On a Saturday in March, Assemblywoman Holly Schepisi felt her left arm go numb. It was cold out, and she’d just given a speech at a rally to oppose oil trains crossing the Oradell Reservoir. Soon she felt like her tongue was swelling. She quietly excused herself.

At home, she felt “as if the synapses in my brain were misfiring,” she said. It was like “someone was pressing Bubble Wrap in my brain.” As she sat with her young son, her left side went numb.

“I felt like I was in the movie ‘The Matrix,’ popping in and out of reality,” she said. She jumped out of her chair. “Something is really wrong,” she told her husband.

But then her cellphone rang: Their 11-year-old daughter needed a ride home. Schepisi’s husband couldn’t drive because he’d just had shoulder surgery to fix a recent skiing injury. She calmed herself and set out.

Inside a coffee shop in Westwood a few minutes later with Kayla and her friend, the symptoms returned. “I don’t want to scare you,” she told the girls, “but I’m going to drop you off at the end of the driveway. Tell Daddy that Mommy had to drive herself to the hospital.”

Minutes later, Schepisi walked into the emergency room, and told the nurse, “I’m fairly certain I’m having a stroke.”

Within the hour, she was diagnosed with a probable brain aneurysm.

And just like that, Schepisi’s life changed course.

An aneurysm, a bulge in a blood vessel in the brain, can burst without warning and cause death or devastating brain damage. Schepisi faced a serious medical problem and risky |surgery.

Her treatment offers a close-up view of modern medicine at work, from the initial live-action video of her brain’s blood flow to the microscopically guided clipping, through a hole in the skull, of her ballooning artery. Schepisi, 43, knows that “on the lucky spectrum” she’s off the charts: After her brain surgery, she has no complications. She has returned to work full time, run an active political campaign and — as of last week — been reelected to a third term in the Legislature.

But that luck came with a price — a financial one.

As she dealt with her medical expenses, she needed all the skills she uses as a lawyer to navigate the billing maze: untangling what was charged and what was owed, what was in-network and what was out-of-network, what was her insurer’s responsibility and what was her own. It hasn’t been easy.

Unlike other patients, though, she is a lawmaker.

Looking back, Schepisi realizes she ignored her symptoms for too long.

The daughter of a well-known Bergen County Republican, John Schepisi, she keeps a crowded calendar. There are the kids, Kayla and Easton, who is 4; her law practice; and the duties of representing the 39th District, which includes her hometown of River Vale and 22 other municipalities in northern Bergen and Passaic counties.

A few days before she went to the ER in March, she’d been at the hairdresser’s, tilted back in the chair to have her thick blond hair washed, when she felt as if she’d been zapped by a stun gun, she said. She snapped up.

“I felt this shooting-like boom through my head, through my body,” she said. “I had hot and then cold flushes go through my entire system — and saw literally, lights flashing in front of me. I almost blacked out.” For the rest of the day, she was exhausted: “It almost felt like I had had a seizure.”

The following day she was driving to Trenton when “the synapses in my brain started to misfire.” In a fog, she asked a staffer to talk to her on the phone until she got to the next rest area. She kept on to the State House, then later drove to a political event in Oakland, followed by a Planning Board meeting in Rockleigh. There, she said, she felt her speech was slurred “like I was intoxicated, but I’d had nothing to drink.”

By the time she got home, it was late. “I must have just fallen asleep [when] I went flying out of the bed,” she recalled. Her husband asked what was going on. She asked if he’d heard the gunshot.

“‘Gunshot?’” he said. “‘Honey, we live in suburban River Vale, New Jersey. There was no gunshot.’”

But to Schepisi, it had “sounded like a gunshot went off in my head.”

She went back to bed, praying “as I went back to sleep that I would wake up the next morning.”

To Dr. Reza Karimi, a neurosurgeon who treated Schepisi at Hackensack University Medical Center, it sounded like she was describing “sentinel headaches.”

“We think that type of headache — a thunderclap headache, the sudden worst headache of your life — is a warning sign for a rupture” of a brain aneurysm, Karimi said. About one in four will go on to rupture within the next few weeks or months, he said, citing studies.

One in 50 people — 6 million in the United States — has a brain aneurysm that hasn’t ruptured, according to the Brain Aneurysm Foundation. Most will never cause problems, but about 30,000 people a year experience a potentially catastrophic blowout: 40 percent of those patients will die and 15 percent never even make it to a hospital.

Aneurysms start as a weakness in the wall of an artery that supplies blood to the brain. When the bump starts, it’s the size of a pimple. Then it begins to bulge. With each pulsation of blood into the brain, the stress on the artery causes the wall of the aneurysm to thin out. Most inflate like a berry or balloon. When they burst, blood flows into the brain.

The first task of the doctors treating Schepisi was to get a detailed picture of her aneurysm’s size and shape. Karimi threaded a narrow catheter through the big artery in Schepisi’s right leg, up through her aorta and into the carotid artery in her neck to perform a brain angiogram. Through the catheter’s soft tip, Karimi injected a dye into the blood vessels, then watched on eight monitors as the dye pulsed through the network of plumbing to create a real-time map of the brain’s blood flow. It took about an hour.

Schepisi, lightly sedated, felt a fluttering inside her head as they worked.

“It wasn’t painful. It was uncomfortable at times,” she said. “They needed me to react and talk and hold my breath.”

She also heard everything that was being said — including the physician’s statement that “we can’t do it.”

What he couldn’t do was fix her aneurysm with this inside-the-artery — or endovascular — approach. He and other surgeons who treat aneurysms are able to use a catheter in about 85 percent of cases to place tiny platinum coils inside the aneurysm, inducing clots that plug it up. But the images of Schepisi’s aneurysm revealed an oddly shaped bulge with two domes at the main branching of the mid-cerebral artery. Its thick neck meant that placing a coil there would be dangerous and not completely seal it. Instead, the aneurysm would have to be clipped from outside the artery — and that meant open surgery, through a hole in her skull.

The good news — confirmed shortly afterward through a painful spinal tap — was that Schepisi’s aneurysm wasn’t leaking. The bad news: The doctors said she should have surgery as soon as possible.

Schepisi chose a different course — she checked out of the hospital.

She explains it this way: This was major surgery, with significant risk; she’d be out of commission for at least six to eight weeks. “There was a lot going through my head,” she said. “What do I do with my law practice? I have no transition plan. What do I do with my children, who are in school? What do I do with all of the meetings and voting sessions I have coming up in the Legislature? All of a sudden it was, ‘Oh, my gosh, I need some time to get my life in order.’Ÿ”

News spread quickly about her illness. She surprised everyone by showing up two nights later at a campaign fundraiser at the Stony Hill Inn in Hackensack. Lt. Gov. Kim Guadagno, who hosted it, told her to go home and get some rest. “I thought it was important that people see I’m doing well,” Schepisi told reporters. “I wanted to come and thank all the people who support me.”

In the photos, she looks delighted to be there.

Over the next weeks, she consulted neurosurgeons around the metro area and considered her options.

She knew her aneurysm was smaller than those that typically rupture. One doctor suggested she could postpone the operation indefinitely as he monitored its size and shape every three months. On the one hand, she knew brain surgery was risky and there was a chance her aneurysm would rupture during the procedure. On the other hand, what if it ruptured spontaneously?

“It’s a very personal decision,” Dr. Robert Solomon, chairman of neurological surgery at New York-Presbyterian/Columbia Medical Center, said in an interview. He has done hundreds of open aneurysm surgeries. “It’s very difficult for somebody to live with a threat like that hanging over her head.”

Schepisi was hospitalized again in May for a digestive problem, then had a scare a day after her discharge. On a conference call while working at home, “all of a sudden I felt myself blacking out,” she said. She hung up to dial 911. Her husband, who’d been fetching Kayla at school, came home to find a clutch of EMTs, his son, and the family dog and cat surrounding his wife, who’d been given oxygen.

“I view it as a sign,” Schepisi said recently. “Somebody was saying, stop screwing around. Pay attention.”

She scheduled the operation for May 26.

There was a lot to be done to get ready: She merged her solo legal practice of 11 years into a group practice in Westwood. She set up spreadsheets of bills to be paid, listed the passwords for her online accounts. “When you’re sitting there and thinking about, what happens to my kids if I don’t make it through, checking your life insurance policies to make sure there’s adequate coverage so that your family can remain in your house if you die — those are very difficult things to get your arms around,” she said.

And she continued to question whether she was doing the right thing.

The operation that Tuesday began with an incision that curved from the hairline at her forehead behind her right ear to the base of her skull. With the scalp pulled back, Solomon drilled through the skull to create a window the size of a silver dollar to the brain.

Solomon worked for 90 minutes in that tiny porthole, viewing it through the high magnification and brilliant light of a 3-D surgical microscope. With the methodical focus of a bomb-disposal expert, he dissected the arachnoid membrane — so named because it resembles a spider’s web — to expose the target blood vessels.

Once the aneurysm was in the open, he carefully placed a clip — essentially a minute, titanium clothespin — around its neck. The blood flow shut down. He pricked the aneurysm, and it collapsed like a balloon.

After an angiogram to check for other aneurysms, Solomon replaced the bone, attaching it with screws. He closed her scalp with some 30 staples and wrapped her head in a tight bandage.

As to whether the surgery was needed, “any second-guessing immediately went out the window,” when the doctor spoke with her afterward, Schepisi said. The aneurysm’s walls actually were thinner than predicted, and it could have ruptured much sooner than anticipated, she said.

Schepisi was walking the hospital hallway the next day, a quick return to activity that Solomon recommends for his patients. One side of her body was stronger than the other, she said, but she managed to climb a few stairs at the hospital. By Thursday night, she was sleeping in her own bed. And the day after that, she took Easton to Van Saun County Park in Paramus.

Mommy was back, albeit with her face slightly swollen.

The calls from collection agencies came even as she lay in the hospital’s neurological intensive care unit.

There were bills from her husband’s shoulder operation, by an out-of-network orthopedic surgeon at an ambulatory surgery center. Schepisi’s plan had out-of-network coverage, but she was shocked at how little her insurer paid.

Then there were bills for her hospital stays, the specialists who had treated her, and the surgery and advanced imaging used in her care. Some physicians billed their higher out-of-network rates even for emergency care where, by regulation, her responsibility could not exceed the amount she would have paid for in-network care. In one case, she said she called to argue that an admission for a brain aneurysm was an emergency, and the bill was corrected.

As the mail came in, she remembers feeling exasperated. “You have no control of any of it,” Schepisi said. “Nor should you have to face thousands and thousands of dollars in bills, with people calling to say, ‘Too bad, suck it up, you have to pay.’”

By June 1, the family’s health care charges topped $250,000. Their out-of-pocket expenses, even with the insurance coverage she carried, exceeded $40,000.

In her law office, she thumped a 3-inch folder of medical bills and “explanation of benefit” forms — along with a few collection notices. “I have seven years of higher education, and I couldn’t figure out what the hell my plan gave me and what it didn’t,” she said. “God forbid, the average person have the back-to-back health [problems] my husband and I did this year. It would bankrupt most people.”

She found the billing and reimbursement system confusing, inconsistent and riddled with errors that unfairly pushed expenses toward her, she said. Fighting such bills is time-consuming, frustrating and often beyond the power of sick and overwhelmed families, she said. Yet the financial consequences are serious and long-lasting.

In September, Schepisi received an alert that her credit score had been lowered because of two supposedly unpaid bills, for $30 and $9.83. A collection agency, acting on behalf of a Westwood medical practice whose doctor had checked on her during a hospital stay, reported the supposed debt to the credit agencies, and her credit score dropped almost 50 points. Schepisi proved with credit card statements that both had been paid in full three months before; the medical practice confirmed she had a zero balance, she said. The erroneous debt was to be removed from her credit report, she was told, but it took three follow-up calls to be sure.

Recovering from brain surgery was challenging, but the maze of bills proved equally daunting. She was responsible for different amounts, depending on whether the care was from an in-network or out-of-network provider. And while there was supposed to be a cap on her out-of-pocket expenses, the insurer didn’t count some of those expenses in that cap.

Schepisi and her family are insured by Horizon Blue Cross Blue Shield of New Jersey through a small-business policy with a high deductible. Of the family’s $250,066 in health care bills for the first five months of 2015, Horizon determined the “allowable amount” to be $88,503, through a combination of discounts for in-network care and what it considers appropriate for out-of-network care. Based on her policy, the insurer paid $63,472.

Schepisi paid $20,477 in co-insurance and deductibles, according to her records — then paid an additional $24,829 for out-of-network bills.

It all got her to think about what she could do as a legislator to address the problems she was encountering, starting with how little her insurance paid toward her out-of-network bills.

In one example, Horizon determined that the “allowable amount” — the maximum it considered appropriate — for an $8,763 out-of-network bill was $969. The insurer did not tell her how it came up with that amount, or why there was such a big discrepancy. Horizon paid $581 because the policy covers 60 percent for out-of-network care. Yet even though Schepisi ended up paying $8,181, only $388 — the remainder of the allowable amount — counted toward her out-of-pocket maximum.

Thomas Vincz, a Horizon spokes¬man, said that Horizon calculates the allowable amount for Schepisi’s specific plan by using the 80th percentile of a “national index for determining the usual and customary out-of-network charges,” known as the Prevailing Healthcare Charges System. It is one of several databases used by the industry to make such computations and is not public. It is reportedly based on the charges submitted to 100 insurers and claims administrators nationwide.

Out-of-network providers, however, are free to bill the patient for the rest of their charges, Vincz said. Those charges don’t count toward the policy’s out-of-pocket maximum, he said, “which is why Horizon always encourages members to seek care from in-network providers.”

Schepisi said that bills from providers are unclear about whether in-network or out-of-network rates are being applied and even what service is being billed. Many patients give up and pay — especially the smaller bills, she said.

“I call it getting ‘twenty-two-dollared’ to death. … You take the path of least resistance and just pay them,” she said. “You have no idea if they’re legitimate. You have no idea who the doctor was. You have no idea if the service was rendered. But you pay them.”

She would like to make it easier for patients to find out ahead of time what their financial responsibility will be. While Horizon officials said they have estimates for out-of-pocket expenses for medical services on their website, allowing consumers to comparison-shop among hospitals and physicians, Schepisi said she found it impossible to get such an estimate when scheduling an out-of-network surgeon for her husband’s shoulder operation.

Schepisi has been something of a secret shopper in the health care maze: She said she rarely invoked her legislative position as she dealt with the bills. And her family can handle the expense without missing a mortgage payment. But “the number of personal bankruptcies and foreclosures and pre-foreclosures in the area I represent is at an all-time high,” she said — and one of the top reasons for personal bankruptcies is medical debt.

Nationwide, more than one-third of Americans — 35 percent — reported having problems paying their medical bills or paying off medical debt in 2014, according to a survey by the Commonwealth Fund. The survey found that 15 percent had been contacted by a collection agency during the previous year because of unpaid medical bills, and 4 percent had been contacted because of a billing mistake.

As a Republican, Schepisi favors a conservative approach to government regulation of business and believes in free-market principles. Yet she is so drawn to this issue she is considering signing on to support a measure sponsored by four Democratic lawmakers to rein in out-of-network charges.

Regardless of party labels, she wants to be careful about unintended consequences. The problems patients encounter under the current system must be addressed, she said, but “we need to make sure we aren’t punishing our health professionals while rewarding the insurance companies.”

She’s involving herself at a time when insurers, health care providers and patient advocates have been in conflict over what to do. Strong pushback from doctors groups and a for-profit hospital chain kept the legislation from moving out of committee in the spring. But the sponsors kept meeting over the summer and said they planned to introduce a revised version, now that Election Day is passed.

The original bill, introduced by Assemblymen Craig Coughlin of Woodbridge, Gary Schaer of Passaic, and Troy Singleton of Mount Laurel and state Sen. Joseph Vitale of Woodbridge, would bar physicians and hospitals from billing a patient more than the in-network rate in an emergency. It would establish binding arbitration when the provider and the insurer disagree about an out-of-network payment, and would create a “health care price index” for the state, requiring insurers to tell how much they pay at in-network rates for their services.

“Sometimes with something of this magnitude you have to take baby steps,” Schepisi said.

It’s not the first time a personal health issue has informed her political agenda. Two years ago, Schepisi worked for passage of a ban on teen use of tanning beds, which she believed caused the melanoma she’d been diagnosed with as a law school student. A small spot on her lower leg turned out to be cancerous, and she had surgery to remove it.

In her own life, Schepisi has made rapid progress from those first steps of post-surgery in the New York hospital — she’s even rappelled down a 10-story building. On a Saturday this fall that was jammed with campaign stops in Ringwood, Mahwah, Wanaque, Haworth and Norwood, she descended the face of a Woodland Park office building on a fixed rope as part of a fundraiser for the Girl Scouts of America.

“I did clear it with my neurosurgeon,” she said. But “it was the scariest thing I’ve ever done.”

When she told the story of her aneurysm to a campaign luncheon gathering of more than 100 women in River Vale recently, four months had passed since the operation.

“To be able to stand here in front of you,” she said, “is nothing short of a miracle.”

 

Source- Bergen Record