[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.

[Good intentions]

Thanks for replying. Dr. Petersen’s noinsurance site is one the first that shows up on Google if you search mesh removal. I had been considering him, and had actually talked to one of his assistants. It was tempting.

It’s surprising that there is no mechanism to track and grade the performance of surgeons. They all seem to be free to do whatever they like. Overall, the field is probably full of well-meaning professionals but there is no way to tell who’s good and who’s not. It’s a lot like the police force, where the members just look the other way when bad things happen. It takes some really egregious misbehavior to even get noticed, and even then the surgeon can keep practicing.

Dr. Jayant Patel practiced for 25 years, killing many patients along the way. You’d think that fellow surgeons would have done something to protect their profession. It really does seem like a roll of the dice, and word of mouth through web sites like this one, to avoid major problems. Imagine what it was like before the internet was big.

http://www.oregonlive.com/pacific-no…ortland-a.html

Thanks again and good look.

[Good intentions]

quote groundfaller:

Opinions on mesh removal & managing chronic pain

What helped me out the most has been physical therapy and movement. It may not be right for everyone but the surgeons offered me very little medical advice and there is an almost criminal lack of information regarding follow up treatment/care for hernia surgery complications. Given the frequency of this surgery and the high rate of complications, it baffles me that research isn’t blazing forward on post surgery treatment modalities. I hate to sound so negative but once a surgeon has done the surgery then you have left their field of expertise and they are not much use. So, back to my point, physical therapy might help. I am in the process of seeking out a couple new therapists for help. One specializes in cesarean complications in women and the other is a sports medicine PT that focuses on my activities. I have my fingers crossed that they can provide more positive results with better encouragement for a happy future than they surgeons who all just threw their hands up in the air.

I agree about the lack of post-surgery advice and care. The surgeon will release a typical patient to full activity at four weeks but physical changes will happen for months and years. So the patient lives in fear for that length of time as they feel pain and soreness and experience odd sensations. Even a simple instruction book would help but there is nothing. I think though, that the surgeons really don’t know what to do because they are mainly trained in surgery, not healing. As noted, once the patient leaves after the followup visit, they are assumed to be okay unless they come back with a recurrence. And, back to costs, physical therapy costs money, It’s cheaper to let the patient fend for themselves, than to ensure that they will be okay, mentally and emotionally. That’s not on the surgeons, that’s on the medical industry.

One of the beauties of the laparoscopic mesh implantation is that there’s almost no way to prove that there is a pain problem. None of the tests can show pain. So denying further treatment is easy to do.

[Good intentions]

This thread offers a good example of a surgeon choosing what is, apparently, the wrong mesh for the purpose. A heavy mesh for a thin person with low recurrence possibility. And, apparently, there is a better choice, not a random one, based on the qualities of the patient and the qualities of the mesh. This is what we all need more of – information that can be used to make a decision. There is a way to correlate the choice of mesh with the patient. We need more of this.

Unfortunately, surgeons will change their minds once they’re inside, Based on possibility of recurrence, but not quality of life. My surgeon intended to use the lightest weight Bard mesh, because I’m skinny and healthy, but switched to Bard Soft Mesh when he saw the defect because he was worried about recurrence. So he made the decision on the fly to trade my quality of life for a lower chance of recurrence.

The message needs to get out to the surgeons that there are real people out here suffering a fate worse than a recurring hernia. It’s not all about avoiding recurrence. It seems that the only way to get that message out is to complain loudly, and choose the surgeons who know how to make that choice, through sharing information on sites like this.

[Good intentions]

quote bharlan2001:

Dr. Guy Voeller Memphis, TN

bharlan2001 (Robert Harlan 78 years old) reporting:

Decided to approach Dr. Voeller first. Good choice. He is a professor at the University of Tennessee Medical School in Memphis, TN. He is a hernia specialist, has done studies on different meshes, has done 4,000 inguinal hernias, is a member of the Minimally Invasive Surgery unit at Baptist Memorial hospital in Memphis. He had all the right answers; polypropylene mesh, mesh anchored with glue, he would be doing the surgery, etc.

Can you give more detail on the material? I’ve seen where a couple of people have had Progrip mesh with good results, where I have Bard Soft Mesh, with poor results. Trying to draw some correlations between good materials and not so good. If they were all the same, some of the manufacturers would go out of business. There must be a reason for choosing one over another.

Thanks. And how are things now? Six weeks after surgery is barely time to reach a steady state.

[Good intentions]

quote Mesh:

First, I am sharing my opinion and personal experience, I am obviously not a doctor but a mesh removal and triple neurectomy patient.

Dr Wright an appropriate name because he is right. An amazing and straight forward diagnosis with the utmost time and professionalism I have ever witnessed. Truly a great man thank you Dr. Towfigh for the recommendation.

Dr. Wright is the third doctor not including a neurologist to recognize the importance of nerve preservation and to validate the motor function of the ilioinguinal, iliohypoghastric and genitofemerol nerves (spelling) and that they will never grow back. .

Hello Mesh. Thank you for sharing so that the rest of us can be better off. You have K. Petersen in the title of your thread but don’t mention him directly in the post. Is he the one that performed the triple neurectomy? And what did Dr. Wright do?

Sorry, it’s just not clear. Thanks again.

[Good intentions]

To be clear – I’m not normally so wordy and argumentative. But I do see a common response from surgeons about focusing on fixing the hernia and avoiding recurrence. But they almost never talk about getting back to the quality of life the patient had before. Even my own surgeon, who I have stuck with so that he can see the results of his work, always reports in a firm voice “no hernia recurrence” whenever he examines me. It’s all that he can think about. He barely hears my words about discomfort and soreness and other problems.

The goal should be to get the patient mentally, emotionally, and physically back to where they were before the hernia. Not just physically.

[Good intentions]

Again, thank you. But how do we, the patients, get this information? How do we know if our surgeon is a contributor to the AHSQC? And what “quality” is measured? A simple questionnaire would probably tell a lot. My surgeon is close to one thousand mesh implantations. I would love to see the comments or results of people who are doing fantastically. Then I could just focus on my problem. But I have no idea if it’s my surgeon, or the materials, or me that are the problem. It’s all hidden. If he doesn’t hear from them, they’re considered a success.

I have a degree in a science and the art versus science argument is really not relevant. The art would be used on top of a solid scientific base. Starting at art suggests that success is in the eye of the beholder and that the surgeon is not responsible for any outcome. Because it’s art.

“What is most important is that your surgeon has an interest in doing what they are doing, listens to the patient, and is involved in self-education.” What is most important is that the results of the surgery give a good outcome with a long-lasting high quality of life. I don’t care if my surgeon is interested or listens, but I do care that they use what works and not what doesn’t.

Besides that, how do we find out which surgeons are learning and keeping up? Where is that information?

Again, I appreciate what you’re doing, and I know that working in the medical industry bureaucracy is frustrating, but there must be some way to define what is best for the patient besides waiting for a lawsuit? That seems to be the main driver for change. It shouldn’t be that way. There should be more weeding out of the materials and methods that don’t work, and less independent experimentation. We’re not supposed to be lab animals.

[Good intentions]

Thank you for the reply. I did not mean material gains. I meant contracts with the mesh companies. It might not even be the surgeon who has the contract.

I have heard the statement about losing money on mesh implantation. It doesn’t make sense. That’s not how businesses are run, costs are adjusted to break even at least, in a non-profit organization.

I really appreciate your contributions, but your comments are the general platitudes, with no useful detail, that leave everyone wondering. No offense intended. For example, why are there so many different types of mesh, from so many different companies? If the procedure is as easy and as safe as suggested, what purpose would be there be to have all of these different products? Somebody is making money here. A person could argue that there must be flaws in the materials and methods because medical device companies see a need for new products. There must be, they don’t do research for fun. How do we patients get the information behind the reason for the new products.

We all go in to the specialist’s office expecting that they will be up to speed on the state-of-the-art. Then we’re supposed to tell them what we want. But we don’t have the information we need to make an informed decision.

“There are a lot of quality of life studies performed on patients with and without mesh implantation”. Where are the quality of life studies comparing the different materiasl and methods of implantation? “With and without mesh” is not really the question, it’s “what is the best mesh and method to give the best quality of life”.

[Good intentions]

quote sngoldstein:

Hernia mesh fixation questions

I don’t fixate mesh except in rare circumstances. Other people fixate all the time. What works for one surgeon may not work for another and we are all quite opinionated and maybe a touch egotistical. Either way, what matters is that your surgeon does what works for them, has good results and happy patients.

How can there be so many different ways to do things, that all give good and happy patients? Who is keeping score? If a surgeon has bad results does he/she tell their fellow surgeons to avoid this method? How does a patient know which surgeon has good and happy patients and who doesn’t?

If every surgeon is learning as they go, and developing their own special way of doing things, that would mean there has to be mistakes early in a surgeon’s career. It suggests that we should all avoid new young surgeons because they are still experimenting, and we should only use surgeons with tens of years of experience, because we want tens of years of good life after the surgery.

There should be standard methods, proven to give good and happy patients, after hundreds of thousands of mesh implantations. It seems like it’s still the wild west out there.