You can listen to this episode by clicking here.
Speaker 1 (00:00:10):
Hi everyone. It’s Dr. Towfigh. I believe we are live on Zoom. The question is, are we live on Facebook? And I’m hoping that we are. If we’re not, we’ll repost it for you. My name is Dr. Shirin Towfigh. I am your host every week on Hernia Talk Tuesdays. I’m your hernia and laparoscopic surgery specialist. Welcome. Thanks for everyone who’s live on Zoom with me, and I’m hoping that you’re also live on Facebook. And yes, we are. Perfect. We are live on Facebook at Dr. Towfigh. Thanks also for sharing all your thoughts and questions with me. This is an amazing, amazing session because we have Noreen Wideman. She is a Mesh complication survivor and patient advocate. I’ve met her in person and I follow her at everything that she does. She comes to us from British Columbia in Canada. Is that correct?
Speaker 2 (00:01:13):
Yes, it is.
Speaker 1 (00:01:13):
Okay. And you, if you are someone who has been Mesh injured or have questions about surgical Mesh complications, she does run a very good Facebook page called Surgical Mesh Complications Information. So please all thank you and thank Noni for joining us. Hi.
Speaker 2 (00:01:37):
It’s, it’s great to be here.
Speaker 1 (00:01:39):
Are you really in British Columbia? I always thought you were on the east side.
Speaker 2 (00:01:42):
No, I’m a northern British Columbia. It’s really pretty snowy and cold up here right now.
Speaker 1 (00:01:48):
Oh yeah. I’m sure it is. My, I have family that lives in Vancouver and I love Vancouver, but I’ve been there when it’s cold. It’s not that as fun, but it’s beautiful.
Speaker 2 (00:02:04):
It is. It’s gorgeous out here today. Everything looks like a picture postcard.
Speaker 1 (00:02:09):
Aw, so beautiful. Yeah, we just get rains and people start, we are not meant for rain, and so when we get rains, we get potholes and people actually die when it rains here because the water and the mudslides cause a lot of casualties, and we’re just not a city meant to get that much water. Yeah. Well, I want to thank you for joining me. We’ve been talking for years, I think, when did I meet you? Was it 2016 or 2017 or before then?
Speaker 2 (00:02:46):
Thereabout, yeah.
Speaker 1 (00:02:47):
Yeah, 2015. Around then. I knew about you and I’d read a lot of your work, and I know what great things you do. Maybe you can give us a little brief about not only your story, but also what you’re doing with your story and how you’re helping people. And then we’ll move on to our topic, which is to talk about Mesh biocompatibility.
Speaker 2 (00:03:11):
Yeah, like you said, I’m a Mesh survivor. I had one of those nasty transvaginal meshes that did not agree with my body, and nobody had any answers for me of why, and I couldn’t understand what was going on with my body, why from the time I had it implanted, it was just kind of under the radar. My health just deteriorated. And within three years I was in agony and I couldn’t figure it out. And then I seen an advertisement for transvaginal Mesh lawsuit when I was trying to researching all my symptoms, and I hadn’t even equated it with any Mesh at that time. And then all the puzzle pieces just fell into place. And so I realized once I went on the internet, I wasn’t alone. I wasn’t a rare anomaly that this had been going under the radar for too long, and there were too many women harmed by polypropylene Mesh.
Speaker 2 (00:04:24):
So I started researching. Cause if nobody was going to give me the answers, I was going to find the answers. So once I started posting information, I would get lots of questions from women. And I realized that there were thousands of us who needed validation that we weren’t alone in this, and that we needed a support group of our own and we needed good information and not just anything posted on the internet. So then I steered my research into peer reviewed research that you doctors and surgeons put out. Yes. And I’ve been combing through it for years and bringing that not only to the attention of the women who are wondering what’s gone on with them, but to the medical community who seem to be oblivious to our problems. And if they weren’t oblivious, they were keeping it under the radar and quietly learning how to remove Mesh without advertising the fact that it was harming women. And then, yeah, go ahead. What
Speaker 1 (00:05:41):
Is your background where you were getting, doing all this research? Because it’s very easy to get caught up in information that’s fed by people with alternative motives such as agendas, lawyers, and industry. So how did you get involved in actually scientific research?
Speaker 2 (00:06:12):
It was, well, I’ve been a specialized care provider for foster children with really demanding needs and all kinds of abuses and stuff. So in that profession, I would keep up with materials on it and study. I’m a self-learner, so yeah, the quality of what you learn is the quality of the stuff you research. So, okay. That’s why I felt it was necessary to go into the science.
Speaker 1 (00:06:49):
It’s intense science, though. Most surgeons don’t even know about it. So I’m always impressed by the articles that you cite on your Facebook page. I read them. I actually learn a lot from what you post. a lot of those journal articles we don’t see are, it’s not surgical necessarily or general surgery. And so it’s outside of my natural world. So you find great articles. They’re usually high quality. You recently sent me something that you wrote, and I really, really, really enjoyed reading it. And that’s a little bit of the impetus. I’m like, why don’t I just have Noreen? I don’t understand. I should have asked her to come on ages ago. Because we’re two and a half years almost with close to three years with hernia talk, believe or not. Time flies. And then tell me about your Facebook group, your support group on Facebook.
Speaker 2 (00:07:45):
It’s constantly growing and now that the word has gone out, what we’ve learned from the lawsuits over polypropylene Mesh for pelvic fixes for women has translated over into the population of patients who have hernia problems. And then I would get criticized heavily by some people on Facebook that I was not doing enough for. The men at that time, I could not speak to their problems. I hadn’t studied it, I hadn’t experienced it. So my platform was on helping women who, usually the clinical studies, there’s a bias, there’s not enough women in the studies doing the studies, and there is a bias. And when they’ve done clinical studies, it’s mostly been on men. So for the first few years, my platform was to help women. But now that I kind of feel like I’ve done as much as I can in that area, I’ve expanded it to the hernia population too, because they keep coming and say, well, Mesh is Mesh. And I have to say to them, yes it is.
Speaker 1 (00:09:15):
Yeah, fantastic. And a lot of the challenges that we surgeons have is we’re not aware of the transvaginal Mesh world. We just know hernia Mesh is. And so when we think about transvaginal, we’re like, oh my god. Wow. Who thought of putting Mesh there? Obviously that would be difficult, but at the same time, the reverse is also true. The gynecologists, were not aware of hernia meshes and all the years and years of complications that we learn, we don’t put it against intestines. We don’t put it against the esophagus in certain areas. So there, there’s a lot that we learned that doesn’t necessarily get shared with other specialties. We’re kind of in verticals instead of horizontals. And then we saw all the, we were like, well, of course, so you’re going to have complications if you put mesh through the vagina. It’s not even you’re going, first of all, you’re going into a bacteria area
Speaker 2 (00:10:18):
Life.
Speaker 1 (00:10:18):
Yes. That’s the first problem. So as general surgeons, we were a bit shocked that someone thought that was a good idea. I’m sure those sorts are shocked that we think hernia Mesh is a good idea as well. And it’s all kind of an evolution. But a lot of general surgeons are very angry when there’s an equivalency between transvaginal Mesh outcomes and hernia Mesh outcomes, because we feel it’s different. But in many ways it’s the same in that it’s an implant. It does cause harm depending on how it’s used. And not every patient is the same as to how they react to these implants.
Speaker 2 (00:11:02):
And I find that is there has been a disconnect between general surgeons or general practitioners and surgeons and all the things, because medicine has got so specialized. You guys are all experts in one area, but you don’t connect the whole big picture. Correct. So that’s what I, I’m, I’m really disappointed with the disconnect because as a hernia surgeon, or even my gynecologist, the guy who did my surgery, he’s not going to see me after six weeks.
Speaker 1 (00:11:43):
Yeah.
Speaker 2 (00:11:45):
He’s not going to know what problems I encounter. And then if my general practitioner doesn’t the problems, because immunology is not his specialty, he has to pick up the puzzle pieces and then refer me somewhere.
Speaker 1 (00:12:04):
You’re right. And the more modern your education is, the more recent your education is, the more isolated it is from other specialties. So even in general surgery, the urologists don’t really do as much general surgery as they used to used to be. All urologists were general surgeons first, all gynecologists used to be general surgeons first. Now they’re their own specialty and don’t overlap much. Same with head and neck surgeons. They used to do two years of general surgery. They don’t do that anymore. Plastic surgeons even don’t do general surgery anymore. They go straight to plastic surgery. Cardiac surgeons, so much has changed. And what I love about what I do is that I seek out other specialties. You’ve seen me bring in urologists, gynecologists, radiologists, yes. Anesthesiologists. And I learned from them, and I use that to teach the residents because when the residents are in training, they get to go to different specialties within surgery, but not necessarily urology, gynecology and some of the other subspecialties. And I teach like this is why they’re doing this. For example, we had a lady with endometriosis, and that’s a major problem. It’s a major cause of pelvic pain. But if you’re coming with abdominal pain or a pelvic pain to a general surgeon, endometriosis is never on the top 10, top 10 list.
Speaker 1 (00:13:29):
So I try and teach ’em as kind of what I like about what I do, which is try to be more aware of what other specialties do. But when I’m in the operating room, I’m like, that’s a really cool instrument. What is the name of your instrument? Because it’s an instrument we don’t use. And it was developed for gynecologist for a specific purpose. But then I’m thinking, that’s a great one. I could use it for blah, blah, blah. I would never know such instrument even exists if I weren’t scrubbed in with a gynecologist for a combined operation. I’ll tell you also today, I spoke with a radiologist and really smart guy because he actually calls me after he does the MRIs for these patients with Mesh problems and groin problems to review. And he’s like, I have a question, et cetera. And then I said, well, because a Mesh is lower, he’s like, oh, I didn’t know that. So I had to explain to him how we put the Mesh in and where it’s normal for it to be and where it’s not normal. And then that helps him understand the surgery that we do, because the radiologists often don’t know what surgery we do. In fact, we got an award for a presentation where we at the RSNA is the largest meeting in the world, the Radiology Society of North America, specifically showing what Mesh looks like on imaging because radiologists have no idea. It’s like
Speaker 2 (00:14:54):
They don’t have any idea. Women are asking, well, what tests can show where the Mesh is, where it’s migrated to, what it’s eroding into? Yes. Is it crumpled, whatever. And all of the tests I went through, nothing showed anything. Yes. Period. Yes. They didn’t know how to read it.
Speaker 1 (00:15:18):
They don’t know how to read it. And they don’t know if what they’re reading is normal looking or abnormal looking. And industry comes up with new meshes every year. So the radiologist for sure don’t catch up with all the different implants in the world that are put in patients. So they’re, they’re not really aware. So we have tons of questions for today’s session. Okay. I’d love to go through them. Feel free to answer as many as possible. We probably won’t get through all of them. We have live questions. We have about 12 ques or 10, 10 or 12 questions that were submitted before today and many others. So I’m just going to start with some live questions already. Let’s see. Oh, there’s a lot of questions here. Men get Mesh implant illness as well as women, just to a lesser extent than women. I’ve been scientifically researching for six years on this. It’s great you’re having more patient on hernia talk. Okay. We need a multidisciplinary symposium to discuss. Have you had any symposiums that you attend? I know you’ve been working with government officials, but what’s been your experience about openness to discuss Mesh related problems, biocompatibility, Mesh reactions, et cetera?
Speaker 2 (00:16:39):
Well, I bugged Health Canada so much and sent them so much material and poke them constantly. That, and then submitted the research I did. I got appointed to as an adhoc member to the scientific advisory committee for Women’s Health in Canada. So I’ve been able to bring perspective whenever they discuss Mesh implants, they also brought other women in who had breast implants and so forth. So we’ve been able to have a platform to speak to the gaps in knowledge that they just don’t get.
Speaker 1 (00:17:19):
Yes. And are they open to these gaps of knowledge? Are they? Or do they question your expertise?
Speaker 2 (00:17:27):
They haven’t questioned my expertise. Actually. I usually get a pat on the back and the research I sent into a university study that was supposed to happen in British Columbia, yes. They study a new topic and then they do the research around it. So I put in my concerns about polypropylene Mesh and why and who would it affected. And that is the first patient initiated research that’s been done in British Columbia. So I give myself a little pat on the back for that one. And that’s a big
Speaker 1 (00:18:04):
Deal.
Speaker 2 (00:18:04):
It didn’t come up with all the results, but it did identify gaps in knowledge that still exist.
Speaker 1 (00:18:13):
That’s a big deal.
Speaker 2 (00:18:16):
And the thing that when I read most research is the final thing and more research is needed.
Speaker 1 (00:18:24):
Is needed. Yeah. That’s always our last comment. Always
Speaker 2 (00:18:28):
Last cut, caveat.
Speaker 1 (00:18:30):
Yes. Let’s go through some simple questions first. The most simple being, we’re going to be talking about biocompatibility of Mesh. So how do you define biocompatibility? And then as a follow up, given that studies show that even asymptomatic patients display local Mesh, Mesh, associate inflammation, and long after surgery, can you still say that permanent synthetic Mesh is biocompatible?
Speaker 2 (00:19:02):
I have to say the definition of biocompatibility is the ability of the implant to work with your body to resolve an issue and not cause any problems when it does. I’ve looked at the history of the definition of biocompatibility and before it boil down to it does no harm. Now they assess biochem compatibility by risk assessment. And when you look at it, I’m thinking the risk is born by patients.
Speaker 1 (00:19:48):
Yes.
Speaker 2 (00:19:50):
99% of the time. The other risk might be ligation against a manufacturer for failing to disclose all the truth. And the trouble with biocompatibility test is if a lot of them weren’t done, they were not done. We get into the five 10 [inaudible] process and the first meshes were used that were grandfathered, everything else was recalled. It caused too many complications. But in the meantime, to fast track medical devices and stuff to help people, there’s a shortcut. If your device is substantially the same as one that’s already on the market, you don’t have to prove all those tests that say your product stands on its own merit. You can get grandfathered onto the market and from one one predicate device, there’s about 87 grandfather grandkids once, and none of them had to prove biochem compatibility. And when that first Mesh went on the market, we didn’t have the testing ability that we do now. True. So
Speaker 1 (00:21:15):
You’re aware about the European Commission and their interests to pull back on a lot of implants, including hernia, Mesh implants in Europe several years ago, they said by I think 2022 that there was going to be this mandate, but with COVID and everything that’s been pushed back a couple years. So what they’ve said is, we’re not going to do this grandfathering in no meshes are allowed to be sold until there have been human based clinical trials that demonstrate its safety and efficacy. And that’s not true for most meshes out there. So many companies either are choosing not to sell in Europe or cannot sell in Europe because they don’t have the data, including the big companies. Some of them have to withdraw many of their very popular meshes. Do you think that’s a good step? And do you think the FDA should follow through with a similar process?
Speaker 2 (00:22:22):
I think the FDA should follow through with a similar process. If the predicate device fails, then I think the next one in line should bear the onus of doing the testing to prove their product and so forth. But none of that has happened. It’s rather disconcerting.
Speaker 1 (00:22:49):
More of the comments online says many pages are going to other specialists, and those doctors don’t know the problems with Mesh, which is true. It’s not widely discussed even in our hernia world. I was discussing it back when we first met, and I was kind of like there was, oh, that’s Dr. Towfigh. That’s Shirin. I’m talking. And now every meeting we have there is just serious discussion about not just hernia related complications, but now actually doctors are starting to talk about Mesh related illnesses. And some of them come to me and say, do you think I got this patient? Do you think this is what’s going on? And then what do you do about it? And they’re a little scared because this is a problem with a implant that they’ve been using for decades,
Speaker 2 (00:23:51):
And it must be frightening for them to realize that what they didn’t know and the systemic effects of foreign body reaction to Mesh. Yes. I don’t think researchers or doctors give enough respect to our immune systems and their ability to destroy things. But the problem with destroying Mesh or trying to destroy it is the pro products are body produces to destroy the Mesh sends our immune systems into a tail span and not only destroys tissue around the Mesh. When hydrogen peroxide is released to break down that polypropylene or any other Mesh that it deems for it, it creates inflammation. And if you go look and see what inflammation does to our body,
Speaker 1 (00:24:49):
Absolutely. Even heart disease is basically an inflammatory process. Yeah,
Speaker 2 (00:24:53):
Exactly. So I diabetes, I didn’t understand why doctors were so surprised when women said, I have chronic fatigue. I have rashes. I have, yes, I ache all over. And in the timeline, timeline of my life, I didn’t have this before I had an implant. And it slowly progressed afterwards. So it’s like suspect the obvious, please.
Speaker 1 (00:25:22):
Yes, exactly. Some more comments. Polypropylene is polypropylene no matter where it’s placed, any foreign body can cause foreign body reactions. That’s true. This includes synthetic, hybrid and biologic mesh. Johnson & Johnson Ethibond has admitted that their prolene, polypropylene Mesh causes chronic inflammation that may not even go away after the Mesh is implanted. This can be because Mesh degrades and particles of it are in the scar tissue and other tissues surrounding the Mesh. Also, removing a hundred percent of the Mesh is very complicated. And often men and women learn afterwards that a full Mesh removal that after their full Mesh removal, that Mesh was left. I do see a lot of patients that were told that Mesh was removed, but it wasn’t really all moot removed. There I go in. There’s still more Mesh in them. Yeah.
Speaker 2 (00:26:09):
Three years after my Mesh removal, I still had little pieces of Mesh coming out of my body and you could see where the plastic was cauterized. I’m sure they cauterized as they did my surgery. Yeah. So these little fragments had burnt ends on them.
Speaker 1 (00:26:26):
Well, what I do, a lot of Mesh removal and I teach the residents, it’s so important to know not only how Mesh is plays, but what meshes place. But what meshes different meshes are because they have different shapes. And so if you are not careful, you may think it’s a certain shape, but actually has an extra little wing to it or something. And so unless the specifics of all the meshes in the industry that are available, you may be removing Mesh thinking, you removed all of it, not aware that it has its extra tail or its extra
Speaker 2 (00:26:58):
Of the tabs. Extra
Speaker 1 (00:26:59):
Tag
Speaker 2 (00:27:00):
Are attached to bones. Just let go again.
Speaker 1 (00:27:02):
Yeah. Yeah, exactly. Here’s another question. My brother is a radiologist and said, many meshes are radio opaque and designed not to be seen on images. That’s actually not true. It depends on the type of imaging, but you can’t see them on x-rays. And radio opaque means you can see it on imaging where you don’t see them, see them. And let’s see. So another question one of our viewers currently is asking is, what steps did you take to begin your advocacy?
Speaker 2 (00:27:43):
Okay, the first step was to get noticed. So I put a placard on myself downtown Fort St. John in the middle of nowhere and said, this is not safe. And I prayed in front of the local newspaper office back and forth and back and forth, and
Speaker 1 (00:28:01):
This is for real.
Speaker 2 (00:28:02):
Amazingly, amazingly, women would stop and ask and say, oh yeah, I know somebody, or I have a Mesh problem, and nobody talks about it. So finally the reporter was curious and came out, and then she did a story and that started the ball rolling.
Speaker 1 (00:28:22):
That’s an amazing story. Did you say anything more than This is not safe.
Speaker 2 (00:28:30):
I said I was lied to. I was harmed. Nobody’s recognizing it. Nobody’s doing anything about it. Yes,
Speaker 1 (00:28:40):
Yes. What I’m trying to do with my platform on the patient’s side and on the physician side is educate the physicians so they are aware and then hopefully explain to the patients that we’re not evil people. We just don’t know. And I’m hoping that be talking with the surgeons and the doctors puts them in the nose so that they don’t look like they’re evil people. Does that make sense?
Speaker 2 (00:29:06):
It does make sense. Yeah. There are so many angry people and I really can’t blame them. And I keep telling them that only voices of reason will be heard. Yes. Voice. If you’re just yelling and screaming, you’re not going to have your voice amplified or find a platform where you can help. So you have to be reasonable. You have to look at both sides of the issue. And I really feel sorry for surgeons because you are a specialized niche and who has time to keep up with all the research other than someone like me who got lost my job caring for children, couldn’t do anything, was housebound for quite a few years that had time to research and the incentive to research and my work now is to try to get Health Canada and the FDA. I’ve, I’ve sent lots of material to your FDA to, to put a warning out that polypropylene Mesh is not as biocompatible as they once thought it was. And that a warning should go out to all surgeons, doctors, hospitals. And I think that would incentivize them to learn more, to understand what’s going on the wake up call, because we’re gone past blaming manufacturers now. And the patient base is looking at surgeons and doctors now. And that’s where the anger is getting directed now. So you kind of have to be a peacemaker in the middle.
Speaker 1 (00:31:00):
And so Mesh has been used, the current types of Mesh have been used similarly since the 19, late 1970s, early 1980s. I would say seventies. Why do you think they’re less compatible Now?
Speaker 2 (00:31:21):
We could be looking at our environment too, because we may have a toxin overload from all the plastics in our bottled water. Everything else, all the pollution we have, we may be over desensitized to a lot of things. The autoimmune disease rates are going way up higher than yes ever expected to be. Yes. But then you look at dental implants. Hip implants,
Speaker 1 (00:31:51):
Yes.
Speaker 2 (00:31:51):
You look how many things we’re exposing our bodies too. So yeah, I d And then I don’t think before people recognize the problems, if you can’t diagnose, if you’re not looking for it, you’re not seeing it. And if you’re not open-minded, not going to learn.
Speaker 1 (00:32:13):
There’s a TV show called 60 Minutes, I think you also get that in Canada. Yes. And they did an expose on transvaginal meshes and specifically showed one major manufacturer tried to hide the fact that they changed the formula of the polypropylene into one that was in layman’s term, more generic, less brand name. And as a result, it had more impurities in it. It’s like your drug dealer were, you’re getting the pure cocaine or the crack cocaine. It’s been cut with so many
Speaker 2 (00:32:52):
Different, and the ethical producers of the resin, I think it was Chevron Phillips declined to sell their resin for medical implant surgeries or products. They knew the properties of polypropylene and felt that it was, they didn’t want to get anywhere near having medical implants made from their reins Pure or not, or additives or whatever. So they declined to sell to them. So then manufacturers went looking and I think they found it in China. Yes, that’s right. The reins and bought up, stocked up on lots of it so that they wouldn’t have a shortage of that product to create mass. Their mass products.
Speaker 1 (00:33:37):
That’s correct. That’s correct. In the 60 Minutes episode, they mentioned that. Yeah, we were running out of resin and we needed more a higher volume manufacturer. And that’s why we went to this to China. My concern at that time, and I think that was 20, I think 20 18, 20 17 when 60 Minutes came out with that, that pretty Mesh market is at least 10, maybe a hundred times larger than the transvaginal Mesh market. So why, what would keep a company from doing that with their hernia Mesh resins? And I was told, but I haven’t confirmed that in the most recent Bellweather trial involving Bard or Beckton Dickinson, now that from Discovery, they did show that. Have you heard that?
Speaker 2 (00:34:34):
Yes.
Speaker 1 (00:34:35):
That they also, they
Speaker 2 (00:34:36):
Keep my eye on those trials. They changed
Speaker 1 (00:34:40):
The company that they were buying their meshes from away from Chevron and Phillips and Texas to some Chinese company. I believe it was also Chinese. And there’s concern that I think one of the reasons why we’re seeing it now and not before is there’s a change in formulation of the polypropylene.
Speaker 2 (00:35:06):
There could be, and they learned how to put antioxidants on polypropylene to reduce the inflammatory effect of it. But that’s only kind of putting lipstick on a pig. Cause it wears out. Your body slowly degrades that. And depending on the individual’s body response, when that anti-inflammatory is gone, that antioxidant is gone, then you are seeing 5, 6, 10 years down road reactions that you would’ve expected to see right away had that.
Speaker 1 (00:35:45):
We have mesh products made from polyester P V D F in Europe. Yeah. What do you think of these other non polypropylene Mesh implant products?
Speaker 2 (00:36:03):
Not much. Not much. Where one can have more tensile strength and take stress loads, creates more adhesions. The next one has more an inflammatory response to it. And then when they make these comparisons, they say, well, polypropylene is better than the P P T F. And I’m thinking, well, if it’s better than that, the other must be absolutely horrible because I know what polypropylene can do. I don’t think much of them really. Yeah.
Speaker 1 (00:36:39):
We published a paper where we looked at all meshes and their pathology, and regardless of what the patient’s symptom was, no symptom to severe symptoms. They all show a tissue level foreign body reaction. And when I spoke with the pathologist about it, I said, she was like, why are you shocked? This is, it is obvious. Any foreign body, if I take out a knee, a nail that was put into your hand from surgery, that’s caused a foreign body reaction, a hip implant, ocular lenses, et cetera. So the question is, why are some of these foreign body reactions become making people sick and others not, that we haven’t figured out yet
Speaker 2 (00:37:28):
That we haven’t figured out. That’s your patient selection. I’ve been looking at people that are predisposed to get autoimmune diseases. I mean, they’ve had genetic testing. Yes. They have HLA types that indicate they’re predisposed to get an autoimmune disease. So if they don’t adapt their lifestyle to prevent that, they’re at higher risk. And then I’m putting two and two together, and I think I’m coming up with four. I’m thinking, if you’re pre predisposed to an autoimmune disease in your family, yes, you are going to be a high risk candidate for any kind of implant. If you have allergies. If you have asthma, I do. You are not a good candidate. You’re in a higher risk category. Once again, yes. To correct for your body to interact with this implant in a proper way. And when it doesn’t. And those foreign body, giant cells in the later states, like in chronic inflammation, when they form around the implant, they’re putting out lots of reactive oxygen species into your body that degrades the Mesh faster, causes more inflation, which causes more ROS. Those reactive, reactive oxygen species.
Speaker 1 (00:38:58):
Yeah.
Speaker 2 (00:39:00):
So it’s a vicious cycle. It just escalates the degradation. In the meantime though, that inflammation is linked to premature aging, to developing lupus, arthritis, all these kind of diseases. So nobody’s given enough respect to our body’s immune system and what it can do, not only in harming the Mesh but harming our own bodies.
Speaker 1 (00:39:30):
There’s some discussion that we are exposed to more
Speaker 2 (00:39:38):
Environmental, toxic,
Speaker 1 (00:39:40):
Inflammatory environmental factors, whether it’s the plastic that we use to drink our bottled water or the foods that we eat that are from animals that are highly kind of processed. And if that makes it, because most of the complaints about Mesh reactions are coming from English speaking countries. So United States, Canada, Australia, and United Kingdom. My surgeon, friends from the rest of Europe don’t really see it as much. There’s complications, but it’s not like the patient’s getting sick.
Speaker 2 (00:40:20):
We ate so much processed foods and inflammatory foods and fast foods. We’re already putting ourselves at higher risk for a lot
Speaker 1 (00:40:30):
Of India. India, China. They’re not, they’re huge populations. They’re not seeing these problems as much, I should say, as much as much people who come to me from those countries. But not nearly as much as you would think relative to what we see. Here’s another live question. Are either of you aware of foreign body responses causing lung nodules or pulmonary granulomas? I have lots of other reactions from hernia Mesh, and this is the most recent complication I’ve heard of that actually. Lung changes.
Speaker 2 (00:41:07):
I’ve heard of it. And I’ve had patients on our support groups describe all kinds of things. And we’ve had Mesh advocates die of cancer. Our cancer rate is higher in our Mesh group. Our autoimmune disease rate is higher in our Mesh support groups because we’re the cohort of patients that had the hyperactive response to a foreign body. Yes.
Speaker 1 (00:41:38):
So has anyone studied your patient population from your Facebook group?
Speaker 2 (00:41:44):
They’ve just studied us on the mental aspects and not the physical, which was disappointing because yeah.
Speaker 1 (00:41:55):
So
Speaker 2 (00:41:55):
In order to fix one problem, you need to fix the other one first. Of course, they’re going to be depressed, they’re going to have brain fog. They’re going to be miserable until, and they’re in so much pain. My gosh.
Speaker 1 (00:42:09):
So my paper that’s coming out that finally it got accepted, it was so difficult to get it published because most reviewers from journals would say, oh, this is fufu. There’s no Mesh in plant illness. Even though I was giving them data, it finally got published or will be published. It got accepted
Speaker 2 (00:42:31):
Yesterday. Oh, good.
Speaker 1 (00:42:33):
But in that, we were able to narrow it down to certain repeated symptoms. People get hair loss bringing in the ear, visual changes, rashes, brain fog, difficulty sleeping, difficulty concentrating, tingling in the fingertips, swelling in the arm, in the hands and fingers and toes and so on. And that seemed to be a recurring theme. You don’t get all of those symptoms from Mesh implant illness, but it, it’s a syndrome. And then also what we noticed is that, like you said earlier, if you have an autoimmune disorder yourself or are prone to have one, let’s see a list of allergies, family members all have autoimmune, then you’re significantly more likely to fall into this category where you have it. But if you are interested, I would love to take all those symptoms and risk factors and have a survey sent for your group, and we could partner up and write a paper that outlines all of these symptoms to at least show the medical population. These are a syndrome of symptoms. So when someone says, my teeth are falling out, my hair’s falling out. I think it’s from the Mesh. They don’t say You’re nuts. They may say, oh, I think I’ve read about that.
Speaker 2 (00:44:03):
I did. I took an autoimmune survey template from from off the internet from doing some research, and I looked at the autoimmune stuff, submitted it through our group, and came up with the same results that Dr. Tervaert came up with, and I had sent him my paper and my linking autoimmune diseases with foreign body reaction to mess. Yes. And he said, brilliant. So I was smiling and roses that day. Yes. But it was almost word for word. We came up with the same numbers actually. Yes. The rates of complications, and yes, we would love, many women have volunteered to be studied, and we need that information from our group. Instead of what I found is when I ask, is there a link on ResearchGate? Well, then all of a sudden all this research starts happening and they research the old research. Really?
Speaker 1 (00:45:10):
Yeah. Just a review. Yeah, I get it.
Speaker 2 (00:45:13):
Yeah. It’s like, oh, that was painful to read. Oh, there is no link to this. And I’m thinking, you need to join our group. You need to read the posts.
Speaker 1 (00:45:23):
Do you suggest people get any certain blood tests?
Speaker 2 (00:45:28):
Yes. If you’re going to be a candidate for an implant surgery, I truly believe you should have the inflammation markers checked in your body to know what levels of inflammation or in your body before you have this surgery. So then at three months later, if the inflammation, if you’ve gone through the acute phase of foreign body reaction and then you’ve gone past the chronic stage and you should be on the healing mode, if your C P R levels are higher, then somebody should be investigating what’s going on. Because that’s a great indicator that foreign body response is not going to be transient. It’s going to continue and it’s going to put your implant ability to do what it’s supposed to do at risk and your general health at risk it. You’re going to have, you’re showing signs of systemic responses. So I truly believe, and I’ve asked doctors if they would consider doing this, and I’ve put it out there. So I am hoping that will happen.
Speaker 1 (00:46:42):
We’re coming up with a standard series of testing that can be used, and we’ll make that public soon once we kind of confirm that that’s the right set. I’ll work working with Dr. Tervaert and others. His name keeps coming up. He was a guest on our show early on and with hernia talk. So you may, yeah. For those that don’t know, you can go back and watch it. But I would say in my experience with patients, their typical blood tests, not HLA and others, but all the inflammatory tests and the autoimmune tests have been normal. Always normal. I have never seen a patient that has had an abnormal blood test. There may be some, but in my series, all normal. And so I think we need to look at more than just the standard autoimmune
Speaker 2 (00:47:31):
And
Speaker 1 (00:47:32):
Inflammatory.
Speaker 2 (00:47:33):
And there was a fibrin test too I was reading up on, and I don’t know how that
Speaker 1 (00:47:38):
Yeah, yeah, yeah. Let’s see. If five already had inflammation markers from blood tests, should this not have been discussed prior to my Mesh implant question for you.
Speaker 2 (00:47:52):
I think if you do have a higher level of inflammation in your body than the norm, you should question why and have a really good serious discussion with your doctor if you should proceed with your surgery.
Speaker 1 (00:48:09):
So based on my experience, based on my experience, I am no longer offering Mesh based repairs to people with known autoimmune disorders.
Speaker 2 (00:48:21):
Thank you.
Speaker 1 (00:48:24):
I try and figure out the least reactive way said in my population, there were plenty of patients with autoimmune disorders that were doing just fine. So it’s not like you’re destined to do poorly. No. And I take back where I said I no longer offer in those patients that are also candidates for tissue repair, if they’re absolutely not a candidate for tissue repair, then I have a very lengthy discussion with them about the risks and benefits and because we just don’t know. I can’t predict who is going to be that one person that’s going to react. And when they do react, it’s, it’s disabling. So I tend to be much more conservative in that patient population. But that said, that is a hundred percent currently not the standard.
Speaker 2 (00:49:13):
Yes, I know. And I wish it was.
Speaker 1 (00:49:17):
Yeah.
Speaker 2 (00:49:18):
I think when they give you a Mesh implant or they suggest one of any type, there should be a product sheet that goes out that says, detailed as your prescription medications, list every possible thing and have that patient read it and tick off every book box that says, I understand this. Then they are going to be aware of what can happen. So when things do start happening,
Speaker 2 (00:49:51):
They can do something about it. They’re not left in the dark wondering, is this from something else or is this from the Mesh? If the warning came out, look for this, this, and this, then you can do things to mitigate the problems you’re going to have. So especially if you can’t have Mesh removed, the doctors need to be linking up with immunologists so that the patients can check, have their glutathione levels checked. Because if your body’s been going with foreign body response forever and ever, your gluon levels, which gets rid of your toxins are going to be depleted.
Speaker 1 (00:50:32):
Yeah. Vitamin D as well. Yeah.
Speaker 2 (00:50:34):
Vitamin D, glutathione, msm, all those kind of things.
Speaker 1 (00:50:39):
Yeah.
Speaker 2 (00:50:41):
There needs some needs to be some mitigation.
Speaker 1 (00:50:45):
Okay. Noni, what’s your, here’s a question. What’s your specific group name? We have many Mesh groups that could do the same survey and study. There’s one survey published from 2020 where 934 women and men responded. And autoimmune diseases after Mesh were recorded to be 42 to 45% in women and five to 7% in men. Maybe we can discuss. I would love to see what you’ve done too. These are all on my Facebook posts for today’s Facebook Live. So you’ve got some people that would like to work with you as well.
Speaker 2 (00:51:21):
Okay. The surgical Mesh complication Facebook page, we’re up to, we made a milestone. We have 3000 members now, and it’s just going every day. New people coming on, and it’s not just looking for legal lawsuit information. It’s like, help, help who can fix me? And some of them are desperate and some of them are suffering so badly. So that group represents both men and women. So that would be the best group, I think, if you want to look at the whole picture. Yes. I think that would be the best group. Or there is another one that I helped get going years ago. It was called Mesh Problems. Yes. I don’t know how active they are or who’s running that anymore. I’ve just got too many eggs in the basket to keep going there.
Speaker 1 (00:52:19):
Going back to your comment, as someone mentioned that there should be an F D A information letter or given out. It says FDA needs to ensure a healthcare provider letter, which they’re already doing for the transvaginal meshes. There has not been anything yet with hernia measures. I published a paper looking at social media discussion about these problems and how it may influence what the F D A does. And I’m thinking that we’re kind of in that situation now with the European Commission and with the patient driven and somewhat law suit driven discussion about these problems, that the FDA’s going to make some type of major change on how they categorize Mesh hernia meshes specifically. Yeah.
Speaker 1 (00:53:18):
Dr. Towfigh, there are very few Mesh removal surgeons. How can we share with other surgeons that only implant Mesh, only implant Mesh that they also need to train on how to remove it? I’ll tell you, it’s complicated. And most people who implant Mesh, that’s fairly easy compared to removing Mesh because removing Mesh is not just the surgical decision to remove Mesh, but also the clinical decision as to who needs to have the Mesh removed. And now that we remove the Mesh, then what do we do? Do we leave you with a big gaping hole in your belly or are there techniques to close it? So I actually don’t want everyone to remove meshes because you’re going to get a lot of people that are maimed. And we know from the transvaginal Mesh world, how many women are destroyed by Mesh removal surgery that’s gone wrong. So the good news is more and more people are interested in hernia surgery as a subspecialty within general surgery. And removal of Mesh is part of that training. So that’s the good news that more people are interested in specializing. But the average surgery, the implants Mesh should not be removing Mesh. I disagree with that. That’s a good thing.
Speaker 2 (00:54:32):
And they should be specialist in implanting too. It’s just not a general surgeon thing. It shouldn’t
Speaker 1 (00:54:41):
Be. Yeah. I don’t think that’s ever going to happen.
Speaker 1 (00:54:46):
Even with the current number of general surgeons we have, there’s a supremely long waiting list of hernia surgeries that remain to be performed. If you look at any system that’s government based in the United States, hernias are number one list of five year waiting lists in some of these county based and wow state based waiting list just for hernias. So unless there’s some miracle, and a lot of people really want to do hernia surgery, which is, I doubt it. There’s always going to be a deficit of people available to even do hernia surgery. So I think they’ll be lovely for only the specialists to do hernia repairs. I don’t think that’s reality. a lot of lot more questions. Let’s see. You should do some of the ones that were submitted. I feel guilty for the people that submitted. Didn’t get it done Here. Here, I’ll show you this one. This patient’s having surgery soon, he says, and I know it’s he. How do we know if we are not biocompatible with a certain Mesh? I’m scheduled to have two hernias repaired with mush. How do you know?
Speaker 2 (00:56:05):
It’s a gamble. You have to have a really good discussion with your surgeon. People have, different doctors have implanted a piece of polypropylene under the skin of a person to see if they react. That does not always work well. Cause the reaction is dose dependent. Poly poly being sutures have never caused a lot of problems for people because it’s a small amount. It’s a single filament. It’s not a Mesh, so there’s not a lot of mass of it. It’s like a bee sting. Sometimes one bee sting will kill you or some people can tolerate 20.
Speaker 1 (00:56:49):
That’s a great analogy. That’s a great analogy. Yes. And some people were okay with bee stings before, but now they’ve been stimulated by the exposure. Yeah. Yeah. I’ve had patients that did fine with their first and second hernia pair each time adding Mesh, and then the third Mesh was a big piece and complete destroyed his life. The repair was fine. It’s just their whole body reacted to it. This whole Mesh implant on this. Yeah, yeah,
Speaker 2 (00:57:17):
Yeah. And it’s funny because you say Mesh implant illness, when you go and do lots of research, you’ll find out it was called human adjuvant disease as much as the same as Asia of implant syndrome. And now the other, so the link in all of those is the autoimmune reaction to foreign body implant. So more respect has to be played paid to foreign body response, which is the reason for all this biocompatibility testing. And when it wasn’t done and it wasn’t done thoroughly,
Speaker 1 (00:58:02):
Yes.
Speaker 2 (00:58:04):
That leaves a lot of people at risk.
Speaker 1 (00:58:06):
Yeah, I agree. We’re going to end with one more question because I really want to know the answer to this. That’s question that was submitted. It says, I hope Noreen had the time to comment on the Canadian government’s response to the petition she initiated regarding synthetic Mesh implants that was presented to the House of Commons by Martine Shields member of Parliament Bow River in 2018.
Speaker 2 (00:58:31):
Yes. I did get support, and that’s when I ended up getting put on the scientific advisory committee for Women’s Health. So yeah, they promised to do some stuff. They did. They banned the use of Mesh for prolapse repairs. Okay. Done vaginally. They put out a warning that transvaginal meshes were not as safe as once thought. However, they did a four year study on the use of mid urethral f slings for stressed urinary incontinence and came back that they figured it was safe to do. So I asked for every article that supported that decision and I got 142 of them, which many of them, if they were used for a study assessment by the FDA, they would’ve been thrown out because they were not relevant. I don’t care how popular the method method is, I want the biocompatibility test done. Yes. So we went through all these. They found it benefited more than it hurt to go on and on and on. But none of that research focused on biocompatibility tests that should have been done first before they did clinical trials.
Speaker 1 (01:00:01):
Yes. Well, this has been amazing. I follow you, of course. I learn a lot from you. I love that you send me articles, especially those that you’ve written, which I think are such high quality. And if anyone wants to learn more, thank you. I highly recommend that they go and just read everyone’s posts and see what other people are saying about their illnesses. I specifically wrote this last article to introduce the term Mesh implant illness as an actual specific problem with meshes as part of the Asia syndrome umbrella of things to mirror what we’ve seen with breast implant illness, which has been validated as well. So is your Facebook group public?
Speaker 2 (01:00:50):
Yes.
Speaker 1 (01:00:50):
Perfect. So
Speaker 2 (01:00:52):
They can read on it and they can join. They have to ask to join, but it doesn’t, their post won’t show until they’re a member, but they can read everything on there that’s already there.
Speaker 1 (01:01:02):
Got it. Got it, got it, got it. So again, that’s the surgical complications Facebook page. Yeah, it has a longer name actually.
Speaker 2 (01:01:13):
Yes, it does. Going off top the top of my head right here. But it, yeah, they’ll find it.
Speaker 1 (01:01:22):
Okay, perfect.
Speaker 2 (01:01:23):
Surgical complications. Yeah.
Speaker 1 (01:01:26):
Yeah. I have it written down here. It was on my first slide. It’s a surgical Mesh complication information website or Facebook page. So I want to thank you for your time we went over, but that’s what happens when we have amazing guests and tons of questions. There’s about 50% of the questions, which we didn’t answer. I hope you can go to my Facebook Live for this session and read it because there’s some really, really great comments that are directed for you and most of them thanking you, but also giving you ideas on what to do. So thank you, Noni. I really, really appreciate it. Thank you. I hope to see you at a conference.
Speaker 2 (01:02:10):
I hope so too. I hope I get better at speaking. And if we could get in there, and I would love to go with Paula Goss because she does the patient aspect. So Well’s great and she confidence my research background, I think we’d make a power team.
Speaker 1 (01:02:25):
She’s great. Maybe we’ll get both of you into a conference. That’ll be really great. Every third year we do a joint conference between the American and European Hernia Society. So maybe we can do that. Have you both at that session.
Speaker 2 (01:02:40):
Okay. That would be awesome.
Speaker 1 (01:02:42):
Thank you
Speaker 2 (01:02:42):
For giving me a platform.
Speaker 1 (01:02:44):
Thank you. I appreciate you. That ends us for tonight’s Hernia Talk Live session. We are here every Tuesday on Hernia Talk. Tuesdays join me usually 4:30 PM Pacific, but sometimes for our non-North American colleagues, we switch that out a little bit. Remember this and all prior Hernia Talk Live sessions are archived on my YouTube channel at Hernia Doc. Please subscribe to that. You’ll get to watch these and share them. Thanks everyone on Facebook at Dr. Towfigh. Follow me on Twitter and her and Instagram at Hernia Doc. I love you all. It’s been great. Thank you so much. And Noni, really from the bottom of my heart. Thank you so much for everything you do. I really appreciate it. Thank you. You’re an amazing guest. You take care. Bye-bye.
Speaker 2 (01:03:34):
Bye-bye.
