The Brain Charity

In 2017, Beverly was living a fast-paced life working in the advertising industry.  

With over 25 years of experience, she had built a successful career, working with well-known brands and producing campaigns across TV, radio, and social media.  

That all changed when she was diagnosed with a cavernoma, a type of arteriovenous malformation (AVM). 

A cavernoma is made up of abnormal blood vessels and can be found in the brain and/or spinal cord. Symptoms vary depending on the location and size of the malformation, and can include haemorrhages, seizures, headaches, and neurological effects such as dizziness, slurred speech, double vision and tremors and weakness, numbness, tiredness, memory and concentration difficulties.

Beverly, from the Philippines, said:

“I used to pride myself for my unsinkability. I thought the movie Unbreakable was based on me until I was diagnosed It made me realize that I am not in control of what happens to me.

“When I was diagnosed, it made me realise I’m not in control of what happens to me. That despite everything I worked so very hard for to prepare myself for the future, I can never be really prepared for what is to come.” 

How cavernoma is diagnosed  

Beverly was diagnosed with a cavernoma in November 2017 after experiencing migraines since she was a teenager.

One day, during a meeting, she blacked out and couldn’t move. After this, Beverly went for an MRI scan which showed the tangle of abnormal blood vessels was located in her brain’s right occipital lobe.

It had already caused some small bleeds, and Beverly was told if she was left untreated it could lead to a more serious brain haemorrhage.

Beverly said: 

“That it is not a simple ‘treat and cure’ disorder. In fact treatment is selective and there is no real cure. That it impacts not only your physical health but it affects your emotional and social well-being as well.

“Paranoia is your bedfellow. People with an AVM may look perfectly normal, but they literally have a ticking time bomb in their head. 

“Knowing this time bomb could go off any time is an anguish they have to live with every day for the rest of their lives.” 

Understanding AVM and cavernoma 

Beverly learned that AVMs can occur anywhere in the body, but brain AVMs are particularly dangerous due to the potential for significant damage if they bleed.

Her doctors estimated that her cavernoma could bleed an average of twice a year, and although most bleeds aren’t severe enough to cause immediate damage, the risk of a large haemorrhage always loomed. 

There were two potential treatment options: cranial surgery, which is highly invasive, or radiation therapy (also known as radiosurgery or stereotactic surgery), which uses focused X-rays to shrink the AVM over time.

However, radiation therapy could take up to three years to close off the AVM, leaving Beverly at risk of further bleeds during that period. 

Beverly told us the hardest part about living with an AVM was the loss of her career. 

“The hardest part about living with AVM for me was my premature goodbye to a high-profile 25-year-old career, followed by the loss of my financial independence.

“The paradigm shift was overwhelming especially for the first couple of years.

“The idea that I had to quit doing something I truly loved was unthinkable!

“It was heart-breaking. I was so crushed I succumbed to generalised anxiety disorder (GAD) and had to undergo therapy.” 

Treatment options for arteriovenous malformation    

Instead of surgery or radiation, Beverly chose to manage her condition with medication. She had regular MRI scans every six months to keep an eye on her cavernoma. She also made changes to her lifestyle to improve her health and manage her symptoms. 

Beverly started eating a low-calorie, low-salt diet and drank more water. She also worked on getting better sleep.

To help manage her pain, she stayed away from heat and sunlight, using blackout curtains to darken her bedroom.

Loud noises and long hours looking at screens made her symptoms worse, so she tried to avoid them as much as possible. 

Beverly found ways to maintain her quality of life. She said:

“When things go bad, I turn to things that help me see and feel good.

“I turn to gardening, I turn to nature, I turn to my beautiful four-legged babies, I turn to cooking delicious treats, I turn to music, I turn to arts.” 

Living a happy life with AVM 

Now, almost seven years since her diagnosis, Beverly feels she has learned to live with AVM, managing the risks and making the necessary adjustments to her lifestyle.

While her migraines and vertigo haven’t disappeared, they have become more manageable over time. 

 If you’ve recently been diagnosed with AVM Beverly gave the following advice:

“It is terrifying to be told you have an AVM.

“It is important to have a good support network to help you navigate the complexities of your condition.

“Surround yourself with people who are genuinely concerned for you, who know and understand you long before your diagnosis.

“These people who stood by you during your time of need are the same people who will push you to move forward without rushing you.

“Because whether you like it or not, life goes on. Acceptance is key.” 

At The Brain Charity, we support people like Beverly who live with a wide range of neurological conditions.

From AVM and cavernoma to other conditions like Alzheimer’s, Parkinson’s, and multiple sclerosis, we provide emotional support, practical help and social activities to help individuals navigate their conditions.