Are Your Breast Implants Making You Sick? with Dr. Eva Nagy (Ep 149)

Transcripts are auto-generated and may contain errors

Dr. Eva Nagy: [00:00:00] It's a small operation. Take 15 minutes. I'm gonna take out your old implants in, just get a fresh one, five to 10 years. Very different from the cosmetic world, I'm sure, but we have to be mindful that these things can gel, leak very, very early, 2, 3, 4, 5 years even after insertion. And we don't know the long-term consequences of that either.

Dr. Linda Bluestein: Welcome back every bendy body to the Bendy Bodies podcast with your host and founder, Dr. Linda Bluestein and the Hypermobility md. I'm so excited to have this conversation today with Dr. Ava Nagy about breast implant illness. This is a condition that affects so many women. Yet so often they're told that this is in their heads.

This is really an important conversation, so I hope that you will [00:01:00] really enjoy it. Dr. Nagy is the consultant breast surgeon at Sydney Oncoplastic Surgery. In addition to her medical degree, Eva has a PhD in biomedical science and a graduate certificate in breast surgery from the University of Sydney.

She presents her research at international conferences and seeks to determine the underlying causes of systemic symptoms that affect some women with breast implants. I am so excited to chat with Dr. Nagy, and you may or may not have seen in my Substack newsletter where I talked about breast implant illness, but I actually was in the audience for an Oprah Winfrey show with women who had had breast implants, and at that time I believed that breast implants did not cause systemic symptoms.

I have, of course, since then completely changed my view, so I hope you'll also check out my substack newsletter on this topic where I explain the incredible 180 that I did with my own personal thought process. Dr. Nagy is joining us from Australia, so I do want you to know that there [00:02:00] might be some tech issues and a little bit of background noise at times during the conversation.

As always, this information is for educational purposes only and it's not a substitute for personalized medical advice. Be sure to stick around until the very end, so don't miss any of our special hypermobility hacks. Here we go.

Well, I'm so excited to be here with Dr. Nagy and we wanna jump right in and talk about breast implant illness. So can you start out by telling us what is breast implant illness? So I think 

Dr. Eva Nagy: the first thing I have to say is that it's a legitimate disease. I cannot tell you how many times women come into my office and you know, just legitimizing the fact that they have an illness as opposed to the fact that it's in their head is a massive game changer to begin with.

They see specialist after specialist and they keep saying, oh look, you're just anxious. You are not sleeping well, you're not exercising. Um, go do that. Go have a happy and healthy diet and [00:03:00] everything will be fine again. But it doesn't work that way. And so it doesn't fit into a nice little box of medicine.

You know, everything has a, a little component and it touches on every single facet of your body. Neurological, gastroenterological, your skin, um, your cardiac, your lungs. So which box do we put that in? If we don't have a box? Well, we just say it's the patient. And so this is, think of it like um, you have a foreign material in you.

Your immune system doesn't like it and tries every which way to try to get rid of it. And when it's unsuccessful, in doing so, it ramps up. And starts attacking your own body. Now, the more I start doing this, um, and delving into it more, I'm starting to believe that it's mast cell activation syndrome. It's at the key, um, part of it.

So we all have [00:04:00] mast cells, which are part of our immune system, and think a bit like Pac-Man, they go along and gobble things up that are not you, whether it's bacteria, yeast, mold, virus or foreign materials such as silicon. And when they get triggered by this and the mast cells can undergo somatic mutations.

So mutations that you acquire as opposed to what you are born with congenital, they become more and more triggered by certain items. And so the silicon causes that activation and the mast cells release histamine. And most people know about histamine and they, we've all taken antihistamines at some point in time in our lives, um, when they do their job properly.

For example, if you get a mosquito bite. It has local histamine release. You get redness, itching, pain, heat to allow the blood vessels in the white cell count. Uh, so the white, the blood vessels to open and the white cells to come in and, and remove the toxin that has been injected by the mosquito. [00:05:00] But when they go too rampant, when they get triggered too much, they release too much histamine and too many, um, factors that they have, they have hundreds of factors that they can release.

And it becomes systemic, it gets circulated in the entire, um, bloodstream. And so therefore you can have symptoms of any part of your body. So you get this systemic release of histamine and other, um, factors. Factors, and then that brings about your symptoms. So this has been recognized. BII has been recognized from the FDA in October 21, although they didn't call a breast implant illness.

They call it a conglomeration of systemic symptoms, but it's the same thing. You can call it whatever you want. Breast implant now is a systemic symptoms, whatever it is, but it is an adverse reaction to a foreign material that's in the body. And unless you remove that foreign material, which is the implant, but also the capsule, because we see a quite a [00:06:00] higher number of patients who have silicon left in their capsule, despite the fact that they don't have a rupture.

And if you leave silicon behind, you're still theoretically activating your mast cells. You still have the foreign material in you. So it needs to be removed, intact, and in one. So yes, it is a legitimate illness. Breast implant illness exists. It's not in your head. And it's an immunological reaction to the foreign material, which is the implant that's in.

Dr. Linda Bluestein: And are some women, uh, more susceptible than others? Do some women get breast implant illness and others are actually fine? And if they think they're fine, like are they really actually fine? 

Dr. Eva Nagy: So that's a good question in that I'm not sure every single woman who has implants is gonna get it and we don't understand why simple.

But some women get it and some don't. We know that somatic mutations in Mars cells is about 17 to 20% of the population, [00:07:00] although I think that's an underestimation, but, but we have done a pilot study, which we've now expanded to about 150 patients now. But we see patients who say, I'm fine. No, I just want to get them out.

I've had my fun with them, you know, I'm 40 50, I don't need them anymore. And they fill out the must, sorry, the BII questionnaire. And when they actually go, we have 250 different questions trying to target different symptoms. And they tick. And they tick and they think, hang on a minute. You know, I am fatigued and I do have rashes and my gut's not particularly great, but I think it's all part of menopause.

Or I'm getting older, my kids are, you know, very busy. My marriage is not so great. My job is really hectic. So they sort of explain it away, but it's not, I call it subclinical. BII, I guess because it's not a full-blown effect of the disease. But you still have some relative symptoms. And then when we remove the implants with on block [00:08:00] ectomies, they get better.

And a lot of people say, well, it's psychological. Well, it's not because it's not psychological that you're getting a rash or you can't tolerate wheat and dairy, or you have frequent ary tract infections, or, um, dyspareunia, you know, they actually have legitimate symptoms. And so I think. A large proportion of women don't actually realize they have subclinical breast implant illness and just assume that it's part of aging.

But we've demonstrated quite a large number of women actually have an adverse reaction to the implants as a manifestation of that systemic symptom. And, and when do the symptoms 

Dr. Linda Bluestein: usually appear? 

Dr. Eva Nagy: Well, that's interesting in itself because if you take a detailed history, and I, I ask them, well, how did you feel when you woke up?

Did you have a rash across your chest? Did you feel like you were hit by a bus? Did the fatigue come in very quickly and didn't resolve? [00:09:00] I mean, you, you, you have to put into the context that they had general anesthetic and they might be nauseous and you know, they don't feel so great for the first few days, but they shouldn't linger.

So some women, you can actually have it as soon as they wake up. So one of my patients, um, she was very, very sick. She, as soon as she woke up, she had intense fatigue. She had a rash across her chest, which didn't go away, and she was on and off out of bed for about three months and they didn't sort of tally it up together.

She was kind of able to go to work, but that she'd come quickly, come home and go to bed. Um, sleep for as long as she possibly could. She didn't have the energy that she did and she was prior to that going to the gym. Very fit. Um, so you can get it as soon as you wake up. It's an instant reaction, or you can get it later on so you can have it years down the track.

We get people 5, 10, 15, even 20 years later on. Now whether that's a result of your immune system being triggered [00:10:00] as the mast cells mutate, or is it that the implant starts to leak. And remember, you can get gel leak without having a rupture. So think of it like a teabag. The teabag looks fine on the outside, but you put it into water and the, the tea just leeches out.

So over time there's a degra degradation of the casing of the implant. And so you can get these little micro perforations in gel leak. Um, whether that's, and, and we're not sure, and the problem is, is that we don't have this magical test yet. We don't have a blood test, we don't have any imaging that we can do to say a hundred percent Yep, you've got breast implant illness.

And again, that's why it makes it so hard to legitimate legitimize in the medical field is because we don't have that test yet. But it's, it exists and it, it's a, it's a definite thing. And there's thousands and thousands of women now on Facebook in the BII group [00:11:00] who have demonstrated that they have the sym symptoms and the illness.

And when the implants are removed, they get better. So just because we don't have that test yet doesn't mean it's not an actual thing. But you can get it at any time from the time that you wake up to the time years later. And remember, it's insidious, right? It doesn't happen unless you wake up from it.

Then you kind of know the difference straight away. It's insidious. So you know, you can't tell the difference from today to yesterday to even a week before. But when you look back a year, actually I'm really different from what I was last year because everything creeps in. The joint pain sort of creeps in.

Your headaches kind of creep in. Oh, why can't I tolerate the foods that I used to have? It's very slow. Um, and so that's why it's sort of. 

Dr. Linda Bluestein: And like you said, there's so many other factors. If you're waking up from anesthesia and you just had surgery, then you know, of course there's a lot [00:12:00] going on then. And if you're, it's a, it's a number of years later if there's hormonal changes and things like that.

So I can definitely see where making the diagnosis is challenging. But it's great that you have developed this, uh, questionnaire, which we'll definitely link in the show notes if you're able to share that with us. 'cause I'm sure people would love to see that. And, and what about saline implants? Are those, are those safer or can people still get BII With the saline implants, 

Dr. Eva Nagy: people can still get BII with saline implants, but we don't insert them as often, especially in Australia as silicon implants for cosmetics and even for reconstruction, to be fair.

Um, so we have a reduced number already, so it's hard to make that estimate. Say, okay, if 95% of the population have gel, then if you're gonna manifest a disease, it's easier to see with a larger group of people. I've actually had patients who have silicon, sorry, saline implants, where after 20 years the casing has degraded enough that there's bits of [00:13:00] silicon that have gone to the capsule, gone outside the capsule into the lymphatics and ended up in the lymph nodes.

But there was no rupture because you can see a rupture very easily with a saline implant. It just deflates very quickly. So there's degradation enough that the, the silicon moves now, once it gets to the lymph nodes, it's been demonstrated that it can actually go beyond. So autopsy studies have shown that you can get silicon in the brain and the spinal cord, colon, kidneys, it moves.

But we don't have any long-term data. We'll research to show what is the long-term consequence of that. Does it sit there? Does it do nothing? Does it integrate itself? Although I can't imagine silicon in your brain being good and does it set up. Sit local and systemic inflammation. And we know that inflammation is a big driver for cancer.

So I'm not saying that people who have silicon in their [00:14:00] bodies that's gonna go into lymph nodes or beyond will get cancer. We don't have that as a research proposal yet, but it's, it's in our minds to know this is not natural, necessarily inert. And it doesn't necessarily stay local. What happens when it goes beyond?

And and what about 

Dr. Linda Bluestein: autologous fat transfer? 

Dr. Eva Nagy: So autologous fat transfers, it's your body, it's your tissue. Um, there was a suggestion early on that for patients who have, uh, breast cancer, that it can be a source of stem cells and, and aggravate any particular, um, breast cells that wanna convert into cancer cells.

Um, can aggravate that. But if that's been debunked. And we do use it for patients, whether they're cancer patients or not. So we consider it very safe. 

Dr. Linda Bluestein: And you've mentioned rupture and leakage already, which we know are very important. Are there certain things that contribute to rupture leakage, like certain [00:15:00] exercises that people might do?

I know, uh, one of the listeners asked about mammograms, if that's something that might increase the risk of, of those events. 

Dr. Eva Nagy: That's a very tricky question because you, you want to do your mammograms and your ultrasounds to rule out cancer, but at the same time, we know that if you have breast implants, there's a very small, I think one to 2% chance there may actually be a rupture during that time.

Yeah. So we still encourage women to have mammograms because there's ways of actually pushing and manipulating the breast. And the implant to get out of the field. So you just need to go to a reputable place that does it very consistently with high level of expertise. I've never seen it. I work at breast screen as part of my, um, oncoplastic job.

We never actually had any rupture. Um, but anything with significant force has the potential to do so. [00:16:00] Now these implants are tested, um, and they go through quite a strenuous amount of torsion and pressure, and they still remain intact. I don't think it's actually the exercises causing the issue of breakdown and gel leaks and, um, sort of the, the degradation of the capsule.

I think it's your actual immune system trying to break it down and weakening the actual device. So I haven't seen anyone, I've never told anyone, look, please don't exercise because you've got implants. Um, I think that may counterintuitive. Um, I tell them of course, after reconstruction, just be mindful.

Don't do too much. But no, we, there's nothing to say that you can't exercise or, or, or do the chin-ups and the pull ups and everything related to the upper chest. Um, but remember, mammograms are very important. Um, they do not re [00:17:00] increase the risk of cancer. The level of radiation is actually equivalent of you having a flight from Sydney to LA a few times back and forth.

And I dunno if anyone who would've canceled their holiday just because of the background radiation. Um, and the good thing about mammograms, it will pick up calcification. So you can try doing cts, you can try doing MRIs, you can also try doing ultrasounds. But it's usually the m the mammograms that pick up calcifications.

Which can be a sign of pre-cancerous change such as DCIS and or invasive cancer. And we know that with any type of cancer, the earlier you pick it up, the better your outcome is. In terms of treatment. 

Dr. Linda Bluestein: Do you see very many patients with hypermobility as part of the breast implant illness? Um, picture? 

Dr. Eva Nagy: Yeah, I do.

I do. And so as I start to go into it and learn about mar cell activation, and I'm part of the Masterminds group who are very, you know, they're very keen to [00:18:00] know about everything. I started to realize that bi actually in most people come as a syndrome. So mar cell activation, many people have polycystic ovarian and endometriosis.

Um, irritable bowel and irritable bowel is probably the most nuisance term possible because it doesn't describe much, but. I have actually taken, um, biopsy samples from previous scopes and shown as elevation in mast cells in the, in the scope samples, in the biopsy samples. So this IBS that they're talking about is most likely related to too much of the mast cells in the gut samples as well as to over triggered and release of histamine, which then causes a leaky gut and so forth.

And then we caught hypermobility. We've got POTS and a DH, ADHD type symptoms. So the more that people tick these, the more likely that they're going to have BII. And I think it wouldn't be so farfetched to take these as part of your [00:19:00] screening for anyone who wants to get implants and say, do you have any of these?

Even mild symptoms of A DHD and pots. You know, do you get palpitations? Do you get tachycardia? Do you feel dizzy when you stand up just a, a general screen and say, look, you've ticked a lot of these boxes. The likelihood that you're gonna get BIS probably higher than other people. Now this is on the proviso though, that they have these symptoms to begin with because many people might have such a mild case.

They don't meet the criteria for irritable bowel, for example. But then, then they put them in and the IBS gets the, the symptoms of the gastrointestinal digestive issues get so sim significant that they develop an IBS. So you might have a very low grade or very insignificant symptom when it comes to the disease, but then when you put them in, they get worse and that's when you actually identify.

But we have many patients who, you know, are hypermobile. Um, but [00:20:00] I have to say that in. And I think we'll leave it to the end. 'cause I know you're gonna ask me a question about hypermobility and I'll leave it to that. But, um, it's very important to take a really good history for these patients. It's not a case of you coming in.

And in 10 minutes we're gonna talk about taking your implants out and getting out our consults usually about an hour. And I'll go through what were you like from the time that you had your implants put in, what you were like after that. When did the symptoms come, what did you recognize first? And then it goes through the list of the things that we talked about.

Do you form that syndrome? Because again, we don't have that test and I can't assure anyone that they're gonna get better, but the more that they take, the more likelihood that they have bi, the more likelihood that they're gonna get better afterwards. But certainly hypermobility is a big issue. And with that comes connective tissue problems.

Um, you know, do they have epigastric pain when they eat? Do they fall into mouths? Um, do they have, you know, kinking of the vessels up near their neck and shoulder that causes occlusion that [00:21:00] cause the tingling of their fingers? Very, very common to get these outlier symptoms against which other specialists go.

You've got tingling your fingers, you're hyperventilating. It's your anxiety, right? No, no, no. It doesn't go that way. And, you know, I read a paper and it still makes me livid to this day that they, that there was four paths to it. And the final conclusion came out that, um, the type of surgery doesn't matter, but more to the point, these patients are neurotic and it's a US-based plastic surgeon.

And she actually wrote, and if you give me just, um. A brief moment. I would love to read this to you because I think it shows the, the level of, um, scrutiny that we go through. So, um, essentially it says that females who are [00:22:00] have BII have high anxiety levels, depression, anxiety, um, they have personality traits of neuroticism.

The ongoing tendency to experience negative emotions also higher in this group of people. Then they go on to say, social media platforms aggravate that, and they all come together. And so they all hyper neurotic, um, and they can't explain this unpleasant feeling, but once they get the implant out, that anxiety settles because it's all in the head.

I'm summarizing, but that's essentially what it is right now. What this author doesn't understand is that anxiety is the result of the BII. It's not that the patient is naturally or innately hyper anxious or neurotic. It is because nerves and Mars cells are very heavily integrated. They oppose each other and so when their Mars cells are [00:23:00] triggered and they can be triggered very instantaneously, the histamine releases very fast.

They release it directly onto the nerve, and when you're directly onto that nerve, you get a very instantaneous fight or flight response. So you get a background of anxiety, but then you get this panic attack or you get anxiety or depression. No matter what it is, it's a direct relation of the mast cell against the body of the, the neuron.

So it's the result of the breast implant illness. It's not innately for the patient that she has some psychological issue in most patients. So you, you're missing the point now when you remove the implant and the ca the capsule, which has some silicon in it, you are now calmed those muscles cells down and therefore that is the reason why your anxiety settles.

There may be a component also of relief that your implants are gone, but it's not a hundred percent of the [00:24:00] reason. It's, it's a molecular understanding of immunology and I I'm, and I think it's really irresponsible for a plastic surgeon who's supposed to be looking into breast implant illness to then switch around and say, you guys, you are neurotic.

It's in your heads. You know, you go into the social media platforms and you just hype yourself up. You know, it's, it's not like that. Where do patients go? If your doctor tells you it's in your head and you know that not to be true, you go to social support and your social support comes through social media these days.

You get hundreds, thousands of women's women who can come together and say, I've got that symptom. You've got that symptom. Maybe there's something here. Now, are you telling me those thousands of women are all neurotic, they all have mental health illness? No, no, no. You have to look at it in the true context.

And the true context is you have breast illness, your nerves are activated [00:25:00] by the cells releasing histamine. Many different. You remove the implants, which does have a level of relief to the patient psychologically, but more importantly, your muscle settle down and then you don't activate your nerves so much to become anxious and have panic attacks and depression.

Dr. Linda Bluestein: That drives me crazy also. That's like insane what you just read. And what bugs me so much about that is what happened to believing the patient, you know, until they give you a reason not to. Right. Like we're supposed to listen to them and believe them and that plastic surgeon obviously does not, which is just insane.

And another thing that you mentioned in there that I wanted to, to come back to was you said that the, that plastic surgeon said the type of surgery does not matter. Um, does the type of surgery matter? Yes. 

Dr. Eva Nagy: Hundred percent matters. Um. The paper that they did unfortunately is not, not very [00:26:00] robust. Um, the numbers are not there.

And, um, they didn't actually analyze the patient's different, um, surgical techniques for those patient had, BII, whether they had exactly the same, uh, implant type, um, whether they were ruptured, how many silicon particles were in there. They, they look at it from people who had BII did not have BII in the control group, but they didn't actually analyze within the BII group.

Now, they also didn't understand that. Well, they came, uh, I think it was a very low 4% of patients had silicon in their, um, capsules despite a no rupture. But we're seeing in our group at least an 85% amount, so 85% of our patients will have silicon in their capsules despite no rupture. So I'm not sure whether they're getting where they're getting this low percentage of, but I can guarantee you it's much more than that.

We have significant amount of patients who actually have X explan by other, [00:27:00] other surgeons, no capsulectomy, some capsulectomy. And I can tell you those patients may have an improvement in their symptoms, but not to the maximum that they can have. Also, some people have very limited amount of improvement, and so we go back and take out the tissue, the capsule that has been left behind, and that's when they start to improve.

So my question is, does this author believe that the capsule is pathological tissue? So if she says, no, this is not a pathological tissue, I would say, well, we often see acute and chronic inflammation in these tissues with or without. Inflammation as part of the tissue continues on, despite the fact that this, the implant has been removed.

And as you know, when you have inflammation in one part of your body, it can be recognized as a systemic symptom. [00:28:00] So, and if you are saying that the pathologic, the, the capsule is a pathological tissue, then why aren't you removing it? Now, there was another podcast by another plastic surgeon from Texas, and she said, this is not a unique skill to have Any plastic surgeon can take out capsules, whether they're under or over the muscle.

And why aren't you doing it? If a LCL, the lymphoma that's associated with implants, removal, block of the capsule is required and safely, why aren't doing pathological tissue? We see it under the microscope time and time again, but we don't know who's gonna have it and who doesn't. But we say a significant proportion have it.

85% will have silicon, A significant proportion will have acute and or chronic inflammation. There. It needs to be removed and the best way to remove it is on block. Now, a lot of people have an issue with the term [00:29:00] on block. On Block is used often in cancer surgery, but it just means in totality in French, it is derived from the term that says in totality or get it all out.

It doesn't mean you're taking half the breast with you. Yeah, it just means take everything out as one because often we also see fluid, peri-implant fluid, and when we've analyzed this fluid, they have floating silicon in it. So once you breach that cavity, which is still intact, you potentially releasing that silicon to your operating field.

And contaminating it. And silicon is very, very sticky. You can't just wash and wash and wash and wash, especially with a massive rupture. So take it out all in one, reduce that as variable. If patients don't get a hundred percent, or you know, we aim for about 90 to 95% better, then you [00:30:00] have, okay, I've removed the variable, which, which is the, the silicon we need to now concentrate on the mast cell activation.

Do they have mold issues? Do they have something in the home? What are they sensitive to? But if you don't remove all of the particles and, and without a doubt that you have nothing left surgically, you don't know what you're doing. And as pathological tissue is the same as in B ii, it's the same as in cancer.

In my mind, I'm not leaving cancer behind. Why would I leave pathological tissue of the capsule behind? So I'm very adamant because we have a very high success rate on people getting better. 98% success rate. Wow. Of 85% resolution of symptoms. Now, the paper that talked about, it doesn't matter whether they have a full on block, whatever, capsulectomy, they accepted improvement of their symptoms when it was 10%.

So the patient had 10% improvement after the surgery. [00:31:00] They counted that as a win. Like that's not a win. 

Dr. Linda Bluestein: No. Doesn't that It's probably 

Dr. Eva Nagy: just because they had pain from the implant that had, you know, captured the contracture. That's not a success. So you have to be, you have to read these, these, um, papers very, very carefully and understand what they're trying to sell you.

And what they're trying to sell you is, you are crazy if you are thinking that the operation matters, those surgeons who are doing it are irresponsible. You're increasing the risk of, um, chest wall injuries and lung injuries and heart injuries, which we've never had. 'cause you go slow. Go slow and take your time.

And it takes hours and hours, but you get to the end eventually and people do better. Yeah. 

Dr. Linda Bluestein: Yeah. And we're gonna talk more about the, the type of surgery and making a diagnosis of BII and, and a bunch of other things. We're gonna take a quick break and we'll be right back.

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We're back with Dr. Najee and this is such important information and you were just talking about the differences between, you know, subtotal, capsulectomy and n block, [00:33:00] uh, resection and that some people say, oh, well you might get a, a lung injury, or, or something like that. And I think it's important for some of the listeners to maybe understand that the breasts are on top of the chest wall.

And so when some people say, oh, well you might get an injury if you're, like you said, if you're not going carefully enough that, um, you know. There theoretically could be a chest wall type of injury, but you're going slow and you're taking your time. Um, are some surgeons not doing that because it's quicker and easier to do the subtotal?

Um, capsulectomy, of course, it's much 

Dr. Eva Nagy: easier. You're only taking half or some of the capsule. So if it's on top of the muscle, there's no reason. Even if you don't feel confident that um, you know, you find it too dangerous, for example, in your hands, there's no reason to do not to do an unblock when it's on top of the muscle because you have a good thick layer of pectoralis major on top of the chest wall.

So let's remove [00:34:00] that out of equation. Now, when it's underneath the capsule is actually firmly adhered to the periosteum of the rib and the fascia of the intercostal muscle. There is probably only a few millimeters from the capsule. Through the intercostal muscle to get inside the chest cavity. And that's where you have your lung and your heart, which is why we take so long to do it.

And I wear loops. It magnifies everything. We go slow and to take everything out as one. Now is there a theoretical risk, especially if it's really, really stuck, very inflamed, cardiac, uh, you know, really contracted thickened? Yes, there's a theoretical risk that we can cause a lung injury, uh, a chest wall injury, and I give my patients a less than 2% chance of that would happen because anything can happen in surgery, but that's why we go so slow and take hours and hours to do it.

Now the other thing is you need to be under the hands of [00:35:00] someone who knows what to do. If you have a chest wall injury, how to repair it if there's a lung injury, do they have, they had trauma training as a general surgeon cardiothoracic training to know how to put in a chest tube. How to manage it while he was sleeping, what to do postoperatively.

And you know, we have patients coming in to say, you know, my surgeon told me that if we everyone had an on block, um, half the ICU would be admitted by them because they would have lung injury. Right? So that, that's really scare mongering. Who would wanna go into surgery to do this knowing that you're going to have a high risk of lung injury?

Right. So I say to people, and I say to surgeons, if you're not willing to do it, if you're not comfortable doing it, either learn upskill or don't do it and pass it on to someone who actually will do it. Because patients do better when the capsule is removed from a bi I point of view, but also from a [00:36:00] contracted point of view.

So a lot of patients will say, I, I feel very difficult. Like I can't get my breath in. And the mechanics of movement of your ribs is such that it has to open up. When you breathe, breathe, and when you have capsule contracture with the, the, the capsule overlying your intercostal muscles and ribs, it restricts you like a corset.

And so unless you remove that, your, then your ribs can expand and your lung can expand. And then you get that breath in. And a lot of people, the next day they say, oh, I can breathe again. You don't have the same level of, um, release of that restriction if you leave the capsule overlying the ribs and the intercostal muscle.

So it has two benefits. Um, but you know, we've been doing this for quite some time. We're now about 200 patients on no chest injury. No lung injury, you know, because you just need to [00:37:00] do it properly. And if you're not, if you're not specializing in this. If you just wanna put in the implants, that's one thing.

But don't call yourself a specialist in BII as a surgeon, if you're not willing and capable of 

Dr. Linda Bluestein: doing the work. And, and I'm thinking, you know, from being in the operating room for a couple decades, that that's pretty amazing if they actually are saying that they feel like they can breathe easier after they've just had this pretty major surgery.

So that really speaks to the fact that, um, you know, there must be quite substantial improvement because they obviously also have the inflammation and everything immediately afterwards, you know, from the surgery. So, so that's fantastic that you're seeing some improvement that quickly. 

Dr. Eva Nagy: But we also see improvement in the BII symptoms.

So remember that the muscles cells are not being activated and triggered anymore, so they're releasing this histamine. So when I see them next day on the ward, they're breathing better, the eyes are whiter. You know, there a lot of people have [00:38:00] injected red eyes that's also very histamine related and. Um, and they, their brain fog, their brain fog releases in many patients quite quickly.

Dr. Linda Bluestein: So what should people be asking their surgeon specifically if they're thinking I'm, you know, concerned or wondering if this might be something that I should pursue, um, what exactly should they be asking their surgeon in order to determine if they're going to approach this the way that would be most appropriate?

So if 

Dr. Eva Nagy: they're having symptoms that they can't, um, diagnose, you know, they've looked through everything, they've seen all the specialists, no one can pinpoint anything. Um, and it's sort of outside the square. They've had all blood test imaging. Nothing is showing up, starts to think about. BII. Um, the questionnaire that has been formulated is actually for Lyme, uh, it's for Lyme patients [00:39:00] because a lot of those symptoms overlap.

So I use that one. Um, take that test, see how many boxes you tick. Now it does talk about cellulitis and breast tenderness and all these things, which can still be part and parcel of just being you or aging. Um, but things like really significant fatigue. You are not sleeping well. You have digestive disorders, palpitations, um, difficulty breathing, shortness of breath.

You know, it goes through like over 50 symptoms. So the more you tick, the more likelihood that something is up. Now, if you think that you want them out, find a surgeon that will guarantee you'll have all the capsule removed. Ideally as on block with photos, photographic evidence of the intact capsule over the implant front and back, because sometimes they give you the photo of the front bit and then you turn it over [00:40:00] and there's a big bear.

He's missing, and that's the capsule that's remaining on the chest wall. Um, find someone who's not afraid of it and, and we'll guarantee it. 'cause a lot of them people say, I'll do my best. You know, I'm on your side. Uh, you know everything, you know, whatever is safe, I will do. And then they come out with this tiny little fragment, and then they tell the patient it was too dangerous.

Well, you knew that to begin with. You knew that you're not gonna be able to do it. So yet you took the patient's money and did half the job. Now they have to go find another specialist who's willing to go in to take out the remainder of the capsule if you haven't gotten better. And that's much more extensive surgery and much, much more difficult because the planes are all squished.

So, um, confidence in your surgeon is a really big difference, but evidence is also, um, the capsule needs to be sent off for testing. Yeast, mold, vir, uh, yeast, mold, bacteria, [00:41:00] um, looking at inflammation. And I also ask now to do mast cell counts, which is part and parcel of the normal histology that we do. Um, by staining with CD one 17, you'll not see it with a normal h and e stain as the usual one that we do to show inflammation.

Different cells, it will not pick up ma cells. They just blend into looking like other white cells. So you need to have CD one 17 stain, which stains them, brownie black, brownie black, and then you can see where there's increase in number, which is a good indicator that it played a role in.

Dr. Linda Bluestein: And I know for GI tissue, we don't know for sure what's the quote unquote normal number and you know, you look for this shape of the mast cells and are, is there clumping and that kind of thing. Do you have thoughts as to what would be a, a more normal number of mast cells versus an abnormal [00:42:00] number? 

Dr. Eva Nagy: So we say anything over 20 per high power field, um, averaged over 10 or the highest of 10.

Anything greater than 20 is considered to be consistent with, um, muscles of the, the gut or NCAs of the gut. And so we, we haven't had many patients, we just started doing this, but we, whatever had, I think we're up to 10, every single one of them had that were Wow. And so they were told, um, you know, when looked in the H, everything's fine.

No inflammation, there's no signs of ulceration, no Crohn's, no ulcerative colitis. Um, but when they stained, they're high. The highest I've had so far. And she, she could, she couldn't eat properly, you know, she was stuck on just a few fuse. It was 73, you know, it's well above 20. And so unless you target, um, MCAS [00:43:00] medication towards the gut, chromin is a good one.

Sodium chromin. Um, just as a Mars cell stabilizer, it's very hard to get on top of things. So, you know, when we do the, the, the operation, we want to maximize the surgical approach, but there's also some extra things that we have to do in a number of patients to target them. Ours, cells that are still hyper in different parts of the body, such as the gut, but it's very, very difficult and virtually impossible to resolve other parts of the body unless you remove the ultimate trigger.

Mm-hmm. 

You know, you're, you're beating a dead horse if you're trying to give many, many different MA type medications, but your immune system is completely overwhelmed with having implants in there. 

Dr. Linda Bluestein: Right. No, that makes perfectly good sense. If the offending, um, you know, foreign body is still in that, it would not be easy by any means to, to resolve the symptoms.

And I prescribe so, uh, chromo and sodium a lot as, as well for gastrointestinal symptoms and topically in a [00:44:00] variety of different ways. Um, so if people are having, maybe they've already had a partial capsulectomy and they do have similar remaining symptoms and you do an end block resection, what are the statistics there in terms of percent improvement?

So 

Dr. Eva Nagy: when we go back in, that's not called on block anymore, so that's just removing the residual. Um, and if they had no improvement, we're staying up to 60 to 70% improvement in their symptoms. Residual symptoms, um, those who had, you know, 50%, we might have an extra 20% improvement. Um, but it's the things that really matter, such as energy and brain fog, um, the things that are really critical to everyday functioning.

Um, so we see, do, see improvement, but the problem comes is that what's happened, um, is that you probably have a release silicon and you still would have silicon within the breast tissue. And so that's maybe the reason [00:45:00] why they're not getting to the same level as other people who have done it the correct way to begin with.

Um, so they need a lot of, a lot more support in terms of their MCAS because, you know, you, you've breached that area where it was contained originally and now it's sort of spread. Um, the interesting thing is that when. We have patients who have on block, but we know they have silicon in their lymph nodes, they still tend to get better, which is counterintuitive because when it's in your breast tissue or when it's localized to the breast or even lymphatics, it seems to be aggravating.

But when it goes to the lymph nodes, you can still have improvement despite not removing the lymph nodes itself. So Dr. Fang, she, um, illustrated that she used to take out, uh, lymph nodes that has silicon within them. Um, and that [00:46:00] causes a lot of morbidities. So we have, you know, cancer patients have the, the lymph nodes removed as part of their cancer treatment.

They can get lymphedema, they can get cording problems with their shoulder movement, chronic pain. And so you offset the benefit with lot, lot more morbidity. So then we decided, okay. Why don't we just leave the lymph nodes there and see what happens? And actually patients did get better from their BII symptoms regardless.

Um, I've got a patient, she had a massive rupture. Not sure how the surgery went, to be honest. Um, and she's got lymph nodes full of silicons in her ex up to her neck. The internal memory change the chain behind the breastbone. Um, and she's really, really well, she's had a baby, um, her first child about two years ago, continues to do well.

So there's something in that microenvironment of our, um, lymph nodes, which is somewhat [00:47:00] different to when we have silicon within our breast, in the breast tissue or the lymphatics. It's quite interesting. 

Dr. Linda Bluestein: Yeah, that is interesting. Um, could that be a, a toxic load kind of a situation where if you removed by far the bulk of it, even though there was some silicone in the lymph nodes, you've.

Reduce the toxic burden significantly enough that they improve 

Dr. Eva Nagy: potentially. But I think maybe it's also about inflammation. So even though the silicon is within the lymph nodes, when we do a biopsy of that, we don't see inflammation yet. We see inflammation as part of the capsule. But I'm not sure about burden of disease because this, this lady has a lot of silicon in a lot of her lymph nodes and she's got a lot of burden of the silicon within her body, but she's still functioning very 

Dr. Linda Bluestein: well.

Yeah. Interesting. Um, one of the listeners wanted to know if you recommend replacing breast implants after a certain number of years. 

Dr. Eva Nagy: Yes, I do. So we've seen, um, [00:48:00] gel leak without a ruptures early as two years after insertion. That's not to say you should be changing it every two years, but, um, we. And we keep, you know, the, the companies that make it saying this is cohesive now and it's double layered, or, um, we have new technology.

It, it's fine. You can leave it in there unless you have a problem. 

Dr. Linda Bluestein: Mm-hmm. Now 

Dr. Eva Nagy: what kind of problem are you talking about? 'cause if you have a rupture, that's a, there's a big issue. Um, but even for my cancer patients, I usually start introducing, well, you know, it's a, it's a small operation. It's, you know, take 15 minutes, I'm gonna take out your old implants and just get a fresh one.

Five to 10 years. Very different from the cosmetic world, I'm sure. But we have to be mindful that these things can gel, leak very, very early, 2, 3, 4, 5 years, even after insertion. And we don't know the long-term consequences of that either. [00:49:00] So, you know, the standard used to be every 10 years. I think that should still stay.

Um, I don't think that, you know, you should be leaving in there because it's going to degrade over time. Mm-hmm. And a lot of people say, you know, this is an implant, we'll sit it on the table. If I come back in 10 years, it's gonna look exactly the same. And that may be true, but the environment is different when it's inside you.

You have actively, your immune system is actively breaking it down and whilst it is not able to do so to completion, you do have weakening and degradation of that, that casing. So I usually start introducing at the five year for my, for my cancer patients. Um, and certainly at 10 years. 

Dr. Linda Bluestein: And 

Dr. Eva Nagy: in the cosmetic world, do you know what the recommendation is there?

Well, from what I'm hearing from patients is that don't do anything unless there's a, a rupture or there's a problem. 

Mm-hmm. Because 

they're lifelong devices. That's what they're being told. Yeah. That's what [00:50:00] they're telling me. And I think that's quite absurd. You know, you should be looking at, at least every 10 years.

Mm-hmm. 

But if you, if you have symptoms of BII, um, I don't think you should be putting in a new set either, because you already primed yourself. You know, if you're not really dependent on your implants, um, and you have significant BI symptoms, that it's a diagnosis of exclusion. Okay? So you've excluded everything else, um, and you're still feeling rubbish.

The the answer is not to put them back in. Find someone who will take them up properly for you, fix your muscle if it's under the, the muscle because it's exceptionally important for function and for whoop. 

Dr. Linda Bluestein: Mm-hmm. 

Dr. Eva Nagy: And do some level of reconstruction. Yes, you'll be petite. But what you don't want is wrinkling of the skin nipple inversion, um, cavitating centrally, you know, you can avoid that.[00:51:00] 

Um, and you can be healthy and, and look normal and just be petite. There's nothing wrong with being petite. If you've, if you have symptoms 

Dr. Linda Bluestein: and, and reconstruction is possible, then is that something that, um, do you, do you know, I mean, obviously it's gonna vary depending on the person and where they live and what kind of insurance they have.

But is this the kind of thing that is sometimes covered by insurance? Not often, often covered, do you know? 

Dr. Eva Nagy: Um, so in Australia we have a very strict criteria that you can have a lift or mastopexy. If the nipple is at the lowest point of the breast and two thirds of the breast is below the inframammary fold, mm, then they say, yes, it's a, it's a legitimate, um, medical need.

However, um, if you don't meet that criteria, it's that part of the operation is considered cosmetic and totally out of pocket. But that doesn't mean the remainder of the operation is. [00:52:00] So the X explan part, the capsulectomy, the muscle repair, the private health insurance and the hospital, it, it, the, the majority is covered by the, the health insurance.

It's just that, for example, one hour cosmetic time that's allocated to the patient. I'm not quite sure of American standards, but it really should be part of it. It's very difficult to come from someone who's got very round and robust, no sort of busty, um, look to being very petite. But the petite is not the, the problem, it's the flattening, it's the nipple ptosis, um, wrinkling of the skin.

Because remember when you wear an A cup or B cup, when you put them in and you've expanded to c, d double de, you've done it instantaneously. You haven't given your skin time to stretch. And so when you take them out, tissue TURs often a problem. And you get lots of wrinkling. [00:53:00] And when women are young, or even if they're older, it just doesn't gel with their psyche, right?

When you look at the, the befores and afters, it's very confronting. So you try to minimize that by doing a lift. You tighten in the skin, um, and you elevate the nipple to high position, and that gives perkiness, roundedness, smoothness of the skin, um, without sort of the adverse effects of having the stretching.

Now we have to be realistic, and a lot of our patients do have significant body dysmorphia, for example, and they expect perfection. But you're dealing with tissue that has been, um, we call it, it's not virgin tissue anymore. So when you put your implants in their virgin tissue, it's not tissue's been stretched and, and.

Somewhat destroyed by the fact that you had implants. Right? And so we're trying to work with the tissue that we have. Um, so we have to be realistic in what we can [00:54:00] do. But what we don't want is to be, you know, abnormal in 

Dr. Linda Bluestein: how we appear in front of the mirror. Those are such important things to discuss with the surgeon.

And I know when you gave the talk to the mastermind group, which was an outstanding talk by the way, um, you had some great images that, that you showed. Maybe we can put some of those on the, on the YouTube video so people can actually see, you know, what that looks like after the reconstruction. 'cause I think that's such an important thing to talk to the surgeon about, if that's something that they can do so that, um, you know, you can have a, a good outcome.

Dr. Eva Nagy: Yeah. And like I said, it cannot be perfect, right? Um, we try our very best to, to minimize the negative effect of the implant that was there. Um, but you shouldn't walk away feeling that you have been deformed. Mm-hmm. Trying to maintain that normality. 

Dr. Linda Bluestein: Okay. Well this has been such a wonderful conversation and I could ask you so many more questions, but I wanna be respectful of your [00:55:00] time.

And I, you probably know we always end every episode with a hypermobility hack. So do you have a hack that you could share with us? Okay. That 

Dr. Eva Nagy: the hack is not really a true hack, but, um, so a lot of people will actually, uh, who come into my rooms if you did the bait and score that you probably would say that they're not hyperflexible.

But actually what has happened is, you know, I'm preaching to the choir, I'm sure because you notice that, um, your muscles try and compensate for the looseness of the joints and become very, very tight. And so if I try to say, okay, bend down and touch the, the floor without bending your knees, they can't do it.

And it's not necessarily because they're not hypermobile, it's the fact that their muscles have tightened up. So I usually go back and if any patient is thinking, well, I used to be mobile, hyper mobile, but now I'm not. Go back and think, what were you like as a child? Did you have, um, were you, [00:56:00] did you amuse your friends with doing contorting your body or into strange shapes?

Or could you do the splits, um, as a teenager or child? Did your knee dislocate? Did your shoulder dislocate? When for doing not particularly anything traumatic. Do you have ty skin? Is it soft? You know, so just because you don't meet the beta score doesn't necessarily mean you don't have hypermobility flexibility.

It's just that your body has changed over time to compensate. And so working with a, a coach, someone who specializes in the field to strengthen your muscles, supporting your joints, um, the stability. I think you may agree that that's the, the best approach that you can to try and remedy the situation, even if you don't think that you have the hyper flexibility and mobility when actually you do and your body's compensated in an adverse way.

Dr. Linda Bluestein: Yeah, and we all know that joint mobility goes down with age. [00:57:00] So there's even just normal aging and injuries and surgeries and, and, uh, it is very frustrating 'cause the BITTON score only looks at a small number of joints. So the BITTON score has plenty of flaws. So we talk about that a lot. So where can people learn more about your amazing work?

Dr. Eva Nagy: Um, so we have, uh, a Facebook group, just a, well, a Facebook page where we talk about BII, we've got a website and with Dempsey we've done a couple of podcasts. Um, but. Now that we're getting more and more numbers, we're going to be publishing more. Mm-hmm. And I think the next one, so the, the pilot study that we had, we had 15 in each group.

Um, and we did show the mast cells were very significantly different. And doing the on block caused a really good resolution in many symptoms. And unfortunately was PPO poo-pooed by a journalist who didn't understand the concept of a pilot study and said the numbers were too small. Mm. And so now we're going to be [00:58:00] publishing afterwards, you know, we've got 150 plus patients now, and it shows exactly the same thing.

Mm-hmm. 

Where, you know, you do the surgery, people get better from bii as a legitimate illness the ma cells make, um, is, it's the source probably or the foundation of what the issue is triggering of the mast cells, activation of the histamine and the rest of your body to cause the symptoms. Um, and then ultimately what we want to do is to have more people and publish on the, the bowel study to show that the mast cells are increasing number there.

And the third one is, after doing 150, 200 patients, is no chest wall injury, no lung injury, no heart injury. It is safe in the right hands. And I think that patients should try to push for this for their own benefit. And unfortunately, patients have to be their own advocate sometimes. 

Mm-hmm. 

Um, until we have a consensus that this is the right way to do things.

And can you take patients outside of [00:59:00] Australia? Yes. Yeah. So, okay. We have a lot of interstate patients within Australia, but also we've had a, a few from America. Um, if money is an issue, Dr. Fang and Dr. Khan are big believers on doing on block, um, locally and within the us but those who travel, we have, um, a corporate rate with, uh, apartments nearby, very close to the hospital so we can work with patients to come.

Dr. Linda Bluestein: Um, and we have had that. Yes. Well, well thank you so much for taking the time to chat with me today. I know that you're extremely busy and this is just such a great conversation. I think the listeners are really going to enjoy, uh, you know, hearing this information. And like you said, this is a legitimate illness, but unfortunately so many people are led to believe that it's not.

So this is just really important information, so thank you for sharing it. 

Dr. Eva Nagy: I think women know their bodies, you know? Yeah, 

Dr. Linda Bluestein: they do. 

Dr. Eva Nagy: And unfortunately, if you're being gas lit by one person, go see someone else because there [01:00:00] are people out there will who believe you. And my mother told me she's a doctor herself.

She said, um, Ava, um, if, if you are too stupid not to know that the patient is telling the truth, that's on you. Yeah. Figure out what's wrong with your patients. The patients are always right. Don't be the stupid one who says it's just in their heads. And I've taken that ever since I was 18 when I started my training.

Um, I've taken that on board and just to legitimize and understand patients, the vast majority of them do have an issue and we need to get to the source of it. And stop. Um, gaslighting and blaming your patients. They, they have a mental illness. 

Dr. Linda Bluestein: Absolutely. Wonderful words of wisdom from your mother. That's amazing.

True, true. Yeah. Yeah. Alright, well thank you again. I really appreciate it. Thank you so much.

That was such a great conversation with Dr. Najee. Mast Cell Activation Syndrome affects so [01:01:00] many of you, and so this is such an important conversation to have. Thank you so much for listening to this week's episode of the Bendy Bodies. With the Hypermobility MD Podcast, you can help us spread the word about joint hypermobility and related disorders by leaving a review and sharing the podcast.

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