Bakersfield teen seeks surgery for brain disorder

Bakersfield teen seeks surgery for brain disorder »Play Video
Bakersfield teenager Jamie Tudor describes life with a rare brain disorder called Chiari malformation.

BAKERSFIELD, Calif. (KBAK/KBFX) — Jamie Tudor doesn't get out of the house very often. In fact, the 13-year-old girl tries not to move around much.

"I read and do my homework, watch movies - not very many things," she said. "I have less friends, because I don't get out a lot."

Any movement for Jamie can mean nausea, back pain, headaches or neck pain.

"My back pain is in the middle. It feels like I'm being stabbed," she said.

Her mother, Julene Tudor, has seen Jamie experience a wide range of symptoms over the years.

"She woke up one morning and had double vision," she said. "That was the last straw when we realized we had to get to the bottom of whatever was going on."

Julene Tudor took her daughter to see an ophthalmologist. She was then sent to an orbital specialist. The specialist ordered a series of tests and a magnetic resonance image, or MRI, of Jamie's brain. The MRI revealed something no one in Jamie's family had ever heard of before. It's called Chiari malformation.

"You feel immediate anxiety, because you don't know what it is, and so the doctor actually made me write it down," Julene Tudor said.

Chiari malformation is when the bottom of the brain crowds the spinal cord and blocks fluid flow between the head and spine.

"It is not common. But, since we have imaging techniques such as the MRI, we're able to pick this up much more than we ever could before," said Dr. Gordon McComb, a neurosurgeon at Children's Hospital Los Angeles. "Usually in the past, it wasn't diagnosed or misdiagnosed."

Raw video: Doctor discusses Chiari malformation >>

The Chiari & Syringomyelia Patient Education Foundation estimates one in 1,000 people have the disorder in the United States.

"Either you're born with it or you can acquire it," McComb said.

Common symptoms include headaches, balance problems, neck pain, trouble swallowing, vision problems, slurred speech and dizziness.

For some patients, doctors say simply using pain relievers and closely monitoring symptoms is enough. But for patients with severe symptoms, surgery is recommended.

"At the back of the head, we'll make a little incision right where the skull and the spine come together, and we'll take off a bit of bone from the skull about the size of a postage stamp," McComb described. "Then, we'll take a little bone off the first arch of the cervical vertebrae, then we open the covering called the dura matter and that allows for more space for fluid to flow between the head and the spine."

In Jamie's case, surgery is recommended.

"There's always a risk to everything we do, just like when you fly on an airplane, there's a risk. When you drive a car there's a risk. There's always a certain inherent amount of risk, " McComb said. "But, generally speaking, the risk is low, and if you didn't think the benefits will outweigh the risks, then there's no reason to do an operation. So, in this case, there's no question that the benefits outweigh the risks, and therefore it's appropriate to do it."

On an early Monday morning, Jamie makes the two-hour trip to Los Angeles with her mother and grandmother. Surgery day begins with the admittance.

"I'm just waiting and answering a lot of questions," Jamie said.

She said she is well rested and remains positive. Mom, on the other hand, admits she didn't get much sleep the previous night.

An IV is put in and shortly after, nurses bring the anesthetic, also called "the goofy juice."

Before the anesthetic even fully sets in, Jamie begins to make her way to the operation room. The nurses begin to roll her away.

"Aw man, we didn't even get to see the goofy," Mom jokingly remarks. Jamie smiles.

The nurses stop one last time before the family must part.

"One more kissy," Mom said. "Bye sweetheart. Be careful."

"I love you mom," Jamie replied.

She is rolled into the operation room, and the anesthetic eventually fully sets in.

Around her, Dr. McComb and his team of about six cover Jamie and begin an intense sterilization of equipment and hands. It's expected to take between four to five hours, barring any complications.

In the waiting room, Jamie's brother passes the time with a book. Mom's eyes are glued to a screen with Jamie's patient identification number. It tracks Jamie's progress in surgery.

"Jamie has been in there 206 minutes, and there are only two other kids that have been in longer," the mom said.

As each minute passes, the waiting is getting tougher. But eventually, McComb appears with an update for the family.

"Everything went well. We had absolutely no problems," he said.

He warns of tough headaches during the recovery process and the need for close monitoring and follow-up.

Six weeks later, Jamie can be found listening to music in the kitchen as she makes spaghetti for dinner. It's just one of her favorite dishes to make.

"I'm pretty happy with it. I don't have nausea any more, so that's good," she said.

Immediately after the surgery, she described the headaches as searing pain. Jamie required a lot of steroids to reduce the swelling in her brain after her operation. She even had to make a trip to the emergency room to get medication through an IV.

"She was having so much pain that it was scary," Julene Tudor said. "It's painful for a mom to have them go through all this, but it's very painful if you can't even help with the stuff that the doctors have provided me."

Even so, Jaime doesn't regret the decision to have the surgery.

"The headaches now are worse. But, that's just because, you know, I'm healing." Jamie said. "But, everything else is better. I can actually think and remember things. So that's nice."

It's reason enough to remain optimistic and dream big for the future. Jamie now looks forward to being a part of graduation at Rosedale Middle School this year and, of course, making more friends now that she's out and about.

There will be a Conquer Chiari Awareness Walk Across America 8-10 a.m. Sept. 22 in Bakersfield. Get more information on the Conquer Chiari Awareness Walk Across America walks.

Doctor discusses Chiari malformation