STOCKTON SPRINGS, Maine — Jess Connor opened her eyes after undergoing brain surgery in May feeling relieved just to have survived the risky operation.
For roughly two decades, the Stockton Springs woman had suffered debilitating headaches, vision problems, weakness and extreme fatigue that on bad days left the 30-year-old relying on a walker. Years of misdiagnoses finally came to an end four years ago, when an MRI revealed Connor suffered from a condition called Chiari malformation, in which brain tissue protrudes into the spinal column.
On May 23, doctors at the Chiari Institute in New York operated on Connor. It was her first surgery for the disorder, which is characterized by structural defects in the cerebellum, the part of the brain responsible for balance, and leads to a painful buildup of pressure inside the skull.
“The minute I woke up from surgery, they were asking if I had Chiari symptoms,” she said.
While it was too soon to tell then, it’s now been three weeks since the operation — and 18 years since Connor first visited a doctor complaining of headaches and blurred vision.
“I have no Chiari symptoms at all,” Connor said. “I am completely symptom-free. It’s miraculous.”
Connor was in and out of the hospital in three days, after refusing heavy pain medication she felt she didn’t need.
“The only thing I took was Tylenol,” she said.
Connor, a mother of three, feels especially lucky that her doctor was able to handle an unexpected complication. During surgery, he discovered an artery wrapped around her cerebellar tonsil, a lobe at the base of the cerebellum, and was able to separate it, she said.
The surgery was already risky because the shape of Connor’s malformation was slightly unusual.
Connor said she has experienced some painful brain swelling, a common side effect of the operation, but steroid medications have helped to alleviate the symptoms. She still needs to rest frequently and regain her strength, both small prices to pay for freedom from the headaches, constant ringing in her ears and memory problems Chiari caused, she said.
Connor also feels blessed that she was treated fairly young and by specialists well-versed in Chiari malformation. She met other sufferers of the disorder while in New York, including a 26-year-old woman from Washington state who had undergone 23 surgeries over the last decade.
“It was really eye-opening,” Connor said. “Even on my worst days, I was never as sick as they were.”
Her experience has given her a new mission in life — to educate doctors about Chiari.
“If they’ve heard of it, they know the name and that’s it,” she said.
Experts estimate that roughly one in 250,000 people has the disorder.
Some have no symptoms at all, while others experience a range of neurological symptoms that can be constant or intermittent.
The condition often is misdiagnosed because patients report a range of nonspecific symptoms. It can be present at birth or appear in adulthood as the skull grows abnormally.
A week after her surgery, Connor started a Facebook page called Chiari USA as a forum for those with the disorder to share their stories. She hopes eventually to film a documentary about Chiari and provide doctors with a short video explaining the symptoms of the disorder.
“There’s a whole world of people out there who are suffering,” she said. “I can’t fix everything, but I can do something.”
Connor’s friends rallied around her after she scheduled the surgery, organizing a March fundraiser to help cover the cost of her $5,000 health insurance deductible. Connor had to leave her job in medical records when her symptoms worsened and her husband lost his job a few months before the surgery, so they pay for private health insurance.
While the fundraising effort fell short, Connor said she has been amazed by the community’s support for her.
“We’ll take the money issue as it comes and we’ll work it out,” she said.