Top local TV anchor plunged into medical nightmare
DURHAM, N.C. (AP) — When Frances Scott left the Triangle's WTVD in early 2012, she was at the top of her professional game, one of the ABC station's most recognizable and beloved anchors.
She was also physically and mentally broken.
Scott, 39 at the time, had just undergone a double hip replacement surgery to fix a painful congenital joint problem (she was born without natural hip sockets). Everyone — her, her family, her doctors, her employers — expected her to be back at work and back to normal in a matter of months.
Instead, Scott, a mother of three young children, was plagued not only with constant hip and leg pain from the surgery, but confusion, memory loss, hearing loss, shaking hands, migraines, kidney pain, skin lesions and uncontrollable fits of rage.
She thought she was going crazy.
A year after she quit her job at ABC11 — a few months before she and her husband, Skip Phillips, relocated their family to Austin, Texas — she got her first clue as to what was causing these life-altering symptoms: the metal-on-metal hip replacements that were supposed to have given her a new, pain-free life, were instead slowly killing her.
To make matters worse, Scott learned that Johnson & Johnson DePuy, the company that manufactured her Pinnacle hip, knew the problems with the hardware and kept selling them anyway. (The company discontinued metal-on-metal hips in 2013 and agreed to a $120 million settlement last month involving claims in 46 states.)
Since making that discovery, Scott has been on a mission to repair her body, her life and her family, and to help others searching for answers.
SOMETHING'S NOT RIGHT
Scott said she knew not long after returning to work in early 2012 that something wasn't right.
"My memory was just squirrely," Frances said in one of a series of phone interviews for this story. "My hands would shake sometimes in the morning meeting and I'd think, 'Wow, I've had too much caffeine.' I got lost on I-40 on one of my last days coming back from a doctor's appointment, headed from Durham to Raleigh. And you know, that's the most common thoroughfare in the whole region. Who gets lost on I-40? It was terrifying."
Scott was also in excruciating pain. But that, she said, she could often fake her way through. Other things she could not fake.
"I was horrifically miserable, but then I had these blemishes breaking out on my face that would just crack open and bleed, and I was starting to get embarrassed about my appearance. I'd be assigned the night shift and show up at 9 o'clock in the morning — I did that several times. . . . My personality felt different, and I knew I was acting differently at work and at home than I had ever acted before.
"I told my husband, 'I feel like I'm a raging alcoholic, but I'm not drinking and I'm not on any drugs and I don't know what's wrong with me, but I can't control it.'"
Scott said her bosses and colleagues at WTVD had been great, holding her job four months beyond what is required by the Family Medical Leave Act.
"They had waited for me all that time to be able to get back and I just had done so poorly. . . . I was just really embarrassed and ashamed that I didn't just pop back from surgery."
IN TEXAS, THE FIGHT BEGINS
Scott's family moved to Austin later that year. Her husband, a CPA, was from Texas and went to school at Baylor University in Waco. He got a job doing accounting for a small pet products company based in Austin.
Before leaving Raleigh, Scott had read an article in The New York Times about the DePuy Pinnacle hip being pulled from the market. Settled in Austin, she started doing more research and learned about trials in Dallas involving Johnson & Johnson DePuy. There were four trials in all, with DePuy losing three. Scott attended two of the trials, making the three-hour drive each way so she could listen to everything they said in the hearings.
"The evidence was jaw-dropping," Scott said. (Scott was part of a multi-district litigation case but she hasn't received an offer from Johnson & Johnson DePuy, and she doesn't think she will.)
Around this time she also watched a 2017 Netflix documentary about the medical device industry called "The Bleeding Edge," which featured Dr. Stephen Tower, an orthopedic surgeon with a metal-on-metal hip having the same neurological symptoms as Scott, including manic episodes. Tower learned his problems were caused by cobalt metal poisoning that was damaging his brain. He now advocates for testing the cobalt levels of his patients if they complain of having Parkinson's or dementia-like symptoms.
Meanwhile, Scott said her behavior at home — the crying, the rage — was disruptive to her family. She credits her husband with holding the family together.
"I knew something was wrong with me," Scott said. "I didn't know what, but I couldn't control it and it made me sad. At one point Skip said, 'You don't want us to remember you this way,' and it really hit home. I said, 'Don't leave me, don't divorce me, but you need to take the kids and go to a different place where they don't have to be around this.' And he didn't.
"I asked him years later why he stayed with me, because I was a lunatic. He said, 'I knew it wasn't you. I had known you for 12, 13 years before this, and none of what you were doing matched who you were before the surgery, so I just knew in my gut it wasn't you.'
"Also, he stayed because that's the kind of person he is," Scott said. "So I'm lucky."
Scott knows just how fortunate she is because she has gotten to know many people who were in her same situation and didn't get the same support.
"It was a horrible time and it's sad for me to talk about now, because I know so many people — their spouses do leave. And to think it just comes down to metal poisoning and people don't even know. Their doctors aren't even checking them for this, and their marriages are being destroyed by it."
MAKING PEACE WITH WHAT SHE HAS LOST
During this time, Scott had been seeing a doctor in Austin who, like her doctor in Raleigh, told her there was nothing wrong with her hips and that he could not help her. (Scott later looked up her doctor on Propublica's Dollars for Docs website and learned he had taken nearly half a million dollars from Johnson & Johnson DePuy as a consultant.)
Scott left that doctor and looked for others, but had trouble finding anyone willing to help. She was also getting tested for chromium and cobalt poisoning during this time, and results showed cobalt levels in her urine much higher than normal. She needed what's known as "revision" surgery, which would replace her metal-on-metal hips with a type that uses metal with ceramic or plastic. She finally found a doctor who would do the surgery and in 2018, after 7 years of constant pain, she had her hips replaced once again.
"Eighty percent of my symptoms went away, almost instantly," Scott said. "The kidney pain, the confusion. My head started to clear."
But the revision surgery wasn't a total fix.
Eight weeks after the procedure, she dislocated one of her hips, an extremely painful setback. She still has ringing in her ears and considerable pain from an impingement caused by a piece of the new hip rubbing against and tearing muscles and tendons. She also has damage on the walls of her heart, and the lasting damage done to her kidneys is not known.
But Scott says the damage to her family and everything they lost because of the bad hips is what pains her the most.
Her twins were 7 at the time all of this started, and her youngest was 5. Scott said she can make peace with the fact that she has had to live in pain, that she lost a career that she loved, that she lost relationships because she was acting "crazy" and people didn't understand, and that her family has been financially ruined by medical bills.
But she can't make peace with the years she lost when she couldn't be the kind of mom she always dreamed of being.
"That's the one thing I really struggle with forgiveness about," Scott said. "This was the only chance they had to have a childhood. . . . All they know is me crying on the couch because I can't stand long enough to put away the laundry. Me freaking out because of one of those cobalt-caused rage incidents that I couldn't control. Me limping, me crying, me falling, me with boils all over my face. This has dominated their childhood. I still have tried to make good memories with them, but it's always there. That's the thing I still really have grief about. It's like a 6th member of our family, this nightmare. . . . They're not going to have memories of yearly trips to the beach to go camping. We couldn't do that. We spent all our money on surgeons."
REBUILDING HER LIFE, HELPING OTHERS
Scott is still in a great deal of physical pain every day. She estimates she has only two hours each day that she can be active or be on her feet.
"I hope that will get better over time," Scott said. "But right now I get about two hours a day on my feet and that's it. No matter what the house looks like or what my kids need, I can't stand more than that. And that's just a reality I've had to accept."
Part of her time is devoted to her job as a spokesperson for the flooring company 50 Floor. It's something she started while still in Raleigh and was able to continue after moving. She records live spots for 50 Floor that air during a local lifestyle show in Austin.
"It's about one hour a day on my feet, five days a week," Scott said. "That (job) has helped me tremendously. They've just been awesome."
Another slice of her active time is devoted to ice skating. It takes a physical toll, she said, but it's one of the few things she has that makes her feel normal.
Scott said her family fell in love with hockey because of the Carolina Hurricanes (her oldest son plays junior hockey in Michigan), so she immediately thought of ice skating when her doctor recommended (before revision surgery) that she find a low impact physical activity. The first time she tried it, she visited a rink in Austin, put on a lot of extra pads, and thinking "what the heck," slowly pushed her way across the ice.
"It simulated that feeling that I always loved of running with the wind going past your face," she said. "There were not many people in the ice rink in the middle of the day, and I didn't have to be embarrassed that I limped or couldn't skate."
After six months of going five days a week, Scott said she would limp to the rink, skate through the pain, then feel good for about an hour after. "I was able to come home and put away some laundry for the first time and not just sit on the sofa and cry with everything hurting.
"It really gave me my life back."
Skating has been more difficult since the revision surgery, because the impingement causes pain.
"But I can still skate two days a week — because I need to. I need to have something that I can still do that I enjoy. I'm hanging on to the skating with my last bit of strength."
Scott also spends as much time as she can helping others suffering because of faulty medical implants.
Now that Scott has figured out what was giving her the Parkinson's-like symptoms and making her feel crazy, she feels even worse for those still in the dark.
"I'm trying to advocate for people now and have them get blood checked," she said. "How many people are out there who think grandma is acting weird because she has dementia?"
KVUE, the ABC affiliate in Austin, reported on Scott and the FDA's shortcomings in testing medical devices in February of this year. KVUE's story included court documents showing that Johnson & Johnson DePuy engineers knew about the problems with the hips as early as 1997 and warned company leaders, who did nothing.
Scott said many people find her because of the KVUE article and through her YouTube page, where she has posted videos about her struggles with the metal-on-metal hips.
She knows a commercial airline pilot who, after a metal-on-metal hip replacement, can no longer work and is now searching for Section 8 housing. She has become friends with a woman in Raleigh who has such severe heart damage from metal poisoning that she's now in need of a heart transplant.
"People reach out to me, most of them are divorced or they say 'my girlfriend said she just couldn't deal with the rage anymore,'" Scott said. "It's just staggering. So many people are not only physically disabled by this and losing hearing and having vision problems, but the worst part is I know this is destroying families, because it almost destroyed mine. It could have, were it not for the integrity of my spouse. I'm really lucky."
Information from: The News & Observer, http://www.newsobserver.com