Surviving A Brain Tumour: A Survivor Talks About Diagnosis, Treatment and Her Journey To Recovery
While this type of tumour, also known as a vestibular schwannoma, is benign " not a cancerous growth " it can still be life-threatening. Without treatment, vital nerves including the hearing, facial and balance nerves can be affected.
Last year Annie Lee Siswojo had a tumour removed from her brain. Today she’s in a celebratory mood, happy and grateful for all life has to offer. “I like to mark every milestone, no matter how small,” she says. “Today it’s been six months since my operation.”
Siswojo says she was “beyond shocked” when diagnosed with acoustic neuroma, a rare tumour that grows in the canal connecting the brain to the inner ear.
While this type of tumour, also known as a vestibular schwannoma, is benign ” not a cancerous growth ” it can still be life-threatening. Without treatment, vital nerves including the hearing, facial and balance nerves can be affected. In the worst cases, the slow-growing tumour can encroach on the brain.
“I’d never heard of acoustic neuroma before my diagnosis, so I read as much as I could on the subject, maybe a little too much,” she says.
“Giving birth naturally was the only surgical procedure I’d had, which might be hard for some people to believe considering I’m South Korean,” says Siswojo, taking a poke at her home country, which boasts the highest number of cosmetic surgery procedures per capita worldwide.
Siswojo, who juggles jobs as marketing manager of the Handsome Factory Barbershop, a Hong Kong chain, and creative director of Mata Hari Bags, is a great believer in the power of positivity and says this, along with the amazing support from family and friends, played a key role in her recovery.
Siswojo had always been active, with dance and choreography playing big roles in her life. For a time in the late 1990s, she was one-half of South Korean R&B duo Tashannie. “We can leave that discussion for another time,” she says. Today, Siswojo’s focus is on her health.
“I’d been suffering neck pain for a couple of years, which I thought was related to my slipped disc injuries in my spine as a result of dancing for more than 26 years … I’ve been accustomed to pain in my spine,” she says.
But for years, she had no signs of the tumour that had been growing in her left ear for more than a decade.
According to the US-based Mayo Clinic, signs and symptoms of acoustic neuroma are often subtle and can take years to develop and usually arise from the tumour’s effects on the hearing and balance nerves. Pressure from the tumour on adjacent nerves controlling facial muscles and sensation (facial and trigeminal nerves), nearby blood vessels, or brain structures may also cause problems. No environmental or dietary factors are known to influence acoustic neuromas’ growth rate.
The first alarm bell came in August last year when Siswojo started experiencing slight tinnitus, or ringing in the ear. “At first I didn’t think much of it and put it down to pressure from flying.”
After a check with an ear, nose and throat specialist in Hong Kong, followed by a magnetic resonance imaging (MRI) scan, she received the news.
“The tumour was about 2.1 centimetres and had been growing inside my left ear ” about 5.3cm deep ” for 10 years,” she says. “It was touching my balance nerve, facial nerve, and my brainstem. I had many risks to factor, such as hearing loss, facial paralysis, losing my balance and so much more that I didn’t even want to imagine.
“If left untreated it would continue to move into the brain,” she says. The tumour had already started pushing on her nerves, causing pain throughout her neck and head.
Complicating matters was a cyst, a fluid-filled sac, that had attached to the tumour. “I was left with no other option but to have it surgically removed,” she says.
“I had never been apart from my daughter, so that was difficult. Also knowing how much to tell a 10-year-old, and how much to leave out, is also difficult.”
While in Hong Kong’s Saint Teresa’s Hospital, she stumbled upon a video of American actor Mark Ruffalo, who in 2002 was diagnosed with the same disorder.
“I was inspired by the Mark Ruffalo video,” she says. “He kept saying ‘just move ” whether it’s your toes or your face, just move.’ He was right! Instead of laying around waiting to heal, starting to move slowly is the fastest way to recover.”
Post surgery has literally been about restoring balance: Siswojo has lost hearing in her left ear and is “a bit wobbly” most of the time but she knows her outcome is better than many.
“I’ve joined [acoustic neuroma] support groups on Facebook and realise I’m so lucky to have come out with few side-effects,” she says. Some people suffer disfiguring facial palsy that causes part of the face to droop, causing difficulty with daily tasks such as drinking or dressing, and making it hard to shut one eye.
Since her surgery, she has embraced yoga and high-intensity interval training (HIIT) sessions for the family in their tiny living room. Family hikes are also part of her more active lifestyle. She also has a greater appreciation of the fragility of life, not just because of her own health scare but because of the impact of the coronavirus pandemic.
“I feel like a lot of people are getting back to enjoying life at a slower pace, doing things they haven’t done in a while like learning new recipes, reading, learning new things, playing board games … even some knitting. It’s a good time to press the pause button on our fast-paced lifestyles and spend some quality time together,” she says. The family recently completed a huge jigsaw puzzle, something she would normally never find the time to do.
Other lessons from her experience include the importance of a second opinion ” a few doctors were unable to diagnose the tumour, and when some did they all had a different opinion on how to treat it. She stresses, too, the importance of not ignoring signals the body sends, no matter how subtle they are.
While overwhelmed by the support of family and friends ” “My husband Brian is my rock!” ” Siswojo has also been getting some technical support in the form of an Apple Watch that delivers a notification to her husband if she suddenly collapses.
“It also reminds me to drink water, encourages me to get up and move, lead a healthier lifestyle … and to take a moment to breathe,” she says.
“Instead of thinking about what I should have in my life, I’m so grateful for what I already have. I am so blessed … I have enough.”
This article originally appeared in the South China Morning Post (SCMP), the most authoritative voice reporting on China and Asia for more than a century. For more SCMP stories, please explore the SCMP app or visit the SCMP’s Facebook and Twitter pages. Copyright © 2020 South China Morning Post Publishers Ltd. All rights reserved.
Copyright (c) 2020. South China Morning Post Publishers Ltd. All rights reserved.