“It’s a lot of bending over and lifting the wheelbarrow and putting stakes in the ground,” the 26-year-old said as she surveyed the tomatillos, cherry tomatoes and eggplant growing in raised beds behind her house in Austin, Texas. “And none of that I could ever do before.”

For as long as she could remember, Cannon’s activities were limited by chronic pain and muscle weakness.

“There was a lot of pain in my legs, which I can now recognize as nerve pain,” she said. “There was a lot of pain in my back, which I thought was, you know, just something everybody lived with.”

Cannon saw many doctors over the years. But they couldn’t explain what was going on. She’d pretty much given up on finding an answer for her pain until her fiancé, Cole Chiumento, pushed her to try one more time.

“It never improved, it never got better,” Chiumento said. “That just didn’t sound right to me.”

So about two years ago, Cannon went to a specialist, who ordered a scan of her spine. A few days later, her phone rang.

“We found something on your MRI,” a voice said.

The images showed that Cannon had been born with , a rare disorder related to spina bifida. It causes the spinal cord to split in two.

In Cannon’s case, the disorder also led to a tumor that trapped her spinal cord, causing it to stretch as she grew.

In December 2017, a neurosurgeon opened her spinal column and operated for several hours, freeing the cord.

“I think it was day three after my surgery I could feel the difference,” Cannon said. “There was just a pain that wasn’t there anymore.”

As she recovered, Cannon saw lots of huge medical bills go by. They were all covered by her insurance plan. Almost a year had passed since the operation.

Then a new bill came.

Patient: Liv Cannon, 26, of Austin, Texas. At the time of her surgery, she was a graduate student insured with Blue Cross and Blue Shield of Texas through her job at the University of Texas.

Total bill: $94,031 for neuromonitoring services. The bill was submitted to Blue Cross and Blue Shield of Texas, which covered $815.69 of the amount and informed her she was responsible for the balance. The insurer covered all of Cannon’s other medical bills, which came to more than $100,000, including those from the hospital, surgeon and anesthesiologist.

Service provider: Traxx Medical Holdings LLC, an Austin company that provides neuromonitoring during spinal surgery. Neuromonitoring uses electrical signals to detect when a surgeon is causing damage to nerves.

Medical service: Cannon was born with a rare spinal condition that had caused chronic pain and muscle weakness since she was a child. In December 2017, she had successful spinal surgery to correct the problem. Her surgeon requested neuromonitoring during the operation.

What gives: Neuromonitoring made sense for the type of surgery Cannon had. The bill did not. Cannon should have been warned long before her surgery that the neuromonitoring company would be an out-of-network provider whose fees might not be covered by her insurer.

At first, she was baffled by the billing information Blue Cross sent her. “It was one of those things from the insurance company that says this is the amount we cover and this is the amount you might owe your provider,” she said, referring to her explanation of benefits.

The statement listed four separate charges from the day of her surgery. Each was described as a “diagnostic medical exam.” Together, they came to $94,031.

Blue Cross said the covered amount was $815.69 — minus a $750 deductible and $26.27 for coinsurance — and informed Cannon she might have to pay the balance: $93,991.58.

“I was shocked,” she said. Chiumento was outraged.

“As soon as I saw that, I thought it was a scam,” he said.

The charge came from Traxx Medical Holdings LLC, an Austin company. Traxx did not respond to emails, phone calls and a fax seeking comment on the charge.

The company’s shows that Traxx provides a service called intra-operative neuromonitoring, which evaluates the function of nerves during surgery. The goal is to help a surgeon avoid causing permanent damage to the nervous system.

There is an ongoing debate about whether neuromonitoring is needed for all spinal surgery. But it is standard for a complicated operation like the one Cannon had, said Rich Vogel, president of the .

On the other hand, a $94,000 charge for the service can’t be justified, Vogel said.

“You’re not going to meet anybody who believes that a hundred thousand dollars or more is reasonable for neuromonitoring,” Vogel said.

Most neuromonitoring companies charge reasonable fees for a valuable service and are upfront about their ownership and financial arrangements, he said. But some companies are greedy and submit huge bills to an insurance company, hoping they won’t be challenged, he added.

Even worse, “some neuromonitoring groups charge excessive fees in order to gain business by paying the money back to surgeons,” Vogel said.

Last year, Vogel’s group published a condemning these “kickback arrangements” and other unethical business practices.

It is unclear whether Traxx has any financial arrangements with surgeons. Cannon’s surgeon did not respond to requests for comment.

The size of the fee for Cannon’s monitoring was only part of the problem. The other part was that Traxx — unlike her hospital, doctor and anesthesiologist — had no contract with Blue Cross and Blue Shield of Texas. As an out-of-network provider, the company could set its fees and try to collect from Cannon any amount it didn’t get from her insurer.

Blue Cross and Blue Shield of Texas said it doesn’t comment on problems affecting individual members. But the insurer did offer a general statement by email about the problem:

“Unfortunately, non-contracted providers can expose our members to significantly greater out-of-pocket costs. These charges often have no connection to underlying market prices, costs or quality. If given the opportunity, we will try to negotiate with the provider to reduce the cost.”

One thing working against Cannon is that she is pretty sure that, just before surgery, she signed a paper that authorized the out-of-network neuromonitoring.

“It was 4:30 in the morning and you’re like, ‘OK, let’s get this over with,’” she recalled.

Getting consent in the hospital may be legal, but it’s not reasonable, said Dr. Arthur Garson Jr., who directs the Health Policy Institute at the Texas Medical Center in Houston.

For example, a patient might be having a heart attack, Garson said. “You got chest pain, you’re sweating, sick as you can be, and they hand you a piece of paper and they say, ‘Sign here.’”

The Texas Legislature in May to protect patients from the sky-high bills this practice can produce. And Congress is considering .

These are small steps in the right direction, Garson said.

“Asking the individual patient to make that decision even when they’re not sick I think is difficult,” he said, “and maybe we ought to think of some better way to do it.”

The Texas legislation is expected to take effect later this year but affects only bills that occur after it becomes law. So that $94,000 figure is never far from Cannon’s mind, even as she and Chiumento plan their wedding.

“Every time I go out and I collect the mail, I’m wondering, ‘Is this the day it’s going to show up and we’re going to have to deal with this?’” she said.

The Takeaway: Neuromonitoring during complex surgery involving the spine can help prevent inadvertent damage. But monitoring may be unnecessary for lower-risk back operations, like spinal fusion.

It is odd that neuromonitoring is charged as a separate service, rather than part of the spine surgery. Cardiac monitoring is not charged separately during bypass surgery, for example.

When considering spine surgery, ask your doctor whether neuromonitoring will be part of the procedure. If so, will it be billed separately? Try to find out the name of the provider and get an estimate of the cost beforehand.

Check with your insurer to determine if the neuromonitoring provider is within your network and to make sure the estimated charge would be covered.

Bill of the Month is a crowdsourced investigation by Kaiser Health NewsÌý²¹²Ô»åÌý that dissects and explains medical bills. Do you have an interesting medical bill you want to share with us? Tell us about it!

Â鶹ŮÓÅ Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at Â鶹ŮÓÅ—an independent source of health policy research, polling, and journalism. Learn more about .

USE OUR CONTENT

This story can be republished for free (details).

That’s the central finding of a published Wednesday by the Alzheimer’s Association on the financial burden friends and families bear when they care for someone with dementia.

“What we found was really startling,” says , vice president of constituent services for the organization. “The cost of paying for care was putting people in a situation where they had to make really difficult choices around basic necessities — things like food, medical care, transportation.”

The report, based on a survey of more than 3,500 Americans contributing to the care of someone with dementia, also found that:

• Friends and family spent, on average, more than $5,000 a year of their own money on the expenses of their loved one with dementia, ranging from food to adult diapers.
• More than one-third of these contributors to care who had jobs had to reduce their hours or quit.
• To make ends meet, about 13 percent had to raise money by selling personal belongings, such as a car.
• Nearly half of the care contributors surveyed had to dip into their savings or retirement funds.

The Alzheimer’s Association decided to conduct the survey, Kallmyer says, after hearing lots of stories of financial hardship from friends and family members of people with Alzheimer’s. One of those stories came from Paul and Sarah Hornback, who live in central Kentucky.

The Hornbacks had borrowed a lot of money to put three children through college. Now Paul was being forced to retire early and they wouldn’t have his salary to pay off the debt.

“We had to sell basically everything but my wife’s car and an old truck that I kept to drive around here on the farm,” he says.

At first, Sarah Hornback kept working as a school administrator. But about 18 months ago, she also had to retire early — to care for her husband.

“It got to the point where it just wasn’t safe for him to stay alone just because of memory and decision making,” she says. “He might leave the stove on or he might decide that there was a tree branch bothering him and he should get out the chain saw.”

The Hornbacks are getting by on their early retirement income. But Sarah Hornback says the real financial problems will start when she can no longer care for her husband on her own.

“When he has to go into full-time care, I’m going to be at the poverty level, basically,” she says.

The financial burden is greatest for people like the Hornbacks, who have to pay more while working less, Kallmyer says.

“It’s really a double whammy,” she says. “People are sometimes not able to work as much or not able to work at all in order to provide care, and then they’re paying money out of pocket on top of that.”

When he was 59 years old, Greg O’Brien was diagnosed with early-onset Alzheimer’s disease. Five years later, he is speaking publicly about his experience, even as his symptoms worsen.

The survey also found that about two-thirds of Americans believe Medicare will help cover nursing home costs, or aren’t sure whether it will. It won’t.

“What that tells us is that families are ultimately unprepared for that really, really significant cost of long-term care,” Kallmyer says.

Clinics that specialize in Alzheimer’s often try to help family members navigate the financial aspects of care.

“It’s a challenge for almost every family that we see,” says , a geriatric psychiatrist and director of the Banner Alzheimer’s Institute in Phoenix. “We do see folks who are lucky and have considerable resources. But even for those families it’s a major financial obligation.”

And it’s not realistic to expect every family to absorb the cost, Tariot says.

“Ultimately,” he says, “society will need to think of other ways of funding care for our elders as they become vulnerable.”

Â鶹ŮÓÅ Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at Â鶹ŮÓÅ—an independent source of health policy research, polling, and journalism. Learn more about .

USE OUR CONTENT

This story can be republished for free (details).

States aren’t likely to prevent many shootings by requiring mental health professionals to report potentially violent patients, psychiatrists and psychologists say.

The approach is part of a  in response to the Newtown, Conn., shooting a month ago. But it’s unlikely to work because assessing the risk of violent behavior is difficult, error-prone and not something most mental health professionals are trained to do it, say specialists who deal with violence among the mentally ill.

“We’re not likely to catch very many potentially violent people” with laws like the one in New York, says , a professor of psychology at Fordham University in The Bronx.

The New York law says mental health professionals must report people they consider likely to do harm. It also gives law enforcement officials the power to take guns from these people.

Such laws “cast a very large net that will probably restrict a lot of people’s behavior unnecessarily,” Rosenfeld says. “Maybe we’ll prevent an incident or two,” he says. “But there are other ways that would be more productive.”

Better alternatives include reducing the total number of guns and improving access to mental health care, Rosenfeld says.

One of the biggest problems with laws like the one in New York is that it asks all mental health professionals to make assessments that are difficult for even those with years of special training, says Rosenfeld.

Rosenfeld says when he is called in to assess a person’s risk of violence, “I typically have the benefit of a lengthy face-to-face interview, records on their criminal and mental health history, a tremendous amount of information at my disposal that the typical mental health professional on the fly simply doesn’t have.”

And even highly trained professionals with lots of information often get it wrong, research shows.

´¡Ìý at a major urban psychiatric facility found that they were wrong about which patients would become violent about 30 percent of the time.

That’s a much higher error rate than with most medical tests, says , a psychiatrist at the University of Michigan and an author of the study.

One reason even experienced psychiatrists are often wrong is that there are only a few clear signs that a person with a mental illness is likely to act violently, says , a professor of psychiatry at Columbia University. These include a history of violence and a current threat to commit violence.

Without either of these, Hoge says, “an accurate assessment of the likelihood of future violence is virtually impossible.”

“The biggest risk for gun violence is possession of a gun,” says Hoge. “And there’s no evidence that the mentally ill possess guns or commit gun violence at any greater rate than the normal population.”

Â鶹ŮÓÅ Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at Â鶹ŮÓÅ—an independent source of health policy research, polling, and journalism. Learn more about .

USE OUR CONTENT

This story can be republished for free (details).