This is a Solvable Problem: Paige’s Chiari Story

Paige's Story

Thomsons

“For the rest of my life I will never forget the words that Dr. Anderson first said when I sat in his office reviewing my daughter’s medical records, ‘This is a solvable problem.’”

Tracee’s seven year old daughter Paige had been diagnosed with a Chiari Malformation 1 (CM1) and Syringomyelia. Chiari 1 is a boney malformation at the opening of skull that can cause increased pressure on the lower part of the brain and the spine. Often associated, are pockets of fluid build-up in the spinal cord, called syringomyelia (“syrinx”).

Anxious for his opinion, Tracee had driven hours to visit Dr. Richard Anderson, pediatric specialist with Columbia’s Department of Neurosurgery. She says, “When I left his office that night I slept for the first time in weeks.”

Four months earlier, Tracee says Paige had started complaining of back pain. She took Paige to the school nurse who picked up a small curve in her spine. “I had scoliosis surgery when I was a child,” says Tracee, “So, I knew to watch Paige carefully. The fact that her back hurt was a warning sign to me because scoliosis should not hurt.”

The next morning Tracee took Paige to see a regional orthopedist who did a scoliosis X-Ray series and measured a 22 degree curve in Paige’s spine. Based on Paige’s age, the doctor recommended an MRI.

“With any child who has a scoliosis before the age of ten, you typically get an MRI,” says Dr. Anderson. “You want to make sure there isn’t a problem with the underlying spinal cord and in Paige’s case, that picked up a Chiari with a syrinx. That is almost certainly what was contributing to her scoliosis.”

To find out more, Tracee says she dove right into the Internet. On Columbia’s Department of Neurosurgery website she found an article, Should We Let Our Chiari Kids Play?, and was impressed by the treatment approach of Dr. Richard Anderson.

On the same website she also read, More Evidence That Riskiest Part Of Chiari Surgery May Not Be Necessary“That article was the turning point for me,” says Tracee. “By the end of the weekend. This is what I understood–I was going to see neurosurgeons and there were 2 schools of thought out there about the treatment; one was that you absolutely had to open up the dura and the other was to not open dura.”

Dura, short for dura mater, is a thick lining that protects the brain and spinal cord in a cushion of spinal fluid. Opening the dura can be risky because it increases the risk of infection and can lead to spinal fluid leaks.

The surgical treatment for CM1 aims to alleviate undue pressure at the base of the skull and neck by removing bone and it very often involves opening the dura.

“The majority of pediatric neurosurgeons open the dura,” says Dr. Anderson. ”Dr. Neil Feldstein and I have been doing research for the last 15 years about whether or not you really need to open the dura. When you don’t open the dura, the biggest difference is that these kids recover so much faster. They are out of the hospital in two days and they look great. They just get back to their activities. You haven’t burned any bridges. Worse case scenario, if they don’t get better enough, then you can take them back in and open the dura.”

Tracee says, “I didn’t want Paige’s problem over-treated and everything I read led me to believe that Dr. Anderson was a non-extremist. He was referenced in one article as the ‘kids’ champion.’ He was listed as one to watch.”

Dr. Anderson was the first pediatric neurosurgeon to look at Paige and with his encouragement, Tracee sought out other opinions. “In the end, my decision was clear,” says Tracee. “Not only did Dr. Anderson have the best clinical reputation, but I was sure that he was suggesting a surgical procedure that was the best for my daughter and specific to her medical history.” Tracee took Paige to meet Dr. Anderson in April, 2012. “When I met him I just loved him,” says Tracee. “He was great with Paige. I explained that I hadn’t told her much. We decided to tell her together. The words he choose with her were excellent. He was compassionate without being condescending.”

Further, Tracee’s own scoliosis surgery at age eleven had been performed at Columbia and she says, “In stories retold, my mother always said we received the absolute best care there.”

Paige was scheduled for surgery on April 14, 2012. “Dr. Anderson really partnered with me on getting her ready for surgery. You think the bigger the surgeon, maybe not the kinder the person. It has been the exact opposite.”

The surgery took about three hours. “They let you know every half hour how they are doing,” says Tracee. “I’ll never forget when he came out after it was over. Of course, you are just interested in the outcome, but I was concerned that he would shave her head. He came out and said, ‘she did great,’ and he gave me the hair they had cut–there was hardly any. It was so kind and he understood that this is a little girl.” Paige went home just two days after surgery and only missed one week of school.

“There is greater than a 90% chance that she is essentially cured,” says Dr. Anderson. “That she won’t develop symptoms and that her scoliosis will stabilize and she’ll be fine. To mom’s credit she diagnosed it really early.” Dr. Anderson will continue to follow Paige until she is fully grown.

Tracee says Paige wants to be a doctor–or the President–when she grows up. A month after her surgery she turned 8 and, “She is doing great. She got straight A’s last year,” says mom. “Her hair has completely grown back and you can’t see her scar at all.”

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To learn more about  Chiari Malformation 1 (CM1) and Syringomyelia read our previous blogs:

Should We Let Our Chiari Kids Play?   

More Evidence That Riskiest Part Of Chiari Surgery May Not Be Necessary.

Originally Posted on Aug 29, 2012
Updated July 31, 2017

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