Are Your Breast Implants Making You Sick? with Dr. Eva Nagy

[01:08] Dr. Linda Bluestein: Welcome back, every bendy body, to the Bendy Bodies Podcast with your host and founder, Dr. Linda Bluestein, the Hypermobility MD. I am so excited to have this conversation today with Dr. Eva Nagy about breast implant illness. This is a condition that affects so many women, yet so often they are told that this is in their heads. This is really an important conversation, so I hope that you will really enjoy it.
[01:31] 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.
[01:52] 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 will 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 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 is not a substitute for personalized medical advice. Be sure to stick around until the very end so you don't miss any of our special hypermobility hacks. Here we go.
[02:49] Well, I'm so excited to be here with Dr. Nagy, and we want to jump right in and talk about breast implant illness. So can you start out by telling us, what is breast implant illness?

[03:02] Dr. Eva Nagy: The first thing that I have to say is that it's a legitimate disease. I cannot tell you how many times women come into my office and 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're not sleeping well. You're not exercising. Go do that, go have a happy and healthy diet, and everything will be fine again. But it doesn't work that way.
[03:28] And so it doesn't fit into a nice little box of medicine. Everything has a little component, and it touches on every single facet of your body — neurological, gastroenterological, your skin, your cardiac, your lungs. 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 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.
[04:19] Now, the more I start doing this and delving into it more, I'm starting to believe that it's mast cell activation syndrome. It's at the key part of it. So we all have mast cells, which are part of our immune system, and think of it 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 silicone. And when they get triggered by this, the mast cells can undergo somatic mutations. So mutations that you acquire as opposed to what you're born with — congenital. They become more and more triggered by certain items. And so the silicone causes that activation and the mast cells release histamine.
[05:04] Most people know about histamine and we've all taken antihistamines at some point in our lives. 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 to open and the white cells to come in and remove the toxin that has been injected by the mosquito. But when they go too rampant, when they get triggered too much, they release too much histamine and too many factors — they have hundreds of factors that they can release. And it becomes systemic, gets circulated in the entire bloodstream. And so therefore you can have symptoms in any part of your body.
[05:44] So you get this systemic release of histamine and other factors, and then that brings about your symptoms. This has been recognized. BII has been recognized by the FDA in October 2021. Although they didn't call it 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 illness, 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 quite a higher number of patients who have silicone left in their capsule despite the fact that they don't have a rupture. And if you leave silicone 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.
[06:46] 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 you.

[07:01] Dr. Linda Bluestein: And are some women more susceptible than others? Do some women get breast implant illness and others are actually fine? And if they think they're fine, are they really actually fine?

[07:13] Dr. Eva Nagy: That's a good question in that I'm not sure every single woman who has implants is going to get it. And we don't understand why some women get it and some don't. We know that somatic mutations in mast cells occur in about 17 to 20% of the population, although I think that's an underestimation. But we have done a pilot study, which we've now expanded to about 150 patients, where we see patients who say, I'm fine. I just want to get them out. I've had my fun with them. I'm 40, 50, I don't need them anymore. And they fill out the BII questionnaire. We have 250 different questions trying to target different symptoms. And they tick and they tick and they think, hang on a minute, 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 very busy. My marriage is not so great. My job is really hectic. So they sort of explain it away.
[08:17] But I call it subclinical BII, 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 en bloc capsulectomies, 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 urinary tract infections or dyspareunia. 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 that quite a large number of women actually have an adverse reaction to the implants as a manifestation of systemic symptoms.

[09:12] Dr. Linda Bluestein: And when do the symptoms usually appear?

[09:15] Dr. Eva Nagy: Well, that's interesting in itself, because if you take a detailed history — and 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 on very quickly and didn't resolve? You have to put it into context that they had general anaesthetic and they might be nauseous and don't feel so great for the first few days, but that shouldn't linger.
[09:36] So in some women you can actually have it as soon as they wake up from surgery. One of my patients was very, very sick. 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. She was kind of able to go to work, but she would quickly come home and go to bed, sleep for as long as she possibly could. She didn't have the energy that she did before, and prior to that she had been going to the gym. Very fit. So you can get it as soon as you wake up — it's an instant reaction. Or you can get it later on. We get people 5, 10, 15, even 20 years down the track.
[10:26] Now, whether that's a result of your immune system being triggered 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. Think of it like a tea bag. The tea bag looks fine on the outside, but you put it into water and the tea just leaches out. So over time, there's a degradation of the casing of the implant, and you can get these little microperforations and gel leak.
[10:57] And the problem is that we don't have a magical test yet. We don't have a blood test. We don't have any imaging that we can do to say 100%, yes, you've got breast implant illness. And again, that's why it's so hard to legitimize in the medical field — because we don't have that test yet. But it exists and it's a definite thing. There are thousands and thousands of women on Facebook in the BII group who have demonstrated that they have the symptoms and the illness, and when the implants are removed, they get better. Just because we don't have that test yet doesn't mean it's not an actual thing.
[11:45] But you can get it at any time, from the moment you wake up from surgery to years later. And remember, it's insidious. You can't tell the difference from today to yesterday to even a week before. But when you look back a year, it's like, gee, 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. And so that's why it's sort of hard to put your finger on it.

[12:19] Dr. Linda Bluestein: And like you said, there are so many other factors. If you're waking up from anesthesia and you just had surgery, of course there's a lot going on. And if it's a number of years later, if there are hormonal changes and things like that — I can definitely see where making the diagnosis is challenging. But it's great that you have developed this questionnaire, which we'll definitely link in the show notes if you're able to share that with us, because I'm sure people would love to see that. And what about saline implants? Are those safer, or can people still get BII with saline implants?

[12:51] Dr. Eva Nagy: People can still get BII with saline implants. But we don't insert them as often, especially in Australia, as silicone implants — for cosmetics and even for reconstruction. So we have a reduced number already, which makes it hard to estimate. If 95% of the population have gel implants, then if you're going to manifest a disease, it's easier to see with a larger group of people.
[13:20] But I've actually had patients who had saline implants where after 20 years the casing had degraded enough that there were bits of silicone that had 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 silicone moves. Now, once it gets to the lymph nodes, it's been demonstrated that it can actually go beyond. Autopsy studies have shown that you can get silica in the brain and the spinal cord, colon, kidneys. It moves. But we don't have any long-term data or research to show what the long-term consequence of that is. Does it sit there? Does it do nothing? Does it integrate itself? Although I can't imagine silica in your brain being good. And does it set up local and systemic inflammation?
[14:23] We know that inflammation is a big driver for cancer. So I'm not saying that people who have silicone in their bodies that goes into the lymph nodes or beyond will get cancer. We don't have that as a research finding yet, but it's in our minds. This is not necessarily inert and it doesn't necessarily stay local. What happens when it goes beyond?

[14:43] Dr. Linda Bluestein: And what about autologous fat transfer?

[14:50] Dr. Eva Nagy: Autologous fat transfer uses your body, your own tissue. There was a suggestion early on that for patients who have breast cancer, it can be a source of stem cells and aggravate any particular breast cells that want to convert into cancer cells — that it can aggravate that. But that's been debunked. And we do use it for patients, whether they're cancer patients or not. So we consider it very safe.

[15:22] 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 or leakage, like certain exercises that people might do? I know one of the listeners asked about mammograms — if that's something that might increase the risk of those events.

[15:34] Dr. Eva Nagy: That's a very tricky question, because 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 1 to 2% — chance there may actually be a rupture during that time. So we still encourage women to have mammograms, because there are ways of pushing and manipulating the breast and the implant to get it out of the field. You just need to go to a reputable place that does it consistently with a high level of expertise. I've never seen a rupture from it. I work at BreastScreen as part of my oncoplastic job and we've never actually had any rupture.
[16:25] But anything with significant force has the potential to cause one. Now, I don't actually think it's exercise that's causing the issue of breakdown and gel leaks and the degradation of the capsule. I think it's your actual immune system trying to break it down and weakening the device. I've never told anyone, please don't exercise because you've got implants. I think that'd be counterintuitive. I tell them, of course, after reconstruction, just be mindful, don't do too much. But there's nothing to say that you can't exercise or do the chin-ups and the pull-ups and everything related to the upper chest.
[17:25] But remember, mammograms are very important. They do not increase the risk of cancer. The level of radiation is actually equivalent to you having a flight from Sydney to LA a few times back and forth, and I don't know of anyone who would cancel their holiday just because of the background radiation. And the good thing about mammograms is they will pick up calcification. You can try doing CTs, you can try doing MRIs, you can also try doing ultrasounds, but it's usually the mammograms that pick up calcifications, which can be a sign of precancerous 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.

[18:12] Dr. Linda Bluestein: Do you see very many patients with hypermobility as part of the breast implant illness picture?

[18:19] Dr. Eva Nagy: Yeah, I do. And as I start to go into it and learn about mast cell activation — and I'm part of the Masterminds group who are very keen to know about everything — I started to realize that BII actually in most people comes as a syndrome. So mast cell activation, many people have polycystic ovarian syndrome and endometriosis, irritable bowel. And irritable bowel is probably the most nuisance term possible because it doesn't describe much. But I have actually taken biopsy samples from previous scopes and shown there's elevation in mast cells in those biopsy samples. So the IBS that they're talking about is most likely related to too many mast cells in the gut and to over-triggered release of histamine, which then causes a leaky gut and so forth.
[19:10] And then we've got hypermobility, we've got POTS, and ADHD-type symptoms. So the more that people tick these, the more likely they are to have BII. And I think it wouldn't be so far-fetched to include these as part of your screening for anyone who wants to get implants — ask, do you have any of these? Do you have even mild symptoms of ADHD and POTS? Do you get palpitations? Do you get tachycardia? Do you feel dizzy when you stand up? Just a general screen and say, look, you've ticked a lot of these boxes. The likelihood that you're going to get BII is probably higher than for other people.
[19:52] Now, this is on the proviso that they have these symptoms to begin with, because many people might have such a mild case that they don't meet the criteria for irritable bowel, for example. But then they put the implants in and the gastrointestinal digestive issues become so significant that they develop IBS. So you might have a very low-grade or insignificant symptom when it comes to the disease, but then when you put them in, it gets worse. And that's when you actually identify it.
But we do have many patients who are hypermobile. And 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 going to talk about taking your implants out and getting out. A consult is 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 go through the list of things 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 going to get better, but the more that they tick, the more likelihood that they have BII and the more likelihood that they're going to get better afterwards.
[21:12] But certainly hypermobility is a big issue, and with that comes connective tissue problems. Do they have epigastric pain when they eat? Do they fall into MALS? Do they have kinking of the vessels up near their neck and shoulder that causes occlusion, that causes tingling of their fingers? Very, very common to get these outlier symptoms against which other specialists say, you've got tingling in your fingers, you're hyperventilating, it's your anxiety. No, no, no. It doesn't go that way.
[21:46] And I read a paper and it still makes me livid to this day. It had four parts to it, and the final conclusion came out that the type of surgery doesn't matter, but more to the point, these patients are neurotic. It's a US-based plastic surgeon. She actually wrote — and if you give me just a brief moment, I would love to read this to you because I think it shows the level of scrutiny that we go through. Essentially it says that females who have BII have high anxiety levels, depression, and 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're all hyperneurotic. 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.
[23:04] Now, what this author doesn't understand is that anxiety is the result of BII. It's not that the patient is naturally or innately hyper-anxious or neurotic. It is because nerves and mast cells are very heavily integrated. They oppose each other. And so when the mast cells are triggered — and it can be triggered very instantaneously, histamine releases very fast — they release it directly onto the nerve. And when it's directly onto that nerve, you get a very instantaneous fight-or-flight response. So you get a background of anxiety, and then you get panic attacks or depression, no matter what it is. It's a direct relation of the mast cell against the neuron. So it's the result of the breast implant illness. It's not innate to the patient that she has some psychological issue, in most patients.
[24:11] So you are missing the point. Now, when you remove the implant and the capsule, which has silicone in it, you have calmed those mast 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 100% of the reason. It's a molecular understanding of immunology.
[24:35] 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 are neurotic, it's in your heads, you go into the social media platforms and you just hype yourself up. 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 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. You have to look at it in the true context. And the true context is you have breast implant illness, your nerves are activated by the mast cells releasing histamine and many different factors. You remove the implants, which does have a level of relief to the patient psychologically, but more importantly, your mast cells settle down and then you don't activate your nerves so much to become anxious and have panic attacks and depression.

[25:48] Dr. Linda Bluestein: That drives me crazy. What you just read is just insane. And what bugs me so much about that is — what happened to believing the patient until they give you a reason not to, right? 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 come back to was you said that plastic surgeon said the type of surgery does not matter. Does the type of surgery matter?

[26:21] Dr. Eva Nagy: Yes, it 100% matters. So the paper that they did unfortunately is not very robust. The numbers are not there and they didn't actually analyze the patients' different surgical techniques for those patients who had BII — whether they had exactly the same implant type, whether they were ruptured, how many silicone particles were in there. They looked at it from people who had BII versus did not have BII as a control group, but they didn't actually analyze within the BII group.
[26:56] Now, they also didn't understand — they found, I think, a very low 4% of patients had silicone in their capsules despite no rupture. But we are seeing in our group at least 85%. So 85% of our patients will have silicone in their capsules despite no rupture. I'm not sure where they're getting this low percentage from, but I can guarantee you it's much more than that.
[29:12] We have a significant number of patients who have explants by other surgeons — no capsulectomy, some capsulectomy. And those patients may have an improvement in their symptoms, but not to the maximum that they can have. Also, some people have very limited improvement. And so we go back and take out 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? Because if she says no, this is not pathological tissue, I would say, well, we often see acute and chronic inflammation in these tissues with or without silicone. Inflammation as part of the tissue continues on despite the fact that the implant has been removed. And as you know, when you have inflammation in one part of your body, it can manifest as a systemic symptom.
[29:12] And if you are saying that the capsule is 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. Then why aren't you doing it? If ALCL — the lymphoma that's associated with implants — requires en bloc removal of the capsule, and you are capable of doing it safely, why aren't you doing it?
[29:12] We know that this is pathological tissue. We see it under the microscope time and time again. But we don't know who's going to have it and who doesn't. A significant proportion will — 85% will have silicone, and a significant proportion will have acute and/or chronic inflammation. It needs to be removed, and the best way to remove it is en bloc. Now, a lot of people have an issue with the term en bloc. En bloc 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. It just means take everything out as one, because we also often see peri-implant fluid, and when we've analyzed this fluid, it has floating silicone in it. So once you breach that cavity, which is still intact, you potentially release that silicone to your operating field and contaminate it. And silicone is very, very sticky. You can't just wash and wash and wash, especially with a massive rupture.
[30:19] So take it out all in one, remove that as a variable. If patients don't get 100% — and we aim for about 90 to 95% better — then you know you've removed the variable, which is the silicone. You 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 you can't say without a doubt that you have nothing left surgically, you don't know what you're dealing with. Pathological tissue is the same in BII as it is in cancer in my mind. I'm not leaving cancer behind. Why would I leave pathological capsule tissue behind?
[31:03] So I'm very adamant, because we have a very high success rate — 98% success rate — of 85% resolution of symptoms. The paper that talked about it not mattering accepted improvement when it was 10%. So the patient had 10% improvement after the surgery and they counted that as a win. That's not a win.

[31:32] Dr. Linda Bluestein: No, definitely not.

[31:33] Dr. Eva Nagy: It's probably just because they had pain from capsular contracture that resolved. That's not a success. So you have to read these papers very, very carefully and understand what they're trying to sell you. And what they're trying to sell you is you're crazy if you think that the operation matters, and those surgeons who are doing it are irresponsible, increasing the risk of chest wall injuries and lung injuries and heart injuries — which we've never had, because you go slow, you take your time, it takes hours and hours, but you get to the end eventually and people do better.

[32:13] Dr. Linda Bluestein: Yeah. And we're going to talk more about the type of surgery and making a diagnosis of BII and a bunch of other things. We're going to take a quick break and we'll be right back.
[33:50] We're back with Dr. Nagy, and this is such important information. You were just talking about the differences between subtotal capsulectomy and en bloc resection, and some people say, oh, well, you might get a lung injury or something like that. And I think it's important for some of the listeners to understand that the breasts are on top of the chest wall. And so when some people say you might get an injury — if, like you said, you're not going carefully enough — there theoretically could be a chest wall type of injury. But you're going slow and you're taking your time. Are some surgeons not doing that because it's quicker and easier to do the subtotal capsulectomy?

[34:35] Dr. Eva Nagy: Of course, it's much 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, even if you find it too difficult in your hands — not to do an en bloc, because you have a good thick layer of pectoralis major on top of the chest wall. So let's remove that out of the equation.
[35:02] 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. I wear loupes that magnify everything. We go slow and take everything out as one. Now, is there a theoretical risk, especially if it's really, really stuck — very inflamed, really contracted, thickened? Yes, there's a theoretical risk that we can cause a lung injury or a chest wall injury. And I give my patients a less than 2% chance that 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.
[35:57] Now, the other thing is you need to be in the hands of someone who knows what to do if you have a chest wall injury — how to repair it. If there's a lung injury, have they had trauma training as a general surgeon, cardiothoracic training, to know how to put in a chest tube, how to manage it intraoperatively, what to do postoperatively? We have patients coming in to say, my surgeon told me that if everyone had an en bloc, half the ICU would be filled by them because they would have lung injury. So that's really scaremongering. Who would want to go into surgery to do this knowing that you're going to have a high risk of lung injury?
[36:39] 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. Because patients do better when the capsule is removed — from a BII point of view, but also from a contracture point of view. A lot of patients will say, I feel like I can't get my breath in. And the mechanics of movement of your ribs is such that they have to open up when you breathe. When you have capsular contracture with the capsule overlying your intercostal muscles and ribs, it restricts you like a corset. And so unless you remove that, your ribs can expand and your lung can expand, and then you get that breath in. A lot of people the next day say, oh, I can breathe again. You don't have the same level of release of that restriction if you leave the capsule overlying the ribs and the intercostal muscles. So it has two benefits.
[37:49] But we've been doing this for quite some time. We're now about 200 patients on. No chest injury, no lung injury, because you just need to do it properly. And if you're not specializing in this, if you just want to 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 doing the work.

[38:13] Dr. Linda Bluestein: And I'm thinking, from being in the operating room for a couple of decades, that it's pretty amazing if patients are actually 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 there must be quite substantial improvement, because they obviously also have inflammation immediately afterwards from the surgery. So that's fantastic that you're seeing some improvement that quickly.

[38:44] Dr. Eva Nagy: But we also see improvement in the BII symptoms. Remember that the mast cells are not being activated and triggered anymore, so they're no longer releasing histamine. When I see patients the next day on the ward, they're breathing better, their eyes are whiter. A lot of people have injected red eyes — that's also very histamine related, and that settles. And the brain fog releases in many patients quite quickly.

[39:14] Dr. Linda Bluestein: So what should people be asking their surgeon specifically if they're thinking, I'm concerned or wondering if this might be something I should pursue? 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?

[39:33] Dr. Eva Nagy: So if they're having symptoms that they can't diagnose — they've looked through everything, they've seen all the specialists, no one can pinpoint anything, it's outside the square, they've had all blood tests and imaging and nothing is showing up — that's when they should start to think about BII. The questionnaire that has been formulated is actually for Lyme disease, because a lot of the symptoms overlap. So I use that one. 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. But things like really significant fatigue, not sleeping well, digestive disorders, palpitations, difficulty breathing, shortness of breath — it goes through over 250 symptoms. So the more you tick, the more likelihood that something is up.
[40:35] Now, if you think that you want them out, find a surgeon who will guarantee that you will have all the capsule removed, ideally en bloc, with photos — photographic evidence of the intact capsule over the implant front and back — because sometimes they give you the photo of the front and then you turn it over and there's a big bare piece missing, and that's the capsule remaining on the chest wall. Find someone who's not afraid of it and will guarantee it, because a lot of them will say, I'll do my best, I'm on your side, everything 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 you weren't going to be able to do it, so 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. And that's much more extensive surgery and much, much more difficult because the planes are all disrupted.
[41:45] So confidence in your surgeon is really important, but evidence is also important. The capsule needs to be sent off for testing — yeast, mold, bacteria. 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, by staining with CD117. You will not see mast cells with a normal H&E stain. That's the usual one we do to show inflammation and different cells. It will not pick up mast cells — they just blend in and look like other white cells. So you need to have a CD117 stain, which stains them browny-black. And then you can see where there's an increase in number, which is a good indicator that mast cells played a role in your illness.

[42:43] Dr. Linda Bluestein: And I know for GI tissue, we don't know for sure what's the quote-unquote normal number. You look for the shape of the mast cells and whether there's clumping and that kind of thing. Do you have thoughts as to what would be a more normal number of mast cells versus an abnormal number?

[43:01] Dr. Eva Nagy: So we say anything over 20 per high-power field, averaged over 10 or the highest of 10, is considered to be consistent with mast cell activation of the gut. And we haven't had many patients — we just started doing this — but of the approximately 10 cases we've had, every single one had raised mast cells. And so they were told when they looked at the H&E, everything's fine. No inflammation, no signs of ulceration, no Crohn's, no ulcerative colitis. But when they stained with CD117, they were high. The highest I've had so far — and this patient couldn't eat properly, she was stuck on just a few foods — was 73. Well above 20.
[43:54] And so unless you target MCAS medication towards the gut — Cromolyn is a good one, sodium Cromolyn, just as a mast cell stabilizer — it's very hard to get on top of things. So when we do the operation, we want to maximize the surgical approach, but there are also some extra things we have to do for a number of patients to target the mast cells that are still hyperactive 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.
You are beating a dead horse if you're trying to give many different MCAS-type medications while your immune system is completely overwhelmed by having implants in there.

[44:43] Dr. Linda Bluestein: Right. That makes perfectly good sense — if the offending foreign body is still in, it would not be easy by any means to resolve the symptoms. And I prescribe chromolyn sodium a lot as well for gastrointestinal symptoms and topically in a variety of different ways. So if people have already had a partial capsulectomy and they do have some remaining symptoms and you do an en bloc resection, what are the statistics there in terms of percent improvement?

[45:16] Dr. Eva Nagy: So when we go back in, that's not called en bloc anymore — that's going in to remove the residual. And if they had no improvement, we're seeing up to 60 to 70% improvement in their residual symptoms. Those who had, say, 50% improvement, we might see an extra 20%. But it's the things that really matter, such as energy and brain fog — the things that are really critical to everyday functioning.
[45:45] We do see improvement, but the problem is that when the capsule was previously breached, you've likely released silicone and there's still silicone within the breast tissue. And so that may be the reason why they're not getting to the same level as people who did it the correct way to begin with. They need a lot more support in terms of their MCAS because, you know, you've breached the area where it was contained originally and now it's sort of spread.
[46:23] The interesting thing is that when we have patients who have had en bloc surgery but we know they have silicone in their lymph nodes, they still tend to get better — which is counterintuitive, because you'd think silicone in the lymph nodes would continue to cause problems. But when it's in your breast tissue, or when it's localized to the breast or even the lymphatics, it seems to be aggravating. When it goes to the lymph nodes, you can still have improvement despite not removing the lymph nodes. So Dr. Feng illustrated that she used to take out lymph nodes that had silicone within them.
[46:59] And that causes a lot of morbidity. Cancer patients who have their lymph nodes removed as part of their cancer treatment can get lymphoedema, cording, problems with shoulder movement, chronic pain. And so you offset the benefit with a lot more morbidity. So then we decided, why don't we just leave the lymph nodes in and see what happens? And actually patients did get better from their BII symptoms regardless.
[47:30] I've got a patient who had a massive rupture — not sure how the original surgery went, to be honest — and she's got lymph nodes full of silicone in her axilla, up to her neck, and in the internal mammary chain behind the breastbone. And she's really, really well. She's had a baby, her first child about two years ago, and continues to do well. So there's something in the microenvironment of the lymph nodes that is somewhat different to when we have silicone within the breast tissue or the lymphatics. It's quite interesting.

[48:07] Dr. Linda Bluestein: Yeah, that is interesting. Could that be a toxic load kind of situation — where if you removed by far the bulk of it, even though there was some silicone in the lymph nodes, you've reduced the toxic burden significantly enough that they improve?

[48:24] Dr. Eva Nagy: Potentially, but I think maybe it's also about inflammation. Even though the silicone 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 it's purely about burden of disease, because this lady has a lot of silicone in a lot of her lymph nodes, and she still functions very well.

[48:47] Dr. Linda Bluestein: Yeah, interesting. One of the listeners wanted to know if you recommend replacing breast implants after a certain number of years.

[48:56] Dr. Eva Nagy: Yes, I do. We've seen gel leak without a rupture as early as two years after insertion. That's not to say you should be changing them every two years, but we know they're not lifelong devices. And the companies that make them say, this is cohesive now and it's double-layered or we have new technology, it's fine. You can leave it in there unless you have a problem.
[49:23] Now, what kind of problem are you talking about? If you have a rupture, that's a big issue. But even for my cancer patients, I usually start introducing the idea at around five years — it's a small operation, takes about 15 minutes, I'll take out your old implants and just put in a fresh one. Very different from the cosmetic world, I'm sure. But we have to be mindful that these things can gel leak very early — two, three, four, five years after insertion. And we don't know the long-term consequences of that either.
[49:56] The standard used to be every 10 years. I think that should still stay. You shouldn't be leaving them in indefinitely, because they will degrade over time. A lot of people say, this is an implant — if I sit it on the table and come back in 10 years, it's going to look exactly the same. And that may be true, but the environment is different. When it's inside you, your immune system is actively breaking it down. And whilst it's not able to do so completely, you do have weakening and degradation of that casing. So I usually start introducing the idea at five years for my cancer patients, and certainly at 10 years.

[50:42] Dr. Linda Bluestein: And in the cosmetic world, do you know what the recommendation is there?

[50:49] Dr. Eva Nagy: Well, from what I'm hearing from patients, the message is don't do anything unless there's a rupture or there's a problem.

[50:58] Dr. Linda Bluestein: That's what they're being told. Yeah.

Dr. Eva Nagy: Because they're lifelong devices, supposedly.

[50:58] Dr. Linda Bluestein: That's what they're telling them. Yeah.

[51:01] Dr. Eva Nagy: And I think that's quite absurd. You should be looking at at least every 10 years.
[51:07] But if you have symptoms of BII, I don't think you should be putting in a new set either, because you've already primed yourself. If you're not really dependent on your implants and you have significant BII symptoms and it is a diagnosis of exclusion — you've excluded everything else and you're still feeling rubbish — the answer is not to put them back in. Find someone who will take them out properly. Fix your muscle if the implant was under the muscle, because that's exceptionally important for function and for appearance. And do some level of reconstruction. Yes, you'll be petite, but what you don't want is wrinkling of the skin, nipple inversion, essentially cavitating. You can avoid that. You can be healthy and look normal and just be petite. There's nothing wrong with being petite if you have symptoms.

[52:11] Dr. Linda Bluestein: And reconstruction is possible then? I know it's going to 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?

[52:28] Dr. Eva Nagy: So in Australia, we have very strict criteria. 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. Then they say, yes, it's a legitimate medical need. However, if you don't meet that criteria, that part of the operation is considered cosmetic and totally out of pocket. But that doesn't mean the remainder of the operation is. The explant, the capsulectomy, the muscle repair — the private health insurance and the hospital, the majority is covered. It's just that, for example, the cosmetic portion of the time allocated to the patient may not be. I'm not quite sure of American standards, but it really should be part of it.
[53:22] It's very difficult to come from someone who has a very busty look to being very petite. But the petite is not the problem — it's the flattening, it's the nipple ptosis, the wrinkling of the skin. Because remember, when you were an A cup or B cup when you put them in and you've expanded to C, D, double D, E, you've done it instantaneously. You haven't given your skin time to stretch. And so when you take them out, tissue turgor is often a problem. You get lots of wrinkling. And when women are young, or even if they're older, it just doesn't gel with their psyche when they look at the befores and afters. It's very confronting. So you try to minimize that by doing a lift — you tighten the skin, you elevate the nipple to a high position, and that gives perkiness, roundedness, and smoothness of the skin without the adverse effects of having the stretching.
[54:29] Now we have to be realistic. A lot of our patients do have significant body dysmorphia and they expect perfection. But you're dealing with tissue that is no longer virgin tissue. When you put your implants in, it was virgin tissue — it's been stretched and somewhat altered by the fact that you had implants. And so we're trying to work with the tissue that we have. We have to be realistic about what we can do. But what we don't want is for you to look abnormal in front of the mirror.

[55:06] Dr. Linda Bluestein: 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 — you had some great images that you showed. Maybe we can put some of those on the YouTube video so people can actually see what that looks like after the reconstruction. Because I think that's such an important thing to talk to the surgeon about so that you can have a good outcome.

[55:32] Dr. Eva Nagy: Yeah. And like I said, it cannot be perfect.

[55:35] Dr. Linda Bluestein: Right.

[55:35] Dr. Eva Nagy: We try our very best to minimize the negative effect of the implant that was there, but you shouldn't walk away feeling that you have been deformed.

[55:49] Dr. Linda Bluestein: Yeah.

[55:49] Dr. Eva Nagy: It's just trying to maintain that normality.

[55:53] Dr. Linda Bluestein: Okay. Well, this has been such a wonderful conversation and I could ask you so many more questions, but I want to be respectful of your time. And we always end every episode with a hypermobility hack. So do you have a hack that you could share with us?

[56:08] Dr. Eva Nagy: Okay. So this hack is not really a true hack, but a lot of people who come into my rooms — if you did the Beighton score, you'd probably say they're not hypermobile. But what has happened is — and I'm preaching to the choir here because you know this — your muscles try to compensate for the looseness of the joints and become very, very tight. So if I say, okay, bend down and touch 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 say, if any patient is thinking, well, I used to be hypermobile but now I'm not, go back and think about what were you like as a child. Did you amuse your friends by contorting your body into strange shapes? Could you do the splits as a teenager or a child? Did your knee dislocate? Did your shoulder dislocate when you weren't doing anything particularly traumatic? Do you have velvety skin? Is it soft? Just because you don't meet the Beighton score doesn't necessarily mean you don't have hypermobility. It's just that your body has changed over time to compensate.
[57:29] And so working with a coach, someone who specializes in the field, to strengthen your muscles and support your joints — the stability work — I think you may agree that that's the best approach to try to remedy the situation, even if you don't think you have the hyperflexibility and mobility when actually you do and your body has compensated in an adverse way.

[57:56] Dr. Linda Bluestein: Yeah. And we all know that joint mobility goes down with age. So there's even just normal aging and injuries and surgeries. And it is very frustrating because the Beighton score only looks at a small number of joints, so it has plenty of flaws. We talk about that a lot. So where can people learn more about your amazing work?

[58:18] Dr. Eva Nagy: We have a Facebook page where we talk about BII. We've got our website, and I've been working with Dr. Tanya Dempsey and we've done a couple of podcasts. But I think over time, now that we're getting more and more numbers, we're going to be publishing more. The next one — so the pilot study that we had, we had 15 in each group, and we did show the mast cells were very significantly different and doing the en bloc caused a really good resolution in many symptoms. And unfortunately it was dismissed by a journalist who didn't understand the concept of a pilot study and said the numbers were too small. So now we're going to be publishing with 150-plus patients, and it shows exactly the same thing.
[59:05] Where you do the surgery, people get better from BII. It's a legitimate illness. The mast cells are the source, probably the foundation of what the issue is — triggering of the mast cells, activation of histamine and the rest of your immune system to cause these symptoms. And then ultimately what we want to do is have more people and publish on the bowel study to show that the mast cells are increased in number there. And the third publication will be that after doing 150 to 200 patients, there is no chest wall injury, no lung injury, no heart injury. It is safe in the right hands, and I think patients should try to push for this for their own benefit. And unfortunately, patients have to be their own advocate sometimes.

[59:51] Dr. Linda Bluestein: Mm-hmm.

[59:53] Dr. Eva Nagy: Until we have a consensus that this is the right way to do things.

[59:58] Dr. Linda Bluestein: And can you take patients from outside of Australia?

[1:00:01] Dr. Eva Nagy: Yes. We have a lot of interstate patients within Australia, but we've also had a few from America. If money is an issue, Dr. Feng and Dr. Khan are big believers in doing en bloc locally and within the US. But for those who travel, we have a corporate rate with apartments nearby, very close to the hospital. So we can work with patients who want to come. And yes, we have had that.

[1:00:30] Dr. Linda Bluestein: Well, thank you so much for taking the time to chat with me today. I know that you're extremely busy and this was just such a great conversation. I think the listeners are really going to enjoy 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. Thank you for sharing it.

[1:00:53] Dr. Eva Nagy: I think women know their bodies. They do. And unfortunately, if you're being gaslit by one person, go see someone else, because there are people out there who believe you. My mother told me — she's a doctor herself — she said, Eva, if you are too stupid not to know that the patient is telling the truth, that's on you. Figure out what's wrong with your patients. The patients are always right. And don't be the one who says it's just in their heads. And I've taken that on board ever since I was 18 when I started my training. Just legitimize and understand your patients. The vast majority of them do have an issue and we need to get to the source of it and stop gaslighting and blaming your patients for having a mental illness when they don't.

[1:01:40] Dr. Linda Bluestein: Absolutely. Wonderful words of wisdom from your mother.

[1:01:45] Dr. Eva Nagy: True, true.

[1:01:45] Dr. Linda Bluestein: Yeah. All right. Well, thank you again. I really appreciate it.

[1:01:47] Dr. Eva Nagy: Thank you so much.

[1:02:50] Dr. Linda Bluestein: That was such a great conversation with Dr. Nagy. Mast cell activation syndrome affects so 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. This really helps raise awareness about these complex conditions.
[1:03:15] If you'd like to dig deeper, you can meet with me one-on-one. Check out the available options on the services page of my website at hypermobilitymd.com. You can also find me, Dr. Linda Bluestein, on Instagram, Facebook, TikTok, Twitter, and LinkedIn at hypermobilitymd. You can find Human Content — my producing team — at Human Content Pods on TikTok and Instagram. You can also find full video episodes up every week on YouTube at Bendy Bodies Podcast.
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