[Good intentions]

I can’t clarify. I only took one course, 30 years ago, in the use of statistics to assess validity of survey data. Some of the background data and references are more informative…

“Recent evidence indicates that 3% to 6% of patients will have severe pain, and up to 31% will have chronic pain after inguinal hernia repair.15-18”

That paper is from 2008 though. There must be more current information out there. You have the most validity in asking questions, since you are planning for a repair. I hope that you do talk to some of the authors and that they’re willing to share. Actually, I hope that they follow this forum and will jump in with some clarification and new results. That would be fantastic.

I also have been around several other forums and have found that many people start recommending that everyone get surgery, based, apparently, on their surviving the surgery itself, and the fact that the surgery was not as bad as they expected. There are very few people who report anything, good or bad, after more than six months. Most people just talk about the healing from the surgery itself. Which is one of the psychological deceptions of the repair – the surgery itself knocks you down so far that you’re just happy to be able to walk again, and forget about why you did it in the first place.

Anyway, carry on and good luck. This thread started with a great question. One question that a person might ask a potential surgeon is whether or not they have recent survey results from their own patients.

[Good intentions]

If I were in your situation, today, I would contact some of the authors of the 2016 paper. I see that one of them is Dr. Belyansky, who I think has been mentioned as a surgeon who also does explantations. Seems like he and the others would have the very broad view of what’s possible and what works.

[Good intentions]

quote ajm222:

A quick glance does seem to suggest that lap surgery appears to be associated with better outcomes in terms of long term paresthesia and groin pain using the better CCS survey. And it was interesting to see that all of those getting the 3d Max mesh appeared ‘satisfied’ (and that lap surgery and inguinal hernia had better results than open or other hernia types).

When I posted that, I “knew” that you would see those parts, but not what might be the most important part. You have the hope goggles on, like I did. If you look at Figure 1, you’ll see Dissatisfaction is 4-5 times as high as Satisfaction, in general, in every category. The figure is not explained as clearly as it could be, there’s probably an assumption of knowledge of statistics, but it looks like most people are not happy with the results of their surgery. That’s the kind of information that the surgeon should be telling you in the consultation. When I was researching getting mine fixed all I heard were details of what would be done, but not a word about how I would probably feel bad with the mesh implanted. At that point in my life it was more important to me to be mentally strong, not physically. I had a hernia, but I would have had a plan to get it fixed at the right time. But it sounded so easy and simple, with an implied “guarantee” of a good outcome. Instead it took over my life.

[Good intentions]

To ajm22 – one more good reason to wait, at least a short while (relative to the rest of your life) is because the tools to understand the effects of all of the new materials, technology, and techniques, are still being developed.

Defocus your research to the more general “quality of life” definition and the state of the hernia repair field becomes more clear. So many new things have been developed, and pushed, and put in to use, that nobody can really say which is better. I’ve struggled myself to call my problems “pain”- related. It’s not really pain, it’s discomfort, some pain with certain activities, the knowledge that you can’t do what you used to do without pain, etc. You become less of a person. You’re able to live without pain if you want to, but you can’t do what you used to do. I’ve thought at times, that it’s much like an amputation of a limb. If you search for chronic pain issues, you’ll get low numbers, just like if you search for recurrence.

This doctor, below, Dr. Todd Heniford, seems to be leading the push for better data collection and the proper usage of it. Read and view some of his work. It’s very informative. The link below is a recent paper, from after I had my surgery, published barely over a year ago. I wish that I had done more research before I had my surgery.

http://journals.lww.com/annalsofsurgery/Abstract/publishahead/Carolinas_Comfort_Scale_as_a_Measure_of_Hernia.96382.aspx

Here’s another, showing how long they’ve been working on it. https://www.carolinashealthcare.org/documents/cmcsurgery/CCSarticle.pdf

He demonstrates how surgeons can be comfortable that what they’re doing works fine, because they don’t really know the long-term outcomes. There’s very little data collected, and what is collected isn’t very useful.

[Good intentions]

I hope it’s okay to post a link to another site here. I think that this site is more about real hernias, of which the “sports hernia” is not one. A sports hernia does not involve abdominal contents getting pushed through an abdominal wall in to an area it doesn’t belong. It’s more of a muscle/nerve damage problem, as I understand it. It’s not a real hernia.

Here’s a link with a huge thread about sports hernias, with some content about real hernias. http://www.letsrun.com/forum/flat_read.php?thread=559820

[Good intentions]

quote WasInTN:

ajm222
I had right IH repaired by Dr. Goodyear of PA and it was 3+ years since and I have had no worries. An occasional dull twitch happens once in a while for a few minutes when I sit in wrong posture or twist my legs, and then it goes away. I think it is kind of nerve irritation. I am happy with what I had. If I remember correctly (yes I do), Dr. G said the mesh will stay for a life time. And it is 8x stronger than the original body tissue. I think the mesh is Ultrapro or something like that. Not sure of that exact name but you can find it from Dr. G’s office or website. He even said that when a person with mesh dies, it can be retrieved intact. Anyways…

As I have been saying on this forum and elsewhere, this much I know about IH repair. It happens due to a weakness in your tissue that holds the internal organs. Once that tissue is weak and a bulge forms you have IH and it can get worse over a time depending on your activities. Does a surgery fix it? It is immaterial to know what type of surgery but does it fix it? Sure it does but does it fix it FOREVER? The answer is “Nobody knows.” Why? Because it depends on what you do after surgery.

Lasting a lifetime, and the strength of the mesh are not the real problems. Anyone who talks about the strength of the mesh as a consideration is really just dissembling.

A lifetime of limited activity, with discomfort or pain if you try to do more, doesn’t seem like something to look forward to.

[Good intentions]

quote ajm222:

I had tons of questions for him and he basically reassured me that though nothing is guaranteed, the incidence of chronic pain is related to certain things that I am personally pretty low risk for, and it’s also related to experience and skill of the surgeon.

Good luck. I really do hope that you’re lucky enough to have a good experience. Your story is essentially exactly what several people have been describing. Reassuring words, from the same playbook, but no direct evidence. Did he describe any patients that he worked on who he’s been in contact with, confirming the things he was telling you? What you were told is what everybody is told. I hate to be cynical but it really is, almost to the word. Also, you’ve chosen the surgeon who said the most comforting words.

You’re going to wake up and find that he did find a small defect on the other side and placed some mesh there. It really doesn’t make sense, for those believing in the power of the mesh, to dissect that large area of tissue, then just leave it with no mesh placed. There will always be a lipoma or a small stretched area, that is a “defect”. Again, this is my cynical view. But there really is a “wave” of mesh apostles out there.

Can you remember the “certain things” that he told you about people who have mesh problems? The “skinny people tend to have more problems” meme is out there, but it seems to be used after the fact, to explain problems, rather than as a screening tool for patients. Curious to know what he told you.

Again, good luck. But you’re on the well-worn path. It’s hard to get off of it.

[Good intentions]

quote ajm222:

I do like that this surgeon said he’s been using the same mesh for ages (at least a decade I believe). He gave me the name but I’ve forgotten and plan to ask him specifically what it was. And he also did say he’s happy to do the non-mesh repair if I choose. And he said one study suggested mesh versus non-mesh at three years had the exact same recurrence rate. No better or worse. They just don’t really know beyond that perhaps what the recurrence rate is. He did say it looked great, though, and he seemed confident in that method.

It’s good that you asked. But the answers are focused on the same thing – recurrence rate. It’s like old-time brain-washing. Ask a question about chronic pain, get an answer about recurrence rate.

My surgeon was very confident about his number of repairs also.

Good luck with whatever you end up doing. Try to lead the conversation though. The environment is intimidating and it’s difficult to challenge the experts.

Here’s one thing you can think about to maintain your curiosity – if “mesh” is perfected and is the superior method, why is so much research being done on new mesh products? Are all of those researchers deluded, and wasting their time? Why do the medical device suppliers keep introducing new mesh materials, if there’s no problem? What need are they addressing?

Here’s a pretty good article (it leans toward industry a bit) that explains how these things happen. The same people are working in hernia repair products. Replace just a few words and it’s easy to imagine that it was written about hernia repair.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4987386/

[Good intentions]

quote ajm222:

But he says he only does that when patients are very determined not to have mesh because of what they have read on the internet.

I understand that people can have major problems with mesh, and that’s definitely a big concern. But it seems the vast majority are fine.

Just to add some clarity to past comments – I have “mesh”. I’m not just an internet rumor.

And, the point a few of us have been making is not the part about the majority but the part about how very bad things are if you’re one of the unlucky ones. It’s not the probability of a bad mesh experience. it’s the level of the damage that you’ll experience, and the difficulty you’ll have n getting it fixed if it happens. So, basically, it’s a gamble, where the odds of winning are high but if you lose, you lose a lot.

Also, one of my points was that what you’ll get today is not the same as what you would have got just one year ago. That’s why I said that if you can find someone who had a good experience, get exactly the same procedure. These professionals are assuming that because they had success before that they can make changes and will be successful again. They are venturing to unknown areas, with no data to support their actions. That’s where the danger is. They are being sold new materials and procedures and getting new recommendations, and trusting that the medical device suppliers know that they work.

When your doctor talks about getting the surgery and all of his past successes, just ask him if he’s doing exactly what he did before. If he says no, ask him how he knows the changes work. Ask him why he changed if the old method worked.

“Mesh” is more than one simple thing. There are numerous types and forms of mesh available for hernia repair, and they can all be shaped in to uncountable shapes and placed almost anywhere in the abdomen. The combinations are incredible. Maybe that’s why nobody wants to take on the challenge of determining where the bad results come from. It’s easier to categorize everything in to one simple box, the mesh box, and only talk about the good results, ignoring the bad ones. That is what’s happening when you talk to your surgeon. He is ignoring real problems. Because it’s easier. That alone should concern you, because if you have a problem, it won’t be real to him. And if talks about “mesh” as if it’s just one thing that should concern you also. He should be able to describe the different materials and methods, and why some of them give bad results. If he can’t he’s not keeping up.

Make sure that you get a proven set of materials and methods. An expert surgeon using the wrong combination is no better than a bad surgeon using the right one

Sorry to be so wordy. These conversations always tend to get pushed back to vague unsupported opinions, assumptions based on no data, not even a few good anecdotes. Nobody can say for sure what the best method is, at this point in the development of all of these new materials.

[Good intentions]

quote saro:

Hi, Good Intentions: a question: your prosthesis is made of polypropylene?

Yes, it’s polypropylene. Bard Soft Mesh.

I just came across an article that shows, in a way, the environment we’re all dealing with. There are people with power and responsibility in these giant medical device organizations that just don’t care about the people they’re affecting. When things change rapidly, these kinds of things happen. Five years after they were sure it was bad, they kept on selling it. After they introduced it with no trial data. Ethicon is one of the big hernia mesh companies. The same people might still be there, pushing hernia repair mesh. How does anyone know?

https://www.theguardian.com/society/2017/sep/29/revealed-johnson-johnsons-irresponsible-actions-over-vaginal-mesh-implant

http://www.ethicon.com/healthcare-professionals/products/hernia-repair-and-fixation

jnomesh makes a good point about fixing a small defect over a large one. But, still, if it’s not changing, it’s not really broken. There’s no need to “fix” it.

[Good intentions]

I can’t emphasize enough how important it is to get the details of what worked and the details of what your surgeon is planning. Make sure that they match. Things are changing very fast right now and things are being tried that have not been proven to work. There is a lot of experimenting going on, with no long-term follow-up.

Get on to youtube and search “sages conference hernia” or similar and watch some of the presentations. Many of the talks are about the new things being tried, and if you watch closely you’ll see that many of the presenters aren’t really confident that their methods work. Their patients go away and they never hear from them again.

It’s great that you have friends that have had the surgery. But you’ll probably have to press them to find out how they really feel. As I said in post #10, we don’t want to look weak so we tend to hide our problems. I know I did, and still do. Plus I spent a couple of years trying to believe that I hadn’t screwed up by having the surgery done. Convincing myself that things would get better eventually.

The “find a surgeon with many surgeries under his belt and you’ll be fine” advice that you see is almost a marketing tool, to make people feel comfortable about having it done. My surgeon had about 400 repairs behind him. He was very skilled. But he was still modifying his method. He told me that but I convinced myself that he was fine-tuning to perfection instead of asking him what was wrong with the way he had been doing things. Maybe he had had earlier problems. I still don’t know.

It’s very difficult to challenge an expert about what they are telling you. Some will get angry. But you’ll live with your choice for the rest of your life. Much longer than a few months of healing pain. If they can’t answer your questions then you know that they don’t know for sure that their methods actually work. Make sure that their method is tailored to you, and is not a one-size-fits-all method. It’s been posted here and I heard it from my surgeon, that active people with low body fat tend to have more problems with mesh. He told me this after I went back with problems, not before. Even though he knew that I was very physically active, and am obviously low body fat.

Good luck.

[Good intentions]

quote ajm222:

By the way, did you have a bad experience? Having trouble finding previous posts. Thanks.

I did and I’m seeking solutions. I had bilateral laparoscopic mesh implantation of Bard Soft Mesh, for a direct hernia. It hasn’t been anywhere near the impression that’s fostered by the industry. It’s the worst thing that’s happened to me besides the death of family members.

[Good intentions]

quote ajm222:

Thanks! That’s great info. Most friends who’ve had the surgery always say ‘sooner rather than later’ but perhaps they simply weren’t aware of the possibility of ‘watch and wait’ or had very symptomatic hernias.

I thought that I had found the perfect person for advice when I had mine. A surgeon who had actually done hernia repairs, and had had a hernia himself, which he had repaired. But after I had the surgery I found that he had his done by the open repair method.

If you have friends that will honestly talk about how they are, including all side effects, you’ll be lucky. The thing about healthy active men (maybe women too) is that we are all raised to suck it up, throw some dirt on it, be tough. And we don’t like to admit that we made a mistake. So I think that many of the problems are being hidden by the patients themselves. And the pros who could extract the information, through an anonymous survey, or discussion, aren’t seeking out the truth.

If you find someone who had success, and has been okay for over a year, and they do similar activities to you, and have your same body type, consider having the exact same surgeon and procedure.

[Good intentions]

But. If you do decide to go ahead and have it done, I would ask the surgeon if they have actually talked to patients who’ve had the materials and techniques the surgeon is currently using, after 6 months to a year, and heard the patient say that they were happy with the results. Not results from older methods and materials, because change is being made based on potential benefits not proven benefits. And every surgeon has a different method. So you can’t even compare materials and methods. I’ve only found a few people who will say that they’re happy with the results of their hernia repair. I think that there are probably many many people who aren’t but have just accepted their new diminished life. Because there’s nothing that they feel they can do about it.

There are pretty sizable communication barriers between patient and doctor these days. If I want to talk to mine, I have to call his answering service. They deliver a message. If he wants to he can call me back. Or he can ask me to come in for an appointment. That means waiting one to two weeks, then paying a copay, then getting 15-20 minutes of time.

In short, just ask for proof that what the surgeon is going to do to you actually will make you better. It’s a very reasonable question.

[Good intentions]

quote ajm222:

The idea of watching and waiting panics me

Seems finding a great surgeon is critical and I want to do my homework and be prepared.

I don’t want things to progress any further (largely asymptomatic right now) but don’t want to get surgery on something that isn’t currently a huge problem if it means I risk more life-long pain or complications. But I also feel like this is a ticking time bomb

I felt similar to you when I found that I had a hernia. But mine was symptomatic and painful and was inhibiting my doing the things I liked to do. If I can be frank – a person would be a fool to get an asymptomatic hernia repaired, by any method, if it’s not getting worse and they are doing all of the things that they like to do.

It’s not a “bomb”. If it gets worse it will be fairly slowly. You’ll know that it;s getting worse. More stuff will push out and you’ll have a sizable bump and various other discomforts.

This is an interesting time for hernia repair. There’s been a very big push to get the new mesh products and techniques out to the masses (25% of the population is massive, marketwise). Everyone involved has been overlooking problems, and/or hoping that all of the change is only for the better. But, as you’ve seen, many of the professionals, from the device suppliers to the insurance companies, and many surgeons, are ignoring the signs that there are major problems. The cost, to the patient, physically, of a problematic hernia repair is huge, but the probability of it happening is smaller. They, the people I mentioned above, are paying for lower recurrence rates with the lives of the few that have problems.

Basically the odds of a successful repair (no recurrence) are better but the cost of complications is huge. It will completely change your entire life. That’s what you should be afraid of.

If I had just discovered a hernia and it was minor and asymptomatic I’d wait and see how things shake out. I don’t think that things can continue as they are, the law firms are lined up out there. When I was researching for mine, in 2014, just three years ago, I barely saw any law firms advertising for hernia mesh lawsuits. All I saw was transvaginal mesh law suits. Now the first search page for “hernia mesh” is almost all about hernia complication law suits. That’s in just three years. I’d wait.

[Good intentions]

How is the left side hernia repair? If it’s good I would go back and have the exact same procedure done. Many of the “advances” in the field since then are turning out to have their own new problems. If you know of something that works for your body and activity level it would be foolish, I think, to try something new. There are many ways to get bad results.

[Good intentions]

quote Jnomesh:

Unfortunately there aren’t many choices out there as mesh has become the gold standard. Whether you argue for or against mesh the real take away is when it goes bad it really goes bad. 99% of the implanting surgeons do not k is how to remove the mesh and to me this is a fundamental problem in using mesh. 99% of surgeons and radiologist do not know how to read an MRI or CT scan to identify mesh issues-and that is a problem! So you get passed on from test to test to doctor to doctor and they all say everything is fine with the mesh. It’s a long and brutal journey, not to mention you will have to most likely travel to another state to find a removal surgeon.
i don’t think the surgeons understand this point.
The physical, emotional and psychological effect this has on someone.
there has to be a better way-then sticking something in someone that statistically speaking can’t come out of you and almost a zero chance to see something is wrong on tests-unless you find the 4 or 5 surgeons in the United States out of thousands who can help you.
this is the fundamental problem with mesh.
sorry for the rant-it’s been a long journey for me.

Good luck, and thanks for posting. And thanks for another name to add to the surgeons who will remove mesh.

Your summary matches the conclusions I’ve come to almost exactly. Especially the part about “really bad”. The surgeons who implant the mesh have no recourse if it doesn’t work. They don’t know what to look for, And they don’t know how to respond. In addition, there is no specific “code” for mesh removal, in the insurance industry, so it’s not tracked, directly anyway.. Most doctors today are part of the standardized health care industry. It’s very bureaucratic. I’ve developed much appreciation,and sympathy, for my surgeon, after seeing how his actions are all second-guessed and graded, for proper fit to the system. As far as the insurance companies are concerned, mesh problems don’t exist as a thing. Which makes it very difficult for the surgeons who implant mesh, to keep up with problems.

I think that if a person went to a doctor with just the symptoms, and didn’t mention the mesh, they might get farther along to a solution.

Again, good luck. And keep posting. I’ve learned most of what I know from forums like this one.

[Good intentions]

Following up – I did receive the surgical records, and they do have the exact type and lot number of the mesh. It was Bard Soft Mesh. The label accentuates the “Soft” part, in fancy script. Nothing special was noted on my charts. Standard material, standard procedure, standard patient.

He must have had another mesh in mind to start, I’d guess, or he mis-spoke at my followup meeting.

[Good intentions]

quote drtowfigh:

Fair enough.

The mesh and its exact type and lot number should be logged somewhere in each patient’s medical records. Usually it’s in the nursing record of the operation.

Thank you, I’ll see if I can get those records. My surgery was done in an Ambulatory Surgery Center though, and there was just the surgeon, the anesthesiologist and an assistant. Outpatient. For all I know his records are all that exist.

By the way, I’m not trying to compete. I appreciate this site that you’ve put together. I think that all of us, patients and surgeons alike, are hindered by the bureaucracy and fear-of-lawsuits of the medical industry as it exists today, as far as learning about the best way to get things done. I call it an industry because that is how it behaves.

My surgeon has put forth extra effort, sitting through three denials for an MRI and a panel discussion to justify it, to help me figure out what is going on. Even though he has other patients, I’m sure, who are battling much more serious issues. I think that he wants to know also.

We can’t fix things though, by just accepting barriers and the status quo. Please don’t take offense as I dig in to the problem.

[Good intentions]

quote drtowfigh:

Can you clarify? The Bard Softmesh is the lightest weight mesh that Bard carries.

I see that that is the case now. At my followup meeting he told me that he had intended to use a lighter weight mesh, but had changed his mind when he saw the defect. In his post-surgery notes he wrote that he used Bard Soft Mesh. I have a memory of searching Bard’s web site, and finding a lighter weight mesh available, at that time, 2015 (12/2014 was the surgery date). Maybe it is not available now, or maybe he was planning to use another manufacturer’s mesh, of a lighter weight and switched to Bard’s product. Or perhaps he was going to use one of Bard’s other meshes, not specifically intended for laparoscopic inguinal hernia repair. He was proud of being at the forefront of the technology.

I am certain though, that he told me, in person, that he made the decision to use a firmer mesh while he was doing the surgery, because he was worried that the lighter weight mesh would be pressed in to the defect. I did not get the surgery notes until months later, when I started to have problems. It could be that he mis-wrote his notes, or that Bard had a lighter weight mesh available in 2014.

Thank you for bringing that to my attention. Maybe he actually used Bard Mesh, and not Bard Soft Mesh. Bard Soft Mesh is what he wrote in his notes.

To be clear, I think that he did an excellent job. But the job is not working for me. And it’s not clear why. And he is on your list of good surgeons, from a different post.