This week, Andrea and Dr. Bex dive into the controversial Dr. Paolo Bolognese, a neurosurgeon with a significant number of malpractice lawsuits and explore his role in the Rady Children's lawsuit. Andrea and Dr. Bex also highlight the complexities of medical malpractice, particularly in neurosurgery, emphasizing the risks associated with experimental procedures and the importance of informed consent. They also explore a darker side of medicine—where financial incentives might be shaping decisions more than patient outcomes and niche specialists become gatekeepers to high-risk surgeries. The conversation culminates in a whistleblower complaint that reveals systemic issues within the field. *** This podcast is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. *** Order Andrea's new book The Mother Next Door: Medicine, Deception, and Munchausen by Proxy. Click here to view our sponsors. Remember that using our codes helps advertisers know you’re listening and helps us keep making the show! Subscribe on YouTube where we have full episodes and lots of bonus content. Follow Andrea on Instagram: @andreadunlop Buy Andrea's books here. For more information and resources on Munchausen by Proxy, please visit MunchausenSupport.com The American Professional Society on the Abuse of Children’s MBP Practice Guidelines can be downloaded here. Learn more about your ad choices. Visit podcastchoices.com/adchoices
Chapter 1: Who is Dr. Paolo Bolognese?
True Story Media. Hello, it's Andrea, and today Dr. Becks and I are taking a little detour on the windy road of the Rady Children's case to discuss one of the doctors at the center of it, New York neurosurgeon Dr. Paolo Bolognese. To say that this case just keeps getting stranger is an understatement. We are only two weeks away from our season six launch. I can hardly believe it.
And we will be dropping the trailer tomorrow. So keep an eye out for that. I am so proud of the team's work on our new season. It is our most ambitious work yet, and I think it's also our best. A reminder that if you subscribe on Apple or Patreon, you can binge the whole thing ad-free on launch day, June 19th.
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Ich bin Charissa und meine Empfehlung an alle Entrepreneure, startet mit Shopify erfolgreich durch. Ich verwende Shopify schon seit dem ersten Tag und die Plattform macht mir nie Probleme. Ich habe viele Probleme, aber die Plattform ist nie eins davon. Ich habe das Gefühl, dass Shopify ihre Plattform kontinuierlich optimiert. Alles ist super einfach, integrier- und verlinkbar.
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Ich habe das Gefühl, dass Shopify ihre Plattform kontinuierlich optimiert. Alles ist super einfach, integrier- und verlinkbar. Und die Zeit und das Geld, das ich dadurch spare, kann ich anderweitig investieren. Vor allem in Wachstum.
Well, hello, Dr. Becks. How are you doing?
Hi, Andrea. I am good. This has been a fun one. Let's just say that.
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Chapter 2: What are the allegations against Dr. Bolognese?
So Dr. Bolognese actually did his training, as Andrea said, kind of obviously he grew up in Italy and did his training there and graduated, it looks like, from medical school in 1986. And then after that, in the 90s, came out to New York. to work with a specific neurosurgeon named Thomas Millerat, which will come up a couple times during our discussion today.
He did do a neurosurgery residency and a fellowship in the management of Chiari malformation here in the United States. This does happen with foreign medical graduates or graduates of medical schools outside of the United States will decide to come over to the United States or go vice versa to other countries and do a follow-up residency fellowship to then
be able to practice in the United States or in another country. And so that's what he did. And his specialization or the thing he seemed to focus on during his training is management of something called a Chiari malformation. And when he came over and after he did all his training is when he and Dr. Millerat formed what was called the Chiari Institute.
So that is where a bulk of these cases come from that we're going to talk about today is when they were working or when he was working at the Chiari Institute. Currently, he is working at a location called the Chiari EDS Center. So this is where his story or his...
specialization in the Chiari malformation kind of takes hold or starts to kind of come to what he is now, where he is linking things like Chiari malformations, which we can talk about, tethered cord, and other neurologic issues with Ehlers-Danlos syndrome. So that he has really, he's kind of evolved into what sounds like a neurosurgeon who very much
works with patients who have both connective tissue disorders or things like Ehlers-Danlos and then potentially also these neurologic issues. And so that's why now he's the head of what is called the Chiari EDS Center. So working with both of those things in conjunction. But I think the start of our story and what we're going to focus on is more his work at the Chiari Institute with Dr. Millerat.
Yeah. And so it sounds like this connection with EDS has been kind of an evolving part of his work. So he was at the Chiari Institute with this other doctor until September of 2014 and then established the Chiari Neurosurgical Center, which eventually becomes the Chiari EDS Center. What do we know about the
sort of peer-reviewed science around this idea that there's a connection between EDS and Chiari malformation and tethered cord syndrome, which has become the focus of his work.
So a Chiari malformation is a very, I mean, it's a very well-known entity in medicine. Just to be clear, it is the idea of your cerebellum, which is your posterior brain. It helps control all of your movements. And it sits kind of right here at the back of your skull. So the idea is that it can actually slip or basically start to what we call herniate through the hole at the bottom of our skull.
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Chapter 3: What is a Chiari malformation?
Okay. And yeah, I think those are important caveats. And I think, you know, when we're talking about conditions like Ehlers-Danlos and certainly in my research and your research for this case, And just the feedback that we've gotten from listeners, we have heard from so many people who suffer from EDS and also in POTS, which is another one that came up in this case.
And I'm certainly getting the impression, and we're going to dig deeper into the EDS stuff and the connection to this case, but I certainly get the impression that this is something that is emerging as being a more common diagnosis than it was previously thought. And that happens all the time, right? I think so much of this confusion can happen.
And unfortunately, so much of this opportunism in some cases can happen because things are not well understood and because people are not getting diagnosed and they're not getting good care. And then that kind of can leave this vacuum and leave people to, you know, and I think I want to put the caveat that like experimental treatments are not always bad, right? That is how we get to
good treatments. And, you know, as long as they're done safely and ethically, that is how medicine evolves. And so I think like that's all worth, that's all very worth caveating. So before we get into Dr. Bolognese, can you explain, so we've covered the Chiari malformation. What about this piece of the tethered cord? What does that mean? And how is it thought to be related to EDS?
So a tethered cord refers to at the end of our spinal cord. It's kind of weird to think about, but the little the nerves at the end of our spinal cord called the conus or that lowest point or the phylum terminology is another term that you'll hear used. It's free floating in our spinal fluid.
So like if you watch it on dynamic imaging, the little nerves at the bottom of your spinal cord are kind of floating in your spinal fluid. So the concept is a tethered cord is where those nerves, instead of being kind of allowed to free float and send off their signals, they can actually tether or attach to the side of the spinal canal itself.
So what we think of most cases is primary tethered cord, meaning a child who is born with a tethered cord. And that is usually associated with other things like spina bifida, which my cousin suffers from. So I know a lot about it just from my family. And he also had a tethered cord or tethered.
Kids who are born where that phylum is thick for some reason, meaning it's got like extra tissue or it's thickened or it's more fatty. And that obviously doesn't allow those nerves to float around as much as they want to or can. And then also something called a sinus tract where there's actually things don't close up like they're supposed to. And so there's openings where they shouldn't be.
All of that can be associated with a primary tether cord. There is something called a secondary tethered cord, meaning you get it or develop it later in life. In most cases, that is related to scarring from previous surgeries, traumas, tumor resections, anything where you actually get in that area and could cause scar tissue.
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Chapter 4: How does Ehlers-Danlos syndrome relate to Chiari malformation?
Low risk, incidental finding, meaning you do an MRI because the kid fell and hit his head and you find a Chiari, but no symptoms, you may watch and wait. And then if imaging shows it, symptoms go along with it, concern for long-term symptoms, at that point, it becomes more of, the surgery becomes much more the standard of care.
If you look at it, most times a Chiari repair or a tethered cord repair are considered elective procedures because the decision is made that the benefit of the surgery, right, would overcome the risk of the surgery.
So even though it's technically, it's not emergent, you don't have to do it today or something bad might happen, but the idea is it is now recommended because you're having the symptoms.
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Und die Zeit und das Geld, das ich dadurch spare, kann ich anderweitig investieren. Vor allem in Wachstum.
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Chapter 5: What is a tethered cord and its implications?
Yeah, that's good context.
So in terms of how Dr. Bolognese shows up in this case, in the lawsuit, he is very much presented as a respected neurosurgeon who first evaluates Madison in 2019. So she had this diagnosis previously of Ehlers-Danlos, but Dr. Paolo Bolognese is called out as confirming this diagnosis of EDS and then adding the additional diagnoses of POTS And fibromyalgia, which is a chronic pain disorder.
So it also says that he ruled out any signs of medical child abuse. So this is something that comes up a lot in these cases. And I will say there are several other doctors that are named as sort of ruling out or not seeing signs.
The exclusion criteria.
Right. And the individual doctors were saying, one individual doctor, especially when a child is seeing many doctors, one individual doctor not seeing signs of medical child abuse is not in any way exculpatory. It is one piece of a thousand piece puzzle. So just because you have some doctors that
either don't believe that medical child abuse exists or find the parents credible or didn't have a bad experience with the parents. Like maybe the parents saw that doctor and they didn't do any of those behaviors with that particular doctor. If they're not reviewing the entire medical record, then they are not qualified to say whether or not medical child abuse is happening.
But this doctor definitely plays a very prominent role in this case, and he performed what's called a celiac plexus block that was to help alleviate some of Madison's pain. So, Bex, can you explain what that procedure is?
So there is something called median arcuate ligament syndrome. These all have these acronyms. So it's MALS, it's M-A-L-S. The idea is in our abdominal cavity, we have a lot of things that are supposed to develop in form and be in the right place and not compress anything else.
The problem is anytime you have blood vessels, nerves, ligaments, organs, all in one place, there's a chance that one will impinge on the other and cause problems kind of in very general terms. And at times of, let's say, rapid weight gain, rapid weight loss, there are times where things may shift.
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Chapter 6: What are the complexities of medical malpractice?
It's along the terms of ketamine, where it's FDA approved in very specific situations, but not in all situations. And what it sounds like, at least from my reading, is that they were using it, what we call off-label, but they were not being informed necessarily that, yes, the FDA does approve it for certain things, but not for this specific consideration is what it sounds like.
Again, like using things off-label is something that happens all the time. I've been prescribed something off-label that was very effective. And it's sort of like one of those things where you want to be able to give people the best available care as long as there's good information about it, even if it's not yet FDA approved, because that can be a lengthy bureaucratic process.
but certainly something that patients should be informed of. And then the last one, which I think is kind of the cherry on the sundae of this whole thing, is engaging in deceptive marketing and misinformation, including through the website. And so I think this whole thing is sort of Looks like a worst case scenario of what can happen in our for-profit medical system.
You know, these procedures were very expensive. The most frequently quoted number was $55,000. And again, because they're experimental, they're not going to be covered by insurance in a lot of cases. So there was confusion. you know, these details of them telling patients that they could try to submit it to their insurance to get covered, but often that they did not get it covered.
So these patients are paying out of pocket for these very, very expensive procedures. And again, when you have that much of a profit motive, it really calls into question why they are doing these things outside of the realm of medical consensus. Are they operating under their Hippocratic Oath to do no harm?
And it's become everything they're doing. Like their whole life. This is everything. It's not one of the things they do.
Yes. So it sounds like, yeah, can you tell us a little bit more about that, Bex, of like, this is not a procedure that they do in very specific circumstances. It sounds like that is, and I mean, even just the number of lawsuits that are associated with this speaks to that, right?
It's giving the picture of everyone who walks through a door gets this diagnosis and gets recommended to have this procedure, which is very concerning.
And I think that's what I try to explain to people that's so hard is a niche practice where this is all they do. A doctor who did all of their research on one genetic condition, it's named after them. There's one, like that's everything. To be fair, I say this all the time that I want to keep a bit of a...
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Chapter 7: How do financial incentives affect medical decisions?
But with that said, like if you have a business and you're building a business off doing this procedure as these people appear to have, then you're sort of looking at, it sort of becomes a relationships of clients instead of patients. And I think that that really fundamentally changes things.
And when you are looking at someone who the allegations are this sinister and disturbing, then you need to look at, okay, why? Why would someone who's a neurosurgeon do this? And in this case, there is a pretty clear-cut financial motive. So the money piece comes up in a bunch of these lawsuits.
And the majority of the lawsuits we found had to do with the Chiari Institute, which is where Bolognese was until 2014. But there are several that have to do with his work afterwards. And again, we do not believe that we have found all of these. So TBD on that. but that they were out of network for major insurance plans.
And so that there were times where they could get partial reimbursement, but also that the surgeon's fees were billed separately and often exceeded what insurance would cover, and that they paid substantial out-of-pockets amounts sometimes exceeding $50,000 per surgery. So in multiple of these complaints, the families alleged that they were required to pay tens of thousands of dollars up
upfront or rebuild exorbitant amounts postoperatively for procedures that were later deemed unnecessary or experimental. So I think that if we are to posit a motive, I think follow the money and that appears to be there.
And of course, as a physician, I want to believe there was a point at which they saw some connection between Ehlers-Danlos and these things, and they felt like they were the ones that were maybe having worse outcomes or maybe weren't getting the care they needed. I worry about parents, patients who are just looking for answers and reasons for why do I hurt so bad every day?
Why are my headaches so bad all the time? and they find this website and it seems like the freaking like light from heaven goes on and you're like, oh my God, this is me. So you go and they offer something and it's not until you're what five, I mean, some of these people had greater than 20 surgeries done. You know, that like how many surgeries are you like, oh, what did I do?
You know, if you really still believe in this. And then there's also the flip of that where there are parents and are patients who are specifically finding these places because they know you don't have to go through the same pipeline or series of events again. to get there. And he says he reviews the medical records.
Maybe that is to make sure you've done X, Y, and Z, but that's not clearly delineated here. And we know specifically from other cases we've reviewed that it's going to the extreme. There's no timeline that makes sense. Like that, how in eight weeks a child has a GJ tube when they were a healthy baby eight weeks ago, like that timeline, there was not enough time to give things time to work.
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Chapter 8: What is the significance of informed consent in experimental procedures?
And so I think it's and it's just the extreme, the extremity of these things is just cannot be cannot be left unsaid.
Yeah. And I think, you know, this all just a couple of like quotes about this financial piece, you know, they're saying that, you know, from one of them, from the virtue complaint. Plaintiffs paid out of pockets for multiple surgeries recommended under false pretenses. Defendants intentionally billed outside of insurance coverage to shield from review.
From the Talbot complaint, surgeries were promoted and charged as innovative treatments, often excluded from insurance plans due to lack of scientific support. So it's kind of a two-way thing, right? Like you're getting the cash payment and not having to go through insurance companies and and have them approve the amounts, et cetera.
And also this is kind of shielding the fact that you're not doing as much due diligence. And there was also a claim in here about that they lied that they were funded by a study from the NIH that didn't exist. So there are a lot of just like, you know, a lot of sort of fraud claims in these, a lot of things about deceptive marketing.
So really just looking at this as functioning like a business that is doing extremely invasive surgeries on people, which is obviously very disturbing. Yeah, before we get into the Whistler complaint, so a couple of things that came up as this experimental piece of it was the morphometrics and this other thing called the TCI specialist.
And another piece that came up again and again in the lawsuits was that the person who was reviewing the images was actually not licensed as a radiologist. And this is the person that came up with this thing that is called the TCI specialist. So Bex, what do we know about these two elements?
So again, because of the way some of these things are being diagnosed, the idea is we're steering a little bit off of the standard of care for diagnosis, but then follow that up with steering off the standard of care for the treatment, even if the diagnosis was something that everyone agreed upon. So the diagnosis is made...
In these cases, it seems some of the ones that came up in the lawsuits based on what's called morphometrics. And the idea is basically measurements. And to be fair, there are things like, for instance, endocrinology is the most mathematical specialty we have. It's like if the glucose is this, you increase the insulin to this. It's a very like...
If then very objective, like if a doctor really likes that stuff, endocrine seems to be like a good fit for them. And then there are parts of medicine that aren't so clear cut. So what we want to do as physicians is we want to make it make sense. We want to make it objective. And so we try to find measurements, angles, things that everyone can agree upon that
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