The only reminder of Tobin Hoagland’s brain surgery is a small part in her long, blonde hair.
That’s where a tiny scar remains, and where a portion of her head was shaved before an open craniotomy in May. Now her hair is starting to grow back.
“If you didn’t know her, you’d have no idea it’s there,” her mother Talia Hoagland explained. “She’s definitely back at it.”
Today, Tobin, with all of her energy and squeals of delight, is begging her mother to fix the flat tire on her bicycle. She seems like any other 9-year old. But she’s unrecognizable, from pre-surgery Tobin. Only a couple of months ago, she was in bed, in the dark, suffering from debilitating headaches and nausea. The slightest motion would set her into a downward spiral of pain.
That was before the Idaho resident made an emergency, mid-pandemic trek to Houston for a life-changing surgery.
Tobin was in kindergarten when first diagnosed with arachnoid cyst - a fluid-filled sac in the brain.
She had a chronic sinus infection, and an ear, nose and throat doctor (ENT) doctor ordered a CT scan - exposing a cyst pushing against Tobin’s brain.
“It was the largest he had ever seen,” Talia Hoagland recalled.
While she was relieved to learn that the giant white sphere on the scan was not cancer Talia was still concerned. “Her brain was shoved to the side,” she said. “It was devastating to see the photos.”
Still, the Hoaglands’ family doctor in Idaho told them to wait until Tobin was 16 years old for treatment.
“He sent us home with ‘You’re just fine. Go home. You don’t need any intervention,’” Talia Hoagland said.
A couple of years passed without Talia Hoagland giving the arachnoid cyst much thought.
When the coronavirus pandemic sent Tobin home for virtual learning, her headaches became apparent to her mother. At first, Talia Hoagland thought it might be simply math homework stress - but all the subjects started to result in pain.
Then simply watching the television caused a headache. Before long, riding her bike, which used to bring Tobin so much joy, became impossible.
“She had to stop,” Talia Hoagland explained. “The back and forth motion was enough to cause a headache.”
Usually, the pain would subside after about 20 minutes of Tobin lying down in a darkened room. But one morning, Talia Hoagland awoke to discover Tobin vomiting and crying.
“She could not even communicate, but I could tell she was scared,” Talia Hoagland recalled. “And I couldn’t do anything.”
She rushed her daughter to the emergency room in Boise.
“We gave them her history, and they really didn’t do anything,” Talia Hoagland said. “They gave her a migraine pill and that didn’t do anything. They listened to us complain and watched her vomit. There were no scans, no nothing. The on-call neurosurgeon said we could go home, with another migraine pill and Tylenol.”
The Hoaglands were told to return if Tobin started having seizures or became unresponsive. The family reluctantly left the hospital, even as Tobin continued to vomit on the drive home.
“At that point, I broke down and started crying,” Talia Hoagland said.
She dialed her family doctor, who ordered an MRI. She waited for the weekend to pass, with Tobin lying on her bed, the room completely blacked out, cycling between tears and sleep.
The cyst had grown, the Hoaglands were told, but the family doctor conferred with the neurosurgeon that the findings were open to interpretation.
“I was a wreck,” Talia Hoagland recalled. “Nothing made sense. No one was going to help us.”
She said a prayer and then opened her phone to research arachnoid cysts for the umpteenth time.
This time something new popped up on the Google search: a webinar on the subject, presented by Dr. David Sandberg, a neurosurgeon in Houston with Children’s Memorial Hermann and UT Health.
Talia Hoagland pushed play.
“I listened to the whole thing,” she said. “It was almost 30 minutes long.”
In the webinar, one mother spoke about how she could not find treatment for her daughter, who was about the same age as Tobin. That is, until she found Dr. Sandberg.
The neurosurgeon explained on the video that when he finds a large arachnoid cyst, he likes to address the issue, before it leads to cognitive or developmental problems.
Talia Hoagland found Sandberg online and emailed his clinic. A nurse called her back within a couple of days.
“It confirmed everything I felt,” Talia Hoagland said. “I told her, ‘They’re not going to help us.’ And she said, ‘Well, we are.’ It was utter relief.”
Talia Hoagland planned to bring her daughter to Houston in a week.
Then, her family doctor dropped a bomb, calling to say that the MRI revealed a hygroma — or rupture — in Tobin’s arachnoid cyst. He said that it was not an emergency and prescribed more migraine medication.
Talia Hoagland decided to check with Dr. Sandberg’s office. His nurse went from sweet and reassuring to worried, suggesting the family head to the emergency room immediately.
But they had already been to the hospital and not received the level of care they wanted. So the Hoaglands packed their bags, buckled Tobin into the car and headed to Houston.
“We drove straight through,” Talia Hoagland said. “We made a 28-hour trip. We were in the emergency room by 6 p.m. on Friday in Houston.”
In less than 48 hours, Tobin entered into surgery.
Dr. Sandberg said that the medical field is not in agreement on whether to treat arachnoid cysts.
“There’s a lot of controversy about this diagnosis,” he explained. “Most of the time, we do nothing. But there are some patients where it can cause a real problem. Most patients don’t need surgery - but that doesn’t mean no patients need surgery.”
Larger arachnoid cysts can result in severe headaches and seizures. In Tobin’s case, the cyst’s position resulted in pressure on her brain and skull.
“For this kid, the headaches were just horrible,” Sandberg said. “She had severe symptoms. Something needed to be done. You don’t want kids to be suffering from something that can be fixed.”
For some patients, he can perform a minimally invasive surgery. But for Tobin, the size and location of the cyst required more. Sandberg made an incision in her scalp and removed a small piece of bone. From there, he could puncture the cyst.
“It’s like popping a bunch of holes in a balloon,” Sandberg explained. “And that’s it. It’s a very straightforward surgery.”
After decompressing the cyst, the bone was replaced and the scalp sutured back together. Tobin waited a couple of days in the hospital and then was ready to make the trip back to Idaho.
Sandberg said that some patients never know they have an arachnoid cysts, since they are often asymptomatic. Often the cysts grow slowly over the years and might not become apparent until adulthood or show up on a scan ordered for an entirely different reason.
Headaches can be common complaints for children, Sandberg added.
“But if you have a child with persistent headaches, that’s not normal,” he said. “In this era of COVID, we still have kids with brain tumors and cysts in their brains that need to be diagnosed or treated.”
Within 24 hours of the operation, Tobin’s headaches and nausea were gone.
“They’re all gone,” Tobin said.
“The care we received - from the phone calls to meeting Dr. Sandberg in person - was hands down the best thing that could have ever happened to her,” Talia Hoagland added.
She plans to advocate for improved treatment in her state, so other families don’t have to make a journey to Houston.
“I don’t want this to happen to another child,” she said.
In another couple of months, they will follow up long-distance with Dr. Sandberg. And in a year, they’ll order another scan.
In the meantime, Talia Hoagland can sit back and enjoy her daughter, with no fear, no second guessing her doctor and no cries of pain.
“To me, it’s all a miracle,” she said.
Lindsay Peyton is a Houston-based freelance writer.
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