headaches, emotional numbness and minor short term memory loss. My personality has also changed, but for the better.”
Managing these challenges requires structure and routine:
“Through this whole process we found that a strict routine works best. I keep my diary religiously and make lists for everything I want to do. I also take my daily medication at specific times and include a lot of supplements like magnesium, turmeric, zinc, multivitamins, antioxidants, etc.”
Anton has discovered that recovery doesn’t follow the timelines doctors initially predicted:
“My neurosurgeon said that my recovery should take approximately two years, and anything not recovered would probably never come back. I have experienced it differently. Because of neuroplasticity (neurons that fire together, wire together), you can still recover years after your initial insult. I am still improving, and it has been six and a half years already.”
Perhaps most remarkably, Anton’s perspective on his stroke challenges common assumptions about catastrophic illness:
“I truly believe the stroke was the best thing that ever happened to me. For the first time, my eyes opened to the world around me, and I could stand back, observe and enjoy what was happening to and around me.”
This transformation led to a new philosophy:
“At one point I decided that ‘from now on I am only going to be happy and positive’, and my life turned around. I now live in the moment with no worries about the future and no regrets about the past. I am just thankful that regardless of what happened to me, I did not lose my sense of humour.”
His advice to other survivors reflects both realism and hope:
“Don’t ever give up hope. Every day might seem like a struggle but in the end it is worth all the hardships. As I said before, this is the best thing that could have happened to me. Stay positive, always see the silver lining to the storm clouds and you will be happy.”
About “Finding Yourself After Stroke”
Anton’s complete story appears in “Finding Yourself After Stroke,” compiled by Letisha Living and published by Disruptive Publishing. The book features 26 personal accounts of stroke recovery, aimed at educating healthcare professionals and supporting young stroke survivors. While primarily published for the Australian market, it’s available in electronic format on Amazon.
If you or a loved one are dealing with the aftermath of a brain aneurysm, stroke, or any acquired brain injury, the team Headway Gauteng are available to offer you ongoing support through every stage of recovery.
Contact us for more information and to find out more about our supportive community.