Jessica Participates in the first “Conquer Chiari Walk Across America”
Jessica Paddack has endured many surgeries throughout her 15 year battle with Chiari malformation. One of her Chiari surgeries led to the discovery of her Ehlers-Danlos Syndrome. The “Conquer Chiari Walk Across America” is this Saturday.
By: RENE RAY DE LA CRUZ.
The walk will be one of many across the country designed to raise funds for research, education and awareness programs. The disorder affects approximately 300,000 each year in the U.S.
Behind Paddack’s smile and sparkling eyes hides the story of a young woman who has endured 11 surgeries on her brain and spinal cord since she was diagnosed with the disorder during her senior year at Apple Valley Christian School almost 15 years ago.
Paddack, 32, is battling Arnold–Chiari malformation, commonly known as Chiari, a serious disorder where the bottom part of the brain, the cerebellum, descends out of the skull and crowds the spinal cord, putting pressure on both the brain and spine.
After all her surgeries, with the last one in 2012, Paddack’s neck is fused from her skull to her C7 vertebrae, which makes turning her head in either direction an impossibility. She also needs some assistance to walk and her voice sounds gravely because of a damaged right vocal cord.
“I hope for no more surgeries. We’ve been told that I probably won’t be able to work,” Paddack said. “I don’t know if I’ll ever be able to live on my own. I would love to be able to gain more independence, but I can’t drive. I would be happy to just be able to teach Sunday school again.”
Paddack said she spends most of her time at home hanging out on Facebook and watching TV. On a good day, Paddack will summon her strength and do a little baking, with cheesecake being her specialty.
“Her first five surgeries were at Loma Linda University Hospital, until the surgeons didn’t know what else to do,” said Jessica’s mother, Nita Paddack. “That’s when we headed to Northshore University Hospital in Long Island. Her last surgery was June 2012.”
After a cheerleading accident during her freshman year, Jessica began experiencing severe headaches as well as back and neck pain. Chiropractic visits and physical therapy did little to relieve her discomfort.
During her senior year, blood work for a hormonal imbalance led physicians to the root of the problem.
“Shortly after being diagnosed, I woke up one day and when my feet hit the floor my legs just gave out,” Paddack said. “It was scary, but it was not as bad as it could have been because they warned me about what would happen during my diagnosis.”
Soon after, Paddack’s headaches started getting worse, which led to her first surgery to relieve pressure on the brain. After she began school at Hope International University in Fullerton, physicians at Loma Linda University Hospital discovered that spinal fluid had built up in her brain.
“My shunt was not working and the fluid buildup could have destroyed my spinal cord,” Paddack said. “I had a good semester, but then the headaches got worse. That surgery changed my life drastically; everything went downhill after that.”
For the next several years, Paddack had to sit in a reclined position constantly in order to relieve the intense pain that coursed through her body and caused major nausea.
During another surgery, physicians fused Paddack’s neck because of loose vertebrae. After her visit to the Chiari Institute in New York, doctors diagnosed Paddack with Ehlers-Danlos syndrome, a weakness in the connective tissues.
Paddack said doctors in New York also discovered that she had tethered cord syndrome, where the fibers in her spinal cord pull down on her brain.
“With each passing surgery, things got better or worse,” Paddack said. “After the surgery, it was a waiting game to see what was going to happen to my body.”
Nita Paddack said her daughter has been an inspiration to many people as she continues to battle each day.
“It’s been a while since I had a surgery, and now I’m just taking it day-by-day,” Jessica Paddack said. “I’ve had my ups and downs, and moments of anger with God, but I know that I could not have gone through it all without God. I don’t know how anyone could go through pain and suffering without having a relationship with Jesus.”
Britany Smith, 29, a Chiari walker from Victorville who was diagnosed in 2013, will also be walking at the stadium.
“Before surgery, (Britany) had no energy and she was dealing with constant headaches,” her mother, Vicki Parker, said. “After her dizziness got worse and a part of her body was paralyzed, we knew that it was time to get it checked out.”
Parker said after a chiropractor suggested an MRI, Smith was diagnosed with Chiari by a Loma Linda physician who suggested she have surgery right away.
“Britany was afraid of the surgery and dying, so she kept putting it off,” Parker said. “Britany has been feeling a lot better since having her surgery in May to relieve the pressure on her brain and spine. Hopefully after her next checkup the blood flow will be good and she won’t need another surgery. This Chiari thing is a scary thing.”
Saturday’s walk will be held in Adelanto at Heritage Field at Stater Bros. Stadium, the home of the High Desert Mavericks. Registration is at 8 a.m. and the walk starts at 10 a.m. Participation is free.
Visit www.conquerchiari.org to pre-register. For more information, call Jackie Miller at 760-885-5709 or send an email to firstname.lastname@example.org.
This first “Conquer Chiari Walk Across America” is a great step to promote EDS and Chiari awareness in local communities.
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