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Deborah Johnston’s Hereditary Brain Aneurysm Journey

Deborah Johnston's life took a sad turn when her mother passed away from a brain aneurysm when Deborah was very small. Doctors explained that this was likely to be ‘bad luck’ or a ‘one-off’, but little did she know that the hereditary nature of this condition would weave itself into the fabric of her own health journey and leave Deborah facing a brain aneurysm in later life too.


A photo of Deborah Johnston, smiling at a work event
Deborah Johnston

 

Deborah's family had a history of polycystic kidney disease, a hereditary ailment that had affected her sister. In her 20s, Deborah, too, discovered she had kidney disease during a visit to the doctor for stomach pain. However, the discovery of a potential brain aneurysm would add another layer to her health challenges.

 

Balance problems and persistent headaches led Deborah to a neurologist. Given her family's history of aneurysms and kidney disease, a brain scan was recommended. A subsequent letter urging her to contact radiology heightened the anxiety, leaving Deborah very worried.

 

At a friend's house, Deborah received a phone call from the doctor, telling her that she had a brain aneurysm.  Deborah said: “The doctor let me know that the brain aneurysm was sizeable and could burst at any time. The diagnosis was completely matter of fact and I was left not knowing where to turn for help and support.”


Surgery or 'watch and wait'?

 

Deborah faced the challenging decision of when to undergo surgery. With her daughter due to have a baby and her son's wedding approaching, timing was crucial. Deborah opted to ‘watch and wait’, receiving close monitoring. After the birth of her grandson in September 2015, Deborah underwent surgery. The procedure was successful, but the recovery was demanding, requiring lots of physiotherapy to help her return to good health.

 

Post-surgery, Deborah grappled with challenges, including sensitivity to light and noise, and difficulties with numbers (perhaps because the brain aneurysm was situated on the communicating artery). Surprisingly, there was no aftercare provided for these effects. Persistent headaches plagued her for years, leading her to seek support from a group for aneurysm survivors. Deborah says

 

“The doctors were wonderful but there really isn’t any after care, to help understand the challenges we might face and how to deal with them. Support groups like HBA Support, and others online, have been a real lifeline and the sense of community is really helpful.”


Connecting with others

 

Despite the physical and emotional challenges, Deborah found strength in connecting with others who shared similar experiences within the support group. Her journey through crippling headaches led to the formation of meaningful friendships and a shared understanding of life after brain aneurysm surgery. It’s also prompted her family members to think carefully about their own journeys. Understanding the hereditary nature of the condition, Deborah’s daughter has been tested, and has fortunately shown no signs of having an aneurysm, and her second eldest son is being tested now.

 

Deborah Johnston's story is one of resilience, courage, and the strength to confront the challenges of living with a brain aneurysm. From the discovery of the aneurysm to the decision-making process and the post-operative hurdles, Deborah's journey underscores the importance of early detection, informed decision-making, and the support of a community facing similar struggles. Through it all, Deborah's ability to navigate adversity and build connections stands as a testament to the power of resilience in the face of brain aneurysm challenges.




Resources and support


If you have any health concerns related to the topics in this article, please speak to your GP or a clinical professional.


Visit our Support page for free resources for people recently diagnosed with an hereditary brain aneurysm:





Polycystic Kidney Disease UK website, https://pkdcharity.org.uk


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