Dr. Bex
speaker
498 appearances
7 recordings
1 series
first heard Nov 2024
last heard Jun 2025
Dr. Bex’s voice in public audio — every appearance, attributed to the second.
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Hi, Andrea. I am good. This has been a fun one. Let's just say that.
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.
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.
So the idea is your brain stays within your skull and then comes your spinal cord. The idea of a Chiari malformation being affiliated with connective tissue disorder, Ehlers-Danlos, If you kind of think about it in your head, you can kind of come up with how that could make sense because both involve some kind of a weakness or structural weakness.
So I think the concept came from if there's ligament laxity in that area and all these other things that go along with Ehlers-Danlos, is there a chance that they'd be at higher risk of that kind of slipping happening? Or is it one of those things that... It's a correlation, but is it really a causation?
So that's kind of two of the words we use in medicine where correlation is the two seem to have some interplay with each other. And maybe you do see one a little bit more in the other. But true causation that this child has a Chiari malformation is because they have Ehlers-Danlos is where we're lacking a lot of, you know, information.
A lot of it is case studies and very small, what we call cohort studies. So very small number of patients. And what we're missing is something called a randomized controlled trial or a large randomized controlled trial. And there are things in medicine that that's difficult to do. And so a lot of it comes down to, you know, there are neurosurgeons who believe in this connection. There are
centers that very much focus on this connection but it is still very much case study based if you look up the articles that are out there the ones I could find seem to have at least one of these physicians that pops up in these cases about you know as part as one of the authors so So it does seem to be a smaller circle of neurosurgeons.
And I wanna make a point that there's something we call consensus. When we like review articles or look back at studies that are done, one of the things we talk about is standard of care or consensus. It's not always that the American Association of Neurosurgeons came out and said, this is the gold standard for this condition.
But if you asked a bunch of neurosurgeons who are practicing standard of care medicine to They would agree that this is a procedure or that this is the standard. And so it hasn't gotten to the point that maybe it's actually officially become a guideline, but it is something that is agreed upon based on knowledge, based on research, based on what is out there in the literature.
that this would be something that is there. And that's what's missing, that true like consensus or guideline on this connection. Got it.
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.
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