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Speaker 1 (00:00:00):
Hi everyone. My name is Dr. Shirin. We are here on another Tuesday with our Hernia Talk Live questions and answer sessions. We call these Hernia Talk Live. Our guest panel today is the very well known and well respected Dr. Jan Willem Cohen Tervaert. Dr. Tervaert is a rheumatologist currently practicing mostly out of Canada at the University of Alberta. He is also the first non-surgeons we’ve had on hernia attack, and you’ll know why shortly as many of this will be as being a videotaped both on Facebook as well as on Zoom. For those of you that are joining on either platform, we should have your participation available and then when I’m done, I will make sure that this is posted on YouTube with the rest of our hernia talk episodes. So without further ado, I’d like to welcome Dr. Tervaert. Thank you for joining me.
Speaker 2 (00:00:58):
Thank you very much for your invitation to have opportunity to have contact with patients. Yeah,
Speaker 1 (00:01:06):
Thank you so much. So many of you know Dr. Tervaert. I actually was very lucky to have a mutual friend introduce us, right? Another Dutch physician who is a dear friend of mine, and I learned about you mostly because of your publication on hernia Mesh. No one else really had published about Mesh reactions after a hernia Mesh, and so I believe yours was the first to be published to specifically discuss that problem. So we’d like to get into that. And I know that you are a rheumatologist, but more than that in that you have a special interest in these different implant illnesses. You’ve testified from the FDA for the breast implant illness. You’ve studied patients with hernia Mesh. So we have a full hour dedicated to only discussing hernia Mesh reactions from your point of view, the medical point of view. So I really do appreciate you affording us this opportunity. Thank you very much. It’s very rare to be able to just sit down and just go through every single little detail or every bit of knowledge that you have with our patients.
Speaker 2 (00:02:29):
Good time of the good thing of the COVID period is that we do a lot of zoom now. Yes, every meeting is on zoom. So
Speaker 1 (00:02:37):
Yes
Speaker 2 (00:02:38):
To that.
Speaker 1 (00:02:39):
Perhaps you can give us an introduction as to how you got involved in this and what your thoughts are.
Speaker 2 (00:02:46):
Okay. So I’m basically an internal medicine specialist and a nephrologist. So I went to Harvard back in the beginning of the nineties, and then we had on the news- breaking news from the Netherlands. So when I was in America, and then it appeared and then you get advertisement. So we were really sitting there, very excited, what was it? And then it appeared to be that there was an airplane falling on Amsterdam, an all airplane. And after that disaster many patients developed symptoms that were not very well explained, and they were thinking, okay, it was Israel, so it might be some poison. But it appeared not to be any poison. It appeared to be just silica. So I interview, when I came back to the Netherlands, I gave an interview that silica is a well-known environmental factor for autoimmune diseases, and this was on the newspapers full of this thing.
Speaker 2 (00:04:03):
And in two sentences I made a mistake to say, and silicone can also do this. Then I got a lot of hate mail from doctors plastic surgeons that, you don’t know anything about silicons, so don’t do this. So that triggered me. And then I started studying foreign body induced implants related illnesses, which appears to be not only for breast implants, but also for hip implants, for other metal implants, and also for Mesh which can be the hernia Mesh, but also the TVT polypropylene can induce an immune reaction. So that’s basically how I started this.
Speaker 1 (00:04:50):
So in your experience, you’re obviously more skilled in the autoimmune. Is this a very kind of simple problem or is this a complex situation where it’s unclear if it’s a true autoimmune reaction or not?
Speaker 2 (00:05:09):
Well, it’s always difficult to state that it’s autoimmune. It’s every foreign body that you implant in a human is causing an immune reaction. And in some patients, this immune reaction is very aggressive and sometimes it depicts as an allergy and sometimes it’s more a grown inflammation that occurs. So we have to think always that our grand, grand, grand parents, most of them came from Europe and these grand grandparents survived the black plague, and that was because their immune system is so good to fight bacteria and virus. And that’s the good thing. So we inherited an immune system that’s very good against these microbes, but can also react to foreign bodies. And if this reaction is too much, you can become ill from it. In addition, if you have done the genes to develop an autoimmune disease, this autoimmune disease can earlier be present then when you don’t have a foreign body implementation. So in general, autoimmune diseases like lupus or rheumatoid arthritis or vasculitis or multiple sclerosis these diseases are multifactorial, meaning that it’s not only one issue that causes it. So it’s not only a Mesh, but it’s a Mesh. And in addition, your genes and probably other factors like environmental factors like a virus. So for instance, in the COVID 19 period, we expect more people to develop these autoimmune diseases. I see. Just, and you don’t get it from the COVID 19, but it’s an extra trigger that may have you done developing it.
Speaker 1 (00:07:22):
Yeah. We looked at, when we published our experience in looking at Mesh pathology, every single Mesh that comes out of the body will have pathology that shows foreign body reaction, chronic inflammatory reaction and fibrosis. That’s just part of the normal body’s reaction. But of the people that we removed, Mesh in the majority of them did not have a Mesh reaction. It was either incidental removal of Mesh or they had a hernia recurrence, let’s say. So how do you explain how some people react to Mesh and others?
Speaker 2 (00:08:02):
Well, that’s the difference in immune system. Some patients do have more adrenal reaction and some patients do have more an allergic reaction. And if you have an allergic reaction, you don’t form these granulomas, you form IgE, IgE responses that may develop then. So what we found when we looked at our Mesh population that developed complaints, we found that many of these patients did have a history of allergies. And that’s just common allergies, like a fever allergy for dust allergy for cats and foods and nickel allergies. So those are the common allergies that we encounter. And I think about two third of our patients did have a clear history of allergies already. And that’s a phenomenon that we also encounter in patients that develop silicon breast implant related illness. And in patients who have metal induced, so hip implant or an knee implant related problems. So it’s a common phenomenon that if you have an immune system that develops allergies, that also your reaction to foreign body may be more exaggerated than when you have an immune system that is very finely determined.
Speaker 2 (00:09:35):
So one of the major issues that we found again and again, is that if your immune system is not well regulated, that so if it goes like this that you are more prone to develop it. And one factor that we have studied a lot is vitamin D. So if your vitamin D level is low, which is quite common here, and I live quite close to the North Pole now here in Canada, so there vitamin D in general is low, but especially in patients with dark skin then these immune reactions go like this. And we proved that in the Netherlands, at least where we did that research, we proved that if you have low vitamin D, you are more prone to develop autoimmune diseases when you have silicon breast implants. So that’s a common factor. That’s a factor that’s easy to handle. Cause the first thing always is then to say, okay, if you have a Mesh, please take care of your vitamin D, at least take and here in Canada we say take 2000 units every day at least to prevent these strong immune reactions. So that’s very easy first thing.
Speaker 1 (00:11:01):
So that leads to our, one of the questions that we’re submitting, which is I guess you say there are some patients that are more at risk for Mesh reaction than others. The patients that I see also have diseases such as POTS, which is a postural orthostatic postural orthostatic
Speaker 2 (00:11:23):
Tachycardia syndrome,
Speaker 1 (00:11:25):
Tachycardia syndrome, thank you. <laugh>, mast cell activation, lupus, other autoimmune disorders, fibromyalgia is another one. And then people who are super allergic. So they come to the office and they have tons of foods and medications and other things that they’re either allergic to or are very sensitive to. So in my practice I’ve noticed that there’s a correlation, but do we know if that’s, first of all, I have two questions. One is do we know that there’s a link? And then secondly, is the reverse also true? So you’re normal and you get a Mesh implanted and then you get mast cell activation syndrome or an autoimmune disorder or fibromyalgia diagnosed. What are your thoughts on that?
Speaker 2 (00:12:13):
Yeah, so we now today label this disease as AISA, yes stands for autoimmune slash autoinflammatory syndrome induced by avants. Yes we may later discuss how it works, but the classic symptoms of these are chronic fatigue, which is very much correlated with POTS and fibromyalgia and joint and muscle pain. So those are classic symptoms, fatigue, joint and muscle pains developing after the foreign body is implanted. And this is the same in the silicon breast. And there we have a lot of experience. We have a little less experience with the Mesh, but the Mesh problem starts earlier than after the silicon breast implants. And that’s probably because the Mesh prop, polypropylene Mesh or other Mesh are more directly activating the immune system. The silicon breast was actually implanted because people thought it was in earth, meaning that there was no reaction with the immune system. It appeared to be not true, but it takes a while before the immune reaction goes there.
Speaker 2 (00:13:30):
For the Mesh, it starts actually immediately. So complaints can occur earlier. And the classic complaints are gronik, fatigue syndrome, fibromyalgia, joint pain, muscle pain. But in addition, there’s also a little bit of difference. So in addition to that, there’s a cognitive impairment with word finding problems, forgetting things all the time concentration problems. So those are classic symptoms. But the difference with a regular fibromyalgia patient or a regular chronic fatigue syndrome patient is that these patients do develop in general also quite severe sicker symptoms, meaning that they develop very dry eyes and dry mouth with problems of the vision. And sometimes problems with swallowing and dental issues teeth that break fall out. So that’s more severe than we generally observe in patients with fibromyalgia. And another distinction is in general, patients do have what we call pyrexia, which is actually a feverish feeling all the time as if you have the flu constantly. I just feel
Speaker 1 (00:14:44):
That. Yeah.
Speaker 2 (00:14:46):
Yeah. So those are the classical symptoms of the syndrome. And then and pots meaning that your autonomous nervous system is not working normal. You get palpitations when you go from laying position into a standing position. That’s a very common phenomenon also in the Chronic fatigue syndrome that doesn’t differentiate between the two.
Speaker 1 (00:15:17):
So is this a issue where there’s a tendency, a genetic tendency towards an autoimmune disease and the Mesh implant you into that disease?
Speaker 2 (00:15:28):
Yes. Or so the immune reaction, you can still not call this autoimmune, it’s still an autoinflammatory reaction. So immune system is more prone to develop these symptoms. And why do we know that it’s caused by that’s always a difficult discussion for surgeons. Most surgeons say, no, it’s these people develop these disease without this Mesh. Oh, anyway. So it’s not due to the Mesh is the finding that if you remove the Mesh that in general these symptoms disappear? Yes. We don’t have a lot of experience with that because we don’t have a large series of patients. Correct. But we have that from breast implants. For breast implants. We have thousands of patients who develop these symptoms and remove them, and then the symptoms AMA rate or even disappear. But we have the same phenomenon in Mesh as well.
Speaker 1 (00:16:41):
So is ASIA syndrome or Shoenfeld syndrome which is this autoimmune autoinflammatory reaction to an implant such as hernia Mesh, is that accepted by the medical system as an actual phenomenon or diagnosis or what’s the controversy there?
Speaker 2 (00:17:00):
It’s a little bit dependent. Who are your friends? My friends are autoimmune. You
Speaker 1 (00:17:07):
Share friends. So we’re
Speaker 2 (00:17:08):
Already, yes, we accept it. And in the medical literature, there’s many high highly established journals that accept papers now with these syndrome. Still many doctors say, well, I’ve never heard about it and I don’t believe, but you don’t believe in COVID 19, you don’t believe in HIV, you don’t believe in asthma, is it’s just a fact that these patients do have these symptoms, that the symptoms are reversible after removing and that we observe these immune abnormalities that we can demonstrate. Our research now is more focused on what exactly happens with the cells. And we have some preliminary finding that the cells are indeed not functioning normally, that the mitochondria, which are the energy fabrics of the cell are dysfunctional. We need more research. But that’s true for many diseases. But I have to remember people that when I was young and a student asthma was believed to be a psychological disease and Oh really? Yeah. So, so many people didn’t believe in not of disease, just those are stressed these, and it’s because the parents don’t behave good
Speaker 1 (00:18:51):
And
Speaker 2 (00:18:52):
Change
Speaker 1 (00:18:53):
Based on how pervasive is this disease. I see patients, but I have a very unique practice because I get referred a lot of patients and I publish about it. But even I don’t see that many patients, I feel like it’s become more common. But Mesh has been put in since the eighties and we’re really not considering seeing these reaction patients until recently in the past maybe 20 years, 10 to 20 years. Is this a large number or is this 0.5% or 0.1% of all patients that are getting hernia? Mesh happens or is this like 30%? Do you have idea? We do about a million hernia repairs a year in the United States. I can’t say that 30% are having Mesh reactions, we just don’t see that. But is it more like a fraction of a percent? It’s still a big number. I, I’m not discounting it. Obviously it’s a big number because we’re doing a million a year, but how big of a problem is this or is it a growing problem?
Speaker 2 (00:20:10):
We don’t know
Speaker 1 (00:20:11):
<laugh>
Speaker 2 (00:20:12):
Answer. Cause there’s no research done on this yet. So it’s definitely one of the things we should do. We had a same discussion a long time with the breast implants and also there, we don’t know how often this occurs. We did a small study in the Netherlands where we found that about one quarter of the patients did develop problems and then we did a large study in Israel where we also found one quarter of the patients did get problems. But we to realize that breast implants are only females and females in general have an immune system that are more prone to develop autoimmune problems than male. And of course
Speaker 1 (00:21:00):
I see that too.
Speaker 2 (00:21:01):
Yes. Are males. So we don’t know.
Speaker 1 (00:21:04):
I see in females more often. Correct. And also I feel the super thin patients tend to react more, maybe because the Mesh is more directly interfaced with highly vascular tissue as opposed to fat. I don’t know.
Speaker 2 (00:21:20):
Yeah, no, no, there’s definitely much more research needed. Yeah, actually epidemiological research. But it’s difficult to do that prospectively meaning that you should after the Mesh start with the research and it, it’s a little bit easier probably with Mesh than with breast implants because in breast implants it takes over an average 10 years before patients develop complaints. Whereas in the Mesh the average was about two years, so that’s more much more quicker. So it shouldn’t be too difficult to make a little bit of a research there.
Speaker 1 (00:22:00):
Yeah, that was a question I was going to ask you is how soon after Mesh implantation can one get a Mesh reaction? In my experience, it’s within weeks to months, rarely after two years. But what is that? What have you seen in your experience?
Speaker 2 (00:22:14):
Yeah, well it took two years before it was recognized. Oh,
Speaker 1 (00:22:20):
I see.
Speaker 2 (00:22:21):
<laugh> in general. It can occur very quick actually. So some patients even tell that they have developed it within a month.
Speaker 1 (00:22:31):
Yeah. Yes, we see it with the,
Speaker 2 (00:22:33):
And that’s really different than from hip implants and from breast implants.
Speaker 1 (00:22:38):
Okay, good to know. But sometimes I see a patient 10, 12 years out and they think they have a Mesh reaction. But what do you think of that? Is that possible? I feel like that’s not usually when the Mesh is any further reactive.
Speaker 2 (00:22:56):
Sorry, you said within, so
Speaker 1 (00:22:57):
Some patients come, they’ve been online and they’ve read, they have these new symptoms and they think it’s their Mesh, but their Mesh is put in 12 years ago. So with that, that’s less likely to be a Mesh reaction or what do you think?
Speaker 2 (00:23:16):
I cannot exclude that actually. So yeah, okay. There could be a trigger why suddenly the immune system recognizes now much more aggressively a Mesh and those triggers can be a virus infection or a bacterial infection.
Speaker 1 (00:23:33):
I see
Speaker 2 (00:23:34):
Still, so maybe always two hypothesis. One is just the immune system attacks the polypropylene or a Mesh in itself. Yes. And the second theory is that the Mesh becomes contaminated with bacteria that don’t make you very ill, but like to grow there on foreign body. So that’s another theory that can be very true. And indeed, I must say that in patients who sometimes we try with antibiotics to see whether we can get the immune system to rest again, yes, [inaudible] are specifically those that also have an effect on the inflammation itself. So they’re not only work.
Speaker 1 (00:24:44):
Can you hear me okay?
Speaker 2 (00:24:45):
Can you hear you? Yeah, yeah, pat, yeah. Yep.
Speaker 1 (00:24:50):
Okay. So that brings to another question, which is in the same line, which is multiple exposures more likely to push you into that direction or the amount. So I’ll give you an example. I had a patient, he had one small piece of Mesh put in no problems. It recurred because it was too small of a Mesh, it was the wrong technique. He had a second Mesh put in, leaving the first one in place. He started getting some symptoms, but that was the wrong technique, too small of a Mesh. Then he had one big Mesh put in and then that just pushed him over the edge and he started getting all the symptoms, including rashes, feeling hot, severe, chronic fatigue, brain fog this kind of burning of the fingertips and the feet, his feet very sensitive to sunshine. The least little bit of sun would burn him. So I felt like it was more of a dose response. Do you see that?
Speaker 2 (00:25:53):
If you had asked me this question two months ago, I would definitely said no. But recently we looked up the experience that I had the last two years here in Edmonton and indeed we found a same phenomenon not another Mesh, but if you have foreign bodies, different foreign bodies implanted, good example that I just presented in Israel last Friday, zoom meeting, zoom a patient who has a Mesh breast implant and who had a silicone based sterilization and the Mesh was removed, the brass implant was removed and she still had all the problems. Then finally we said, okay, there’s also silicones in your sterilization. And then after that she completely had no problems anymore. So indeed that suggests that you have to really look very carefully where are the foreign bodies implanted? And it might be that if you have one that you have less problems then. And finally, if the whole immune system is activated from everywhere, but speaking from an allergic perspective, it makes sense because allergy, we know one little tree leaf of a tree can already put you into the problems. Yeah. So I
Speaker 1 (00:27:31):
Understand
Speaker 2 (00:27:32):
To me as well.
Speaker 1 (00:27:33):
Yeah, I have a lot of allergies myself, so I feel for anyone who’s got allergies. Let me ask you this, with regard to this kind of dose response is there any way to predict it? Other tests, biocompatibility tests allergy skin tests? I do allergy skin testing, but it hasn’t been that revealing for my patients before surgery. Besides risk, I understand the risk assessment. So known autoimmune disorder, family history of autoimmune disorder, lots of allergies, female with all of that in place, known pod syndrome, mast cell activation syndrome, interstitial cystitis psoriasis multiple sclerosis, like you mentioned, fibromyalgia, those are all risks. It doesn’t mean that you’re going a hundred percent have a Mesh reaction. No. But it puts you at higher risk than the average population, I would say
Speaker 2 (00:28:37):
Unfortunately that’s what we have at present. We don’t have Okay yet. Although that’s the goal of our research actually, to see whether we can better predict that we can develop a test. And as mentioned, we look especially at the mitochondria now cause it seems to be the clue
Speaker 1 (00:29:01):
Mitochondria. Yeah, yeah. Can you explain more about that?
Speaker 2 (00:29:05):
Yeah, so it’s not completely new because research also from the group in California, in UCLA, on chronic fatigue syndrome also focuses on the mitochondria. So the mitochondria are the parts of the cell that deliver energy to the cell. Okay. And what a common phenomenon in patients who become ill is that they have no energy. Yes. So it seems logic then to look especially at the mitochondria and the current hypothesis that we have is that the mitochondria actually are over-activated by constant this immune reaction. So they have to work constantly very hard. And then at a certain time they say, okay, leave it. I go sleeping now I don’t want to be bothered anymore. I, I’ve done my work. And that’s basically our current hypothesis that if you have mitochondria that are easily actually going into winter sleep, so to say then you are more prone to develop this problem.
Speaker 1 (00:30:26):
One of the questions about sarcoidosis, is that also linked? Is that a disease that you would think would maybe be linked?
Speaker 2 (00:30:33):
Yeah, so sarcoidosis is granuloma inflammation where we don’t know what the reason is why these patients do have this granuloma reaction. Patients with foreign body induced granulom have the same granulom, exactly the same, but to mm-hmm <affirmative> with sarcoidosis is that we know what the trigger is. So to label a patient as sarcoidosis when he has a Mesh or when he has a, I see that is in my opinion, a mistake. So you don’t have sarcoidosis then you have foreign body induced.
Speaker 1 (00:31:12):
See, just to be clear, there’s currently nothing readily available to the average patient to predict definitively predict if they will get a Mesh reaction. Is that correct?
Speaker 2 (00:31:25):
That’s correct,
Speaker 1 (00:31:26):
Yeah. Okay. And then they come to me, I just take out the Mesh and in some situations it’s not the best situation, but they need to have a quality of life. So I take out the Mesh. So surgery seems to be the cure I’ve seen in my patients that everyone gets almost immediately better. In some people it takes a while for things to get back to normal, but within days, weeks, maybe months, they’re completely different person, they’re happier and they’re more energetic. It’s like I’m talking to someone like a twin or something. Their rashes go away, their joint pain is gone, they’re active, et cetera. Is there an any option besides surgery to attack this issue?
Speaker 2 (00:32:18):
Yeah, so of course in some patients it’s impossible to remove the foreign bodies, especially the [inaudible] patients. So where the prop polypropylene is used in gynecology. Mm-hmm. More difficult I think. So there we have to handle this problem in a different way. So basically what we do is we try to regulate the immune system, for instance with high dose vitamin D and if that doesn’t work, we suppress the immune system. And the classic example is with or prednisone. But we also use other drugs like the popular hydroxychloroquine fairly well known now because of President Trump. He likes it so much to prevent COVID 19. But that’s another drug that we all use all the time to immune.
Speaker 1 (00:33:19):
Okay. And then in your practice, what protocol do you follow? Do you send patients for specific blood tests that are not routine?
Speaker 2 (00:33:29):
Yes. So the problem is that many patients tell me that doctor cannot find anything. Well of course because the doctor doesn’t look very good. Well
Speaker 1 (00:33:42):
I tested my initials initially I would test everyone for ESR and ANA and CRP always normal.
Speaker 2 (00:33:51):
Yeah, yeah. So in general, these patients do have the same abnormalities, SSR cord, <affirmative> doses. We know that levels of in converting a enzyme are elevated, soluble intercon two receptor is elevated. So you look a little bit better to the immune system. Those are generally elevated, whereas immuno globulin levels, especially ITG one and IG two may be very low. So this is very abnormal because in the normal population 0.01% of the population does have abnormalities like that. So it’s very straight. I found that in about half of my patients with foreign body induced inflammation. So yeah, there are several abnormalities. There’s a pattern there, specific test yet, but there’s a pattern of immune abnormalities that in combination with the clinical symptoms. In my experience, I can predict then that I will recover from removing the Mesh.
Speaker 1 (00:35:14):
And in your experience, how often do they completely resolve after, let’s say they can have the Mesh removed?
Speaker 2 (00:35:25):
So we evaluated that and it’s about 85%. But I must say I explain also quite well how to get healthy immune system. And so one of the factors that Mesh patients do quite often have very severe is irritable bowel syndrome. That’s more yes, a problem in the Mesh patients than in the other foreign body induced problems. So I try to discuss always diets with them and I always discuss probiotics with them, with them. So those are the two things that we also change also already before the surgery. So that is an extra factor. And then of course we have to be careful with vitamin D deficiencies so that those are three things that are always handle after the surgery. Whether patients also recover without anything of this, I don’t know because I don’t do the experiment there that’s too easy to change.
Speaker 1 (00:36:48):
Can you talk about toxins? There have been, I’ll share with you a question that was sent in and I have patients as well. First of all, is there such a thing as toxins, chemicals or heavy metals that leach from Mesh implants? And if so, can you be tested for them? Is this something that is medically accepted theory that you’re leaching heavy metals from Mesh?
Speaker 2 (00:37:19):
I’m not a toxicologist, I’m a doctor who sees patients. But I was in the W H O committee where we evaluated environmental factors like toxic chemicals. So I teach every year on the toxicology course in Amsterdam. However, I still, I’m not a toxicologist, so I don’t know mean it might be, I think that we don’t know exactly what’s in the Mesh but we know for certain that polypropylene is causing an immune reaction. So that’s what we know for sure whether other chemicals are there as well. Yeah, no, we don’t get the information. Doctors don’t get that. The only people who know that are working in the industry, those people who work with the FDA, but they are not telling us what exactly in it because they sign a contract with the industry that they won’t tell.
Speaker 2 (00:38:28):
So that’s difficult for us, but we can say there’s no proof that those metals are can be used as a diagnostic test. There is a company in the Netherlands that suggests now that if you test breast implant patients for platinum, that is a very good predictor of breast implant, which, but then it might be a test to say that there’s leakage. But that doesn’t explain also that these ladies will become ill. Not all patients who have leakage will have the same healthy problems. So I don’t think that you should spend your money if I was a patient on these kind of things. It’s the combination of clinical factors and in addition with some laboratory evaluations that I just mentioned that is sufficient to make a diagnosis of ASIA and then I consult a surgeon to ask removal of the Mesh and then mm-hmm we’ll see what happens thereafter. And as said, about 80 to 85% of the patients are very comfortable then after that. So it does seem that we have together already a very good predictor who is going to be better after surgery.
Speaker 1 (00:40:04):
So in the United States, this seems to be a problem in the UK, Australia, but I talk with my friends in India, Africa, middle East, other European countries, it’s not been something that they are seeing or treating. Do you feel that that’s real number one or they’re just not seeing it because don’t, it’s not part of their, we’re a little bit more touchy-feely in the United States and we listen to the patients a little bit more and address a little bit more? Or is it something that we’re exposed to? For example, we drink bottled water all the time here I’m drinking water in a plastic cup, probably exposing myself to polypropylene. Is it that I’m exposing myself a little bit to all these different environmental factors and developing antigens or something in the body and now that then you put let’s say a polypropylene Mesh in me and that I’m going to react. Do you think that’s possible?
Speaker 2 (00:41:11):
Difficult question. Yeah. I know that if you don’t look, you don’t see it. So that that’s certainly one factor. Yeah, of course there’s been lots of studies on the immune system in developed underdeveloped countries or how you, and there is the idea that if your immune system already early in life has seen helmets. So if you live on in farm in Africa and you are born there then those children do develop much less allergies and much less autoimmunity problems later on than we in a protected western society. We never see helmets and we are always so clean. But whether that’s here, the reason why in some countries they don’t see this problem, I don’t know. We know that fibromyalgia is very common all over the world, that a certain subpopulation of these patients have a treatable form of fibromyalgia. So basically the good news I think
Speaker 1 (00:42:37):
Is fibromyalgia finally being considered an inflammatory disorder or an autoimmune
Speaker 2 (00:42:44):
Disorder. No fibromyalgia and chronic fatigue syndrome are still, in my opinion the diseases that we don’t know very much. So there is clearly some activation of the immune system. There’s clearly neuro inflammation. So if you do a functional MRI scans in these patients, you see abnormalities. But the research is lacking behind these diseases. So I really think that that’s one of the major goals of the next 10 years to get more knowledge about these diseases.
Speaker 1 (00:43:26):
So there’s other Mesh materials that we use besides polypropylene includes polyester, P V D F, which is poly vinyl di fluoride goretex biologics, biologic where it’s a processed tissue from human or animal body. And then there’s different sutures. So is it expected that all of those have some risk of being exposed causing it? For example I have a patient, lovely patient, she is very complicated, but she reacted to polypropylene Mesh. Seems like now she’s reacting to polyester Mesh. I have another patient reacted to polypropylene Mesh also reacted to biologic Mesh. I have actually two patients that reacted to biologic Mesh. What are your thoughts on that? Is it just an intensity? So some patients will react to a set of products and another set of patients will react to a much wider set of materials?
Speaker 2 (00:44:38):
Yes. I think that patients, it’s more in the immune system than in the material. But of course some materials are much more making a reaction with the immune system than others. So polypropylene for instance, is something that is as well known to be a strong activator of the immune system. So therefore there are much more biological things that can be used. So I believe that that’s safer. But when you have already had that immune system reacting, the next step
Speaker 1 (00:45:27):
Oh I see
Speaker 2 (00:45:28):
Reacts again. Yeah, it’s already primed to react on a new foreign body, so to say. Yeah.
Speaker 1 (00:45:38):
What about dental? I’ve had patients that if you ask ’em carefully, they’ll say, oh yeah, I had a dental implant and I react to that severely.
Speaker 2 (00:45:48):
And that’s a common phenomenon that tell me quite often that for instance, they had a broken arm and then metal was implanted, but they reacted so much to the metal that it had to be removed.
Speaker 1 (00:45:59):
Yes.
Speaker 2 (00:45:59):
That’s a very common issue in these patients that if they react to one material, they also react to other materials and then so materials can be the case as well.
Speaker 1 (00:46:12):
Yeah. In surgery we use a lot of, not just sutures, but also clips and staples that stay in the body. They’re almost always titanium, medical grade titanium. But if you look carefully, some of them have, depending on the company, they have a little bit of nickel. So I’ve taken clips out or in patients with severe symptoms no nick allergy, like a female who can’t wear certain earrings and their symptoms go away. You have to go chasing after these clips. But if you find the manufacturer, you can see that there’s maybe a little bit of nickel in the clips and they didn’t know that they had these clips in the body because it’s such a routine part of, of what you do as a surgeon, they don’t tell the patient.
Speaker 2 (00:47:01):
Right. So when I defended my thesis in the Netherlands, you have to do always 10 statements. And my number nine statements has to be a little bit not true, but real statement. The doctor is actually a detective.
Speaker 1 (00:47:20):
Yeah, it’s true. I think I actually enjoy the forensics and the detective, but the reality is, I hate to say this, at least it’s very true in the United States, probably more so in other countries, our system is not set up for the doctor to sit down and figure these things out. It’s a volume based system. And so if I were a surgeon that was employed by someone, I’m not, I used to be, but I had to get out because I could not take care of these patients in an employed system because I won’t have the time to take care of them. And then the reimbursement is also not for anyone that spends time. The reimbursement is made so that you see the most number of patients as possible in one day. So it’s a little bit of a problem where you have all these patients that need help, very few of us that can help them by giving them our time to figure things out and solve this problem, do the detective work, the forensics, and there’s just so few of us. And then to add on top of it, no one believes in this. If you talk to most doctors they think we’re all quacks. They think I’m a quack. Even having this session <laugh> to give an hour to oh,
Speaker 2 (00:48:43):
That’s a problem. Also with my colleague who started the whole silicon breast implant illness in the Netherlands. Yeah, she’s been a fighter already for 30 years and she’s been several times nearly expelled from the plastic surgery
Speaker 1 (00:49:07):
Of society.
Speaker 2 (00:49:08):
Wow. Because of they said, well you are a quack. But in the long run she now proves with that she had a beautiful paper in science recently that silicons actually can induce cells to go into apoptosis. So it’s more and more being proven that these factors are real. And of course my contribution is especially that you very well validate that symptoms disappear after surgery. So that’s basically where it is. Yeah.
Speaker 1 (00:49:48):
So what are your recommendations for the future? There’s me, there’s a handful of people we can coordinate with. I certainly have the patient population to be able to coordinate with. I will definitely contact the chronic fatigue or chronic pain group at UCLA to see if I can get involved. I just feel like we need more to publish more so that we start getting a critical mass of information out there that is validated and peer reviewed. It’s a slow process, but at least it will gain a little bit more traction. What do you recommend that I help do in, I’m doing to promote this further.
Speaker 2 (00:50:33):
So what I do is I train all the residents that come at the University of Alberta that if you have a patient with rheumatic disease, you should always very carefully take a history whether there’s foreign body. Yeah. Cause that’s something most of the residents forget. So that’s the first thing. Education to the young doctors that’s easier than convincing our colleagues, I must say, because they already have their point of view that is more difficult to change. And then what we currently do is we have a large research pro project on that. And that’s something we could in a easy way try to set it up with your patients as well. That before and after at least we do questionnaires that’s not too, and some basic laboratory maybe. And then larger series that that made a big difference. When we could demonstrate in the silicone breast implant patients that after removal they indeed get a lot better.
Speaker 1 (00:51:59):
That’s exactly right.
Speaker 2 (00:52:00):
The FDA has since the one year or two years now, the FDA has a blackboard black box warning that some patients develop these symptoms and that removing of the breast implant then ameliorates their symptoms. Yes. They don’t recognize immediately that it’s due to, but that’s more a commercial issue I think, because then patients can sue the industry that it’s their problem. So that’s probably why I think the FDA is a little bit conservative and doesn’t say it’s caused by, but there is a relation and removal is the therapy of those symptoms. So that’s where we should try to get, it’s a little bit more difficult to demonstrate causality but that’s probably also because of the problems with finances Thereafter, if we can prove causality all these companies that make these things are bankrupt.
Speaker 1 (00:53:13):
I agree. So the way I teach my residents, you’re absolutely right is you know, have a normal patient, you do something to them and then now you have an abnormal patient. So you have to go back and see if that’s because you did something to them. Now of course, by chance it’s possible that by chance they got lupus symptoms and it’s unrelated and you’ll remove the Mesh and the lupus won’t go away. But doing that kind of detective work really helps. So we have about six more minutes. I just want to just summarize. As far as we know, every implant has the potential to have a patient react to that. And that could be metals, like a hip replacement or it could be hernia Mesh. We also know that it’s not very predictable in a very good way. If I check your blood sugar, I can predict if you have diabetes, but there’s no good blood test or any other genetic test currently that we know of that can predict if any single patient will develop a Mesh reaction. That is You agree with that so far?
Speaker 2 (00:54:27):
Yes.
Speaker 1 (00:54:27):
Okay. What we do know is potentially there are risk factors the same way an obese patient may be more at risk for diabetes, but doesn’t mean every obese patient will get diabetes. So people that at least I find to be at risk, and you’ve shown in your studies are tend to be women. They either have an autoimmune disorder or family members with autoimmune disorder. And among those could be things like people with fibromyalgia POTS, muscle activation syndrome multiple sclerosis, any of the other known autoimmune disorders like rheumatoid arthritis, lupus, psoriatic arthritis, et cetera. What else are risk factors?
Speaker 2 (00:55:15):
Allergy?
Speaker 1 (00:55:16):
Oh, correct. Allergies. So they have a lot of allergies. It could be environmental, it could be food, it could be medications if it’s more than just a simple allergy.
Speaker 2 (00:55:30):
Yeah. So
Speaker 1 (00:55:31):
Putting you at risk.
Speaker 2 (00:55:32):
We didn’t prove medication. So okay, in general house dust, hay fever, cats, dogs and nickel.
Speaker 1 (00:55:43):
Then they get a Mesh. And it really doesn’t matter what the Mesh is. In my experience. We actually published our data on why we removed Mesh and looked to see if polypropylene based Mesh is more likely to be removed than others. And we found, no, it’s basically 90% of the Mesh removal was polypropylene, but that’s also about how much all the Mesh is that’s being implanted. So that didn’t help. Even biologics you can react to. We’re learning more about that. And then can you go through a list of all the different symptoms that may be suggestive of Asia syndrome or Shoenfeld syndrome?
Speaker 2 (00:56:22):
Yes. So the first of all is chronic fatigue. Chronic fatigue that persists for at least three months. And then people are always tired already when waking up. Yes. So if you are fatigued and just because you do a lot, you recover the next day, but these patients do not recover. And that’s another factor that we call post exertional malaise. Meaning if they do something very much abnormal, so for instance they go, they have to go to a party until one o’clock on the night, which they normally don’t do, then they are exhausted the next day and sometimes even longer than one day. So those are three common phenomenon. Then there is in general sleeping problems that falling asleep is in general a problem. And then we have to muscle pain and muscle weakness. Yes. Switching of the muscles arms, legs, and eyes are twitching and we have to joint pains and joint pain is in general widespread.
Speaker 2 (00:57:41):
So there’s pain in nearly all joints with stiffness. And this go goes ahead sometimes with clear symptoms of small fiber neuropathy, meaning that even a little touch is already painful in these pains. And then we have pyrexia, meaning the flu-like disease that they constantly have. They feel hot. Yeah. Women say, okay, I’m now postman of partial. Yeah, that’s true. It may be just the foreign body reaction that is causing this. And there’s the cognitive impairment which with word finding problems, concentration problems, forgetting things. And then there’s this kind of severe sicker, which is remarkable so that you don’t make tears very well. So patients do have quite often burning red eyes in the evening, sometimes even have some sufficient problems sometimes and can have inflammation of the eyes. The dry mouth is causing swallowing problems and may go ahead with dental issues like gum disease and having cracking teeth.
Speaker 2 (00:59:14):
And then there is the more severe neurological problems that we observe in young females without any risk factors that they develop a stroke-like disease or a multiple sclerosis like disease, which is that they just cannot move a lack or that they have blindness for a short period. So those are very severe symptoms that we occur much more often in this population than in the normal population. Other factors especially very true for Mesh implants is irritable bowel syndrome, mono pains with diarrhea and or constipation. And we have the phenomenon that quite often occur in these patients, meaning that they have white numb fingers in the cold. But
Speaker 1 (01:00:04):
Yeah. And just to clarify, these are,
Speaker 2 (01:00:07):
And California’s always nice weather, isn’t it?
Speaker 1 (01:00:09):
<laugh>, these systemic symptoms head to toe. There are many patients that actually have hernia related problems or hernia Mesh complications where the Mesh is infected or erodes or wrinkles or it causes pain. That is not a Mesh reaction. Like we’re talking about the ASIA syndrome and Shoenfeld syndrome, that has another type of Mesh complication, but it doesn’t fall into this Asia syndrome where you
Speaker 2 (01:00:34):
Actually have but many
Speaker 1 (01:00:34):
Patients mechanical problem,
Speaker 2 (01:00:36):
But many patients have mechanical problems as well.
Speaker 1 (01:00:39):
That’s correct. That’s
Speaker 2 (01:00:41):
Correct. So then maybe one other factor is that so sorry, I forgot.
Speaker 1 (01:01:00):
And these symptoms occur within, in my experience, within days, weeks to months, rarely two years later. It’s usually early after the implant. It tends to be dose dependent. So a larger Mesh or multiple meshes may make you more prone than a small single Mesh or suture is less likely than all of the Mesh, which is a lot of suture. And for the majority of patients, Mesh removal is the cure. And for hernia Mesh, it’s almost always possible to remove Mesh. Almost always possible. There’s really rare, unlike TBT where it’s a very difficult anatomy. And when we remove Mesh, we make sure, at least I make sure those of us that do this for a living, that all of the Mesh that is removed. There was a question about like, well, what about a fiber here or there? Pretty much 9.999% of the Mesh is removed. So if you have a fiber lingering, I don’t know about that. But that’s not how we remove the Mesh.
Speaker 2 (01:02:09):
No. And we know for TFTs, for instance, many women do get partial T V T removed. That doesn’t help at all. It
Speaker 1 (01:02:18):
Doesn’t work. Yeah, it doesn’t work. No.
Speaker 2 (01:02:19):
So it should be as complete as possible. And the factor that I didn’t tell is indeed that allergies in general become worse after.
Speaker 1 (01:02:30):
Yes, that’s right. Other baseline. That’s another symptoms. Yeah.
Speaker 2 (01:02:34):
Get worse. That’s another symptoms. That’s
Speaker 1 (01:02:36):
Correct. Yeah. So before we end this Dr. Tervaert, do you see patients outside of Canada? And if so, do you offer video consultation? And is there anyone else besides you who has any experience that patients can go to outside of Canada?
Speaker 2 (01:02:54):
Yeah, so I see patients from all over the world, so patients are welcome. However, at present we have a problem with COVID 19. So it’s not possible now, but we hope to reopen again in any our future. I do some video consultations but I do that together with a doctor in the Netherlands is selecting then the patients. So we may develop such a thing with you if you want, but I want to have a doctor involved before I do a video consultation. So just a video consultation without any doctor. On the other hand, that’s a little bit of a problem. Of course, if I’ve seen the patient follow ups are all done by video or by telephone. Got it. So it’s only once that I want to see the patient. And a problem is that there’s few doctors who are doing this job. So Dr. Shoenfeld, of course the group in Tel Aviv has experienced, yeah, there’s a group in Spain, in Barcelona. But with respect to the Mesh problems, they always also refer to me. But yes, of course there’s more and more doctors who are having knowledge about this foreign body induced immune activation. But maybe that we are just a few of them now, but we will increase. That
Speaker 1 (01:04:42):
Is the hope. That is the hope. I truly agree with that. Yeah. So on that note, I want to thank you so much for your time. This is Dr. Towfigh with our amazing guest, Dr. Traver, who is one of the very few people that are experienced on the medical side to evaluate and help treat Asia syndrome or Feld syndrome in my specialty, we call it hernia Mesh reaction. This will be available to you on my YouTube, YouTube on my YouTube channel. So you can share it, rewatch it share with your doctors. If you want <laugh>, start spreading the news. Of course, I’m also available on social media at Hernia doc, on Twitter and Instagram. And this is all on my Facebook page at Dr. Towfigh. I want to thank you so much for everyone that was involved. Thank you. I hope that you all also get the help that you need. Thank you to Dr. Tervaert for his time and I hope to see you next week. Okay. Thank everyone, <laugh>. Appreciate it.
