Ruling could be new lease on life for Nikki

Johnston Sun Rise ·

Finally, there’s light at the end of the tunnel for Nikki Batsford. The Johnston resident, who has hydrocephalus, said she might finally get access to a doctor who she believes could save her life.

Dr. Mark Luciano is the director of the Johns Hopkins Cerebral Fluid Center and has spoken over the phone with Batsford regarding her case. But her provider, UnitedHealthcare Rhody Heath Partners Program, which has previously granted her exceptions and approved out-of-network doctors, was no longer willing to sign off on the doctor consultation at Johns Hopkins, even denying her appeals, according to Batsford.

In a letter dated September 7, 2016, UnitedHealthcare responded to Batsford’s Level 1 (first) appeal, saying: “Based on a review of the medical information provided, the physician has determined that the request for Out of Network Office Visits does not meet Rhode Island Member Handbook because you have a brain illness.”

The letter additionally states that only Batsford’s primary doctor can establish the need for an out of network doctor.

“Airtight documentation” would need to be provided that Batsford cannot receive the needed treatment in Rhode Island, says Batsford.

The Batsford family is small, just mother, daughter and a brother in New York. They don’t have money to pay for the procedure and are reliant upon the help of others and the insurance company. While Batsford is enrolled in the Rhode Island insurance program she cannot pay for treatment at Johns Hopkins with a cash payment – it is their policy, she explained. So the consultation must be done through insurance, Public Relations Director of United Healthcare Maria Gordon-Shydlo said.

However, after another appeal and enlisting help from the likes of Senator Jack Reed, Batsford received a call late on Tuesday with good news.

In an email she said UnitedHealthcare decided to overturn their decision and allow her six visits with Dr. Luciano. So far, it’s still in preliminary stages. Details have to be hammered out to make sure they can negotiate payments with Johns Hopkins, who at this point does not accept her coverage and has to work one-on-one with United on her behalf for this specific case. Plus, the six visits are only consultations and further negotiations would have to occur for Dr. Luciano to treat her.

Batsford is “guardedly optimistic” moving forward; this is “a huge hurdle to overcome – possibly the biggest of all.”

Hydrocephalus is a condition that causes cerebrospinal fluid buildup in the brain resulting in headaches, nausea, collapsing, and lately has inhibited Batsford’s breathing and swallowing.

Amanda Garzon, Director of Communications and Marketing at the Hydrocephalus Association, said that the brain illness is a complex condition that can be caused in so many different ways.

“In Nikki’s case, she’s had an excessive number of brain surgeries; at some point, how much can your brain take?” said Garzon.

Following these types of procedures, other medical issues arise which further complicate the patient’s condition.

“Its not just dealing with hydrocephalus,” says Garzon. “You’re also dealing with a myriad of other issues and health complications that are being caused by the hydrocephalus.”

Typically, neurosurgeons will treat patients for a condition, but with hydrocephalus it is a lifelong, chronic condition that may require managing a patient’s health and continuing surgical procedures as necessary, Garzon explains.

“A lot of doctors don’t want to take on patients with hydrocephalus,” she said. “We are having a very hard time finding adult neurologists and neurosurgeons who want to manage these cases.”

Garzon added that doctors who formerly treated Batsford were not renowned hydrocephalus experts as is the case with Dr. Luciano, who because of his experience may be the one doctor who can offer relief.

“He follows patients from infancy all the way through adult care,” she said. “And so he has that unique perspective of treating the whole age spectrum of a patient.”

Batsford has suffered and endured an insurmountable malaise associated with the neurological disorder called hydrocephalus that causes swelling in her brain from an excess buildup of cerebrospinal fluid.

“I spent all that time contemplating the horrifying thought that my brain was broken and the people who broke it didn’t know how to fix it,” says Batsford, recollecting the surgery that went awry following a Chiari malformation operation at the base of her skull.

Ever since she was diagnosed in grade school, the 33-year-old has visited dozens of doctors and undergone procedures and treatments for the condition to little avail.

The string of operations began in 2000 when Batsford underwent a Chiari malformation surgery at Hasbro Children’s Hospital. During the operation, however, an abnormal collection of cerebrospinal fluid began to leak out.

“They thought that it was a straightforward case,” she recalled.

Prior to that, Batsford had been sick, off and on, since she was 8 years old after contracting mononucleosis.

In total, Batsford has had 16 operations that include shunt procedures – hollow tubes surgically placed in the body to help drain the fluid elsewhere for re-absorption.

Back in 2011, Batsford had the shunt moved from the right side of her brain to the left side following a shunt infection.

“All hell broke loose as soon as that happened,” she said. “I’ve never felt okay since that time.”

As of late, her condition has taken a turn for the worse.

When she tries to fall asleep, Batsford experiences sudden choking fits and massive full-body tremor attacks that inhibit her breathing.

“I’m at the point where I’m struggling to breathe,” she said.

She takes 14 pills per day to manage the symptoms, ranging from anti-seizure medications to control her neurological condition to muscle relaxers. One of her prescription medications costs $1000 per month, she said.

Previously, she was accepted for a program that offers massage therapy for pain relief through her insurance, which she said was helpful. In cold weather her limbs can lock and she has chronic muscle spasms, which can be subdued with the massaging.

“I’m appreciative for it, but it doesn’t fix the problem,” she said. “It just helps with the damage the problem is causing.”

While she waits to hear whether she’ll be able to receive care, Batsford will continue to find solace in knitting, painting or with a coloring book. It distracts her from the pain.

This time of year she likes to paint pumpkins, but she’s finding it harder than usual, as she was only able to paint five pumpkins compared to twenty last fall.

“Even though it was something I love to do that is so peaceful, I felt like I was running a marathon for something as simple as painting for a little while,” she said.

Her goals at this point are fairly simple: get healthy and then try to figure out what she would be able to do following the procedure in terms of a job. She’s done food writing (Batsford was once a food writing intern for the Cranston Herald and placed first in an a New England Newspaper & Press Association contest for one of her food articles in the business and economic reporting section back in 2008) and was an assistant to a pastry chef in a restaurant and cheese shop while she studied culinary arts at Johnson & Wales University.

“It’s baby steps,” she says, “because quite realistically I would be going back to writing sooner than I would go back to anything on the end of the pastry line, even though that was my first passion. It was always the cooking.”

Writing, Batsford says, would be less physically demanding for her when and if she does recover.

“She’ll look at people who have normal lives that get up to go to work – to her, that’s like a magic trick,” says her mother Janice Batsford, who has been by her side through it all.

This story was originally posted by Johnston Sun Rise. Click here to view the original story in its entirety.