I’m so furious and depressed … I can’t understand why doctors use mesh!

Hernia Discussion Forums Hernia Discussion I’m so furious and depressed … I can’t understand why doctors use mesh!

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    • #28586
      JamesDoncaster
      Participant

      I’m simultaneous furious and depressed.

      Some of you have read my previous posts and know my history. But, I’ll recap. In August of 2019 I had a small inguinal hernia (less than one cm according to the surgeon). I was fixed with a giant progrip mesh. I woke up from surgeon and immediately had pain in my hip and pubic bone. Dealt with the pain for 6 months and finally had the mesh removed. This helped but still left me with weird feelings and pain (but less than with the mesh). I waited 10 months and then had another operation to strengthen the area where the mesh was removed. Some of the weird feelings of weakness went away. But, I still have pain and some weird feelings. Tonight I am basically just realizing that I am out of options. No more operations are left to do. I’m going to have pain and odd feelings the rest of my life. And I don’t care what any doctor tells you: this is 100% a mesh problem. I cannot believe doctors continue to push mesh in patients knowing full well that they playing Russian Roulette with their patients lives. There was nothing technically wrong with the mesh repair that was performed on me. The mesh causes pain — permanent pain — that doesn’t go away after they take it out.

      Do Doctors seriously not understand risk? If you get a non-mesh repair and it fails, you can get another operation. If you get a mesh repair and you get pain, you’re screwed for life.

      And you know what infuriates me most about this situation? I asked my surgeon if he was going to visit his parents over the winter holidays and he said: “well..even though the risk of giving them covid is low, the consequences are high, so we are not seeing them.” Maybe he should use that logic when he sticks mesh in his patients.

      And, by the way, I know what a non-mesh repair feels like. I had a hernia on my other side fixed without mesh by Dr. Brown and have had no problems at all with this repair. You have no idea how much I wish I had seen Dr. Brown for the first hernia. It would have saved me years and probably a lifetime of pain.

    • #28588
      ajm222
      Participant

      Very sorry to hear this.

      The only thing I can say is that I’ve heard that strange pains can come and go for quite a while. One and a half to two years.

      What types of strange sensations are you having at the moment? And what was the strengthening operation? I assume the area felt weaker after removal?

    • #28589
      ajm222
      Participant

      It also sounds like you may have just had another operation on that side within the last couple months? Maybe it’s obvious to you the discomfort is the same discomfort you’ve been dealing with all this time. But I wonder if maybe you need a couple more months more of recovery to be sure.

    • #28590
      Alephy
      Participant

      Hi James,

      The way I see it, it is not so much why they use mesh: what really makes me wonder is why many doctors (this is true I believe) would talk about mesh as a very safe, secure and complications free medical device. There are situations where mesh is the best option, and I would even be inclined to acknowledge that a doctor might not know any other way to fix an hernia…However, this does not mean that they should sell it the way they do, this is truly unacceptable!

    • #28591
      Wim
      Participant

      I had contact with a German doctor and I asked what if the hernia is too big for a good tissue repair, then he would use an absorbable mesh also. The strength deoesn’t sem to be provided by the mesh itself but the scar tissue that grows on it. Maybe the ideal would be tissue repair + absorbable mesh. The best of both worlds?

      What you also often read is that the introdcution of the mesh allowed less skilled/good surgeons do successfully hernia repairs. It was thus never in the patients interests that the mesh is being used.

      Maybe more prevention and research should be done to identify us patients before we get a hernia actually.

      • This reply was modified 5 months, 2 weeks ago by Wim.
    • #28593
      JamesDoncaster
      Participant

      The main complaint I have with the way hernias are commonly treated in the USA is the inability or unwillingness of most doctors to assess risk. I have read countless stories of people like myself who have suffered immensely after having a mesh-based hernia repair. I have not read a single story from anybody that had a tissue repair. Given the possible (very serious!) complications with mesh, there is no reason to use mesh as a first option. A logical conservative treatment of a small hernia would be to begin with a tissue repair. Any other course of action is cavalier and irresponsible.

      Also, the commonly used line: “most patients tolerate the mesh just fine,” is NOT a proper justification for using mesh. Most people that flew in a 737 Max tolerated their flight just fine too. But, at least the FAA had the sense to step in when it became clear there was a serious problem with that plane. I see very little willingness from anybody in the US medical industry to step up and address the very serious problems that mesh causes.

    • #28594
      ajm222
      Participant

      Absolutely true

    • #28595
      Wim
      Participant

      “It allows general surgeon to do also hernia repIr with less re-occurrences” that is why mesh has become the first choice. Google yourself for it. And it is a constant flow of money for the producers

    • #28596
      JamesDoncaster
      Participant

      All doctors should be familiar with this:
      https://en.wikipedia.org/wiki/Hippocratic_Oath#%22First_do_no_harm%22

      Doing an operation on somebody that is reasonably likely to cause pain, when there are safe procedures available is totally and completely unethical. If a doctor lacks the skills to do a tissue repair, then he/she should recommend that the patient visit another doctor. Doctors don’t help patients by causing harm.

    • #28598
      Alephy
      Participant

      There is a human component to the problem, as well as a “system” that got funnelled in place by the market and the need to streamline these types of surgeries (e.g. population is getting older and older so you will see more and more hernias).

      For the human component, surgeons are educated/taught in a certain way i.e. mostly mesh (and the young ones do not necessarily know what it looked like before). They also assume they play the biggest role e.g. if you listen to the weekly discussions with surgeons, they all more or less mention that the surgeon makes the biggest difference (“it is the golfer that swings the club, not so much the club itself”): on this tenet and considering that all surgeons think of themselves as brilliant, the mesh is assumed to be inherently safe in the hands of such brilliant surgeons…..
      I personally think the surgeon does make a difference, but only “up to a point”: after that it is hoping for the best as the unknown (by which I mean lots and lots of poor medical studies aka rubbish) kicks in….

    • #28599
      Anonymous
      Inactive

      I can identify. I had three surgeries to fix what was supposed to be a pretty straight forward inguinal hernia. After the first surgery to implant mesh I immediately had pain and it was suggested that the surgeon go back in to go a “groin exploration “. Some nerves were cut which made my pain worse. Ultimately I had the mesh removed which was the biggest mistake of my life. The genitofemoral nerve was cut and I now have constant groin and testicular pain as well as a loss of the cremasteric reflex and scrotal muscle reflexes. I cannot get comfortable and am miserable. Some are recommending an orchiectomy to remove the testicle- without any guarantee of pain relief. All for the treatment of an inguinal hernia. If you’re contemplating mesh removal trust no one and ask a ton a questions. I wish I had asked more

    • #28600
      Good intentions
      Participant

      JamesDoncaster, and others, I’m at just over three years since mesh removal and still improving. I think that the reason I’m improving is the same reason that the mesh did not work. The body is continuously working to get to a certain state, determined by your DNA. When the mesh is in, the body keeps working to get rid of it. When it’s out, the body keeps working to repair the damage that was caused. I cut off the tip of my finger when I was young and it took about ten years before feeling came back and probably another ten before it softened up enough that it felt normal. The time frame won’t make you happy but the continuous improvement is something to look forward to.

      Here is an official document from the Society of American Gastrointestinal and Endoscopic Surgeons (SAGES). There are a lot of words but they’re not really very filling. I went through it a few times to try to tease something substantial from it, but in the end it seems like the authors were conflicted and kind of lost their way, talking themselves in to circles and contradictions. Ethics discussions are usually difficult. I get the feeling of someone explaining away the deviation from the Hippocratic oath and the focus on the patient, and, instead, justifying the use of all of the new technological “advancements”.

      It’s worth reading just to realize that this is the official position paper, regarding hernia mesh among other devices and procedures, of one of the premier medical societies for abdominal surgeons. The “Informing Patients…” section is worth reading at least.

      https://www.sages.org/publications/guidelines/ethical-considerations-regarding-implementation-new-technologies-techniques-surgery/

      • #28615
        Ben999
        Participant

        As someone who suffers from this myself, the story about your fingertip was really uplifting.
        Obviously it’s not the same as a mesh removal with possible neurectomy but a similar situation. Noone really talks about how long it takes to fully heal from a hernia surgery, much less a mesh removal. It’s just about how long it takes to get back to work and for the post surgical pain to subside.
        But after so much trauma it might take decades to come close to full healing, especially with nerves.

        Also about why doctors use it…
        I can say that at least in Germany there is a strong financial incentive to use the quickest (and thus generally cheapest) method, regardless of outcome. Surgeons get paid by the amount of surgeries, not the quality.
        Also I have read about mesh companies inviting surgeons to breakfast buffets, holidays and offering other presents…
        That’s as much as is public.

    • #28602
      JamesDoncaster
      Participant

      At the end of the day, surgeons that perform hernia repairs absolutely know how horribly bad patients who end up with mesh-pain can suffer. Some of them, like Dr. Brown, have made the responsible choice to not do hernia repairs with mesh. It isn’t unreasonable to expect others to do likewise or at least to tell their patients that, mesh is not a good first option.

      I have yet to hear a single justifiable reason for sticking mesh in somebody as a first option if he/she has a small hernia.

      Try pointing me to one person — anybody — that has suffered chronic pain from a tissue-based repair. Presumably if this were a problem, somebody would have posted about it online.

    • #28616
      ajm222
      Participant

      I think this is a good place for surgeons to chime in with cases they’ve seen where pure tissue repairs caused chronic discomfort, as they are the ones claiming it happens. It does feel like it’s overestimated, just like problems with mesh are likely underestimated.

    • #28633
      JamesDoncaster
      Participant

      I fully agree @ajm222. I would love for any surgeon or patient to point me to one person who had chronic pain after getting a Shouldice, Bassini or some other tissue repair. I’ve done extension searching and haven’t found a single such story. Presumably, if tissue repairs were as problematic as some surgeons would have us believe, it would be easy to find anecdotal evidence.

      Meanwhile, there’s no shortage of stories just on this website of people that had terrible experiences with mesh.

    • #28634
      Alephy
      Participant

      Hi James,

      One thing to bear in mind is that the vast majority of hernia surgeries are done with mesh, so the tissue repairs numbers are very small, and therefore the number of complications even smaller as a result…

    • #28635
      JamesDoncaster
      Participant

      @alephy In fact, this was my reasoning for getting a mesh repair in the first place. I assumed that, with so many hernia repairs performed with mesh, a small percentage of them were bound to post online and it was nothing to worry about.

      But, after getting a mesh and finding out just how horrible of an experience it is, and after reading countless stories and hearing first-hand how others have suffered, it is abundantly clear that mesh poses a serious risk to many a significant portion of the people that get mesh-based repairs. And, even with fewer people getting tissue repairs and mesh-based repairs, you would think at least a few people would be posting on this site or elsewhere about how their tissue repair ended up giving them chronic pain. Yet, I see no such stories. I have seen some stories about recurrence, but no stories about chronic pain.

    • #28637
      ajm222
      Participant

      watching the latest HerniaTalk discussion with Edward Felix was interesting. he mentioned that I think it was Shouldice that indicated 23% or so incidence of some sort of chronic pain for tissue repairs, which along with recurrence was one reason for trying to find a better alternative. i need to go back and listen again and make sure it was Shouldice. of course he made it sound like complications from mesh were infinitesimally small. he has mesh in both sides. apparently he had two tissue repairs originally and they lasted decades, and then had them both redone with mesh. of course, i think mesh and tissue repairs, if done correctly, both should be expected to last decades but both could/would eventually fail along long enough time horizons and for different reasons – tissue because the tissue and stitching stretches and gets weaker, and mesh perhaps for that reason plus degredation of the mesh and shrinkage or folding, which could arguably be more dangerous. one could also argue he hasn’t had issues with his own mesh because he’s older. i really think it’s very rare for those over 60 or so to have discomfort from mesh based upon the way the body changes in terms of pain sensation and sensitivity past a certain age. i do however know of folks over 60 who had had mesh complications – seroma and infection and those sorts of things. plus systemic issues, which are supposedly even more rare but you wouldn’t think that if you’re part of all the mesh facebook groups.

    • #28638
      ajm222
      Participant

      i’d also have to suspect that ‘chronic’ pain with tissue repair would more likely resolve after 3, 6 or 12 months than chronic pain caused by mesh.

    • #28639
      Wim
      Participant

      This doctor Edward Felix is pro-mesh in such a way that the Shouldice Hospital is doing things what should not be done because the mesh problems are extremely rare.

    • #28640
      ajm222
      Participant

      So the study I referenced wasn’t done by Shouldice specifically – he just mentioned it was a study out of Canada.

    • #28642
      JamesDoncaster
      Participant

      Mesh problems extremely rare? That is laughable. And, even if it were true, Boeing 737 max plane crashes are extremely rare too. That doesn’t mean we should allow the planes to fly. When the consequences of “rare” outcomes are so devastating, it is not unreasonable to ban the activity that produces those outcomes — especially when safer alternatives are available.

    • #28643
      JamesDoncaster
      Participant

      I guess one thing I would like to know is if doctors are ever given course in “risk assessment” as part of their training? I hear surgeons talk about recurrence as a risk. If you get a recurrence, you are back where you started. So in that sense, it isn’t recurrence isn’t a risk. If, on the other hand, you end up with chronic mesh pain, that is indeed a risk, because you are much worse off than where you started.

    • #28645
      Good intentions
      Participant

      Dr. Felix seems to enjoy the limelight. He was talking like he invented laparoscopic hernia repair all by himself, I heard many “I”s. I did not watch the whole presentation. Did Dr. Towfigh ask him about his own mesh implantation and whether he was experiencing discomfort or pain? She should have, his name has been mentioned several times on the forum. I watched a very short segment and heard him talking about “getting back to work quickly”. That, to me, is the first evidence of a disingenuous discussion. Everyone today knows that “time off” is the not the big concern with mesh-based hernia repair. It’s chronic discomfort and pain.

      There is something going on in society today where people just keep saying the wrong things over and over again, and don’t seem to mind when what they’re saying is shown to be untrue. It’s very strange and disconcerting. Dr. Felix seems more like he’s protecting the things he’s helped develop than actually using scientific methods to determine the best repair method. Very disappointing. He is working hard to get out and propagate the use of mesh, giving presentations and writing articles, ignoring the 15% of people who have discomfort or pain.

      Here are a few of his past presentations and a link to the Q&A with Dr. Towfigh. There are others where he actually uses the term “Ten Commandments” like he is comparable to Moses. It’s incredible to see, and to know that he is part of the chronic pain problem, amplifying and spreading it, like a disease vector. There are direct connections from the methods he teaches to the chronic pain problem, but he does not address them, beyond implying that people who complain are mentally or emotionally weak.

      I have three more videos that did not go through the first time. I’ll see if I can piecemeal the post together.

    • #28646
      Good intentions
      Participant

      Here are two more –

    • #28647
      Good intentions
      Participant
    • #28650
      ajm222
      Participant

      He did mention his mesh and said he’d never get a tissue repair again now that mesh is available. But he didn’t say anything about how it felt. One just assumes he’s happy with it. He has it on both sides. Originally had tissue repairs on both sides that held for decades.

    • #28653
      Good intentions
      Participant

      Actually, I shouldn’t have asked that question. Because the single anecdotes don’t represent the full population of patients. But, his comments show that he is ignoring the readily available data. Over and over, studies are showing the 15% discomfort/pain rate, or higher. Mesh is the cause of high levels of pain, for a substantial number of patients.

      What he’s doing shows that he is not a scientist, or even a good professor. He is ignoring the readily available data. He is essentially a representative, or salesperson, for the mesh device makers, cloaked in minimally invasive surgery (MIS) techniques. MIS needs mesh to be a viable hernia repair technique. If there was no MIS the mesh problem might be smaller. It would be about plugs and the PHS and Lichtenstein. MIS is allowing the problem to spread much farther.

    • #28654
      Good intentions
      Participant
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