Isabella Pineal Cyst Patient StoryAs an infant, Isabella Colacchio was always fussy. “It seemed like she rarely slept,” says her mother Cara Colacchio, a resident of Langhorne, Pennsylvania, situated between Philadelphia and Trenton, New Jersey. “Bella would go through periods when it was worse and then better. She had headaches, stomachaches, extreme sensitivity to light and blurry vision. She struggled through kindergarten and had just gotten through the first grade when she told us, ‘By the way, I can’t see.’”

At the age of 9, when Bella’s symptoms worsened to the point that she could no longer attend school, her parents enrolled her in cyberschool. The following year – 2012 – she suffered heart palpitations and fainting spells, and was admitted to Children’s Hospital of Philadelphia. “We were just starting to figure out that she had dysautonomia and Ehlers-Danlos syndrome, when a neurologist saw her as an inpatient and found a pineal cyst,” Colacchio says.

The Colacchios saw several East Coast neurosurgeons who viewed the cyst as an incidental, asymptomatic finding and recommended against surgery. Unwilling to accept these opinions, they took Bella to a neurosurgeon in Los Angeles who agreed to operate but wanted to wait until she was older.

Finding a Community Online

In the interim, Cara Colacchio discovered the Pineal Cyst Research page on Facebook, which ultimately led to an online conversation with Orlando, Florida, resident Nikki Tanner. Tanner had spent nearly 10 years and thousands of dollars seeing one specialist after another with no conclusive diagnosis and no relief from headaches before she met neurosurgeon Dong Kim, MD, director of the Memorial Hermann Mischer Neuroscience Institute at the Texas Medical Center. In 2013, Dr. Kim diagnosed a benign pineal cyst and resected it, ending a decade of pain for Tanner.

After a phone conversation with Dr. Kim, the Colacchios flew to Houston in January 2014 for a consultation. “Dr. Kim was very thorough and cautious, which we appreciated,” Cara Colacchio says. “He has an amazing presence – so kind and warm, which is rare in a surgeon. The entire staff went out of their way to make us feel comfortable. It was easy for us to make the decision to move forward with surgery, fly home and prepare for a return trip to Houston.”

The Procedure

On March 5, 2014, Dr. Kim performed a bilateral suboccipital craniectomy and resected Bella’s benign pineal cyst, a technically challenging procedure because of its deep location and the involvement of the brain stem and deep venous system. She was discharged three days later.

“Bella did very well. When I saw her two weeks after the surgery to remove the stitches, she no longer had double vision and her headaches were controllable with an over-the-counter medication,” says Dr. Kim, who is professor and chair of the Vivian L. Smith Department of Neurosurgery at McGovern Medical School at UTHealth. “Helping a young girl regain her vibrancy and energy is an incredibly rewarding experience for a neurosurgeon.”

Colacchio reports an added benefit of the surgery. “For the last three years Bella has been almost a shadow of herself. Now her stamina has increased and she no longer has fainting spells. She finished cyberschool with As and Bs, and has gone back to her music lessons – guitar, keyboards and voice – and to writing her own music. These are things she hasn’t done in three long years. To us, this is a miracle.”

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