EP05 - METAL ALLERGY NIGHTMARE WITH METAL-ON-METAL HIP REPLACEMENT News Anchor Loses Career - Dismissed As Crazy!

[00:01:15] Shari: Hey Metalheads! Welcome to the jungle. Thanks for tuning in today! The Heavily Metalled Podcast. Today we have a special guest joining us from deep in the heart of Texas. We're gonna welcome Frances Scott, who's gonna share with us her journey with suspected metal allergy and metal toxicity, metal poisoning due to a metal hip implant and she's gonna have a great story to share with us. It's a harrowing journey, like all of these patient stories that you're hearing. Thanks for coming on with us today, Frances.

[00:01:46] Frances: Oh, it's my pleasure. It was a great journey, meaning great, like big and all encompassing and…and hard to figure out. But yeah. I was, 38 years old mother of twins and a baby, they were seven and five. And, married and I was a news anchor in Raleigh, North Carolina, working with people I loved at, you know, dream job that I had worked for 15 years to kind of get to that point in my career. And, um, I just had this nagging hip pain. And they kept saying it was coming from my back.

[00:02:15] And I'm like, ‘well, I do have a herniated disc’, but it hadn't bothered me for years. Like, I remembered that pain and I just knew this was different. So I went to a different doctor than the ones I'd been seeing in a different town. You know, we had a move, I got a new job and moved to a new town around the Duke, North Carolina area, Durham, and, uh, went to a doctor and she diagnosed me with femoral acetabular impingement with labral tears.

[00:02:40] And so basically the cushion…the pillow between my ball and socket that….cartilage. And then there's this pillow, kind of like the meniscus in the knee, it's called the labrum. She said, “Your labrum are torn. Uh, you need both hips replaced. You're never gonna get outta pain unless you do this.”.

[00:02:54] And I was pretty shocked. So I spent the next year kind of investigating like, do I really need…? Like 38 is young to have your hips replaced? So I went to….or got consulted by 12 different doctors in multiple states. Flew myself to Boston Children's Hospital. Basically there was a hip preservation surgery that they said might help, but probably wouldn't.

[00:03:16] I had that done. Ended up right back in pain, severe pain a couple months later. Well, actually nine months later to the day in September of 2011, I got both hips replaced in one surgery. And, you know, they told me that was gonna solve my problems and I would be better.

[00:03:34] I got a Johnson and Johnson DePuy Pinnacle Hip with the metal ultimate liner, which is a…basically a hip is a cup, a cup liner, the ball, and then the stem that goes down your, down your legs. And so that's, that's two products. The top three parts; the socket, the socket liner and the ball is one product.

[00:03:55] And then the product that goes down your leg is another product. So the top product was the DePuy Pinnacle and then the liner option, so that…that cup liner, the thing that will be presumably replaced in the future. You know, like 10…20 years later, you could get ceramic, plastic or metal. The metal is a cobalt, chromium, alloy.

[00:04:16] So it's cobalt, chromium, nickel, and molybdenum. Nickel is the problem in many cases because, you know, I think I've heard like one in four or one in five people is allergic or reactive or highly reactive, or has some sort of immune response to that particular metal. And there's metal in that…there’s nickel in that alloy.

[00:04:35] So immediately my face erupted in what I would call extremely painful lesions. I had had like, you know, hormone based acne as a kid, and I mean as a teenager. And they said, “Eh, I mean you’re…you’re what, 40 years old? Like, ya know, sometimes it comes back. And I'm like, ‘but this doesn't act like normal acne. Like when I smile it, it cracks open and bleeds’.

[00:05:00] And here I was a, a news anchor in high definition television. You can't have like bleeding lesions all over your face. They were, they were kind of pea-sized. And, and I would pack on the makeup and do what I could and went to dermatologists and they just kind of shrugged their shoulders and said, “Oh, it's, it's acne. It's your age.”.

[00:05:18] And I'm like, ‘but three weeks ago I didn't have it’. And so that was kind of making me go ‘something's changed’. So I had a bunch of other…a host of other problems pop up. The acne was the most, you know, concerning cuz it was right there. It was the most obvious. You can go back through my pictures in, in my cloud and see like, perfect skin…perfect skin…perfect skin…perfect skin and there…

[00:05:41] There's the surgery. And about two or three weeks later, my face looked like, you know, I was a meth addict. No offense to anybody, you know, but it's, it's not the look you're going for. You know, that kind of stuck in my head, but doctors really didn't have any answers. And I, I started eventually over the months that followed, because I also had severe pain in both the hips, like worse than before the surgery.

[00:06:05] And I was pretty bad before surgery, you know, I was like,’can you do this surgery yesterday’? I was miserable from the hip pain. And so, you know, I kept going back to my orthopedic surgeon. He's like, well, you know, Frances, the thing I had to do to you…like…your surgery was very involved and they had to do things like kind of turn the way my sockets were positioned.

[00:06:25] So for a long time we just kind of blew it off to that. It's like, “Well, you know, I've never had to do what I had to do to you…”, so it makes sense. Then they told me, “Oh, well you're younger and so your nerves work better than if you were 80 years old, so that's why you have more pain.”. Then they said, “Oh, your body has learned that pain is normal, so it's gonna take you awhile to, to unlearn that.”, you know, they called it central sensation, and you need to go back on all these medications.

[00:06:50] And I'm like, ‘but I don't wanna go on medications’. Some of them were, antidepressants and I was like, ‘I'm not depressed, I just wanna be able to make a sandwich for my kids’. And they're like, “Oh, but you know, we need to retrain your brain to learn that pain is…is not normal. You know, you've been in pain so long…it, it thinks it's normal.”.

[00:07:07] It was just a…a really long disaster. I…I went, to PT, you know, most people get hip replacements. Granted, they're much older, but you know, they're talking about three…six weeks later they're back on the golf course. And here I was seven months after surgery, still in agony and you know, had ringing in my ears…

[00:07:27] I had insomnia, but, you know, I've always been more of a night owl so I didn't think too much about it. But it'd be like five in the morning…. So eventually, you know, I didn't know what was wrong with me. I did have what I would call…what my family would call personality changes and mood and behavioral changes.

[00:07:46] But, you know, I've just been through this big surgery. So I wrote it off to, ‘well…you know, I’m…I’m just kind of traumatized cuz I can't be a runner anymore’, and everything. I just discounted myself and my own gut instinct. And I, and I just listened to the doctors and they're all like, “Hmm, yeah, I mean…you’re fine…the x-rays are fine. That's a great…great product. I don’t…you’re 40, so makes sense that your face would be bleeding all the time…”. You know…

[00:08:12] Shari: All your tests are normal…

[00:08:15] Frances: Oh, “Normal…fine…I don't know what's wrong. And, here, try this PT…try this doctor…try this medicine. And finally, at one point I was on like eight medicines…prescriptions, you know, all taking them as…as directed. 

[00:08:29] And in fact, a lot of times I didn't wanna take 'em. But, you know, that's what the doctor said. And my stepdad was a OB/GYN surgeon, so, you know, very medical family, like, “Just trust the doctors. They have your best interest at heart, do what they say.". But after about a year of it, I mean, it was a complete nightmare for a year with the pain and the skin and the neurological issues.

[00:08:51] So finally I just dumped all the medications in the trash. And my mom was like, “You did what?”.  You know? And I was like, ‘Mom, I don't know what's wrong with me, but with this many factors in play, I can't figure it out, so I need to limit the number of variables’. And one way to do that is just, you know, stop all these drugs.

[00:09:12] I mean, it was crazy. All I did was like, go to the pharmacy…go to the doctor for the refills…and, it made no sense to me. It wasn't good anyway. So what was the point? Like, ‘I'll just quit the meds and see how I do’. The skin didn't get better. The tinnitus didn't get better. The insomnia, the mood and personality issues and behavioral issues, it just…it didn't get better for years.

[00:09:37] I couldn't work anymore. We had to sell our house so we wouldn't lose it to foreclosure. I was our breadwinner-our main breadwinner at the time. And, my husband was mainly the one-he had a, a part-time job, you know, nonprofit accounting, But it wasn't the kind of thing that like could support…

[00:09:53] We didn't have a crazy lifestyle, but we had a great…you know…good lifestyle. And… 

[00:09:57] Shari: You have a Master's degree, right?

[00:10:00] Frances: Yes, yes. I have a Master's and I had worked for the Walt Disney and a ABC Corporation owned my TV station in Raleigh and I had worked there previously prior to having kids. I took four years off when my babies were little, and then they hired me a second time right back. So it was all my friends, you know…dream job… North Carolina was my home state. It was just two and a half hours from my mom and my parents in Charlotte, and then two and a half hours from my in-laws. And so it just, it was a perfect, perfect life and situation.

[00:10:31] And this really….at some point we ended up in counseling cuz I'm like, ‘well I'm going through a lot of…need, some help processing all this’. And the counselor said, you know, most people who go through what you guys are going through see themselves fall like two socio-economic levels. And I'm thinking, ‘gosh, you know, how…how far can we fall?’

[00:10:53] But she was really right. And I thought about, ‘man, what if this is happening to…to somebody who didn't have this salary, or the…you know…the years of work…the nest egg…the equity in the home. Like what if I was just a kind of starting out single mom…teacher…kind of struggling as it was anyway.

[00:11:10] Like, this is awful and it really gave me compassion. Or what if I were single and I didn't have a husband who could go to the grocery store for me? I mean, since this happened to me I’ve connected with a lot of people and… and you just see the, the true devastation-especially for single people or people that don't have a big family.

[00:11:29] There aren't people in their home who can literally like, walk to the mailbox and get the mail for them because they can't do it. So I lost my job. Lost my career… trying to get other jobs, but, you know, I knew I wasn't really in the head, in a good place to work. My last day of work at the…at the TV station that I loved, I went for a doctor's appointment, you know, kind of late lunch after lunch. Had some delays at that appointment and it, it was gonna be cutting it close to get back.

[00:11:58] I literally got lost on the interstate. I suddenly like didn't know where I was, like a dementia patient and I was terrified. I thought about my stepfather who had just passed away from, Alzheimer's and dementia after years of really, you know, serious dementia problems. And I'm like, ‘oh my God, this is terrifying’!

[00:12:17] This is how he felt. I would meet people and talk for an hour, you know, at my kids' practice or something, and a couple days later have no recollection of it. So, really some scary stuff. My husband started noticing. I was an English major, Master's in English and, and language and communication was kind of my thing-both writing and oral.

[00:12:36] And, you know, I said, ‘are, are you noticing some stuff?’ And he said, “Yeah, you have like mistakes in your writing…in your text messages to me that you never would've made before.”. And I noticed I couldn’t…I couldn't sing-like I couldn't remember any lyrics to songs, and I'm not a good singer, but I did used to like to sing and even songs that I knew I could have, you know, had every word by heart suddenly, like, I just…I stopped singing because I couldn't remember any of the words. So really it was cognitive that seemed to be the next thing that…that hit me. 

[00:13:07] Shari: And your work started noticing as well, right? 

[00:13:12] Frances: I'm sure they did. I mean, I wasn’t…I wasn't at all myself. I would have these…I called them like PTSD-like fits of rage. And I told my husband at one point, I was like, ‘I don't know what's wrong with me, but I feel like a PTSD patient coming home from war…a soldier, and I can't control it.’

[00:13:31] I said, ‘I feel like, a raging alcoholic, but I'm not drinking. I'm not on drugs. I don't know what to give up to make this stop, but I can't control it, so I don't want my beloved little children…and you-my husband's a great guy, to have to live with me since I can't control it—I said, ‘you know, I feel like you should take the kids and go somewhere else. Don't divorce me. Don't like move on and date other people, but like, find some other place to live because y'all shouldn't have to live with me. And I'm a lunatic.’  

[00:14:01] Shari: Prior to this, you had no…no…history of medical issues. No history of substance abuse. No history of alcohol. No psych history. Nothing.

[00:14:10] Frances: I had some, uh, I would say low level postpartum depression after, you know, my twins were born, but I had just…

[00:14:16] Shari: Normal stuff.

[00:14:17] Frances: Yeah. I had spent four months in hospital in bedrest with the twins. And then I had a postpartum hemorrhage right after I delivered the twins. So I came home like really weak. With twins….it was a hard time. So, you know, I had taken an SSRI during that period, but never diagnosed any, like, generalized anxiety disorder. Nothing like that. It was more just like, you go to your OB and you mention it and she's like, oh, you know, I'll put you on this because you're probably…you’re at risk for postpartum, so let's go ahead and treat it without even knowing…knowing you have it.

[00:14:50] But I mean, I think the biggest testament is I had worked at my TV station for about seven years. Left for four years…and they hired me back. Like, you don't get hired by the same people twice if you had been a…a nut job the first time. 

[00:15:05] Shari: Sure. right

[00:15:07] Frances: And I think…I think the assumption was, you know, like, “Oh, she left for a surgery…She came back acting kind of crazy.”. What's the assumption gonna be? We were in the middle of the opioid crisis, you know? And at one point that's part of the why…like, I didn't take the drugs anymore cause I'm like… is it the anesthesia? Is it the pain meds? Like, of course I took pain meds after the surgery.

[00:15:26] I had both my hips replaced. And when I woke up from surgery, because they changed the version of my hips, the way they pointed… Like in the past when I lay on the beach or something, my hips would flop out, My legs would flop out. My feet would flop out to the side. Kind of like Charlie Chaplin-like a duck.

[00:15:41] And when I woke up from surgery, my toes were pointing to the ceiling for the first time in my life. So like, they really did do a lot. And they lengthened my legs to prevent dislocation. So I was an inch taller than I had been. So like it made sense that I had, you know, crazy pain. When the doctor told me, you know, I wasn't progressing like normal people, the PT is like, “You shouldn't still be in this much pain.”.

[00:16:03] ‘Well, I don't wanna be, but I am'. So then when they explained, “Oh, maybe your nervous system has learned that pain is normal, you know, the central sensitization diagnosis, they made me go back on a SSRI type thing. And, along with pain meds again. So looking back, was I over-medicated? Absolutely! Until I quit everything.

[00:16:27] But was I taking it for a high? Was I taking it to escape my life? No. Like I had grown up with an alcoholic grandfather who, you know, would drink and take…Xanax, I think…no Valium, together. So I had a pretty powerful example of how I didn't wanna be—especially as a parent.

[00:16:45] So, I drank growing up and, you know, after college and early adulthood but once my twins were born, I was like, ‘I don't wanna set this example for my kids’. So really at the…the beginning of the hips, you know, my husband and I didn't even drink. We were like…we were kind of boring. So, yeah. I mean, I wouldn't say I'm like completely fine. You know, I'm a…I’m a sensitive person, I'm an emotional person.

[00:17:11] That's what made me good at my job because, you know, the viewers could sense that I cared about the stories—cuz I really did. You know, I am one who lives with my heart wide open and on my sleeve. So, you know, I would say compared to my husband, the accountant, my highs are higher and my lows are lower, but this was a whole new world.

[00:17:31] Shari: The medical industry's just trying to tell you the stuff that they tell you when they don't know what's going on. They're just trying to come up with anything, grasping at straws so they have an answer and can feel good about themselves at night.

[00:17:42] Frances: Yeah. And I…and I knew from my stepdad, surgeons and doctors aren't really ones to just say, “I don't know.”. I think that's hard for them. I think they know the expectation is the patients are there to get an answer and in it. And I love now the doctors that say, “I just don't know.”. I had one doctor prior to the hip replacement surgery that was just begging me not to get it, and he was a hip replacement surgeon.

[00:18:07] He said, I believe you about the pain. I don't know what's going on, but, let's just not…let’s not do that. You're too…you’re just way too young. But the other 11 said, “Get the hip replacement.”. So that's after trying the experimental surgery first. I…not experimental…but the hip preservation surgery first, you know? I said, ‘look, I gotta get to living!’

[00:18:27] ‘My kids are growing up. They're eight years old and six years old. Like, I need to be able to walk to the park with them’. So, yeah, I mean, I was forgetful before—an ADD person. But this was like scary forgetful, like getting lost on the interstate, you know? In a town where the only interstate in town….I counted it up. I had driven that interstate a thousand times before, cuz the prior time I lived there, it's I-40, it runs through North Carolina. I mean, you don't get lost on I-40. 

[00:18:54] Shari: Sure. 

[00:18:55] Frances: And I usually never forgot people. Like, I might forget your name, but I'm not gonna forget…you know, your story, cuz that's the way I'm wired—for story. So Yeah. It was a pretty awful time. 

[00:19:06] Shari:  Let me go back for just a minute and ask you, before your surgery, how much pain were you in? Were you in enough looking back That you could have continued without the surgery?

[00:19:17] Frances: Yes. I mean, I…looking back, I wish I hadn't gotten it, but, I wish I'd quit my job and gone and worked, you know, four hours a day on…on just recovery. I really think it all started with the bedrest, uh, when my now 19 year old kids were in utero. I sat there for so long and, and atrophied and really I should have gone into PT at that point. And so when I stood up to walk all the muscles that kind of hold the…the hip together, they were loose.

[00:19:44] And then I have, you know, high mobility. I'm slightly flexible—more flexible than other people. And so I think it was just like a mortar and pestle. And then I…I had another pregnancy and you know, the hormones of pregnancy, relax everything even more so.

[00:19:57] Shari: But you were still walking and functioning?

[00:20:00] Frances: Yes, but I was in terrible pain. I would say it was a nine out of 10. I remember at one point, my leg…my quad muscles…I had to go to Charlotte to help my mom through a knee replacement surgery. And I had just finished work at…at 11 o'clock at night and I was gonna get in the car and drive the three hours to Charlotte through the night cause I didn't wanna, you know, miss work or not…not be with my kids as much as possible. And there was so much pain. Like I was driving…like holding myself my butt up off the seat because there was so much pain in my hips and my legs were just, you know, quivering. So I was at a…a bad… 

 [00:20:34] Shari: You were disabled.

[00:20:36] Frances: Something was…yeah…it was very, you know…my husband would put me in our kids' wheelbarrow if I wanted to go with them to the playground and pull me in a wheelbarrow. You know, I’m…I could look normal like with Advil, and it was bilateral, so I didn't limp cuz both, both legs hurt equally.

[00:20:51] If I were guilty of anything, I'd say it’s trying to fake it too much. Like I was fine. Because what are you gonna do? Talk about how much you hurt all the time? Like, no…you’re there to do a job, you're professional. You know, I'd be bringing in the exercise balls to sit on thinking, you know, maybe I…if I could just move a little more or whatever?

[00:21:10] I had been dealing with this for years. And then for it to not help and to actually…I ended up sicker and in worse shape…was just devastating. I, I just had this gut sense that just, this isn't right. I had had surgeries before. Had a ACL tear. Um…I had IVF so there were…you know…a lot of surgeries about that. I knew I had a pretty high tolerance for pain and I had never had trouble with surgery before. You know, I had broken my nose. I had broken my arm three times. ACL… broken my ankles—lots of sprained ankles. I was really an active person.

[00:21:46] So this one was just different. And I just started feeling like it had all just started with the surgery. So maybe it's the devices, like maybe there's something. And the skin was such a…even my husband who’s…he’s not really a medical person…he’s just like, “Your skin just erupted.”. And thankfully, I look back now, that was my canary in the coal mine.

[00:22:10]The pain and the skin. So what I finally figured out was I'm probably allergic or hypersensitive to nickel. My grandmother had had a…an incident with her earring when my mom was little and it…it literally sent her to the hospital and she almost died. My mom had to go stay with other people. 

[00:22:30] Shari: Wow. That's extreme.

[00:22:30] Frances: Highly reactive to nickel. And I had had a couple of earrings that, you know, if I wore them the whole day, the hole in my ear would bleed by the end of the day. And it was just, they hurt. It wasn't every earring. It definitely wasn't solid gold earrings. And so that, thankfully though, was kind of the…the trigger. Once I lost my career…once we had to sell our house and we were really destitute, I mean we were in a serious…cuz we had bet on my career.

[00:22:58] My husband had walked away from a small business he built in another state cuz I had the good job. You know, once we bet on me and then my body kind of melted down and I melted down, Evacuated North Carolina. We… we noticed I did a little better in the summer. I had like a little less pain.

[00:23:14] The symptoms didn't seem so bad. My skin didn't seem so bad, and we thought maybe I had some sort of vitamin D deficiency, like really severe or maybe my body needed more. So we moved to Texas and right about that time, the company that made my hips, Johnson and Johnson, announced in the New York Times—I found the story…covered it…that they were not gonna sell that hip anymore.

[00:23:36] If you read the story, it…it says, you know, poor demand. I just knew. And so I started digging and eventually one doctor I saw here who does not do hip revisions, but he's a hip surgeon. You know, he'll do 'em, like if he's on rotation. One doctor here in Austin said, “Yeah, those, those metal and metal hips, like you need to get those out.”.

[00:23:55] And so he was the first to….to even admit that there was a problem with the product. So I started looking into the company, the hip itself, and I found out there were all these people who had sued the company over the hip. And there had been test cases that had gone forward. And the first test case came back with like a verdict for $200 million for five people.

[00:24:19] And I was like, ‘oh man. I was like, is this a runaway jury or is there something really that bad that ticked off the jury’? Those test cases, the bellweathers, what they're called, had happened in Dallas. That those…that first one…or the second one really. And so I told my husband when the next one happens, cuz there was one…

[00:24:38] The third was set to happen in Dallas and I said, I've gotta go. And I had covered trials before as a reporter…federal trials before. And so I said, ‘you know, the doctors could be lying, the company could be lying. The other people who had filed suit could be lying. The lawyers could be lying, but the evidence won't lie’. And so he watched the kids for me and as many times as I could, I got in my little car and drove to Dallas and sat there in the trial like I was the courtroom observer, like I was a reporter.

[00:25:09] I found, and watched and saw the evidence, and heard the testimony. There had just been blatant scientific fraud in many cases, used to promote the hips. There was knowledge ahead of time that, you know, one of their lead hip developers was like, “Why are even talking about this metal on metal design of a hip?”.

[00:25:30] Turns out metal on metal hips had been sold in the sixties and seventies, and the results had been disastrous for the patients. And so their lead hip developer, when they started talking about bringing that type of hip back to market in the mid nineties, he wrote the company leaders a memo, and it's called “The Endgame Memo”.

[00:25:50] And he said, “You know, what's the endgame here? Like, why are we even talking about this? We have better bearing surfaces. We know what happened last time. There could be a catastrophic release of debris…”, et cetera, et cetera. That's when I started actively looking for a surgeon to remove the hips.

[00:26:06] When I went to court and I learned all this stuff. I thought about ‘what about the poor women way up in Michigan who has no idea, like she knows she's not right, but she has no idea of what I'm learning in trial’. So I'm gonna put it out on YouTube so that if somebody's looking, they can find it.

[00:26:21] The benefit of that turned out to be other people started finding me, like they started reaching out to me. And so as a result I started…kind of networking and finding there were a lot more people having trouble with metal knees, metal shoulders other cobalt/chromium implants, and I wasn't alone. There were lots of us. 

[00:26:44] Shari: At this point, you have two things going on. You have a suspected metal allergy. You can tell us if you had any testing for that…but you also have the issues that you know of from the hardware development end-so you're dealing with two things hypothetically. 

[00:26:58] Frances: Yeah. One was the cobalt in the alloy. Turns out that's cardio-toxic…as a medical community found out in the sixties that…that cobalt is toxic to cardiac tissue. Especially we've since found out it's toxic to brain matter too.

[00:27:12] But, in the sixties, a couple of beer companies in central North America, like Canada and…and North…and…the US had put cobalt in the beer that they were producing as a foam stabilizing agent and a lot of people dropped dead all at the same time, or had serious cardiac issues, came into the ER’s, you know, it was conundrum.

[00:27:33] This is the sixties and the seventies, right? So eventually somebody studied it, put it together, figured it out that it was the cobalt—that these were the same things. They were all beer drinkers of all different ages cuz people of different ages drink beer. And they had all had the same beer from a couple different companies and all those companies were using cobalt.

[00:27:51] And so now it's in the medical literature. You can go to PubMed and…and look up “cobalt cardiomyopathy”. I've learned this stuff gradually over the years. Put it out on the internet…connected with the other people…realized I wasn't alone and began learning. I most likely had two issues going on.

[00:28:07] It was called a type IV delayed hypersensitivity to, most likely the nickel. That's usually the, culprit. And then also the cobalt itself was damaging me neurologically. I…and I'm not sure why. You know, my cobalt levels weren't high enough for doctors to kind of freak out, but mine was about four parts per billion.

[00:28:33] And through that process I had connected with this woman in North Carolina named Julie, who only had one hip…never had the skin stuff. So she didn't have any sort of dermatological type reaction. So she thought the hip was great. Didn’t have the severe pain like I did, probably because she wasn't allergic to the device itself, or one of the metals in the device, and ended up dying of what the cobalt did to her heart.

[00:28:57] And she warned me, she said, “I don't care what anyone tells you, get that bleep out of you!”. You know, that was powerful. And she said that early on and, she had had my same surgeon, exact same product. She only had one of 'em, I had two. She had gotten hers before me. So, you know, I was one of the last in the last year to get the product.

[00:29:19] Shari: What did you have done ahead of time and…and since you had a metal sensitivity, did it even occur to you ahead of having the hip implanted?

[00:29:28] Frances: I didn't know I had a metal sensitivity. Most people don’t. I had no reason, you know? I just…’oh, those are cheap earrings’. This is one or two sets of cheap earrings. And you know, normally before I was a news anchor I would've just had like three or four pairs of earrings and that's just kind of it. And they just all happened to be gold, cuz that's what my parents bought as gifts. Once I got on TV and, you know, you have the consultants and you need to change it up and you need to progress with fashion.

[00:29:53] And so then I had a huge wardrobe and…and earring wardrobe. But I would've just said, ‘oh, that’s…those are just cheap earrings. They're bad earrings’. I had no idea. And nobody asked me. Nobody suggested I needed a test ahead of time. I had done research in that year before hip replacement that I knew that there was one type of hip that had been recalled by Johnson and Johnson DePuy. 

[00:30:16] It's called the ASR. And I was reading in the medical journals about these cobalt ions that get in your blood and these chromium ions. And I asked my doctor about it and he's like, “Oh, I mean, yeah. And that was just that one device. This one's nothing like that device.”. Well, it turns out that bad, recall the ASR device had gotten to market based on the company's assertion that it was so much like the Pinnacle, which is what I had, that they shouldn't have to do clinical trials.

[00:30:45] That's one thing people don't know is that most medical devices don't have to go through human clinical trials before they get to market. They just have to be based… Oh, it's just…it’s just like this other hip that we used to sell. That's now off the market. But, you know…

[00:30:59] Shari: Right? Small details. 

[00:31:00] That's a whole….that’s a whole other disaster. So I had asked my doctor about it and he said,”Frances, how can anything measured in parts per billion really be that bad? Like, yeah, you're gonna have like slightly elevated cobalt and chromium compared to let's say your husband who has no metal in his body, but it just doesn't matter. It doesn't mean anything.”Like, you know? 

[00:31:19] Shari: Mm-hmm. 

[00:31:20] Frances: Come to find out that's just not, the case. And I don't know whether he knew that or not at the time. Maybe he was told that by the device company reps or in the literature, which is usually device company funded. But the anecdotal stories, the patient stories were just really hard to ignore because when you get a hip replacement, you wanna do well. You wanna be like, ‘oh, it was great. And now I play tennis and everything's awesome’. Like people don't want to sit…most people…don’t wanna sit on their sofa the rest of their lives. They don't wanna be in pain. I know there are some mental illnesses or you know, there might be the phase one or two, you don't get a hip replacement if you weren't a go-getter at some point in life.

[00:32:00] Usually because like, we were runners. We were dancers. We were, you know, marketing executives and I mean, we're an active type-A people. So to suddenly hear all these people “Yeah, now I'm crippled.”. I mean, you're the type that's gonna fight that with every bit of your being. And I was too. And when it was all over and I'd gotten the hips, the bad hips taken out and revised… re-replaced, I said to my husband, like, ‘why…why didn't you leave me when I was a nut job and on the sofa and crying all the time’? And he said, “Because I knew you before and you were nothing like that.”.  He's like, “I didn't know what was wrong, but I knew it wasn't you.”. But you know, most people…their spouses leave…they lose their career. They lose their home. And you know, when you lose your health, it plunges you into poverty and usually isolation too.

[00:32:51] So it's because that, I'm so grateful that I didn't end up like that, that I felt like, ‘man, God really gave me a gift to let me see what this is’.And wow…I’m also trained as a public speaker, 20 years, consulted by Disney. Like, you know, I…I know how to…to do this. So I just felt like I had to speak up because what I learned at trial was in many cases, the doctors don't know they're being lied to in some of the medical literature.

[00:33:20] So what I saw at trial was…here’s an example. Like there's a study that says it's gonna be looking at, you know, how the patients do. So we start the study on this date. We finish on this date, and we report on the outcomes of all the people in between these two dates. Well, this particular researcher had just… one woman died. He threw her outta the study and the plaintiff's attorney had him on the stand and said, “Well, well she died.”. And he threw her out of the study and he said, “Well, our study was looking for adverse events…unexpected adverse events. We expected people to die. So we threw her out of the study.”. Like once you start seeing…and there were many cases of what normal humans would call blatant scientific fraud…like not sticking to generally accepted scientific practices.

[00:34:04] So once I saw the fraud, you have to understand Shari, I grew up reading medical journals just because that's all we had in the house. There were no cell phones, we only had three channels of tv. And you know, you're sitting there in the den and all you have is ACOG, you know, Journal of the American Medical Association, New England.

[00:34:22] I read them growing up. I didn't understand them, but that's what upset me so much. I thought if we can't trust the science…if some science good, some science is bad, and they're all kind of published together and most are industry funded, how can you trust any of it if you can't tell the good from the bad?

[00:34:38] And that's been something that I've since been trying to get out there. Like I went to a trial that lasted four months long. Now I didn't go every day, but still, what doctor has four months to go investigate one model of hip? They use lots of models. They have busy practices, and when they're off, they probably don't wanna go sit in a federal trial now, because I was in trying to figure out like, am I just crazy or are these devices bad and am I allergic?

[00:35:07] I had to do that. I felt like I was trying to save my kids' mom's life. I mean, you don’t—especially when it didn't go well—you don't jump into a bilateral hip revision surgery lightly. I mean, it had bankrupt us the first time around. Horrible pain…almost, you know, life ruining.

[00:35:27] I wasn't gonna just sign up for that if it weren't really bad and really like a life-and-death thing. And so I was…you know…it’s…it was a six years of…of really investigating before I finally said these things have gotta come out. And the ironic thing is, if you have something put in your body…a product, installed in your body…and it becomes known as a problematic product, or you become known as a problematic patient, good luck finding a surgeon, willing to touch you.

[00:35:56] I would make appointments with revision surgeons and the nurse would call me and say, “Okay, you have a new patient appointment. What do you wanna…what’s this for?”. And I'd say, 'well, I have these metal on metal hips and I wanna talk about revision’ and then I'd get a call back later… “Yeah, we’re canceling your appointment.”.

[00:36:13] ‘What do you mean?’ “He's just not gonna take you as a patient.”. ‘Why not? What am…I have these hips that are off the market and I'm not doing well. I haven't done well this whole time. Like what am I supposed to do?’ “We'll go back and see the one guy who put 'em in.”. In some cases they'll make excuses like that you don't need to have them out or that they're just not doing that anymore or that you're fine.

[00:36:36] So it took me two and a half years to find somebody willing to take the stuff out…willing to revise my hips. And I said to him, ‘you know, why are you willing to do this? You know, so many doctors just run from me.’ And he said, “Because my dad was an orthopedic surgeon and he remembered when metal on metal hips were sold in the sixties and seventies and warned his son, an orthopedic surgeon, what a disaster it was.”. And he's like, in addition, when he had been training at the Mayo Clinic doing his…surgical residency, he said he cut into a…the surgeon cut into a patient who was getting a revision and it was like pressurized fluid blew out of the patient. And he's like, “It got all over my, my scrubs.”.

[00:37:18] “It got up on the surgical lights every…we all had to change our scrubs.”. And he said “It just made a powerful impression.”. So he had never used…and he said, “Frances, we just don't know the long-term effects of having cobalt and chromium, nickel and molybdenum running through the body because it was a metal alloy that was used for a little while…taken off the market, brought back to market in…you know, kind of the end of the nineties and it's still being used today.

[00:37:45] So even though my particular hips aren't on the market anymore, , they still use the cobalt-chromium ball. And when we got the hips taken outta my body, you could look in the back where the titanium stem fit into the back of the cobalt-chromium ball. It was black inside, it was corrosion. It was what's called MAC…MACC, motion assisted crevice corrosion.

[00:38:09] And I've since learned that because I'm probably reactive to the nickel in the metal…a man named Dr. Schroeder, whom I met when speaking at the FDA, explained to me, “If you're allergic to a metal and they put the metal in your body, what happens? You inflame.”. I didn't understand. Inflamed tissue is more acidic than non-inflamed tissue.

[00:38:30] So now you have two dissimilar metals in a wet environment, and then it's more acidic than normal. So that speeds up the corrosion process so you get more released metal ions in your body and you react worse. So it becomes this cascade…the snowball of problems.

[00:38:49] But the good news is 2018, I got all the cobalt-chromium alloy that contains the nickel removed from my body. Within weeks, I…I haven't had…I forgot to mention the horrible migraines I had. Like, sent me to the hospital. Like get in…investigated for stroke. They were so bad. Haven't even had…and then I had milder headaches that lasted three days, you know, every other week.

[00:39:14] So I haven't had headaches since. My skin is perfect again, aside from the scars that I cover with makeup. There was a complication and revision on one side that has, you know, put me back in…in pain again. But that has resolved over the past four years. So I'm able to kind of function normally without NSAIDs, without prescription meds.

[00:39:34] I do still have to take a Celebrex for that condition that is called soas impingement. So a little bit of the…the, soas muscle that connects your lower back to your inner thigh — the tendon is getting rubbed by the edge of the cup. So, you know, but that’s…that’s gradually gotten better over the past four years.

[00:39:52] And, you know, thankfully I had my brain back. I can think again. I'm not…you know…I still get mad. I mean, I'm a woman after all, but, I don't fly into those crazy, uncontrollable fits of rage and weeping and my family's not scared of me anymore. 

[00:40:56] Shari: That's fantastic. So what, What did they replace the hips with? 

[00:41:00] Frances: Ceramic balls, and plastic liners. The reason I didn't go with ceramic initially is because when you think of ceramic, you think of like porcelain tiles or bathroom tiles or something. You drop 'em, they crash. And I thought, ‘well, that sounds awful. Like I don't want one of those shattering in my body.’

[00:41:17] Well, it turns out, and I don't understand chemistry that well, but I think of ceramic, I think of like mud, right? I took pottery class like mud and you put it in an oven and you fire it and it becomes what I think of as like pottery. It turns out, this is what they call Alumina, which is some form of aluminum.

[00:41:39] It's cerami-sized Aluminum. So the term ceramic is not a scientific term. It's like saying mud or air or water. Like well, what molecules are in it? What is it actually made of? And so it's Alumina and one other metal, but it's not thankfully one to which I'm reactive. And then they cerami-cize it.

[00:42:00] But it was my only option. I didn't have…there’s nothing else. You know? Nowadays you can have metal. You can't have titanium balls because the titanium is too brittle to be that particular part of the product. So what's going down my legs? Same old product as before —they left those in. Thank God those were titanium.

[00:42:19] When I say that, I mean titanium alloy. The cups always were titanium. So they left those in place, thank goodness. And then all they changed were the balls and the socket liners and those became ceramic, you know, cerami-cized Alumina, and then the normal plastic that they use in a lot of surgeries.

[00:42:36] Shari: And you're tolerating these well?

[00:42:39] Frances: Yes. You know, I would say if I had had this surgery and gotten these products 11-12 years ago, I'd be like, ‘yay! Hip replacement's the best thing ever! Everybody should do it!’ And you know, aside from one complication on one side, that has caused a lot of pain.

[00:42:55] That's not related I don't think as much to the device because my left side's great. I have a friend who got shoulder replacement. She's very young, like early forties, has the same…a lot of the same problems. Her skin is just covered in scabs-her scalp and face-they don't make a shoulder that's not containing that cobalt, chromium, nickel, molybdenum. So, like once she…

[00:43:21] Shari: I had no idea… And one of the hallmarks of metal allergies is a bleeding rash. People don't know that.

[00:41:29] Frances: Yeah, it was so painful. I mean I've had acne and I never had acne like that. It didn't form a pustule like a normal acne bump. It…it would, you know, swell. And I could just feel it. I was like, Ooh, I could feel it coming just cause it hurts so bad. And then I wouldn't touch it. And then it would crack open and ooze this clear liquid and then bleed and then form this like circular scar. I mean it's just thankfully…

[00:43:54] Shari: Like a boil.

[00:43:57] Frances: I'd wear heavy makeup. But yeah, I found, you know, cuz you have to be your own doctor…cuz I guess nobody else is that vested, or most docs I found weren't that…just didn't care that much. I mean, they'll see you for seven minutes, but that's about all you get. I don't think they're home at night scouring the literature. So I found, one thing mentioned…what I found they were most, they looked most like were these things called chrome holes that people who used to work in the chromium or chrome plating industry used to get on their hands. That's what looked…that’s what was on my face pretty often. But all that's gone, you know…

[00:44:30] Shari: that’s fantastic 

[00:44:32] Frances: …resolved. I learned about what's called the MELISA test-Lymphocyte Transformation test. It was $400, not covered by my insurance at the time. So I literally just didn't have the money to get it done. And then I thought, well, what’s…what’s the difference either way? I know. I mean, to this day, there's earrings I can't wear. if I eat pizza, which is a high wheat food, I…I kept thinking I was allergic to…to wheat. That I had a gluten issue.

[00:44:58] And then I'd go get the gluten test and they're like, “Nope, no celiac. No gluten issue.”. I was reacting to the nickel in the wheat. So chocolate…wheat…if I eat it…I mean, I still do sometimes. I look like I have a sunburn. Suddenly my whole face turns red for about an hour after I eat. And, you know, all that time we didn't know what it was. Like, man, you…you suddenly, are you flushed?

[00:45:20] Are you okay? And ‘yeah, I'm fine’. It was just, I'm reacting to the nickel in the wheat, so you know…when you know, you know, and what's the point of that? I wasn't gonna take 400 bucks away from my family to go get a test.

[00:45:32] Shari: Right. Did you file an Adverse Event report? Or tell us how you handled that part.

[00:45:38] Frances: I did. Um, I eventually…I don't remember how I figured it out, but I eventually found the MOD database and that's where you go to report adverse events. And I…I just wrote up my own. Like, again, at the time I wrote it, doctors were all telling me it was a great hip and it was nothing like some of the bad hips and just, you know, go away basically.

[00:45:59] And so I just wrote up my own, you know, here’s…here’s what happened. And I went to speak in front of the FDA, November of 2019. I went to lobby lawmakers for improvements to medical device safety laws. You know, there are no warranties. I paid for my second set of hips that I had to buy because the first hips were bad.

[00:46:21] And, you know, a lot of us went to…to the FDA and to our lawmakers to say, ‘you should be testing people for reactions to metals before you implant them in their pelvis and brain’. I mean what is it? One in five Americans have some sort of medical device in their body? Now, are they all, nickel containing or are they all like a highly reactive metal? No. But we should be tested for all the materials. My other hips are gone. Like if I have a pacemaker and I react to it, you can take it out hopefully.

[00:46:53] But some medical devices cannot be taken out like some of the stuff in your neck and you know I could get my hips taken out, but I have to get another set of hips bought and there are no warranties. So I'm paying for all that again. My insurance company….

[00:47:07] Shari: We have another issue in that if you test prior to surgery, but there's no exposure, that test can likely not come back showing any reactivity. So that's a whole other issue. 

[00:47:18] Frances: Yeah, that…that makes a lot of sense. And in my previous exposure, I believe, looking back…and I saw it happen to my daughter too…her skin was great. Granted, it's at puberty… Put the braces on, her face explodes. I'm talking the most painful looking acne ever.

[00:47:35] Take the braces off…her skin's fine. Now we did give her Accutane, which now I'm questioning. But then I asked my mom, ‘uh, mom, you talked about really bad acne when you were little. Like what? Did you have braces when you had bad acne? “Yes.”. So I'm starting to wonder if a lot of what teenagers have that's diagnosed as you know, cystic acne, is the body trying to purge this metal to which, you know, they're reacting. That's in…I used to have sores inside my cheeks that not other…my friends with braces didn't have 'em. I think there's nickel…

[00:48:08] Shari: Sure. Quite possible. My son was diagnosed with a me…with a nickel allergy and he had horrible canker sores inside his mouth with braces during that whole time period. And this is a new diagnosis for him. So now we can look back and completely connect the dots with that. So yeah, I think you're right.

[00:48:24] Frances: It’s pretty shocking. And I started thinking, you know…I talk a lot of this over with my husband and I'm like, ‘well, if the device industry encouraged the FDA to make sure all surgeons, you know, test your patients for all these materials…or make the insurance companies pay for it. So it's not $400 out of pocket to…to get the test to figure out if you're allergic to the metals. They'd sell a lot fewer devices and they'd sell a lot fewer revision surgeries too. Because, you know, if…if you put a device in and the patient doesn't do well…if it's a not great device, you get to sell 'em a second like a lot faster.

[00:49:02] And that's one of the things I saw at trial. It was an email; an inter-company email, between people at DePuy—Johnson and Johnson Medical Device Company—that said, you know, revisions are…revisions are our future. And it's like there’s…there’s almost a dis-incentive to make sure the devices are safe and that the patients won't react to it.

[00:49:21] Because you sell more if you don't test people ahead of time to see if they're reactive. Nevermind the agony. Nevermind the lives ruined. And the kids who have to grow up with a mom who’s…you know…in pain and crying all the time. We’re gonna sell more if we don't test. So I have heard the doctors tell patients metal allergy is not a thing. I feel like I have all these voices. Because…because of my videos, so many people found me. So I've heard all these stories. Sometimes I didn't even write down their name. I'm just talking to them on the phone and I've heard so many stories. People told metal allergies aren't a thing. Or that they’re so exceedingly rare that it doesn't make sense to test. Well who cares if it's exceedingly rare? If it happens to you, it ruins your life! 

[00:50:04] Shari: Of course.

[00:50:05] Frances: But it makes, it makes everybody else a lot of money so there's an incentive to tell you it's not a problem. And to say you don't need to be tested for it and to not force the insurance companies to pay for it. And my response is, every time, ‘$400 for the test. Get the test. I'm not a paid spokesperson for the testing company. Please get that test. You know, I…I gain nothing by telling you. You need to do it’. And my children…you know, if they ever have to have surgery, like I…I want to test them all. 

[00:50:37] Shari: Mm-hmm. 

[00:50:38] Frances: But five of us…that’s…that’s two grand.

[00:50:40] Shari: Sure.

[00:50:40] Frances: So. um, you know….and after you've had major medical for 12 years, you know, I have two grand just lying around…. 

[00:50:46] Shari: So help clarify what testing you had for both the toxicity end and the allergy end that was able to help prove your case.

[00:50:56] Frances: So I never had testing for the metal hypersensitivity because it was $400 not paid for by insurance. And at that point I already knew. So it didn't matter. I wasn't investigating, trying to figure out if I was, I was allergic. When you know, and you see it, and you react like that, and considering my grandmother and the…you know…maternal history…you just know. And I didn't have the money to…to test for it.

[00:51:20] I did request, when I first saw that my devices had been taken off the market, and the New York Times article said that people who have these hips should be tested once or twice a year. Their cobalt toxicity. Their cobalt and chromium ion levels. You can either do whole blood testing or serum testing to see how much cobalt’s in your body.

[00:51:40] Mine initially came back at two parts per billion. My cobalt. They said that wasn't enough to worry about. But if I had been…I looked up on osha…If I had been  exposed to cobalt and my blood level was that high from a workplace exposure, that would've been twice the upper limit accepted, and they would've fined the company and shut down the plant.

[00:52:02] But because I was being poisoned by something put in my body, I mean, it's not that bad. So the levels have been changing too, of what the medical device industry considers acceptable. Two was marked as high. I mean, I have the little test and it has an “H” beside it. That was considered high in 2012 when I got it done. Later when my…because my cobalt levels gradually rose…the most recent test I had before the revision…before I got the stuff taken out…I was up to four parts per billion.

[00:52:35] Well, but by then, the industry standard had been changed. Two was no longer high. Seven was the next upper limit. They said, “Oh, you gotta be to seven before you're toxic.”. And in some cases 10 parts per billion. So I was at a level that the doctors, according to the medical literature, you know, created by industry linked researchers ok….they were like, “You know, you're just not that high.”. But I'm like, ‘considering my symptoms, don't you think it matters?’ But they're being told by the industry that it doesn't matter. My cobalt levels were high. My chromium levels were high. But they weren't like my friend Julie, who had a hundred parts per billion.

[00:53:21] Or Dr. Tower, the guy that you'll see with a metal hip in the Bleeding Edge movie on Netflix. His, were around that. So now why does a lower level affect some people differently than others? My friend…my other friend was having seizures and her cobalt was only 0.9 parts per billion. So it's just…it’s muddy. You know, it's muddy. It's hard to figure out.

[00:53:43] Shari: Tell us Frances, how you've changed from who you were to who you are now. How has this transformed you? 

[00:53:50] Frances: I'm a lot more skeptical—which is a good thing. Probably a little bit jaded. Not so good, but I laugh. I heard a saying the other day from a doctor who just…his eyes had just opened to something in medical community that he had never seen before. No matter how jaded I think I am, I'm still naive. I trust myself a lot more than I did before. I really, you know…what’s the thing that people always say? ‘Well, I'm not a doctor….’ Well, that doesn't mean you can't read. That doesn't mean you can't learn to read the lingo in the studies. In the medical journals. Now, what I learned by going to trial was there is no way for normal people—even doctors—to be able to dig into the back funding channels and figure out that the studies—even ones where there are no disclosures—that there are financial ties to the products being tested.

[00:54:45] What I saw in the trial on one day I went was one of the company's main surgeons, who’s kind of their marketing guy, and he…he’s a promoter of the device. He's on the patent I believe. And he speaks to lots of surgeons about the device and…and things. Presentations at sales meetings and such.

[00:55:03] He sets up a nonprofit. It’s called the Piedmont Foundation. He, his wife and one other person are the only people on the board, so they’re the only ones who know where the money goes. Then the device company; J and J DePuy contribute to this nonprofit. The nonprofit then funds that same surgeon to do the studies on the devices and concludes, guess what? “Hey, they're great devices. You should use them!”. And then there's no disclosure because this study was supported by the Piedmont Foundation.

[00:55:30] Unless you go and sit in on a federal trial that happens to be happening near your home, there's no way you find out…for you to find out…that the Piedmont Foundation gets its money from J and J DePuy, the maker of the products being studied.

[00:55:41] Shari: And this is only an example of one company and one device manufacturer. This is probably happening across the board. 

[00:55:47] Frances: That's what really shook me to my core. I said, ‘what are the chances that I just happened to stumble into the one time it was done this way?’ It's very unlikely that I just went on a mission to figure out…I just wanna know if the hips are bad enough that I need to go through all this again to get 'em taken out.

[00:56:05] And of course, I found out they were, but I found out all this other stuff that just broke my heart. And it hit me how many people are being hurt by this and that it is intentional. It's not just an accidental, oh, we just…oops…we made one bad product. Mmmm….This is a culture.

[00:56:24] And I'm not saying pharma doesn't do a lot of good. I love antibiotics. I love modern medicine. I would not have my twins, you know, doctors and pharma products saved my life literally on several occasions. Like I almost, you know, bled to death. Like UNC hospitals and Dr. Nancy Cheshire literally caught pre-term labor early enough. I was in labor at 20 weeks pregnant. UNC. Monitored.

[00:56:51] I mean, literally, I credit modern medicine for why I have babies and why they're not massively disabled. It's not that I don't believe in medicine, I just know that even though you're doing good, that doesn't give you the excuse to do a lot of bad. So I started looking after, you know…I kind of wrapped up my decision about the Pinnacle Hips.

[00:57:12] Started looking into the mesh. You know, the abdominal mesh. That, you know, the GYN bladder mesh. Because I started working…volunteering…shooting on a movie called “The Bleeding Edge”, which is on Netflix—and it's about medical devices and how…why they don't have to be tested before they're put on the market. Most new medical devices.

[00:57:32] 90%, never went through single human clinical trial while doing that. And while, speaking to lawmakers in DC with… with a group of women who had been hurt by the Essure birth control device and the bladder mesh. You know, I start learning. So I'm, now I'm curious about those products.

[00:57:49] So I start reading the trial documents, related, you know, the transcripts from the trials—bellweather trials related to those products. And it's not just the hips. And so, you know, some of the drugs; the Vioxx, the Risperdal…you start seeing this is a playbook and it's culture.

[00:58:05] And I started learning about what's called the “doubt science industry”, which, there's a whole group of researchers, they get paid by the companies to produce science that then can be used at trial to defend the company. It doesn't matter if it's good science…bad science… Like, and usually it's not—because it's the same people.

[00:58:24] Like I've read two different books about it. The same guy who produced a study saying, the cobalt doesn't harm the body until it reaches 300 parts per billion… I came across that study one day and I was like ‘well, I was bat-house crazy at four parts per billion… So, you know, I remembered the researcher who set up the nonprofit to run the money, you know, back to himself.

[00:58:45] And I thought, well, who is this guy? I mean, is he a surgeon? Like, so I look him up. I start to learn more about his name's Dennis Paustenbach. And I find out he produced studies for PG&E, the company in California related to the Erin Brockovich/Hinckley, California—all those people getting cancer because the Chromium's released into the water…

[00:59:07] …and for Ford Motor Company saying that asbestos coming off the Ford brakes didn't cause all those brake workers mesothelioma. Like it's so sinister, but it's actually the way it's set up. The same companies, that protected big tobacco when, you know, oh, secondhand smoke doesn't cause cancer…like, They're all done by the same people.

[00:59:32] This is an industry whose job it is to make bad science that supports industry. But the problem is when I was going to doctors here in Austin saying…you know, because the cobalt also affects your thyroid…and if your thyroid's off, you can really feel like, you know, jittery and anxious.

[00:59:50] And I…I said,’I think it's the cobalt messing with my thyroid levels’. And then she looks up on PubMed, finds the study by Dennis Paustenbach saying, you know, cobalt's not a problem. I have no idea who Dennis Paustenbach is or, or how he deeply he embedded he is in doing things for industries like, you know, for companies PG&E and Ford Motor Company and the big tobacco companies.

[01:00:10] It's just. doctors don't know this yet and the companies certainly aren't gonna tell them. Thankfully, because I was, you know, having mobility problems…hurting all the time if I stood more than an hour or two a day, and I'd lost my career…I had the time to do this. And what I found was shocking. And so now I'm chicken little telling everybody the sky's falling, except the sky kind of is really falling. 

[01:00:35] Shari: Well, yeah. I’m grateful for the awareness that you're bringing to…to not just the public, but also to the medical communities. Are they receiving any of this? Or what has the reaction been from the doctors who have seen your transformation and your experience?

[01:00:52] Frances: Well, I really haven't gone back a lot after I got the revision. My experience was about one in 10 are the kind of doctors that I think I wanna see. So many of 'em are just…you know, I know more about my GP’s kids than he knows about mine. It's not the same since about the nineties. Well, even afterwards when we got the Affordable Care Act and the whole…like all medical records have to be digitized. Several doctors who are now my friends have told me like, look, that was the point at which we can't have…can’t afford our own practice.

[01:01:23] Cause I'm like ‘why did everybody start selling out to the corporations’? Cause that's when it…you know, you only got three minutes with the doctor and things seemed to really change in the end of the nineties. One said it was really more…it started being that way. You know, insurance is so expensive, but the killer was The Affordable Care Act. They're like, we had to put an…you know, people on staff. It might eat up our entire salary hiring the people to digitize the medical records and buy the systems. And, and so at that point the doctors just had to go be part of a huge management corporation practice.

[01:01:58] And so…so now doctors are employees, whereas my stepfather was a small business owner-more like a dentist or an orthodontist. He could do what he want and…and not, you know, tow the company line. Cuz he didn't have a boss. He was the boss. The patients were his bosses. 

[01:02:13] I don't go back. A lot of the doctors were back in North Carolina and these days, you know, this is where…where I'm different. I'm a little jaded now, so I will tell everything if any doctor seems the slightest bit interested. And I do kind of throw the first hook out there and I'm like, ‘yeah, I got my hips…my four hip replacements…you know, most of the time they don't even bite.

[01:02:35] They don't even say why. And then if they do and I start with the next, ‘well, I had cobalt/chromium hips that caused cobalt toxicity and I think I was possibly allergic to the nickel in the alloy too’… Hmm. Okay. They move on. Like they, they're not curious. 

[01:02:51] Shari: So they’re not invested…

[01:02:53] Frances: Either they write me off like…nut job or, they just don't care. And so when I find that one doctor that does and he's or she is open and gets it…I mean, I tell everything and…and they usually are not surprised because they've seen bits of something similar along the way. The ironic thing was when I lost my career and we lost our house, I had to buy health insurance but I couldn't afford the $40 copay to go see doctors.

[01:03:23] So I kind of, for a while, couldn't go to the doctor. And…and ironically it kind of got better, like the less I saw. And so I'm more protective of my health now. I'm less likely to go to the doctor when I have a problem.  Of course antibiotics…yes. You know, I had a kidney infection once and I get the lifesaving nature and…and I'm thankful. Like, America's great with their doctors in the medical system when you have a car crash or something immediate and orthopedic and immediate.

[01:03:53] But otherwise I'm gonna do everything I can just to stay…you know, healthy and…and out of the doctor's office. I literally eat an apple a day now. We joke in my family that my husband calls me a “witch doctor” and he's like, you know, cause I'm like, ‘here's your eye of newt….’ you know, when someone gets sick. I'm like, ‘well, you know, have you tried washing the nasal passages first’?

[01:04:15] And it's. . My family's kind of sick of it, but you know, once you see, how functional medicine…or, my…my stepfather was really big on high dose vitamin C when you got sick, he just kind of like plowed you with it. There's something to that. I mean, we are chronically vitamin D deprived in America because air conditioning works and we all went inside and now we're on our computers.

[01:04:36] Like we are never outside. And if we are, we cover everything. So I, I learned a lot about vitamin D before I knew that it was the hips and the metal causing my problems. I was investigating that. And, and I learned so much about the important…I mean, it's not a vitamin, it's a hormone. It's responsible for, you know, tons of cellular processes and…and if we're all walking around like severely D deficient, we're gonna be so sick.

[01:05:01] So, yeah, it's, my husband said if…if we were, you know, back in the ages, long time ago, he is like, “They'd come get you.”. And he…he’s like,
“You’re my witch. I'm not gonna let you go.”. But yeah, I have a more holistic philosophy now and…and just really about movement. We're not meant to sit. I think that was another big part of my problem.

[01:05:22] When you sit forever, your glutes get weak and the glutes and…and the surrounding musculature is what holds the hip and socket and stops it from being that. You’ve got to move every day.

[01:05:33] Shari: So much! We have to do all of these things. 

[01:05:35] Frances: I dance a lot. I'm really fun parties. Right?

[01:05:37] Shari: Well, this…this has been awesome. Tell me kind of what your…what your professional and personal goals are going forward from here. We've had so much great information, but now that you know what you know, where do you go from here?

[01:05:51] Frances: I mean, I'm working on a…a memoir about it because I realized after “The Bleeding Edge” —the Executive Producer of The Bleeding Edge got a little bit into the medical device, you know…the hips in particular. And so that's great. Like we…we kind of showed that it happens with hips too. But what it didn't have time to cover was the lies in the research.

[01:06:12] I mean, I, no…lies is a strong word. I'd say the deception…the obfuscation in the research. And I felt like that story still hasn't been told about how many times, or I don't know how many times…but if it happens once, it's like anything times zero. Like what…what can you count on? When I…I still think it needs to get out there. The fact that nonprofits are used a lot of times to do research that then when it makes its financial disclosures, the…the report…the paper…there’s no disclosure that the actual dollars just went through a nonprofit to come to the researcher. But they were, you know, related to the corporation that makes the product.

[01:06:52] I feel like that's still important to get out there. And so I was going to do a documentary about it and I put a, what’s called a sizzle, together and had, you know, a couple other people who've been through the same thing. And…and we were gonna try to get it done, but it's really hard when you have mobility issues and, you know, 10 years of the financial repercussions of losing your career and then paying for doctors.

[01:07:12] And I sent the sizzle to Kirby Dick, the EP of “The Bleeding Edge”, and he's like, “Wow, you got great stuff. This is great. Here's how it's gonna happen…. You’re gonna self-fund the first $50,000 and then you're gonna spend the next five years—three to five years—like fundraising as you fly all over the nation, getting your interviews and hiring crews.”.

[01:07:39] And I was like…I had that complication with my revision at the times, so I was like, ‘I can't even make my own dinner. Like there's no way I can do this’. So I shifted and I decided to do a…a memoir about it. So I'm working on that. And, my husband says, you know, “You're so passionate about this stuff. Like you need to go into medical.”.  And I'm like, I’m…I don't think I would fit. I've come to the point at which I realize the only way this changes, you know? Cause I went to DC and I…and I met with lawmakers and staffers, and after the first half of hours of meetings, we went to lunch, the patients and a couple patient advocates and I….

[01:08:06] And I said, ‘why aren't they shocked at what we're telling them’? Because usually, you know, when you have a story like mine and you tell, and the mesh ladies were telling, and the Essure device ladies were telling, nobody was surprised. And when you tell someone your story, they're usually surprised.

[01:08:23] So I said, what, what gives? And this guy named Jack Mitchell, he's passed away now, but he was there with us—patient advocate person. And he said, “Oh, they've already picked a side.”. I said ‘what’? He said, “Yeah. Yeah. The Supreme Court ruling known as “Citizens United”, meant that the companies can…can fund anybody they want.”.

[01:08:42] And so basically, since Citizens United in 2010, pharma has been funding both sides of every key election. So no matter who wins, they supported the winner. So later I went home and kind of did some digging on that and realized, you know, 85…90% of the people in Congress were heavily sponsored by pharma.

[01:09:06] And so I was like, okay, wow. They're not gonna do anything either cuz most of them are bought too. And that was devastating because I thought I was gonna go to DC and tell 'em what's wrong and they were gonna fix it. No, no, no… they're not, they're not gonna do anything that's not in the best interest of the people buttering their bread.

[01:09:24] So I realized this has to be a grassroots thing. We have to get the word out. , just to normal people. And then the people have to demand change. So sadly, the better the medical device and pharma and, you know, it's kind of one and the same…the pharma industry is at what it does, the more people are gonna be hurt, the more people are gonna know.

[01:09:47] The more people are gonna go through my same journey and start looking into this and see it for what it is. Soon we'll all know, or soon so many of us will know that…that we can put the pressure on the lawmakers to say, you know, even though they're funding your campaign, you have to do what's right or we're not gonna vote for you.

[01:10:05] And so we've got to fight to get our lawmakers back. To get the laws changed to support patients, not the corporations. It’s…this is what's gotta happen. If I find another job-job, I want it to be along the lines of making that happen. Because, you know, my husband says, well…I mean we're safe. Can't you just move on?  Like this…you know, our kids are never gonna get a product put in them or whatever. And I'm like, ‘yeah…’

[01:10:30] Shari: But you can't say that. 

[01:10:32] Frances: ‘Someday they're gonna’…well, yeah, first of all, you leave home one morning, you don't realize you're gonna have a collision and end up in the hospital. Your knees hit the dashboard and you get a hip replacement at 22.

[01:10:41] So in addition, it's not just, ‘yeah, my family's gonna be protected cuz I'm gonna fight like heck to make sure they don't get brand new products put in their bodies and they…’ You know, my son had a hip surgery about two years after my revision and I flew him out to the doctor that…that does that.

[01:10:59] We did a surgery on him basically to make sure he didn't end up like me in needing double hip replacement at, at 28-38 years old. And the surgeon, who does the hip salvaging surgery, Dr. Marc Philippon in Vail, Colorado, I…I made him show me the anchors. He said, “I've been doing this. 20…30 years.”.

[01:11:19] “No one's ever asked to see what I'm putting in them.”. And I was like, ‘Hmm, you don't know what we've been through’. So he actually got the rep and brought out the actual anchor. It's called a “Raptor” anchor and I examined it cause I'm like 'I need to know there's no metal in this, because if my son has my genes, he could be, allergic too.

[01:11:36] And we just, I’m…you know, get those, metal allergy tests soon for all my kids. Because like you said, sometimes you don't know you're gonna have surgery that afternoon. It’s gotta change. It's just…it has to change because…

[01:11:47] Shari: Amen. 

[01:11:48] Frances: Not only does it drive up the cost of…of healthcare, for everyone, but my son may never have a hip replacement, but he is gonna marry a woman and chances are her mom's gonna get a bad mesh or whatever. Like, it…it all comes back to we're not our best. This is not what I believe our creator wants for us. You know, they're putting this cobalt-chromium-nickel allergy…I…I knew of one woman-I found her online-and we became friends and her daughter had scoliosis and they put the hardware up and down her back, you know, rods and screws.

[01:12:23] And the daughter was just seizing constantly. And she went from a 4-sport varsity athlete in high school to bedridden, seizing, unable to communicate. That's wrong. And these stories don't make the news. When I…when I first found out from the trial, like the blatant deception, I'm, you know, as a patient I was horrified.

[01:12:44] But as a reporter, I'm like, man, this is a great story. Reminds me a lot of…of “Dopesick”, about the opioid crisis. And you know, if you see in the back end of something, you're like, man, this is…this is a powerful story. So I called…emailed about everyone I had known in…in TV. They're all in different markets now.

[01:13:02] And I'm like, ‘yeah, you gotta tell this story’. And then, I forgot to mention, I also went to the J&J shareholders meeting and went inside as a shareholder and spoke at the Q&A portion of the meeting and…and said, ‘you know what…what are you gonna do to help people who have your products that are harming them’?

[01:13:17] And of course they…they did the PR, like, ‘oh yeah, yeah, we're gonna help you get…’. I just wanted to find maybe the…the best cobalt expert in the nation. That's really what I was looking for. But also, it…it was good that the shareholders got to hear like, we're not ambulance chasers. We're not…I mean, I didn't need J&J money.

[01:13:35] I had my own money. Like I…I had a great career…great life. I, I didn't sue people to support myself. You sue because it's wrong. And that's literally the only punishment you can give to a corporation doing things that, you know, we don't like. But they're making so much money, it's not really even punishment until, until the execs get held accountable and…and literally put in prison for their decisions to deceive and obfuscate and, you know, do what they're doing. It's never gonna get fixed. While there at the J&J shareholders meeting, I watched the presentation that they give the shareholders, it was, you know, oh…beautiful.

[01:14:16] You know, they're the masters of marketing beautiful. Like, oh, innovation and healthcare and changing the trajectory for health in this world. And it was beautiful…a beautiful production, but it was Tylenol…Advil…AccuVue… and I realized it's not just the hips. It's not just baby powder and baby lotion. Many of these companies make so many of the products you see that are sponsoring the news.

[01:14:42] So the, the “truth-tellers”, are you gonna bite that hand? And out of all the people I reached out to-former colleagues-I think I got about five stories done, like in five different cities. And that's with just years of trying. 

[01:14:57] Shari: You were the news. You know!

[01:14:59] Frances: Yeah. Yeah. I mean, these are my friends. These are people I had worked with who'd gone on to work in other markets. And then I'm like calling 10 years later and I'm like,’oh my gosh…story! This is crazy. Here's where you go to…to get the interview. Here's where you go to find the documents that prove that what I'm saying is true. And my former boss who had been promoted out to the ABC station in L.A., he put a reporter on it.

[01:15:19] She couldn't believe what I was saying. I'm like, ‘you really gotta look into it’. And because I had been at the trial and could…could literally like point… ‘and this document proves this and…and go see for yourself’. Like she didn't just take my word for it. She…she did about six months of investigating and then they…the story went through six months of you know, Disney legal guys, checkin’ it over.

[01:15:39] Making sure you're not gonna put the company at risk with your story and what you're claiming. I never thought that story would hit air. And it was an 18 minute piece about the hips. It's called…you can search “Billion Dollar Baby” and KABC, which is the…the station that did the story.

[01:15:54] I just thought it was gonna be like, you know, the Ford Pinto. Like those stories, they hit in a little market or even a big market and then they become a national story. And I was like, I knew that's how it worked.

[01:16:06] And so I was like, oh my gosh, they just did this scathing story. It's 18 minutes long. That's an eternity for a TV news story. It's gonna get put up on the feed so every CNN or ABC affiliate’s gonna have the chance to use it if they want. And…and then, you know, the other affiliates are gonna be like, we gotta do our own version. That's how news used to work.

[01:16:26] Nothing happened. It was just crickets. So…I was like…that’s when I learned…1997 is when policies changed. I believe it was FTC or FCC-I can't remember which one. Changed things such that direct to consumer ads can be run on tv. Well, the US, and I believe it's New Zealand, are the two nations in the world that allow direct to consumer advertising of pharmaceutical products. What I realized at that point, that's not because they want you to ask your doctor about Zoloft or whatever.

[01:17:00] It's just a way to get money into the truth…truth-teller’s, pockets. So since we got rid of the fairness doctrine and since 1997 when the drug companies could put the ads directly on tv, I feel like we've gradually been losing the news. They're still independent news and thank goodness they're still podcasters.

[01:17:20] They've become the new truth-tellers. I've also kind of, you know, unplugged a…a bit from corporate media because I just…it’s different. Back when we used to all subscribe to the newspaper, the newspaper reporters are the ones that kept us in TV kind of still doing real news because they would…they would do great journalism…

[01:17:40] …and make us look bad if we didn't do it too. So it forced us all to… to cover the stories, no matter, because we were being paid essentially by the viewers. Um, because the newspaper being paid by the subscribers, they were beholden to the subscribers. So they did real news, and then we followed suit. 

[01:17:57] Shari: Mm-hmm.

[01:17:58] Frances: When the internet came and the model changed, and suddenly the eyeballs were the products, not the actual news content. And so the newspaper's not getting paid by the people reading the paper anymore. They're getting paid by the company’s with the ads that go on the website. Again, people don't realize it yet, but a lot of things have changed.

[01:18:21] And so what we used to be able to depend upon, we can't anymore. In the same regard, the FDA is close to 50% funded by pharma dollars by something called “user fees” that they pay every time they want a new product to market…come to market. Years ago, this is what I learned from Jack Mitchell, that patient advocate I met in DC, and he said, “Years ago, the companies all went to-the pharma companies-all went to the FDA and they said, you're overburdened.”.

[01:18:51] “And it's hurting patients that we can't get our products to market fast enough, so we wanna pay more in our user fees.”. And so they-shoveling more money to the FDA-but along with that extra money, he said, came a phone book sized list of what the expectation would be in return for those higher user fees.

[01:19:11] And so, again, you're buying your way. The Pharma is buying its way into bed with our regulators. And so suddenly everybody's beholden to pharma. Our lawmakers…our regulators in some cases…some of our doctors…the key opinion leaders—the guys getting the extra. I mean, when you make that much money, you can buy anyone you want.

[01:19:33] And it's fine if we all know that. But the problem is right now, we have something worse than the wild-wild west. Cuz at least in the wild-wild west, you knew the snake oil hadn't been tested. So you're, you can try it if you want, but now what we have is the appearance of regulation without the a…actual regulation.

[01:19:51] In some cases, the regulators are actually promoting the products. of the companies that they're supposed to be protecting us from and, I mean, it's kind of mind blowing. But that’s…that’s what I wanna keep doing is getting this message out. Why and how exactly things have changed. And I'm not sure I do a good job articulating it, but I'm not a scholar on any of this stuff.

[01:20:12] I'm just a curious person who's been digging for awhile. And I'm not medical and I'm not a lawyer and I'm not a regulatory expert, but I am okay at taking complex things and putting them in layman's terms. And this is just the story that fell in my lap, literally and figuratively. And so I'm gonna keep telling it.

[01:20:36] Shari: And you're a curious person who cares. And I thank you for that.

[01:20:39] Frances: I hate…I hate…I hate the suffering.

[01:20:42] Shari: And I thank you for that.Well guys, I think that's gonna be a wrap for our episode today. Thank you Frances, for coming on and helping us change the narrative, one patient at a time, to tell the medical profession that we are not gonna take this anymore.

[01:20:58] Thanks guys. See you down the road.