Jess Connor has spent most of her life enduring a wide range of symptoms like dizziness, debilitating headaches, blurred vision and occasional slurred speech.

Since she started complaining about those symptoms at about age 12, Connor said, doctors blamed what she was experiencing on everything from the flu and fibromyalgia to an anxiety disorder.

Some physicians surmised that what Connor was feeling was all in her mind.

“I was having dizzy spells and these really severe headaches that weren’t migraines,” said Connor during an interview at her home in Stockton Springs Thursday, March 29. “I was going to the doctor with what were really a lot of vague symptoms.”

It wasn’t until about four years ago when Connor finally learned that the problems she endured all these years really were in her head — literally. That was when Connor’s doctor ordered her to undergo an MRI (magnetic resonance imaging), after which she was told she had Chiari (pronounced Kee-YAR-ee) Malformation, a condition in which the brain presses into the spinal column due to structural defects in the cerebellum. The disorder adversely affects the flow of spinal fluid and causes pressure inside the skull, Connor said.

According to information about the disorder posted on the Chiari Institute website, Chiari Malformation includes a group of disorders that are “characterized by herniation of the cerebellum through the large opening in the base of the skull (foramen magnum) into the spinal canal. ” As a result, the herniated tissue blocks the circulation of spinal fluid to the brain.

While some who have the disorder may never experience symptoms, Connor said the ones who do usually do not experience them until adolescence or early adulthood, which was true in her case. According to information available at, the more common form of Chiari Malformation — the one that Connor suffers from — was thought to be rare until the use of the MRI became more common.

“With the increased availability of magnetic resonance imaging, the number of reported cases has risen sharply. Current estimates range from 200,000 to 2 million Americans with the condition,” stated the page detailing the brain disorder.

The website also noted that women are affected three times more often than men, and that about 3,500 Chiari operations are performed in the United States each year.

The diagnosis, Connor said, was the beginning of a journey that she hopes will end when she undergoes brain surgery at the Chiari Institute in New York at the end of May.

At that time, the mother of three will undergo a surgical procedure that her husband Justin Connor said would take more than seven hours to complete. During those hours doctors will bore two small holes in Connor’s skull — one at the base and a second one on the top center — and use a laser to remove the cerebellar tonsil.

“Then they’ll put the cerebellum back where it belongs,” said Justin Connor.

Doctors also plan to repair one of her vertebra near the base of her skull, which Connor said is tilted dangerously close to her spinal column.

While Connor said the surgery can be risky, she considers it the final roadblock that stands between her and the rest of her life. There is typically an 80 percent success rate for patients who undergo surgery, Connor said, and there is a good chance she will no longer suffer from the debilitating Chiari symptoms if the procedure is successful.

Overall, Connor said she likes those odds.

“It’s worth it to me. It’s not a vague hope to me; it’s more like a 90 percent chance in my mind,” said Connor, who occasionally took a break from the interview to tend to her children.

The fiery 30-year-old, who admits she’s still been known to “overdo it” until her body forces her to stop, said it’s been frustrating to accept that what used to be a routine trip to the grocery store is now all it takes to bring on extreme fatigue.

“I just want to be able to go and do things with my kids,” she said, recalling how Facebook posts from friends about their plans to take their families to the park or the beach would sometimes leave Connor feeling envious of their ability to do so.

Connor’s battle with Chiari Malformation and the pending surgery has also added a new layer of hardship to Justin Connor’s search for work, as the husband and father recently lost his job. He said finding work in a market where jobs are scarce is already difficult, and it becomes almost impossible when he tells a potential employer that he’ll need two weeks off in May to care for his wife and family after the operation.

To make ends meet, Justin Connor works with his father to operate the family’s auction business, and to keep stress levels low at home he’s taken on more of the household and child-rearing duties.

“Before, she would just do it all, and you couldn’t get me to say three words on the phone,” Justin Connor said. “But I do all of the phone calls now, even the ones I know aren’t going to be stressful for her.”

Connor said she also often finds herself dealing with not only the degree to which her illness has affected her ability to walk or even stand without the aid of a walker on some days, but also the innocent ignorance of those who see her on a good day and inquire about the true severity of her disorder.

“When people can’t see that I’m sick, I think sometimes they don’t get all the hype,” she said. “But at the same time, I hate having to use my walker out in public. I can’t get over the embarrassment I feel about being a 30-year-old who has to use a walker. I don’t want people feeling sorry for me.”

The Connors have health insurance, but have needed to raise at least $5,000 to cover the cost of the deductible, travel and lodging expenses for the week following the surgery. Because of that need, Conner’s friends and family have been organizing fundraisers, with the most recent one being March Madness in the Maritimes, a series of family-oriented events that included a 3K race, a polar plunge, an alumni basketball game, public supper and benefit auction during St. Patrick’s Day weekend.

The Connors and their supporters are now organizing another local fundraiser that will likely take place in August.

Connor, who said she’s prided herself on her independence all her life, said she has been humbled and overwhelmed by all that her community has done to help her in her family’s time of need.

“It’s hard to admit when you need help, and I really appreciate all that everyone in this community has done to help me, and help my family,” said Connor.

In addition to looking forward to spending quality time with her children, Connor said her bout with Chiari has inspired her to consider a career in communications, and more specifically, using those skills to help people who are in similar situations. She also said getting the word out about Chiari Malformation has given her the chance to connect with others across the country who also suffer from it, as well as those who have been helped by the corrective surgery. Connor said she has also been happy to raise general awareness about the disorder, as she has heard from people who are now being tested for Chiari because their symptoms are similar to what she had described in recent statewide media accounts.

“I know I can’t help everyone, but even if I can help a few people, it will be worth all the effort,” she said.

Reporter Tanya Mitchell can be reached at 338-3333 or