By JARED MINSON

Staff Writer



For several years, 18 year-old Preston Turpin, of Chickasha, has been struggling with Chiari Type I Malformation.

Most of his struggle, he said, isn't just from the pain, but from being misdiagnosed, mistreated and given the runaround from the school.

In laymen’s terms, when someone has Chiari, his skull is too small for his brain, causing pressure at the back of the brain. The brain is supposed to rest inside of the skull. The cerebellar tonsils extend down to the base of the skull, thus cramping the brain stem.

Chiari is present in about one in every thousand births.

It can cause symptoms ranging from headache, neck pain, difficulty swallowing, scoliosis, weakness in hands and arms, difficulty waking, eye movement abnormalities, speech difficulties and breathing abnormalities, among others.

In an effort to help spread awareness, Preston and his family participated in the Jaden's Stand Against Chiari awareness walk in Shawnee on Saturday.

Governor Brad Henry named November 2009 Chiari Awareness Month for Oklahoma.

Turpin said he first knew something was wrong when he was 15 years old and he couldn't sit or focus on his schoolwork, and his neck was beginning to hurt badly.

"I couldn't focus. My legs and arms would go numb. I started getting electric shocks through my body because my nerves were getting pinched," Turpin said. "It was unbearable; I couldn't do anything."

After several months, Preston was missing so much school that he was sent to Chickasha Quality Academy.

Patti Hawthorne, Turpin's mother, said during this time, she took him to a local pediatrician who told her Preston was just experiencing "growing pains.” Then she took him to a chiropractor who gave him laser treatments for three sessions a week for three months, followed by a sports doctor who prescribed medicine.

It was December, 2007, during Christmas break, that Hawthorne said she realized the gravity of the situation.

She said Preston's friends were having a Christmas party at the skating rink and he didn't want to go because he was in too much pain.

"When you're a mom of four boys and it's Christmas break and there's a party and your kid's saying he doesn't feel good, something's wrong," Hawthorne said.

Hawthorne said she went on-line, and at the beginning of January, 2008 she drove him to a bone and joint specialist in Oklahoma City. They gave him an MRI, which led to the diagnosis of Chiari I Malformation.



First Brain Surgery

Preston had his first brain surgery Feb. 19, 2008, and after a few weeks, not only was he not feeling better, but he was also showing changes in behavior and personality, Hawthorne said. He also was showing signs of memory loss.

"I would bring stuff up all the time about things we used to do, that I know he should remember," said Jordan Turpin, Preston's brother. "But he wouldn't have any clue what I was talking about."

Hawthorne said she called the surgeon who operated on Preston and told her that Preston was angry all the time and didn't even seem like the same person anymore. The surgeon then told Hawthorne that this personality shift was due to all of the painkillers he was having to take, and that she shouldn't worry.

"I told everyone I wasn't fixed and I didn't feel better at all," Turpin said. "And by this time I was already addicted to my medicine, so everyone was thinking I was just trying to go back to the doctor to get more and more, when I was actually hurting 100 times worse than before."

Hawthorne said even she was believing the doctor over her son.

Turpin said he didn't want to live anymore because nobody believed him and all the pain he was going through.

"We had to send him to the emergency room for evaluation,” Hawthorne said. “He would walk for hours in the rain. He was frustrated."

She decided to get another MRI, just in case doctors had missed something. She started researching on-line and found a Chiari specialist in Aurora, Colo. His name was Dr. John Oro.

Hawthorne sent the MRI to the doctor who performed Turpin's first surgery and to Dr. Oro. The first doctor replied saying she saw nothing wrong and everything seemed to have healed properly. Dr. Oro, on the other hand, said that Turpin needed not only another Chiari surgery, but he needed neck surgery to correct mistakes from his first surgery.

Since the initial consultation, Hawthorne said they've flown to see the specialist about eight times for CAT scans, MRIs, follow-ups, and pre-surgery visits.

In April of this year, Preston went under the knife for the second time, but this time with Dr. Oro.

Preston said the surgery was a success, but the process isn’t finished yet. He still has neck pain, he has scoliosis, and his doctor told him he will most likely need another surgery in the next five years.

His biggest frustration, Preston said, isn't finding a way to manage the pain, but it's the frustration of not getting to graduate with his brother, Jordan, his biggest ally through this entire process.

Jordan and Preston are only 11 months apart in age and were supposed to graduate together.

Due to his medical absences, Hawthorne said, the Chickasha Quality Academy suggested Preston attempt to get his GED instead of a high school diploma.

"Everyone was passing him down and all he wanted was to walk across that stage with his brother," Hawthorne said.

During the first surgery, there were more than 30 people in the waiting room, and many others calling to check up on him, Hawthorne said. Now, however, there are no calls, no knocks on the door; he's lost all his friends.

"People in Chickasha aren't aware of what Preston has. People think he's quit school and is dealing drugs," Hawthorne said.