Woman whose brain is 'slipping' into her spine says alternative treatment saved her
A woman who shockingly found out her brain is 'slipping' into her spine causing her to collapse 20 times a day, and is periodically deaf, blind and in agony, says an alternative treatment has changed her life.
Doctors predicted Jennifer Sullivan, 35, would be using a wheelchair after being diagnosed with Chiari malformation in 2012, having "baffled" them for two years with many alarming symptoms.
Chiari malformation, previously called Arnold-Chiari malformation, is a rare condition where the lower part of the brain pushes down into the spinal canal. While it affects people differently, one of Sullivan's symptoms included having no feeling from the chest down at one point.
Determined to battle the unpredictable condition, she started having reflexology massages – which apply pressure to the feet, hands and ears – and, which she says, restored her movement. She was so impressed, she has since trained to perform the discipline herself.
Sullivan, who lives in south east London with her husband Jacob Sullivan, 41, recalls how her symptoms began in 2010 when she unexpectedly collapsed on the stairs, soon escalating to the point that she was in unbearable pain. She said, "I used to grab my skin, as I wanted to rip my head off.
"It started happening up to 20 times a day.
"I was passed on to every hospital around London, but no one could diagnose me."
She was eventually diagnosed with Chiari after she sent her MR scans to a friend's neurologist father, though even when she did discover the name for the condition she was faced with more hurdles.
While Sullivan did undergo three brain operations, which she is thankful for, she insists the more unconventional treatments she turned to have been key to restoring her quality of life.
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She said, "I want people to understand they don't have to accept what they're told, you can improve your own life.
"I'm so thankful to have had the brain surgeries, but they left me dealing with a condition so debilitating and I think reflexology got me out of that.
"Learning about reflexology and removing toxins in my life have allowed me to find some normality, and that's why I'm not in a wheelchair like the consultants said I would be."
Sullivan's first sudden collapse walking up the stairs repeated a few weeks later, at which point she knew something was wrong. But despite various tests, nothing was found.
By 2011 she has become used to her strange symptoms, which had also triggered short periods of sight and hearing loss.
She continued to see GPs and specialists across London, but they were baffled. By now she was experiencing episodes up to 20 times a day, with excruciating pain and a sensation of "squeezing" in her brain.
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Just 23 at this point, she became a regular at A&E and would spend weeks in hospital, where doctors would keep her under supervision – despite her appearing to be fit and healthy. One theory was that she had a spinal leak, caused by a tear in her spinal cord, but nothing was found.
Sullivan explained, "As something happened to me, I'd go into A&E, I'd stay in hospital for a few weeks and they wouldn't know what it was
"They experimented with lots of different things to see if the symptoms would improve, but they continued to get worse." She started to question whether her symptoms were psychosomatic, as her mental and physical health declined.
Sullivan herself suggested trying out a blood patch, a procedure where a small amount of blood is injected into a patient's epidural space to stop a leak. And, to her amazement, it appeared to work, as she felt completely fine and was pain free just days after.
"The blood patch seemed to work instantly, it was just incredible," she said. "I couldn't believe it. It was like magic."
But sadly, this wore off after a few months, causing her to quit her job and move in with her mum Anne Mitchell, on the Isle of Wight where she grew up.
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Miraculously landing a job as a carer, and still in her early twenties, she continued to spend weeks in hospital.
"I learned to live with it but, without a diagnosis, I was just lost," she said.
"I was 23, but couldn't think about my future. I was worried I would not survive. I couldn't function, I couldn't even think through the pain."
A few months into working as a carer, a profession she loved, she said, "Everything had been fine for three or four months, then a patient fell and when I caught her, the pressure triggered a tweak in my body and soon after, the symptoms began again.
"By the time I got home, my hand was numb."
At St Mary's A&E on the Isle of Wight, she was given morphine to deal with the pain which nurses said sounded "like she was in labour".
After spending seven days in hospital where she was not allowed to move, she was then discharged, feeling better. She moved back to London after the summer of 2012, accepting the fact she might need blood patches every few months.
She continued to work in sales and marketing – the career she had previously given up due to her condition – and met her husband, a marketing director.
"I was holding down a full-time job, but (the pain) started to get more intense. I felt like my head was too big for my body, it was very strange. I had stabbing pains one morning walking from the Tube and has passed out in the middle of the street.
"That was normal for me, so I carried on and went to work. Then my arm went numb and I lost my vision."
But when she collapsed again in the street in November 2012, she was rushed to Chelsea and Westminster Hospital's neurology ward and given morphine for the pain, with her condition spiralling further.
It was when her worried sister Lisa Saidinayer, sought the advice of her best friend's dad – a retired neurologist – that they were told to contact his former student David Peterson, a neurologist at Charing Cross Hospital.
At last, when transferred to his care, he immediately diagnosed Sullivan with Chiari malformation after examining her scans.
"I was begging him to help. No one knew what this was and it was getting worse," she said.
Sullivan added, "After looking at all my scans over the years, he saw that, very slightly, my brain had started to drop down to my spinal cord and diagnosed Chiari straight away.
"When he told us what it was, I felt so much relief. I was really thinking that I had a mental problem and I was making it all up.
"When people tell you for so long that there's nothing there, you just start to believe it.
"So it was such an emotional time. I was so relieved I wasn't completely crazy."
Just a month later, in December, she was given potentially life-threatening surgery to cut out a piece of her brain.
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Sullivan said, "Before my surgery date, we had a big family part and it felt like the final supper. That really hit home for me, that it could be the last time I saw anyone. That was quite hard.
"Doctors warned me there was a chance it could go wrong."
The five-hour op at London's Charing Cross Hospital, called a magnum decompression, involved cutting out the part of the brain that was slipping into her spine, before gluing it all back together.
Despite some setbacks, including a syringomyelia, a fluid-filled cyst within the spinal cord, she continued to improve.
But in 2018, she then lost all feeling below her chest and was rushed to hospital again due to nerve damage, which had made her brain unable to read messages from her nerves.
However, Sullivan rejected forecasts that she would be in a wheelchair forever and started to remove toxins from her everyday life – from food to cosmetic products – and began having reflexology massages every week. Remarkably, she is now able to walk normally, and has gone from feeling suicidal and depressed to feeling happy and hoping she can inspire hope and courage in other people facing similar challenges.
"All the feelings they said I'd never have, I got back," she said.
"People underestimate how much power you can have over your own situation.
"I will live with Chiari malformation for the rest of my life, but I know my body and my limitations. I wouldn't have been able to get through the difficult times without my family's support, and I feel great now and that makes me very pleased."
Follow her story on Instagram @justjenniferbeauty or on justjenniferbeauty.com
Additional reporting by PA Real Life.
