Episode Transcript
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Jill Brook: Hello, Mast Cell Patients and lovely people who care about Mast Cell Patients. I'm Jill Brook, and this is Mast Cell Matters, where we go deep on all things related to Mast Cell Activation Syndrome, or MCAS, with the help of our brilliant guest host, Dr. Tania Dempsey, Mast Cell Expert, expert in many complex chronic illnesses, physician, researcher, educator, and now we know, bodybuilder too.
Dr. Dempsey, thank you so much for hosting. Who is our guest today?
Dr. Tania Dempsey: Thanks so much, Jill. I am honored to have Dr. Eva Nagy here today with us. She is an extraordinary surgeon with an interest in Mast Cell Activation Syndrome and Breast Implant Illness. I'll give you a little background. She's an experienced General Surgeon. with an interest in breast surgery.
She obtained her medical degree from the University of Melbourne and then worked as a junior doctor in Melbourne and Singapore. She began formal training in [00:01:00] general surgery in Sydney and completed rotations in various hospitals. And then she embarked on subspecialty training in breast surgery.
So she is, she is she has advanced surgical training in very specific techniques in breast conserving surgery. She has an interest in breast conserving surgery for patients with mastectomies, where mastectomies are not required and the use of the patient's tissue flaps for reconstruction.
And she really is now, embarking on a journey to really truly understand breast implant illness and the role of, of mast cells and mast cell activation syndrome. So, Dr. Nagy, thank you for joining us again.
Dr. Eva Nagy: Thank you for having me. Good morning. Good evening. Hello. It's so wonderful to be back again.
Jill Brook: I just want to make sure that listeners know that you are not hearing Episode 184 again. Dr. Nagy was here for Episode 184 and told us some amazing information, [00:02:00] but now she's done some more amazing work, and she's back to talk to us more. So this is not a repeat. You're not, you're not re listening to an old episode.
We have new things today, and they're important.
Dr. Tania Dempsey: They're so important. So we, we want to talk about your new publication. This is such an important piece of work, and I want to, I want to dive in. I want to help the listeners understand why it's important. Tell us a little bit about what, well, the title, we'll go over the title of it, but also what, you know, what sort of inspired you to, to publish, and what, what you did, for the publication, what you found.
We'll, we'll, we'll dig right in. So, I think your publication was titled Breast Implant Illness May Be Rooted in Mast Cell Activation, a Case Controlled Retrospective Analysis.
Dr. Eva Nagy: That's right. So, do you remember the first postcard we were actually talking about how, like, it sort of dawned on me that maybe mast cell activation was all part of [00:03:00] breast implant illness. So, I actually went back and we had consecutive patients, so it wasn't as though I just picked at random. We had a look at 20 patients.
And I know this is a small number, but it's a pilot study. And I just wanted to see whether there was a possible link, or could we establish some sort of link, between those who have breast implant illness and what their mast cells are doing. So the groups were, the first group was a BII group, so these patients came in and they said, look I've got BII, I am feeling rotten, I'm on the verge of losing my job, I can't keep up, my marriage is suffering, I can't look after my kids, I need to be in bed virtually the whole day.
It's a very clear cut there's something wrong. So that was 15 patients. Then I had another five patients who said, no, I'm, I feel fine, there's nothing really wrong with me, I'm getting a bit older, [00:04:00] but you know, that comes with life and I just want my implants out. You know, I'm 50, I'm 60, whatever it is, I've had fun with them, but I want them gone now.
And then we had the control group, the second control group, which was just healthy breast tissue. So patients who had a strong family history or genetic mutation. It increases the risk of breast cancer. So they opted to have prophylactic mastectomies to reduce the likelihood that they get cancer in the future. So when we had a look at these patients, they all fill out BII questionnaire which comprises actually probably at least 100 symptoms, and they tick from mild, moderate to severe. And the way that we added it up is that if they ticked mild, they scored 1. If they ticked severe, they scored 2 times, and if they scored severe, it's 3 times. And so we added up those numbers, [00:05:00] and we had a look at them before explant surgery, within two weeks, where I see them again for review, three months, six months, and we took it out to nine months, and actually there's a few patients now who are out to two years. So when we saw those patients, the average score pre op for the BII group was 152, and within two weeks it dropped to 35. So that was a 77 percent reduction of their symptoms, even though they may be a little bit sore, or they're not sleeping particularly well, or they have a bit of nausea from medication, whatever the case may be, but they had a 77 percent reduction in their generalized systemic symptoms.
Yeah, when you took it out to nine months it was 85 percent reduction. So there must be some sort of immune response here that is actually very [00:06:00] fast. And even though we took the BII questionnaire out to two weeks, anecdotally, when you see them the next morning, within 12 hours of their surgery, some of the symptoms are actually improving already. So women who have injected eyes, it's very common, very red, they look like they've been crying, but it's just very irritated and weeping rashes. By 12 hours the eyes are crystal clear, their sclera were white, and I've taken photos after photos and these patients have been seeing ophthalmologists and optometrists, drip this, drip that, drop that, you know, nothing has worked. And so within hours it's gotten better. So then we had, that's the first group, so they, yep, definitely had BII. Then we had a look at the second group. What is actually happening with these patients who say, no, I'm fine, but I want them out. Their [00:07:00] score was around 50 pre explant, and then around 10 by nine months. So they too had a 70 percent reduction in their symptoms in two weeks, and then 77 percent over nine months.
Jill Brook: So, I've seen some of your photos, and they are amazing! The people who have a red face right before surgery, and a clear face right after, red feet before, inflamed, puffy, and they look normal after. People who even have like, what looks like leg, I don't know if the word is cellulitis, but like a weird texture to their leg skin.
And then right afterwards, it's like a smooth, normal, lean leg. And I'm just wondering, that's what you're talking about, right? Stuff like that, like, like your thighs can look different after getting your breast implants out.
I just want to make sure people understand that.
Dr. Eva Nagy: Yeah, definitely. And so I link that down to [00:08:00] inflammation. When you're very inflamed, you actually hold on to water. And a lot of people say, Oh, I've gained weight. A lot of that is actually water weight. And when they go through surgery, some people say, Oh, I've dropped three, four kilos within the first couple of weeks. So there's an acute response once you actually take out the implant and the capsule, which we're going to be talking about, that you have now relieved your immune system of what has been triggering it for so long. And when I see them in the morning, when I walk in, I can picture the immune system going, Ahhhh.
Ah, now I can rest a bit. Because your immune system is constantly activated 24 7, and so when people go to sleep, I say to them, you're existing. You're not really living, you're existing to get through the end of the day so you can flop into bed and try and go to sleep, but you [00:09:00] wake up in the morning feeling pretty much the same as you did before you went to bed.
And that's because your body has run a marathon during the night, still trying to get rid of that foreign material. And it's like having the flu. You know when you go to sleep with the flu and you feel up, you're constantly waking at night and you're not quite right and you wake up in the morning and you think, Oh my gosh, I'm just the same as I was before.
It's because your body's trying to get rid of the virus. This is no different in that it's foreign to you, yeah? So your immune system is being activated and it's constantly on the go. So finally when your, your body doesn't sense that it's there anymore and go, Oh, I don't need to be activated anymore. I don't need to release all that histamine.
And all the things that are in the granulation, the granules of the mast cells, and it just calms down. So a lot of the things that they actually experience within 12 hours is because of that reason. I don't, I don't want people to feel demoralized though, if [00:10:00] they wake up after the surgery and they don't feel 100%.
Okay, it doesn't happen with everyone, and sometimes it takes a while for the homeostasis and the recalibration of your system to occur. And it can take weeks, months for you to regain your health because you have to understand the longer you've been sick, the longer it's going to take to come out of it.
And we do have a number of patients who have lingering problems and that's when you start to think of, okay, do you have other issues which are sort of mast cell related? Do you have mold allergy? Do you have zinc and iodine, um, deficiencies, fructose intolerance, there's, the more that I see them, the more I go, okay you're gonna probably have, probably have fructose intolerance, you probably have mold in your house, you sound like you've got lots of deficiencies that we need to address.
So the surgery is not the be all and [00:11:00] end all in many patients. It will give you in about, you know, 70%, 75%, 80 percent improvement, but the lingering issues here and there may still need to be addressed. Um, so it's, we always talk about a journey, it's a marathon and not a sprint, but until you get your implants out and have the capsules removed, it's very difficult to calm down your immune system and I don't think there's a way that we can do that
with medicine in that we can give antihistamines and mast cell stabilizers and avoid other triggers, which may help a bit, but I think until we remove the implants, your immune system is constantly on guard, but it's a journey.
Dr. Tania Dempsey: Yeah, I think that's a good point. And I, I want to, I want to focus on this, this one part that I, I, you wrote about in the paper. And I think it's important because I, I talked to my patients about this too, you know, [00:12:00] and, and not just patients, but also our colleagues may not really appreciate this, right?
When you're talking about a capsulectomy, right? The reason you're taking out the entire capsule is because of the, of the silicone that can leach into the surrounding tissue, right? I want to, I want to talk about the fact that what you're finding is that many of these patients have intact, visibly intact implants.
They may even have saline inside, correct? With a silicone outside, it looks normal. It's not ruptured or leaking. And yet, it is. So, what is happening? Can we talk a little bit about what is happening with that implant and why taking everything out is so important?
Dr. Eva Nagy: So when we did our audit of our patients, we found that 70 percent of them who have histological analysis and positive silicon in the capsules [00:13:00] had normal imaging. Plum, normal, not a lot of peri implant fluid, the implant looks intact, and certainly when you operate on these people, the, what, you actually analyze the implant, you squeeze it, there's no signs of rupture. So what I call that is a gel bleed. And I liken it to saying, okay, you've got a teabag, the teabag looks normal, but you put the teabag in water and you get this leaching of the tea. So I think that the casing itself has micropores and allows over time that gel to seep out. And not only do we find that the silicon is in the capsule on microscopy, we see an immune response, acute and chronic inflammation, we see giant cells, we see granulomas, all of these things are your body acting to get rid [00:14:00] of the implant. Now also, when there's fluid, I collect the fluid as well and I send it off individually. And in some, you also have bits of silicon floating around in that fluid. So why is it important to take it out? Number one, you don't want to break the capsule and have that potential silicon liquid leaking out into your operative field and contaminating your operation field. And number two, if you leave the capsule behind, you are leaving, in my opinion, pathological tissue behind, which continues to activate your immune system. And you don't need a lot of silicon to activate it, it's already primed. So a lot of people say, well, you know, it's just, you know, a little flecks of silicon here and there.
Yeah, but you've been primed. It's like when someone is allergic to peanuts. You know, they have it the first time, they're primed, and then they have it the second time, they have a huge [00:15:00] anaphylactic reaction. And you don't necessarily have to have the peanut again, you can have it in close vicinity. You know, you can sort of, if, who was that, there was a person who wasn't who was so allergic to peanuts that they didn't even give peanuts to anyone on the plane, because they were so afraid they were going to have an anaphylactic reaction. So you can be so primed and your immune system so primed that you just need a few little bits and pieces here and there in order to continue your, you being unwell. So if I just go back to the groups, the BII group had BII, but interestingly those patients who said, Oh, you know, I'm just going through menopause and I've got a bit of a rash and my hair's falling out, I've gained weight and all these things, and they just kind of brush it off because it's not particularly very severe.
And they get on with their life, they actually have a subclinical BII. Evidenced by the fact that they too got [00:16:00] better once the implant was removed. And it wasn't the symptom of okay, I can't breathe, which is usually a mechanical thing, because the capsule forms like a corset around your chest, and your ribs can't expand to get that last breath in.
It wasn't pain associated with it. It was actually systemic symptoms. I'm no longer fatigued. I'm actually so clear in my head. I have so much energy. My rash is gone. You know, in three, six months, my hair's growing back, right? So they have a subclinical version.
So those two groups, we can say, based on that study, and based on the audit of my patients, we're over 100 and probably 50 now, within two, three years 90 percent, we've had 90 percent of women when they're coming with issues one way or another of the implants have some level of BII. Now a lot of people are sort of like, what 90 percent are you serious?
I'm just [00:17:00] like, well, that doesn't surprise me actually, because that's what our immune system is for. It is to identify through evolution, thousands of years of evolution, what is not us, get rid of it. Bacteria, yeast, mold, virus, get rid of it. Why is silicon any different? It's a foreign material and we can say that it's inert, but is it genuinely inert?
Not really. It's still a foreign material. And we do see reactions like this to a variable degree with clips and meshes and joints and you know. So, then I thought, okay, so we're now seeing that there's improvement in systemic symptoms, whether you identify as having BII or not. So then we said, well, let's have a look at the mast cell.
Because if it's related to mast cells, can we analyze the mast cells that are in the capsules? And this is not a routine stain that they do, you actually have to stain specifically with CD117. So my [00:18:00] kind pathologist, who's just amazing she's doing it for us, and we found, when we looked at different numbers of high power fields, so you look at 10 different spots on the capsule, and we took the average and the highest count.
In the BII group, the highest count was about 16. In the subclinical BII group who say, I don't have BII, it was 13. When you had a look at normal breast tissue, it was about six, and then publications for other papers, their numbers are usually a little bit lower. It's under two. So there's a really clear, beautiful graph that shows the more serious and significant your symptoms are, the higher your mast cells are.
So, this is really, really crucial because we now have established, or [00:19:00] demonstrated at least in the small numbers that we have with our pilot study, that you are having an immune reaction to the implants at the level of the capsule, which you've got to remember that scar tissue is living, breathing tissue.
It has blood supply, it has lymphatics, and you're seeing that mast cells are going there and trying to get rid of it. And so we've got a really nice picture of the mast cell count in someone who's got BII versus normal healthy tissue. And it's just full, it turns them brown, and it's just flecks of mast cells everywhere versus normal healthy tissue,
because you're going to find mouse cells in all tissues, and you get one, two, here and there. So if you're leaving pathological tissue behind with inflammation and signs of activation and silicon that is continuing to activate, you're potentially meaning that these [00:20:00] patients will continue to remain unwell to a varying degree. So really important to remove everything. Now we have patients, interestingly enough, I, I don't know what's happening with the immune system, but we have patients who have had implants ruptured partial capsulectomies, or no capsulectomies and the implants removed. And because that scar tissue is living tissue, the lymphatics take up the particles of silicon and it goes to the lymph nodes. And as we spoke about before, this silicon can go to other parts of the body. That's been demonstrated with another study, I think it was in Sweden, where they did an autopsy and they found silicon in brain, spinal cord, kidney, colon, so it travels. However, in the past, we used to remove lymph nodes like that, but we found that that's quite morbid. You can get lymphedema, you can get cording, pain in the arm, [00:21:00] and so we said, well what would happen if we actually leave those alone? And I think what happens is your body is able to lock it away in your lymph node to a certain degree and people still get better. So we leave lymph nodes like that alone, unless they're symptomatic, unless you can feel it and it's causing pain and it's annoying, we can take it out.
But what we don't want to do is to perform an operation that doesn't necessarily gain you a lot of benefit, but causes a lot of harm. So, even though we see silicon in lymph nodes, in my mind, it's locking it away somehow and your immune system is not as activated as when the implant and the inflammation is in your breast. And we've had a number of patients now, one particularly, she's got lymph nodes that have silicon in her armpit heading into her neck, behind her breastbone and she's doing really, really well and she gave birth a couple of months ago to a healthy baby boy. So, [00:22:00] other patients who I had partial capsulectomies, no capsulectomies, tried to get pregnant, couldn't. Still felt unwell. They came to me, we call it a sort of an excavation, trying to find exactly what's going on and find remnant capsule. We take out the capsule, we fix the muscle which often is not done and give them reconstruction. And now we've had, at least half of them pregnant and delivering healthy babies.
So once your immune system calms down, your body says, okay, now I'm prepared and I can actually procreate, pass on my genes, if you want to talk in evolutionary terms, because your body doesn't want to undergo pregnancy when it's sick, to have a child that you cannot deliver safely, you don't have a healthy pregnancy and you can't raise.
So your body [00:23:00] will say, no, no, I'm not ready for that. I can't go through pregnancy. It has so much energy that goes into it when the host, as the mother, is not well. And your body knows through evolution, it goes, nah, nah, nah.
Dr. Tania Dempsey: I have a question, Dr. Nagy. So, if a young person who has not had children yet and is interested in having children comes to you and says, I I would like, well they're not going to come to you because I guess you're not a plastic surgeon, but let's say they, let's say they do go to a plastic surgeon and they want to look into getting implants.
And then, you know, how would you, let's say, let's pretend that you had the opportunity to talk to that patient. What do you say to young people who want to get implants? Because, because I, you know, I've talked to other surgeons who have said, well, I'm not against implants. I think some people are fine. So I'm not worried about it.
And I will deal with the patient, you know, [00:24:00] that's, that's, that has the BII, but you know, what percentage of all implant, you know, implants is going to result in that, right? So how do you counsel a young person about implants before they even put them in?
Dr. Eva Nagy: Okay, so the biggest key is why do they want it? What is lacking that they do not have enough confidence in their mind to equate larger breasts with more confidence? Because a lot of the times women will undergo implant surgery thinking that, oh it's going to fix my problems, I'm going to feel better, I'm going to look nicer in clothes, my confidence will be boosted, I will be in a relationship and there's rosy, the rosy outlook.
And a lot of the times that's not true. So you want to really identify what the key goal is. Secondly, I would ask them, do [00:25:00] you have any autoimmune diseases already? And that can be very benign if you're talking about autoimmune diseases like eczema, psoriasis. You know, you don't have to go into delving into Hashimoto's thyroiditis and rheumatoid arthritis, Sjogren's disease, lupus, you don't have to be that,
in that camp, you can have something simple like eczema, which is an autoimmune disease. Because if you do, you have a much higher chance of developing BII. And so, once you clarify, is this genuinely going to improve your life? Do you want to be a surgical patient for life? Because once you put them in, if you want to keep them, you're going to be having replacements, you're going to be having the capsule taken out here and there because many people get capsular contracture you can, especially if it's put under the muscle, it's not uncommon to get twinges and [00:26:00] pain because now you're stretching the muscle.
Our muscles are very heavily innervated, so a lot of the breast pain that people feel is actually derived not from the breast itself, but referred pain from the chest wall. So there's a lot of discussion that has to go into it, to really identify and acknowledge that this is not a simple little removal of a mole type of surgery.
Although many people do it as a day surgery, this is moderate to high level of surgery. Do you really want that? So say for example, they say, yes, I don't have any problems with my health. I feel fine. I just really want them. It's for corrective surgery. You know, one breast hasn't developed versus the other.
Whatever, whatever they want to say, I say okay, well let's go through the complete consent process which should cover all of [00:27:00] the possible side effects of implants and BII being one of them. Because I, you know, when you have a consult with a surgeon, many a time I hear, oh the consult was about 45 minutes, but the consent process is only about 2, you know, you can't cover all the possible issues that implants have in 2 minutes. But if they do undergo implant surgery, I would I would say look, if you have problems in the future, if you have symptoms that you can't explain, and you've gone to a reputable doctor and you've, what we call a diagnosis of exclusion, think about your implants, because they may be the source of all your problems and to have the operation done properly. My, my issue comes with, we are putting implants into women at a young age and they're still developing. We've developed throughout our lives, but certainly [00:28:00] even up to the age of 30, we're developing. We undergo pregnancy and breastfeeding. I'm actually looking into whether implants actually have a, you know, do we find silicon in breast milk?
We've been told for years and years that it's safe and we don't have any silicone in breast milk. I'm starting to question that, so there's a lot of issues here at play, and I don't think it's a simple thing that we did 15, 20 years ago when we didn't associate it with anything. It has to come with a lot of conversation, and sometimes body dysmorphia is a key factor, and if we have any inkling that it may be body dysmorphia, then to talk to a psychologist before you actually undergo [00:29:00] surgery, because these patients tend not to be happy even once the implants are put in, and now they've spent thousands of dollars and affected their health and reorganized their anatomy, because remember when it gets put underneath the muscle, you have to sever the connection of the muscle from your chest wall at the inferior portion to enable you to put the implant under. You've disrupted your anatomy. This is not a very simple thing and a lot of people don't understand that when they say under the muscle, when they say subpec, it actually means you're doing damage to your body, in my opinion. So really think about it carefully and have ongoing conversations. Now I'm not saying every single person that puts them in is going to get BII, but we don't have that magical test right now.
We don't have a blood test and as I've demonstrated to you already, we do MRIs, [00:30:00] ultrasounds, mammograms, they're not sensitive enough to pick up gel leaks. And you will have a 70 percent chance that you've got silicon in your capsule causing you problems. So I think it needs to be a deeper conversation.
Dr. Tania Dempsey: No, I appreciate, I appreciate your, your take on it. It's, it's something that I think, you know, I so appreciate how you look at it and I am disappointed that others in your position and other surgeons are just not are not counseling patients appropriately, I think, you know.
So, yeah, so, so thank you for that.
Jill Brook: And I would just say to any patient out there who's thinking, well, I could give it a try, my mast cell symptoms aren't too bad and it would be nice, and if it doesn't go well, I'll just find somebody like Dr. Nagy to take them out and it's not a big deal. But I would say to those people, go back and listen to episode 184 because you're going to see that there are not very many people in the world [00:31:00] like this amazing, beautiful, wise surgeon and
other doctors are not taking them out the way you take them out, and so chances are, if you go to just anybody, you cannot be sure that you have undone it, right?
Dr. Eva Nagy: Oh for sure, I would say anyone with mast cell problems, if you genuinely know you have mast cell problems, please do not get implants. That's a very binary, you know, there's no grey there. It's a yes and a no, it's a no. If I know you've got mast cells, I would very, very heavily say please do not do this to yourself because it is going to go bad.
I do not seeing, see it getting better. I don't see it as status quo. I see it getting really bad. And to put implants in, half an hour, 45 minutes, that's easily done. Taking them out is a huge operation. You're out of action for at least 6 weeks. You're not putting your arms up above nipple height for [00:32:00] six weeks.
You're not cooking, cleaning, laundry, vacuuming, driving for six weeks. Because you have to wait until your muscle unites back onto your chest wall. The operation is six to ten hours sometimes, if you have very stuck, certain, certain brands, which has actually been taken off the market now, the Elegan ones, they, they stick like glue, superglue with Velcro. If you're going to take that off the chest wall, which you have to, you have to take the time. You need muscle repair. You need to be reconstructed to make you look normal again. Scars are there. You have to have scars in order to do this, which fade over time. But if you can avoid all of that, wouldn't it be better? Yeah, definitely. If you have already known mast cell problems, please do not get foreign material put into you. Yeah, that's, that's a big red flag that one. So in Australia lately we've had issues with what we call [00:33:00] cosmetic surgeons. I don't know if you have them in, in U. S. where they're not actually plastic trained. They're GPs who do extra courses and then they start putting implants in and we've had some, serious problems with that. So the APRA has clamped down and said you're not really allowed to do this type of surgery unless you have plastic training, you know, which goes for decades. And now to, to really identify patients who may have body dysmorphia or psychological problems in relation to how they feel about their body, they have put out a questionnaire and they've, they're asking patients, do you think about your body,
often? Are you not happy with your body often? Is it causing you, you know, disabled by the fact that you're constantly thinking about the fact that you're not attractive because of your breasts? And if you tick yes boxes often enough, you must see a psychologist before putting them in. They're saying you need to have two consultations with the [00:34:00] surgeon.
You cannot sign the consent form on the first time you see the, the, the surgeon. So they're really clamping down now to make sure that women really think it through before having implants and certainly picking up those patients who may have body dysmorphia issues who may benefit from having psychological input to see if they can avoid having implants.
So, I'm, I'm very happy that that's happening because I think we're just putting them in there so readily and so easily when women are still young and impressionable. So, I think we need to take it much more seriously and, and I think these questionnaires are a really good idea. Now, I do want to ask you, Tania, so, a patient of mine, she's done really, really well, ex plant, post ex plant. She had some different issues, though, that we had to address, and it was identified that she's got thoracic outlet [00:35:00] obstruction, and Nutcracker Syndrome, which is compression of your vein going to your kidney as it passes under the superior mesenteric artery and she's got compression of that, which may be causing her pelvic congestion syndrome.
So, for these patients who have known effects against foreign material in their body and she's doing so well, nearly all of her symptoms are gone now. If she needed bypass surgery, and the bypass surgery comes with a graft of this synthetic, or patients who need stenting, what do we do with these patients?
Because once you put a stent in, that's not coming out.
Dr. Tania Dempsey: Correct.
Jill Brook: Thanks talking about this. There's so many of us wondering what you think.
Dr. Tania Dempsey: Well, my question about this patient, because you said that after the explant, she's doing really well, but she's identified these other syndromes. Is she symptomatic, very symptomatic from those syndromes?
Dr. Eva Nagy: Yeah, which is the reason [00:36:00] why it was investigated with one of our lovely integrative specialists. I'm going to call out a shout out to Mark Westaway because he's so lovely and he sees a
lot of my patients. He's exceptional and he's identified the thoracic outlet obstruction as well as the nutcracker.
And so, and he's doing a lot of myofascial work for her to see if he can help her symptoms. But for those patients who we can't improve with myofascial release and non surgical approaches, and she's demonstrated that she's had an issue with foreign material and she's doing so well, I wouldn't want to put anything into her.
If for those patients it doesn't work, what choices do they have?
Dr. Tania Dempsey: Yeah. So, no, this is obviously very, very complicated, right? And what I, what I find really interesting is that even though a patient like yours who reacted to the silicone in the, in the breast [00:37:00] implant. They may, she may not react to the material in the stent or in the, in the graft. And so that's the thing about mast cells is that they're quite fickle and they're not always very predictable.
And different material will react differently with, with different mast cells. I think there is something about silicone specifically that I think and I think the research is going to continue to show that it is just incredibly immune stimulating for, for lots of reasons. Some of the stent material, depending on what type of stent they use, may be less immunologically stimulating or equally immunologically stimulating.
Right? And sometimes we don't, we won't, we don't know. I'm concerned, I would be concerned about stents that are plastic material. In particular, because, because silicone is essentially a type of plastic. Right? [00:38:00] Although, although the industry, like, a lot of people want to believe that silicone is not a plastic.
Dr. Eva Nagy: What is it if it's not plastic?
Dr. Tania Dempsey: No, well, exactly. Like bending, it's doing all these things, right? People think, oh, no, it's not. Of course, it's plastic. Right? So,
so some stents are, are plastic. And so if, if we know that a patient reacted to plastic. In the silicone, I would be concerned about putting plastic into, into her.
But my understanding is that there are lots of, and I'm certainly not an expert here, but my understanding is that there are lots of, well, an expert in stents, so that is, you know, there are lots of different stents available, different types of materials. So you know, discussing, you know, finding the surgeon who would potentially be doing this, seeing what, what options, you know, you have, you have, she has, go through the materials of the stents and determine, you know, is there a, maybe a better, again, you can't predict 100%, but if the material may be let's say not plastic and maybe you know, you know, [00:39:00] something that maybe has less reactivity, maybe you have a better chance, but, but it is a risk, right?
Because you can't. predict ahead of time. There are certain materials that you can do like patch testing on. There are certain types of materials that, that certain dermatologists who have an interest in this will find a way to patch test some of the metals, some of the other things to see if there is a reactivity.
So that may be able to be done. There are some blood, blood tests, blood work that I think is, is not completely validated, in my opinion. I think there's still a lot of work that needs to be done in this, in this realm, but, but they're not bad. And they can pick up sensitivities to various we'll call them quote unquote implant materials.
So, so different things that could be, you know, patients need dental implants, if they need joint implants, if they need other things, material put into the body. [00:40:00] Some of these tests can measure the immune response to those materials. It's not an absolute, it sometimes doesn't pick up the reactivity.
They're not necessarily measuring the mast cell response to those materials, right? They're measuring an immune response and really, actually, I've talked to a number of the lab directors of these labs to really understand the methodology and so it's not clear that it's really, in a sense comparing apples to apples.
So, I don't know if we can say 100%, well, if they react to this material on this test, that it absolutely means that their mast cells will react or vice versa. They're negative and then their mast cells won't react, right? We don't, we don't know, but those are some things that I would explore with the patient, right?
If there's, if we, if they have to do something, I would like to see if there are ways that we can choose the best material, minimize the effects as much as possible [00:41:00] and stabilize the patient the best we can. So, I would think also that if the patient is recovered from explant surgery and their mast cells are generally going to be better, right?
And you said a lot of her, a lot of her symptoms are better, but her mast cells are revved up from the Nutcracker Syndrome or the Thoracic Outlet Syndrome. We know that that's going to, these are anatomical problems that are going to set off mast cells. So, she's not going to get better until you Take care of the anatomical problem so that ultimately all her mast cells will relax.
But I would think that because you've taken away, you know, I always like to use the analogy of an onion. You take a layer, a few layers away with the explant surgery. Hopefully her system is a little bit better and maybe better able to withstand a foreign material that may be necessary. It's a, it's a, it's a tough situation.
Dr. Eva Nagy: It is because you know, [00:42:00] when, if you put in an implant, yes, you can still remove, remove it intact if it hasn't ruptured yet. But then, you know, so the severity of your outlook changes very much if you put in a stent which can't be removed. It's, it's a much more severe state because like, what do you do with this situation?
You can't calm the immune system down. And I don't know if Australia has the testing facilities or whether we would have to send it overseas in order to do that, but it's certainly worthwhile having a think about it because if she's very symptomatic, so she's got 100 percent occlusion when she puts her arm out 180 degrees with a constant tingling in her, in her fingers and arms.
So, we're still working with her, but it's very interesting to see that you, this is what I'm talking about. So,
if you have lingering issues with your health, [00:43:00] it doesn't necessarily mean that the, the explant surgery was not successful. You just have to find the different symptoms and correlate it with the diagnosis.
So again, it's a marathon and not a sprint. But to be fair, if you're getting rid of 75 to 80 percent of your symptoms within nine months, that's a huge benefit to you. Yeah, and the residual, I mean, I had a look at some of the residual symptoms. We're talking about cellulitis or you know, a little bit of darkened circles underneath the eyes or, you know, things that we probably have as we get a bit older.
But if there's, there's mold issues, that is a huge problem. I've got
a, out of 150 patients now, I think, we have about three or four, so everyone has gotten better. Yeah. That's to say the first.
Dr. Tania Dempsey: Wow.
Dr. Eva Nagy: Three or four of them have sort of stagnated and I think they have mold in their home, mold at their [00:44:00] work, they've got deficiencies that we're working on they have other reasons that they're actually quite unwell.
But, again, it doesn't mean that the surgery was not successful, it just means now your immune system can calm down, ignore that part, which is the silicon, and now we can concentrate on other parts. But, to be fair, three or four people out of 150, it's still obvious why we need to have to do the surgery properly.
Dr. Tania Dempsey: Yeah. Absolutely. And I, and I think, I mean, the way I think about it is, and I think you think the same, is that a lot of these patients probably have a predisposition on some level. That, that's what I think. At least in, at least in my patient population that I've seen with breast implant illness, Mast Cell Activation Syndrome from various things or mold illness or Lyme disease or whatever I'm treating, right?
Most of the time, there is an immune dysfunction already there and a lot of patients don't know. They may have, you know, they may have some sniffles, you know, and they think [00:45:00] it's, you know, they just have some allergies. They might have, you know, headaches, some migraines and, you know, they get some medications for that and they don't think it's a big deal.
They have Irritable Bowel Syndrome, you know, that they lived with all their life, but you know, but they're healthy, right? There, everyone has told them, every doctor they've been to has told them that they're healthy and they're fine. And then, you know, they wind up getting implants or they wind up getting exposed to mold, or they get exposed to both or have both, you know, or multiple things.
And I see it as these layers, and they just are you know, bringing out these dysfunctional mast cells to a higher degree, more degranulation, more degranulation, more, more dysfunction, more, more inflammatory response. And then, and then there's like another trigger and then there's another trigger, right?
So what you're doing is you're eliminating a huge trigger potentially for a lot of these patients. But like you said, there may be other triggers that they are still exposed to because they have dysfunctional mast cells at baseline. [00:46:00] So, we, so we can bring them back to a better baseline, and that's, that's the hope.
A lot of them get back to a pretty good baseline, it sounds like, right, but you still have to be on alert. And so, patients that then require additional things like this patient who may need a stent or surgery it, it is, it is a difficult situation on many levels because her mast cells are not normal, even without the breast implants.
Dr. Eva Nagy: It's how much we trigger them and with what.
Dr. Tania Dempsey: Yeah, exactly.
Dr. Eva Nagy: So, as time goes
on
at least for the last three to six months, you know, you take a patient history and you know, the, the consultation that we have is not very surgical. It's actually more physician based. So you want to know all of their past history, allergies and so forth.
And the more that I've been asking patients, I've started to see like a syndrome, if you like, of the [00:47:00] things that other, other illnesses or, or past medical history that the patient has had apart from MCAS. And BII. So, Endometriosis, Irritable Bowel, Hyperflexible, POTS and ADHD type symptoms. And I actually list them out in my consult and I would say the vast majority tick at least 80 percent of the boxes. So, I think when you're dealing with mast cell, it branches off into so many different areas. You know, gynae, connective tissue, muscle, nerve, that I think mast cell is going to be at the root of so many different illnesses, much more than we appreciate at the moment. I don't know if you agree with me on that, but the more that I ask these questions, a lot of women have endometriosis, multiple laparoscopies to [00:48:00] get rid of grade three, grade four. They're flexible and have, you know, scope after scope, and they can't find anything in their gut, and then you do mast cells on them and they're elevated. So, I think, you know, before the Industrial Revolution they were probably calm and then we did the fantastic thing, we went through and got the plastics and the, the smokes and the pollutants and everything and it's just gone awry
Dr. Tania Dempsey: 100%. and the glyphosate, glyphosate, and the yeah, and the plastics, and the pesticides, and the the, the hyperpalatable food with all the chemicals in there, and, yeah, it's, it's, yeah, it's pretty bad. But yeah, I think the syndrome that you're talking about is you know, we call it, some of us call it the septad.
It started as the, it started as a triad, which we, we still, we still
talk about a lot.
And it really is, you know, and I see it, and I have all these arrows of all the interconnections between the mast cells, [00:49:00] the hypermobility, the connective tissue disorders, the, the autonomic autonomic nervous system disorders, including POTS, but also gastroparesis and other things, all the, the gut issues.
And you see, and you see how everything is connected. And what I have in the middle which I'm, I'm debating a little bit and I, I'm going to be changing it around, but the middle is really infection slash mold slash toxin, essentially. So it's like the environmental stuff on the the outside or the environmental stuff on the inside, setting off this whole array of
of inflammatory processes. That for some people, and I think there's a genetic vulnerability, you're going to send them down more of the connective tissue part, and some of them are going to go more down the other part, and then, and then a lot of them are just, you know, circling and getting worse and worse.
And so these vascular problems, right, we're starting to see so much more of those. I never, I never saw Nutcracker Syndrome until the last few years. I've never seen it before. I never learned [00:50:00] about it in medical school to be honest, but now we see it more often than I could have imagined, right?
Dr. Eva Nagy: And to educate our colleagues, that's the big thing. So even though we got documented evidence on the ultrasound that she had, that she's got occlusion with the thoracic, 100 percent occlusion, when you put your arm out 180 degrees and she's got nutcracker. When the patient told her GP, she laughed at her. I mean, I don't want to, I don't want to call her out or anything, but, you know, because we don't get taught this in medical school, and because we, a lot of people don't actually continue to learn as we go through our, our lives, in our jobs, a lot of the times, we just kind of do our jobs and get on with it.
We have to go that extra step, and, and if a patient comes to us and says, I've got this, to say, Oh, well, I didn't know about that. I'm not quite sure what this, the diagnosis is, but let me look it up and let's work together as opposed to now she, [00:51:00] you know, she, the patient feels victimized yet again, you know, and I've written letters and I put in all the reports and you know, it's documented.
This is the legitimate thing. The other question I want to ask you is, you know, when you were doing your flowchart, have you got stress in there? Because we know that stress also elevates mast cell activation, doesn't it? Yeah.
Dr. Tania Dempsey: All right, I'm adding that. Yeah, no, it should be there for sure.
Dr. Eva Nagy: Yeah.
Dr. Tania Dempsey: Stress is a huge thing and, and stress could be emotional, mental, physical. You know, I think about the, the thoracic outlet obstruction as a stressor on the body. So stress is a very, very important
Dr. Eva Nagy: And pelvic congestion. That's a really big one. A lot of people
don't tend to know about that either.
Yeah. So educating our colleagues about that because a lot of women will have chronic pelvic pain and you know, they, they undergo the, the ultrasound, intravaginal, [00:52:00] topical they'll go to laparoscopy, everything's fine, but we don't think about congestion as being a serious cause of pain. And at the moment, I'm still looking for a really good radiology place where they can do the, the imaging properly. I do have, I'm going to call him out, Zane up in Queensland. He's amazing. If I can get the patient up to see him. He does amazing work as a radiologist to identify patients who've got pelvic congestion syndrome.
Dr. Tania Dempsey: What is your thought about why the why behind the Pelvic Congestion Syndrome? I have some thoughts on it. I, our colleagues have some thoughts. I'm curious what you think. Why do you think we're seeing more of it?
Dr. Eva Nagy: I think that mast cells affect the walls of arteries and veins
and which is why also we get hyperflexibility because it acts on the connective tissue also. Whether it's in our genes [00:53:00] that have already caused a predisposition for our mast cells to eventually become and have somatic mutations later which are also the same genes that govern what our connective tissue are doing. I think you get a much greater dilation of venous, venous system in your pelvis, but also if you have something like Nutcracker Syndrome, you know, you get backflow and you get congestion that way as well. But again, I think it does come down to the mast cell because we're seeing so many people who've got mast cell issues also have pelvic congestion.
It's not an individual entity. I think it's linked with many other things as well. So I think it's related to the hyperflexibility, maybe Ehlers Danlos, I'm not sure, I'm not the expert on it, but I can see in my mind the natural evolution that comes with the physiology of the mast cell and connective tissue and what the vein walls are doing.
Dr. Tania Dempsey: I agree. That's exactly, I think that's [00:54:00] exactly what's happening.
Dr. Eva Nagy: I just see mast cells everywhere now. I can see people walking down the road, I'm going, MAST CELL PROBLEM!
You have a mast cell problem too! Come, come, come, I shall help you. It's just, it's just so common and you know, I think it's more than the 17 to 20 percent that is probably quoted in the literature. I think it's much more than that.
Dr. Tania Dempsey: Yeah, I, I, I tend to think so too, especially in women. I think that's, maybe we probably have a slightly higher predisposition, but it's true, once you see it, you can't unsee it.
Dr. Eva Nagy: You
can't. And women who've got problems with contraceptive pill and the Mirena, you know, I ask them now, so how did you feel when you were on the pill? Oh, it was terrible. Was your mood really erratic? Was it up and down? Did you feel depressed or anxious? Oh, I had to come off with it within six months because it was just so hard.
And what happened with Mirena? Same, it was just awful. And you know, Larry taught me that you've got estrogen receptors on your mast cells and that's why mast cell problems usually arise [00:55:00] after puberty, you know, and so you can see that the mast cells are activated with external hormonal stimulation with estrogen.
And similarly, a lot of them say, I don't drink alcohol anymore. I'm like, do you know why? No. Do you know why you get tipsy and you feel like you're hungover the next day, even though you had like half a glass? No. Or it's full of histamine. You've bypassed your mast cell and you're drinking histamine.
That's why you feel so cruddy. Oh, so, you know, the more that we do, I reckon in five to 10 years, if we can educate people like this, they will become just as much of an expert, well I'm not an expert, more knowledgeable shall I say, because if I can learn this in two years other people surely who are much smarter than me can do even better.
Dr. Tania Dempsey: Well, that's a, that, I mean, that's the goal of doing podcasts like this,
hoping to reach more people. I hope to reach more medical professionals. But even, even obviously it's just even important to educate the patients because the patients are educating the medical professionals at this point. I mean, I think, [00:56:00] you know, it's a, it's unfortunate really that it's come to this because clearly the doctors and other medical professionals are not learning it in school.
So somebody has to teach them, you know, and so we're going to try to teach them. And we have a documentary, Jill and I are involved in producing a documentary. It's a documentary. on, on the triad of EDS, POTS, MCAS, and we are talking about you know, the specifics about those conditions and and, you know, showing the journey and the importance of all this stuff, but we also want to educate medical professionals.
So we have, we're creating a educational library that we hope will help also, right? And we just keep, keep doing the work we're doing and with time, I think if I compare what I know now to when I really started learning about it, you know, so let's say my first patient, I think I identified, with MCAS, maybe it was 2015, so it's like nine years.
And if I look back, even Larry joined my practice [00:57:00] in 2017, so that's, you know, seven years. And what we've learned since he's been with me what we've done together has really been exponential, and I think it will continue. And we've grown, you know, the group of people that, that know about this.
You know, so I'm hopeful, that we're going to just continue to grow this group. And I, and I will tell you what is really, I think, changing things from a, from let's say medical professionals maybe wanting to understand this more. Is medical professionals being afflicted with it or having family members afflicted with it?
Because this is what I'm seeing over and over again, is that that's when, you know, I have, I have patients who are the most traditional physician or spouse of a physician, like so they come from a very traditional world where they would never even believe this stuff, but then they're faced with it in their family and guess what?
They embrace it pretty quickly,
Dr. Eva Nagy: Yeah. And I [00:58:00] think, as you are right, in that it's a bit unfortunate that the patients are educating the doctors, but I do encourage patients to be their own advocate, until the medical fraternities on board with this the patient just has to be their own advocate, and keep searching and finding those who are like minded to find the, the solution and the diagnosis. It takes a lot of effort and often financial constraint to do so, but women are very in tune with their bodies, you know, they understand when something's not right. And I think if you feel that there's something wrong, rather than trying to explain, I get that a lot of, you know, so you ask them, so how do you feel? I'm fine. And then you have a look at the tick box, and it's like 300, the score's 300. I'm like, you're not really fine. Oh, but I'm very busy at work. Oh, my children have been sick lately.
Oh, you know, a bit of a stress under my marriage. You know, I'm like, no, no, no. [00:59:00] You don't get your rash and your hair falling out, and irritable bowel and hyperflexibility and endometriosis and the list just continues on and on. You don't get that from what you just told me. I think there's a little bit more to it than that.
And so if you feel that you have issues with your health, just keep searching. There are doctors out there who, who really want to understand and who are not going to be laughing. And then there are those who continue on their own little world and you just step aside, you go around and you continue. We do that in our work, we do that in our home life and there are people out there who do want to help.
Jill Brook: Can I just say how grateful I am to the both of you for publishing on this? Like, Dr. Nagy, when you publish a paper that took the trouble to save the breast tissue and send it in for the staining for mast cells, you've done it. You've proven it. And so now that's an entire field [01:00:00] where you may be the only person whose eyes are open to this and you may be the only person catching on right now.
But you've put that evidence into the annals of science and I get excited thinking about how it just took one brilliant scientist, you in your field to do that. And we just need one from every other field. Where mast cell is, is driving it and I'm just so grateful that you took the time to do the really hard lab science to make it, make it clear.
Dr. Eva Nagy: Well, you know, we can only do our work when we have a supportive community. You know, I could very well take photos and send the capsules in and do all this work, but if it wasn't taken seriously, if I didn't have the support of the MCAS community, it would fall on deaf ears and probably wouldn't be published. So we can only do as much as we are [01:01:00] supported to do so, so I, I'm very genuinely feeling very blessed to be part of the Masterminds group and your podcast and to, to be able to spread the word, and to understand why we do what we do and have a scientific basis to it. It's not that I want to be in there for eight hours and, and taking out capsule and things because, you know, I enjoy the music.
I want to do it, well I enjoy my work anyway, but I want to do it because at the end I want to remove any variable to say that it's your, your implants or your capsules that remain. I want to take that off the table, so if you have any issues that still remain, we can ignore the BII now, we can now focus on something else.
I don't, I don't ever want to, in my mind, if a patient doesn't get 80 percent better, they get 60 percent better, for me to say, hmm, you know, did I not do something right, did I leave that little bit [01:02:00] when I should have taken that little bit? I want that off the table.
I mean, if you do cancer work, it just comes naturally because you want to take all of the, the cancer, you know, you want to take that lymph node that potentially has cancer in it. You don't cut corners. You can't. You've got people's lives in your hands, and I don't see this as any different. You want to give that patient their life back so they can be productive and enjoy their life,
feeling well. There's, there's nothing better than feeling well, and as one of my patients says she took two years to come to the conclusion, saw me two years ago and we've recently done her surgery just now, 'cause it took her two years of mental anguish to say, you know what, they just have to go. And she said, I'll try and quote her, she says, There's no point in having really big, beautiful breasts if I'm bedridden. I'd rather have petite, perky ones and have a good life. I mean, it doesn't, it doesn't get any better than that. [01:03:00] That's, in a nutshell, you would rather have an amazing, energetic life with petite breasts than be bedridden and have large breasts with implants.
Now if a patient identifies as that and understands that, it makes the journey so much easier.
Jill Brook: So let's make sure we tell people where they can find this journal article. We'll link to it in the show notes, so we'll put it there. Any other websites or anything?
Dr. Eva Nagy: It's on our website as well, so if you just Google my name, we're called Sydney Oncoplastic Surgery, it's on there. It's free for all, so we made sure it's accessible to anyone and everyone, you don't have to pay for it. But if you just type it into Google, it's already up there. And anyone and anyone, everyone can read it.
And I think the more that we become knowledgeable with it, the more that we'll spread the word and more people will have the appropriate surgery that they need to get better.
Dr. Tania Dempsey: Thank you so much, Dr. Nagy for, for [01:04:00] being here today.
Dr. Eva Nagy: It's been a pleasure. An hour goes very quickly with you guys.
Jill Brook: Oh my goodness, you both are amazing! Thank you so much for everything you do and all this expertise and, oh my goodness. Hey listeners, that's all for now, but we'll be back again next week with a normal episode of the POTScast. And we'll be back again soon for another episode of Mast Cell Matters with Dr.
Tania Dempsey as our special host. So thank you for listening. May your mast cells be good to you this week and please join us again soon.
