Episode 127: Mesh Implant Illness | Hernia Talk Live Q&A

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Speaker 1 (00:10):

Why. Hello everyone. I hope you’re all here. We had a little glitch in our system. My name is Dr. Shirin Towfigh, I welcome to Hernia Talk Live. I’m here with you every week. We have another Tuesday event with you all. Welcome to what I think is the one and only best hernia discussion online. And this week is going to be extremely special because we will be talking about a new paper of mine that just recently got published. It’s called, it Discusses Mesh Implant Illness. Here’s the paper. The title is Patients with Systemic Reaction to Their Hernia Mesh, an Introduction to Mesh Implant Illness. So we will be talking about Mesh implant illness today and I hope that you come with all your questions because we already have tons of questions that have been submitted and I know that there’ll be even more live questions based on the discussion online.

Speaker 1 (01:09):

So let’s get started. As many of you know, I’m a hernia surgeon. Most of what I do, I would say 99.9% of what I do is related to hernias and hernia repairs. 80% of what I do is revisional. And so over the years I’ve been seeing a specific patient population that is definitely different than what I’m used to seeing. So I’ve been in practice since 2002, so 21 years now in practice. And I was trained to do hernia repair laparoscopically, open with and without Mesh, mostly with Mesh. But I did get some good teaching without Mesh as well. And over the years as a hernia specialist, I’ve learned to do all the different types, laparoscopic robotic open with Mesh without Mesh and so on.

Speaker 1 (02:05):

It wasn’t until, I’m going to say around 2008 ish where I started noticing that people are coming with a lot of kind of Mesh complications that I wasn’t seeing before. Now granted, my practice was very different. I went from more of a county-based practice to a private type of practice, community practice, and it it’s possible that as a county type surgeon, I wasn’t having that intimate one-on-one discussion with patients. It was mostly a teaching based hospital. Whereas when I moved into a more private type practice, I had more one-on-one interaction with the patients. So I got to know their stories much, much more in depth. And anyway, my point is this, since around 2008, I started seeing more than just hernia recurrence. So most people who thought talk about hernia complications related to Mesh, it’s like a Mesh infection or a mechanical folding of the Mesh.

Speaker 1 (03:21):

We call that meshoma. Oma as in like ball. Meshoma, balled up Mesh or a ball of Mesh. And the other major complication you can see with hernias, it’s just a recurrence that’s the most common. And over time, the term chronic pain was being used so people would have chronic pain, but typically the most common cause for chronic pain would be a recurrence. The second most common cause would be some mechanical injury, either to the nerves from scar tissue or by the surgeon or the Mesh would kind of ball up and mechanically cause a problem or you would have an infection. So those are typical reasons for chronic pain. We started seeing people having pain from the Mesh itself. In other words, their body just did not seem to accept this foreign implant. Now we use foreign implants all the time. Every single joint replacement done for arthritis and other reasons is an implant.

Speaker 1 (04:33):

Every single operation for like let’s say lens replacements for cataract surgery and there’s millions of cataract surgeries done here involves an implant spine. Surgery involves implants. We do a lot of like women who get IUDs, that’s an implant. It’s removable, but it’s an implant. Pacemakers, stents for cardiac disease, those are all implants. So as an industry in medicine and surgery both, we are used to putting in a lot of implants and the assumption is by the time it gets to the surgeon to put in the implant, the studies have been done to test everything. Now that said, sometimes complications and reactions are very, very rare and therefore whatever study is done initially will not show it because the study is done with hundreds, maybe thousands of patients, but not millions. And so you may find zero to one patient at the most in these studies and that would not be a clinically significant complication and therefore would not be noticeable until you start exposing millions of patients to these implants.

Speaker 1 (05:53):

So it’s not uncommon for a product to be approved and then later on find out there are problems with it. So this brings me to this, my paper on Mesh implant illness. So since, let’s see, this is just my experience since 2013, but basically what we notice is that we’re seeing more patients who need their Mesh removed not because of the other complications. So chronic pain, Mesh infection following up of the Mesh or hernia recurrence. But we started seeing the subset of patients that are requiring the Mesh removed because it seems their body itself is physically reacting to the fact that they have a Mesh in them. Now what does that mean? We actually published on this several years ago on our paper why we remove Mesh and we found that we’re seeing a increasing trend of patients requiring Mesh removal due to what we now call Mesh implant illness.

Speaker 1 (06:57):

And it seems to be on the uptick, whereas everything else seems to be flat. And this was published I think four or five, five years ago maybe why we remove Mesh and we said, okay, well let’s look at the pathology and when we take out these meshes, what does it look like? Maybe that will kind of give us an idea of why these patients are reacting. And we found no difference in the Mesh pathology once the Mesh was removed from a normal patient who has Mesh removed. So if you have a hernia recurrence or a meshoma or a bald up Mesh and you have the pathologist look at the Mesh implant versus someone who’s having a systemic getting ill from the Mesh and the pathologist looks at the two meshes, they look exactly the same. You can’t tell based on typical evaluation on pathology, whether what that the patient’s Mesh was no different.

Speaker 1 (07:55):

And you can’t really see different findings of the Mesh like eosinophils or other things that are consistent with let’s say allergies. So we actually thought that was interesting. Well, okay, so we can’t look at the pathology to confirm that the patient is reacting to the Mesh. Maybe we can test patients to see if they have reactions to Mesh. And that’s that paper is hopefully going to get published and has already been presented at multiple conferences and we looked at allergy testing, maybe allergy testing we can figure will give us a little bit insight. And we found allergy testing also highly unpredictable to figure out who will react to Mesh and who will not. And I use a term Mesh broadly because if you read our paper, we had patients with polypropylene Mesh in them, polyester Mesh, biologic Mesh, human cadaver Mesh, animal cadaver, Mesh hybrids with suture as well as cadaver tissues, P T F E, which is like goretex products.

Speaker 1 (09:02):

So there was no Mesh type that was free from reaction by at least one patient, which means that now we have to figure out, okay, at this point we don’t have a good way of reliably predicting who reacts to Mesh, but what are their symptoms? At least we can identify people who can benefit from Mesh removal and then looking at that subset work our way backward and say, okay, how common is this population from within itself? And use that information maybe predict. So I’m going to say that we don’t know enough. Our paper is very, very preliminary. It’s one of the very few papers out there that says anything about Mesh implant reactions. In fact, fun notes. There’s another paper that was published in a different journal that actually rejected our submission. We had to go to another journal to get it published. They rejected our paper saying there’s not enough data to support what you’re trying to claim in your paper.

Speaker 1 (10:26):

And in the same month, this month, that same journal published a paper that says we don’t have enough data to support whether Mesh causes autoimmunity or not. It seems like silly. On the one hand, the journal publishes a paper claiming there’s not enough data. On the other hand, the same journal doesn’t want to publish the data to support that. It just doesn’t make sense to me. But anyway, I digress. The good news is we were able to publish as an open access so that all of you can read the paper yourself. You don’t have to pay extra for it and you can thank the European Hernia Society for that because they were very, very supportive in this process, very supportive. The surgeons for the European Hernia Society were amazing and really thought this would be a valuable research project. So let’s see. I have a lot of questions here.

Speaker 1 (11:25):

Hello, welcome. Thank you. And I need Inguinal hernia and I’m scared. I understand. I do not want people to be scared. By the way, hernia surgery is a very broad subject. There’s tons of surgeons that can help you. We have a growing number of hernia specialists. Treat it like a serious problem, find hernia specialists and figure out what’s best for you to have done. The vast majority of hernias operations are performed perfectly fine safely. Patients do well, they go back to their normal lives and are healthy with without complications. The vast, vast, vast majority. And I know if you go online and you read what’s online, it may sound like the direct opposite, but I do these operations on a weekly basis and I don’t have patients lining up outside my office saying they’re in pain for my surgery. So just know that it’s, it is very, the likelihood you’ll do well is highly, highly likely and thank you for the research.

Speaker 1 (12:37):

Appreciate it. So here’s a question I’ve been told. PAX program Mesh is not removable. Completely untrue. I just removed two of them last week. So I have had triple neurectomies nerve blocks and veins tied off and ablations. So let me address this because I’m dealing with another patient who also had prior X Mesh and also got neurectomies. Not all patients need neurectomies. In fact, most do not. So if the first answer by your surgeon is, oh, you need neurectomy or nerve ablation or nerve whatever, think twice about doing it. That may be the right answer. But what I see a lot is surgeons are very uncomfortable removing Mesh and so they tell the patients it’s not removable, which is completely false. I have yet to see a Mesh that I cannot remove or that I have not been able to remove and I remove a hundred percent of the Mesh that I see.

Speaker 1 (13:33):

I do not leave do partial Mesh removals. And I’ve had patients that have unnecessarily had their meshes, their nerves cut and that’s not a necessary operation and therefore I don’t think it’s appropriate to just cut nerves because cutting nerves doesn’t actually get rid of your pain. It just makes the area numb. And that doesn’t mean that that will get rid of your pain. If let’s say you have a bald up Mesh and you cut the nerves, that bald up Mesh is still there, you’re still going to feel the ball up Mesh no matter how much nerve cut out where in Pennsylvania, if you’re actually a fan of mine and you watch me online, you see I’ve had multiple surgeons from Pennsylvania that I’ve interviewed, so go back to my archived videos and you can see it. Why are there so many lawsuits? Well, as you know, the Mesh industry is very rich. There are multiple very, very huge companies. And so the lawsuits are there for two reasons. One is they’re suing the Mesh companies because it, it’s a financially very profitable to do. And secondly, because the number of patients, not the percentage, but the number of patients that can be plaintiffs in these are quite high. And so that makes these class action lawsuits, which are even more profitable. So I’m sorry to say, if this were not profitable and there were still tons of patients being hurt, there wouldn’t be any lawsuits. It’s purely a financial decision.

Speaker 1 (15:18):

Where am I? Are you kidding me? I’m in the Beverly Hills hernia Center, which is Beverly Hills, California. Just follow me and you’ll have all that information for you. Next question, nerve pain Since implant of second upper Mesh under the xiphoid had sutures removed as per our disease still in pain removal of Mesh, I’d have to re-review that. There’s so many details as to type of Mesh quality of Mesh, how it’s changed or not changed based on any prior operations you’ve had done. I’m not going to answer any more questions with, ask me where I’m located since it’s all over my Facebook page. Okay. These procedures were done to help with the pain, okay, we’re talking about the nerves, the nerve transaction, neurectomies and nerve ablations. Three years after the implant, when I had the neurectomy done, they found lots of inflammation, scar tissue in the inguinal area and I learned that the doctor left a lipoma in the inguinal canal before placed in the Mesh.

Speaker 1 (16:26):

Well, interesting data. First of all that can be identified on imaging. You don’t need surgery to confirm that. And it’s possible if you had a lipoma that was not fully removed, that that could be the cause of your pain from the hernia repair. It has anything, nothing to do with your Mesh or the nerves. You just need that extra fat removed. That’s why it’s so important that you get a full evaluation by a hernia specialist that’s thoughtful, detailed and comes up with a good plan and not just, oh, we’ll just cut your nerves up. What Mesh would you recommend? There’s no perfect Mesh. There’s a lot of good meshes out there. It’s different needs for different patients. And so we tailor the care to our patients. The surgery center lost the idea of the device in my medical records is unable. I am unable to sue for Mesh rejection. I would focus on getting better lawsuits make you zero money as a patient if you’re the lawyer that you’ll make a lot of money. But if you look at all the websites that talk about patients experiences with lawsuits, they’re getting a couple hundred dollars. So focus on getting yourself better. Physio Mesh almost killed me in eight days and it took Ethicon six years to remove it from the market. I haven’t been the same since 2010, 2010.

Speaker 1 (17:51):

Physio Mesh was not on the market in 2010. Let’s see. Thank you. I learned after finding Dr. Tervaert breast implant, F D A meeting speech at the same time a friend with implants having similar issues. Is this the same thing? So good question is, is Mesh implant illness the same thing as breast implant illness? Just different part of the body. Short answer is we don’t know. Most likely yes. And if you look at the symptoms that patients are presenting with, what they’re presenting with are symptoms from head to toe shortly after the implant. That could be the breast implant. Some people see with dental implants and other implants. I specifically am interested in the Mesh hernia, Mesh implants and term. I made the term Mesh implant illness to kind of represent our sister illness, which is breast implant illness. But all of this falls under the umbrella of Asia syndrome.

Speaker 1 (18:59):

You’ve heard me talk about that before. We’ve had a whole episode with Dr. Tervaert about this. You can go back to the archives and listen to it, but Asia syndrome is an acronym, A S I A and it stands for autoimmune or autoinflammatory syndrome induced by adjuvants, A S I A. It’s it was coined by Dr. Yehuda Shoenfeld. He’s a very talented, super intelligent rheumatologist out of Israel. You can read his paper specifically described it. I belong to a group of his where we meet every week and we talk about Asia syndrome in a variety of sim places. Even the COVID vaccine, which is an implant. It’s an injection into your body. The COVID vaccine induced a lot of Asia syndrome symptoms. So which, what are these symptoms? Let’s start from the head going down the toe, headaches, brain fog, memory loss, poor concentration, visual changes, often blurry hearing changes often with ringing in the ear, dental caries and dental problems, feeling hot tingling, the fingertips or the toes, joint pain, joint swelling, sweating at times, nausea, bloating, hair loss. So these are all, did I mention brain fog? These are all symptoms that were pretty common. Not all of them in the same patient, but commonly mentioned in our patient population. And if you go read about breast and plant illness and other Asia syndromes, you’ll, you’ll see the same going on there. It’s, it’s often quite devastating for the patients. It’s life altering. Many stop working because of the inability to concentrate. They can’t sleep. That’s another one is sleep dis disturbance.

Speaker 1 (21:15):

And what we notice is that these symptoms occur pretty soon after the implant. Some immediately some within the first most within the first three months, almost all within the first year with some few exceptions. And then once the implant is removed, the majority of them are improved or resolved within the first three months after Mesh removal. So we found two thirds of them were pretty much cured within the first three months. And that means a third or not unfortunately. And is it because that one third doesn’t really have Mesh implant illness or has the body affected, has the implant affected the way the body reacts so much that it’s going to take longer or will never return to normal? It’s unclear. Again, I don’t claim to be an expert in this. I’m just presenting our data and I’m meeting with rheumatologists, allergists and other surgeons to learn more so that I can learn more and that will help my patients.

Speaker 1 (22:38):

But I’ve found that a family history of autoimmune disorder like lupus, rheumatoid arthritis, it could be chronic urticaria, mast cell activation syndrome, Ehlors Danlos syndrome, vitiligo, Hashimotos thyroiditis. These are all autoimmune disorders. Psoriasis, family history or personal history to me is a red flag. Doesn’t mean that you can’t have Mesh in you. In fact, we had plenty of people in the non Mesh implant illness portion of our study that had autoimmune disorders and did just fine. So we can’t predict currently who will get Mesh implant illness. However, in my current practice, if you are at considered to be higher than average risk, I do discuss using a non Mesh alternative. And in some case, if you can’t not use a Mesh, then I try and use the least inflammatory meshes, which are these hybrid meshes that we have. But like I said, even those meshes and biologic meshes, we’ve had people react to them.

Speaker 1 (23:51):

Here’s some more comments. So thankful for you and your team publishing this paper to draw more attention to this very real problem. Happy we could read it. Thank you. I hope no one gets a triple neurectomy close to the spine. Agreed. That’s called laparoscopic triple neurectomy. It causes deprivation, injury, bulging and atrophy of the muscle which can never be treated or improved. Also agreed. I mean technically you can have application but you need Mesh for that. And if you had that in the face of not needing Mesh, then that’s a horrible problem causing me problems when getting my Mesh removed. Thank you. Can all inguinal Mesh be removed even if placed under muscle? Yes. Does your paper have discussion on autonomic dysfunction symptoms before and after surgery? So not everyone had autonomic dysfunction. That’s, but we did have patients with pots, which is postural orthostatic tachycardia syndrome.

Speaker 1 (24:46):

It’s an autonomic dysfunction. It’s in the same world as Ehlors Danlos syndrome, muscle activation syndrome. Some people endometriosis, so people with pots. I I’ve had patients with pots. I don’t put Mesh in them anymore or try not to. And there were patients who developed POTS after the Mesh. Yes. How does a retained lipoma cause pain? So depends on the situation. If we’re talking specifically about retained lipoma, that means you had surgery for hernia, but the lipoma was left in place. So before the hernia surgery, you had a canal in the groin with a lipoma or a piece of fat in it and that fat would go in and out and it would cause symptoms and that is why you had the hernia surgery. If you have a hernia repair with Mesh and you place the Mesh, this is usually a laparoscopic issue. You place the Mesh to cover or close that hole, but you don’t take out all the me, all the fat, the lipoma.

Speaker 1 (25:51):

Then what you end up doing is now you’re trapping that fat in the inguinal canal, whereas it used to be moving and mobile, so you’re actually now shutting it into a closed space, which makes the pain even more. Do you offer your patients the option of non Mesh repair? Yes, all the time. That’s my whole tailoring motto. I feel that not everyone gets the same hernia repair and if you’ve watched me long enough, you would know know about all that I got bilateral hernia surgery. When should I start exercising and what should I do is exercise depends on what your surgery recommends for my patients. I tell them to immediately return to exercise without restrictions. I’m almost, I’m focused on getting better. I think that’s why I’ve received so much help. Yes, no money can replace our health and wellbeing. I recommend patients say focus on the real issues.

Speaker 1 (26:52):

Yes, agreed. I feel like people want to just go straight to lawsuit and they forget that they need to actually get themselves better. Sleep deprivation. Yes. Rash? Oh yes, rash, itchy. I forgot to tell you about that. We actually highlight that in our paper is rash and the rash is not, the rash is not where the Mesh is. It’s random be on your neck, your chest, wherever and your hernia separate. So that’s really interesting too is these rash and the patient’s got a dermatologist, no one can figure it out and you take the Mesh out, the rash goes away. So I have great pictures in my article where it shows specifically before and after of one of our patients with their rash. But yeah, and to be very clear, Mesh implant illness is systemic or total body reaction. We’re not talking about people that have localized pain or localized problems to their hernia repair.

Speaker 1 (27:51):

That is not Mesh implant illness. That is a local surgical problem where I’m talking about are when it completely overwhelms the implant overwhelms your body with inflammatory signals and your body reacts to it with this kind of immune system to try and get rid of it and that destroys you. Here’s another comment. Now I realize I had Asia syndrome, 98% of my symptoms have gone since removal eight months ago. That’s great and I hope that you share that story a lot and that your surgeon knows about it. Even after removal of absorbable Mesh, it can cause permanent damage to the autonomic nervous system slowly detoxing. I am slowly detoxing and trying to retrain the system to mitigate whatever I can. I’d love to help in research efforts. Thank you. So our next research project in this realm is going to take a while before we get approval for it, but is to survey all of you all who have some sort of Asia syndrome to see exactly what are your symptoms, when did it happen after your implant, how many of you got better if your implant was removed and so on.

Speaker 1 (29:07):

So stay tuned. That’s a collaboration we have with many others like you in trying to learn more about this problem. Oh, that’s a good question. How can the non-believers remain non-believers when there’s resolution to many problems once the Mesh is removed? I’ll tell you why, because I get this all the time. First of all, they don’t see these patients and half the time when the patients come to them, they brush it off as, oh that’s just being nervous or the pain will get better. I give it, yeah, the symptoms will get better. That rash is not that not related. Your nausea is not related and so on. And so they brush it off and don’t really delve into, oh you have nausea. Oh you have hair loss, oh me, how about your joint? They don’t start asking those questions and I hope to make a soon make a very detailed questionnaire that can be standardized that everyone should fill out to so that all the surgeons can be educated about what questions to ask and hopefully help people better.

Speaker 1 (30:13):

But yeah, literally it took me four different journals to get this published because they all rejected it as being kind of not scientifically. They’re like, you don’t have enough patients. I said, yeah, because we don’t see that many patients. It’s kind of a rare situation. I have the most number of patients you’ll ever find. So it is. Then they said, well how do you know? I said, well, because everyone undergoes full workup with dermatology, gastroenterology, rheumatology, trying to figure out other reasons for their symptoms. The patients were normal before the hernia Mesh implant and then we took out the implant and they became back, went back to normal two thirds of the time. Okay, well that’s not good enough. We need stronger data, whatever. So it took us four different journals to finally get this published so everyone can read it because unless you publish something, no matter how many talks you give, which we’re giving talks a lot, people were inviting me to give talks.

Speaker 1 (31:18):

But how many people are in the talk? 30, a hundred, 300. Not thousands and thousands. We already have 1500 downloads from this one article. It’s only been a week. So my point is publishing is super important. Just talking and going on Facebook online et cetera is not enough and it’s very difficult to get peer reviewed publication for rare disorders with non-believers out there. So it’s struggle is real. How do you remove a lipoma laparoscopically without further enlarging or damaging the ring? You remove the lipoma open rashes from mast cell activation syndrome triggered by foreign body reaction. I believe not necessarily because mast cell activation syndrome has a slew of other downstream effects including swelling, which some patients don’t have.

Speaker 1 (32:19):

But it could be the people who get actual mass activation syndrome I feel do, don’t do very well because at least the ones that I’ve seen because that seems to be a disorder that does not go away. What I mean is how do you get adequate access to removal lipoma, which is very close to spermatic cord. So lipoma should be removed during laparoscopic surgery as much as possible. If it’s unfortunately the routine which can happen at times, then you have to remove it via open surgery. Thank you. We want can’t wait to help others. I love these comments. Will all general surgeons implant Mesh be aware of this paper? No, not all. Journal general surgeons read number one, not all general surgeons read the journal of abdominal wall surgery for sure. Number two, now that’s out there. Patients can use it and show it to their surgeons if they want.

Speaker 1 (33:15):

So that’s one good thing. And no, it takes a long, long time to start changing practice. So this is not, it’s going to be a long haul, but you have to go through the process and do this. Next question for the exercise question. How soon after would you be exercising? I still have some pain from the surgery. What should I be doing? You told me not to lift 10 pounds for six weeks. Those are questions you have to ask your surgeon. I can’t, can’t judge. Let’s see. Replies from another physician on Instagram to you made me really upset, insinuating that we need to be mentally evaluated for issues that were there before the Mesh implant. I would love to tell in my story. It may change his mind. Interesting discussion.

Speaker 1 (34:05):

There is a lot of thought that chronic pain, not necessarily Mesh implant illness, those are two different things. Mesh implant illness is a total body. You’re not getting rashes because you had P T S D when you were a child, but chronic pain has been associated with childhood trauma, stress in your life, et cetera. And many people who do not resolve their chronic pain are then sent to what’s called pain psychologists and they’re encouraged to start let’s say cognitive behavioral therapy and that is just a way to kind of, it’s mind over matter. So there’s some truth to what he’s saying it that has to do with chronic pain and not so much Mesh implant illness and I feel that we’re having the wrong discussion. But yeah, that Instagram discussion was interesting and he’s a very close friend of mine, so I respect him very much and he’s got a great take on things, but I think we’re talking two different things.

Speaker 1 (35:16):

Do you have to use Mesh with the first Inguinal hernia? No, the 50 by 20 oval physio Mesh I guess we’re talking about was only on the market. What’s only on market, not even six months. Bad thing was it was put over an aortic B femoral bypass. Okay, next question. Dry eyes. Yes, dry eyes, dry mouth skin. Oh that’s Sjogren’s syndrome. Okay, so this is very interesting. Someone’s talking about dry eyes, dry mouth, dry skin and dry hair, which is all symptoms of Sjogrens syndrome, which is an autoimmune disorder. So the qu, here’s where it gets dicey. Did you have Sjogren’s syndrome and you didn’t know you have it until it was sparked by this Mesh implant and maybe if you hadn’t had the Mesh implant, you wouldn’t have had Sjogren’s for another five, 10 years but you would have anyway because you’re genetically predisposed to it.

Speaker 1 (36:17):

These are questions that doctors are asking and they’re very afraid of calling it Mesh implant illness because what they really want to dissect out is are you getting an autoimmune type disorder because of the implant and you’d otherwise be normal or do you already have a genetic predisposition to get something because your family, let’s say, and the Mesh is just hastening that process. To me it doesn’t matter so much because you should not be putting Mesh in those patients. We just don’t know which those patients are ahead of time unfortunately. And then the other question is if it’s true Mesh implant illness, the likelihood is all that should go away once the implant is removed. Any risk with involved the Mesh removal? Yes, it’s a complicated operation. Should not be done by everyone should be done by those of us that do it for a living.

Speaker 1 (37:22):

Thank you. A hundred percent better. After Mesh removal surgery, 32 pounds lighter and had immediate relief of symptoms of widespread inflammation and back to work. My second question is will I always have to avoid any type of implants the rest of my life, including sutures, knee or hip implants? Very good question. So I cannot say for sure however, dental implants are a common thing. Personally I would if you already know that you reacted to one implant, I would try not to do other implants and that includes dental implants, breast implants, another Mesh in another area of your body. I had a patient that clearly had Asia syndrome, Mesh implant illness from a Mesh. The Mesh was removed, he got so much better, then the hernia came back of course, and for some reason he was okay getting Mesh again and guess what? He’s back to being sick again.

Speaker 1 (38:21):

So I would prefer you not get implants until we know more information. But I don’t really know enough about let’s say hip and knee implants. They do include titanium, which tends to be better tolerated, but certain titaniums also have cobalt and other impurities that may or may not be appropriate for human implantation. So there’s a lot of unknowns out there and what really irks me is that as surgeons we have very little power and influence on industry because we’re not the ones making the products, we’re not the ones testing the products. So we are the ones buying the products or the hospital is. And what happens is if the industry is selling us impure, medically unsafe products, then outside of like FDA and other regulatory companies, the surgeon is powerless. I only have certain numbers of meshes that I can use in a patient. I can try and use a less inflammatory one.

Speaker 1 (39:32):

But even those, I don’t have any control over how they’re made. I have a trust that they’re made. So even for hip implants and so on, there have been problems and oftentimes the surgeons don’t know until they’ve implanted in so many people you’re doing a great new job. I don’t know if that’s for me or not, but thank you. How does one know if the heat and sweating is different than menopause other than occurring right after the implant? For me it was right after the implant. Yeah, good question. So we don’t, and that’s where a lot of the peers of mine say, well how do you know this one wasn’t from menopause or hormonal changes? We don’t know. We just don’t know and there’s no good way to figure it out. Have you heard of iOS on how do you know you are allergic? We don’t know.

Speaker 1 (40:31):

That’s what I’m trying to say. Allergy testing has is not reliable. There’s no single blood test. There are some research type blood tests, HLA tests, HLA blood types that Dr. Tervaert and others are considering as predictors but they’re not reliable predictors that that means if you had a Mesh reaction then maybe your HLA was of a certain type, but just because your HLA is of a certain type doesn’t mean you’re going to get a Mesh reaction so you can’t prospectively consider it. Now in my practice, I think twice if my patient’s female, young, super thin and or has an autoimmune disorder. If you have all four, I’m not putting Mesh in you. If you have autoimmune disorder, we talk about not putting Mesh and if you’re like a really thin person, I prefer not to use Mesh. But it’s a discussion. You happen to have that discussion with your surgeon.

Speaker 1 (41:35):

Disregard above. Okay, thank you. I didn’t know what you meant. I wish I lived in your area. All my doctors keep telling me the Inguinal Mesh is too dangerous to remove. Well, you need to move and see doctors outside of your region. I believe my body is rejecting the Mesh because my belly swells every single day since the Mesh was implanted. Please see someone, there are surgeons near you. You may have to travel, but that’s your health. If you had to go for a job interview, you would travel. Why wouldn’t you do that for your own health?

Speaker 1 (42:10):

This makes a lot more sense than that. It’s in our head. True. Have you heard of spinal cord stimulator being implanted to attend to upper abdominal pain? Yes. I think it’s last resort. I’m not a big fan of stimulators because most of the patients of mine who I see have been talked to about stimulators actually had a very treatable problem except the pain doctors didn’t understand hernias, hernia meshes, et cetera. If a patient has activation syndrome and Hashimoto’s ends very thin, they not get Mesh. They should not get Mesh. In my very strong opinion with breast implants, the patients that fully recover almost always have a full on block plant where all the scar tissue scar capsules removed as well. We do the same can some patients with M I I Mesh implants who do not recover B because all the scar tissue around the Mesh with potentially degraded plastic particles in it were not removed. This has been the case with the breast implant illness patients. Yes, I see a lot of patients that were told their Mesh was removed but it was not removed completely. a lot of surgeons are not confident or don’t feel comfortable removing all Mesh because it may be against critical structures. I believe all the Mesh should be removed.

Speaker 1 (43:35):

It’s almost never a situation where I’ve left any Mesh behind. I’ve certainly never left Mesh behind if I need to remove it for a Mesh and plant illness. So yes, that is true. It’s possible if you’re not fully better, it’s possible. That’s because not all the Mesh was removed. I heard one surgeon say a lot of the times the Mesh is too small, irrelevant. There is some study, some patients do well with small meshes and really don’t get sick until a larger piece of Mesh is put in them. That is true, but that’s not true of everyone. There are patients that are get sick with a very small piece of Mesh and there are patients that get sick with just sutures. In fact, one person asks a question about whether you’ve seen it from other implants like clips and staples. Yes, have seen that and I’ve removed clips and staples in patients and made them feel better. Again, not common, very rare, but we need to be open minded about it. Sunburn feeling. So the sunburn feeling can be if it’s in the area of your surgery, that can be a nerve pain issue that is not Mesh implant illness.

Speaker 1 (44:55):

Let’s see. Is prolene permanent suture safe for inguinal hernia repair? Usually yes. Both for longevity and to avoid rash of form body rejection? Usually yes, but in our study we had a couple patients that had reactions to polypropylene suture as well. Again, can’t predict, but sutures are usually safe. I would love to help the upcoming survey. I will let you know. You know that survey will go public, but it needs to be very complete. Before we get to that, your information’s priceless and appreciated. Thank you. Are you aware of the worldwide Asia syndrome registry? Yes. Maybe you can work with the specialist in Barcelona, Spain and Israel who are collecting this in their database. Maybe some of these patients could be used for your next study. Yes, I am working with ’em and I work very closely with Dr. Shoenfeld. He’s been super, super helpful. What questions do you ask a doctor for Inguinal hernia. So you know, have the right doctor. Okay, we have a whole session on just that. What to do during your what questions to ask your hernia surgeon. So go back to my YouTube archives and you can watch that. Is prolene permanent sutures safe for inguinal hernia pair Both. Yeah, we already said yes to that.

Speaker 1 (46:14):

Is mouth exostosis a symptom of Asia syndrome? I have not seen that, but of course we don’t know. In my case, there’s no genetic predisposition, no family history of autoimmune disease, no M T H F R only risk factors are thin female. Yeah. Yeah, that’s that’s very, very correct. After Mesh, I had Asia syndrome and five autoimmune diseases diagnosed so far. So the question is, will those autoimmune diseases go away once the Mesh is at or are you kind of doomed to have autoimmune disorder for the rest of your life? I have dental implants. What symptoms am I looking for? I already reviewed the Asia syndrome symptoms. Is prolene permanent? Keep going back to that. Do you know if anyone has used a Bradford Hill criteria on causation? I don’t know what that is, so if you want to tell me what that is, I can ask you. But the logic is the patient was healthy, got the implant, became unhealthy removed, the implant became healthy again. So usually that’s a good, good causation. Let’s see. Can TEP Mesh be removed with transabdominal approach? Yes. Do it all the time. Can you always remove pre peritoneal fat without a peritoneal hernia sac present from England canal laparoscopically without enlarging or damaging the interline? Yes,

Speaker 1 (47:51):

I want it all out. I want your Mesh all out. I really do. How can we stress the importance of this to a surgeon removing Mesh that knows you have Mesh implant illness? I feel so strongly that I have this and now with the pulmonary issues, I’m not willing to leave it in and see what happens. I agree with you. I think it’s time for your Mesh to come out. It’s whatever the consequence and the worst consequences, you’ll have a bulging belly. There are so few removal surgeons, the only ones that validate Mesh and implant illness. Are any other removal surgeons doing studies for other issues?

Speaker 2 (48:31):


Speaker 1 (48:32):

Don’t want to say no because I don’t know what everyone’s working on. There is a very small but growing number of surgeons that actually are believers. I believe Dr. Krpata is one of them because I’ve seen many of his patients at his workup and go back to our archives. We have interviewed Dr. Krpata. I think he’s great. Travel for care, it’s worth it. That is so true. What about absorbable sutures for application if needed after one plus years after measurable? Not ideal, but in certain situations like perhaps yours Completely reasonable. Honestly, completely reasonable. When Mesh is removed, what do you U use instead of Mesh? For the hernia tissue repair, you do use nothing. Just sutures. I understand we can bring this published paper to our doctors, but how many will really take time? Then you got to find the doctor that does otherwise they’re not the right doctor For you, for the non retained type of lipoma, the absence of laparoscopically placed Mesh in the abscess absence, can that be removed laparoscopically without enlarging or the internal ring or does it matter because Mesh covers a defect that makes no sense.

Speaker 1 (49:53):

In the absence of laparoscopically placed Mesh for the non retained lipoma, can that be removed laparoscopically? Yes. Yeah. Why do you keep thinking that laparoscopic surgery enlarges the defect? It doesn’t. Neither does open for those. Unsure about travel. Your health is so much more important. Don’t gamble on it. I agree with that. Dasarda toine, a few others. Look at all the variables and scans. Unlike general surgeons that don’t specialize in hernia care, I offer the online consultation. So if you can’t physically travel to see me, you can just send me all of your documents as a online consultation. I’ll review and send your report. It’s not really like a doctor-patient relationship. I kind of do it to help people kind of like the best I can do without actually physically examining you and offering you treatment. But it helps a lot of patients because I understand not everyone can fly into Los Angeles.

Speaker 1 (50:55):

So thankful for you and everything you’ve done. Thank you. Does leaving Mesh in seem to produce continual decline in health? Not necessarily. So if you’re not sick already, then you won’t be sick again. The majority had symptoms within days to weeks to months, almost all within the first year. So that’s one thing. If you do get sick from it, it may not be progressive. So some people are sick, but it’s like they’re stably sick forever. They’re not getting worse and others were getting worse. So it’s very, again, there’s so much variety. It’s one of the reasons why they’re a lot of non-believers because they’re very uncomfortable with this lack of consistency in everyone bulging belly compared to everything I deal with daily, I have to take it. I agree. My belly bulges on left already. Compression will be my lifelong friend. I will act. It will act as Mesh on the outside and I won’t react to it. I mean, you may get a rash from the binder, but I highly, highly, highly recommend it’s time I I’m so sorry. It’s been so much. Time is measurable. Laparoscopic. That depends on that. Depends on your needs. Depends on where the Mesh is.

Speaker 1 (52:16):

When you say thin, when you say thin patients should are better, perhaps not getting Mesh, what do you do than I do a non Mesh repair. Tissue based repair. Have you ever heard about long-term inguinal Mesh implant pain causing hip pain? No. My hips recently became very painful and the MRI shows vascular calcification and it torn labrum on both sides. Okay. Torn labrum is a mechanical problem. It is not caused by anything related to your hernia. So that’s just a hip problem and it’s crushes like these that physicians start becoming non-believer. Cause like, oh, like patient came in and they had a migraine. They think it’s from their Mesh and they have a breast me tumor. They think it’s from their Mesh and they have a fungus toenail infection. They think it’s their Mesh. And so not everything is from the Mesh. A torn labrum is an actual tear as far as we know.

Speaker 1 (53:15):

That should not be related to anything related to your Mesh or your hurting Bradford Hill criteria have been used to determine medical causation since 1965. Thank you. I’ll read that link later on. My Mesh was put in via a component separation repair with oblique muscle reinforcement. So the Mesh is between the fashion, the oblique muscles. I suffered denervation from damaged motor nerves during the diep flap. So far not one explant surgeon says my Mesh can be explained because of the denervation. Yet I have been diagnosed with a syndrome and have no quality of life can my Mesh will actually be safe and removed and a repair done without Mesh. Okay, so here’s the situation. It’s a give and take. Like we were talking with the other patient. All meshes can be removed, but you cannot expect to have a normal abdominal wall. If you have motor, a nerve degradation, you will have an abnormal abdominal wall with bulging that cannot be fixed without Mesh.

Speaker 1 (54:14):

And if you can’t get Mesh because you have Asia syndrome, then that’s the consequence of deciding to take out the Mesh. So you can take out the Mesh, you have about a two-thirds chance, at least based on my study, to get better. The result would be a bulging abdominal wall and living with a lot of compression underwear or there’s one-third chance you won’t get better. And that’s unfortunately the situation we have because we’re still in the learning curve of this pro problem. How long can you have Anglo hernia till effects you? Depends on the patient. It can be your lifetime. Hip de degeneration was noted after measured repair, but no events after removal. I don’t know what to say to that. That makes no sense to me. All right, my friends. Wow, that was a marathon. I had about 20 questions submitted before and we didn’t even get to any of those questions because you had bombarded me with so many questions.

Speaker 1 (55:22):

If measures removed and no improvements shown, would you recommend the clip nurse? Absolutely not. You only touch the nerves at the nerves or the problem. All right, that’s it. We finished. That was a marathon. Quite the marathon. Thank you everyone. Thanks for sharing your questions and asking me to join in your journey as we talk about Mesh and plant illness and learn more and more about it. This was great. Thank you. Many of you are here based on my Facebook page, Dr. Towfigh, and know that this episode and all previous episodes are all on my YouTube channel at Hernia Doc. So in about a day or two, this will be posted for you. You can rewatch it, share it, do whatever you’d like. I may have to go through and read it, listen to it again myself because we went through like, I dunno, a hundred questions at least. That was amazing. But I must leave you now and we’ll see you next week. Thanks everyone. Thank you for joining us at Hernia Talk Live every Tuesday at 4:30 PM My name is Dr. Shirin Towfigh. I am your hernia and laparoscopic surgery specialist. Don’t forget to follow me on YouTube to always get these episodes and also follow and like me on Facebook at Dr. Towfigh and on Twitter and Instagram at hernia doc. Have a great night.