Las Vegas Chiari group aims to raise awareness about brain malformation

After Spring Valley resident Christine Smith underwent brain decompression surgery in 2007, life became a little more precious, and clinging to it seemed nearly impossible for a while. But she had something to hang on for.

“If it weren’t for my daughter, I wouldn’t be here,” she said. “I’ve got to show her strength.”

Smith, 44, said she pushed through the pain, despite brushing against the edge of death three times at the hand of post-op medication. She’s gone through all of this to take care of a condition that most people have never even heard of until they’re diagnosed with it.

Smith is living with Chiari malformation, a rare neurological condition in which her herniated cerebellum is bulging below her skull and creating pressure around her spinal cord. The malformation blocks fluid produced higher up in the brain from flowing to her spine.

Her symptoms daily range from headaches to insomnia. Something as simple as walking from an air-conditioned room into the Las Vegas heat can cause the pressure to build in Smith’s head, resulting in splitting headaches.

“It’s very debilitating sometimes,” Smith, a mail carrier, said.

But those aren’t the only complications that stem from the condition. Lori Huckaby, 57, said she sleeps well but suffers pulsating headaches that she calls “brain freeze with a heartbeat.” She would also experience tingling in her arms and legs and sensitivity to loud sounds.

Huckaby eventually lost hearing in her left ear, prompting her to go ahead with the decompression surgery. Because the condition occurs where the body’s nerves cluster, two people suffering from Chiari can experience different symptoms. Other effects of Chiari include complications with cognition, speech and balance.

“So much of the information that goes through the rest of the body passes through the foramen magnum,” neurosurgeon Dr. Aury Nagy said.

About one in 1,000 people in the U.S. live with the condition, according to Conquer Chiari, a nonprofit advocacy group. Smith said those are old numbers, and as doctors are better able to diagnose the condition, its prevalence will become more apparent.

The details on how the condition starts are a little fuzzy, but according to Conquer Chiari, most cases appear to be congenital.

Whether trauma can cause malformations is “kind of an open question,” Nagy said.

There are four subcategories to the condition: Chiari 1-4. Chiari 1 is the most common and the form that both Smith and Huckaby suffer from.

Before MRI technology, Chiari was often misdiagnosed as a myriad of other problems such as multiple sclerosis, so adults living with the condition often went decades without knowing what was wrong.

With no cure for Chiari malformation, good help is hard to find. The decompression surgery releases some of the built-up pressure on the brain by removing part of the skull and top vertebrae and is supposed to stop the progress of the condition, Huckaby said. Locally, the care required to treat Chiari is not up to speed with the already lackluster treatment in other parts of the country.

“Here in Las Vegas, we seem to be a little bit behind,” Huckaby said.

There are no specialists in the valley, but some surgeons will perform the surgery. While Smith was able to get her surgery done here, Huckaby had to travel to Colorado.

Smith and Huckaby are administrators for the Las Vegas Chiari Malformation Support Group, a support network that has about 150 members. About 30 are regularly active in events and meetings. They put on at least two annual fundraisers.

Those events can be sharing a meal at a local restaurant or organizing fundraisers to promote research and awareness. Ultimately, they aim to let those suffering know they are not alone and promote improved medical attention.

“It’s important to get the information out there so that people are aware and they’re not living out this wanting to commit suicide,” Smith said.

The newest member of the Las Vegas group had her decompression surgery on June 6.

“This is Lilly,” Huckaby said, pointing at her iPad that’s covered in purple, the official Chiari awareness color of support.

Lilly, 3, was born with Chiari 1. After getting an MRI done when she was 18 months old, doctors found the malformation.

Lilly’s parents, Jessica and Jeff Lokatz, said the support they have received from the Las Vegas group has made walking their daughter through recovery as easy of a pill to swallow as it possibly can be.

“They’re phenomenal,” said the purple-haired Jessica Lokatz of Huckaby and Smith.

But no amount of support can ease the fear of watching their daughter come out of brain surgery.

“It’s exhausting,” Jeff Lokatz said. “Absolutely exhausting.”

Smith said watching Lilly tough out the operation motivates her to continue her advocacy.

Funds raised during a June 28 event organized by Smith at Genghis Grill, 550 N. Stephanie St., are going toward the group’s annual Walk Across America event in September. On June 28, Conquer Chiari members were scheduled to serve stir-fry, with 15 percent of sales and 100 percent of cash tips going back to the organization.

All but five states hold walks, and the Las Vegas walk is slated to take place Sept. 17 at Centennial Hills Park, 7101 N. Buffalo Drive. Last year, the walk saw 400 participants and raised nearly $10,000. The cost for registration with a T-shirt is $25, but anyone can complete the 1.25-mile walk free.

Lilly’s parents plan to support their daughter at the walk, and members of their family in New York also plan to participate locally.

Smith’s near-overwhelming advocacy comes from her intense desire to foster awareness of the condition and create an environment where Southern Nevadans can get the help they need.

And inked into her ankle is a purple butterfly with the script of her mantra serving as a constant reminder: “I got this.”

For more on the Las Vegas walk, visit tinyurl.com/hc5zzaj. For more on Conquer Chiari, visit conquerchiari.org.

Contact View intern reporter Blake Apgar at bapgar@reviewjournal.com or 702-383-0342. Follow him on Twitter: @BlakeApgarLV.