Local mom continues to thrive after brain surgeryConnor makes it her mission to 'pay it forward'
Belfast — Seven months after undergoing brain surgery, 31-year-old Jess Connor of Belfast is happy to say she no longer suffers from the symptoms of Chiari Malformation, a condition she had exhibited symptoms of since she was 12 years old.
"I don't have headaches anymore. I also don't struggle with balance issues, blurred vision, and weakness in my arms and legs, said Connor in an interview Wednesday, Jan. 2. "I should say that I don't have Chiari headaches anymore. I have experienced a normal headache since then, but just one."
Connor wasn't formally diagnosed with Chiari Malformation — a condition in which the brain presses into the spinal column because of structural defects in the cerebellum — until about four years ago. Prior to that time, Connor said, doctors had several theories about what might have been causing her symptoms, and they ranged from fibromyalgia to anxiety disorders. Other medical professionals told Connor it was psychological in origin.
It wasn't until Connor's doctor ordered her to undergo a magnetic resonance imaging scan (MRI) that Connor discovered she had the brain disorder, which adversely affects the flow of spinal fluid and causes pressure inside the skull.
Armed with that information, the married mother of three embarked on a journey to a better way of living. The community rallied behind the family, organizing fundraisers to help the Connors raise the money they needed to cover medical costs, travel and lodging expenses so Connor could go to the Chiari Institute in Great Neck, N.Y., for her brain surgery.
Last May, Connor underwent the corrective procedure, which involved surgeons boring two small holes in Connor's skull — one at the base and a second one on the top center — and using a laser to remove the cerebellar tonsil. From there, doctors placed the cerebellum in the correct position.
Wednesday, Connor said in the months since the surgery she has seen evidence that her condition has been slowly but steadily improving.
"The only remaining issues I experience now are that I get fatigued easily post-surgery, and that I do experience neck strain from time to time. But I have been going to physical therapy to alleviate that symptom. I feel a lot better, almost like I did before my Chiari problems became a problem," said Connor. "I can do almost everything, except for lift on heavy stuff, and I just have to be careful not to strain my neck. That's where most of my discomfort is now. My head doesn't hurt at all. Not even where the incision is."
Connor has been well enough to home-school her children and recently enjoyed about an hour of sledding with her family, something her body would have been less likely to tolerate prior to the surgery.
Before Connor went to New York, she, her husband, Justin, and several other relatives and supporters shaved their heads at Glow Salon in Belfast. Connor did it because she knew she had to shave her head at the base of her skull, where the incision was going to be, so she decided to part with all of her auburn locks. The others sported the bald look to show support for Connor.
Months later, Connor said that choice of hairstyle has brought her a fair amount of frustration and more than a few reasons to laugh as her hair continues to grow back.
"I would say the funniest part about it right now is trying to grow my hair out so it looks somewhat normal and doesn't look like an awkward bad haircut from a cheap salon," she said.
Connor is also getting used to having less bone at the base of her skull since the surgery, something she said she's not only accepted as a new normal but has also used as a source of personal entertainment.
"It is very odd to feel the back of my head where the incision is, and [to] realize that there is no bone there. I'm almost literally touching my actual brain," she said. "It's gross... And it's really fun to freak people out about that."
On a serious note, Connor has made it her mission to help others. She is now helping to organize the 2013 March Madness in the Maritimes, a series of community events and activities aimed at raising money to help a local family in need. Last year was the first time the fundraiser was held, and it was organized as a way to help Connor raise the money she needed for her surgery.
This year, Connor said, the event will benefit 5-month-old Martin James of Waldo. The infant, who is the son of Emily Desjardins and Bill James, suffers from Caudal Regression Syndrome, meaning his rectum did not grow long enough to function properly, his tailbone is not as long as it should be and his spine and spinal cord were tethered when he was born.
“I wanted March Madness to be going to help someone else, because the community really rallied together to help me when I was the one in need," said Connor. "It's just a way of paying it forward."