Good intentions
Forum Replies Created
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Dr. Peter S. Billing in Edmonds WA might be close to you, a surgeon with experience in removing mesh. He knows the signs and can offer good advice. There are many others listed on this site, that you could talk to via phone or email. You just have to take the step of calling or writing a letter and initiating a discussion with someone who has the proper knowledge. The hardest part might be accepting that they might recommend what you already suspect. That the mesh needs removal. Another surgery.
There are very few surgeons who understand mesh problems and/or will remove mesh to solve the problems. There are several posts about the issue, within the last few months, and one just a day or two ago.
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quote mulligan22:I visited my surgeon again in August and he did have an ultrasound performed on me, with valsalva, and it showed nothing of concern to him. He isn’t interested in having an MRI or CT scan performed. I look normal, no bulges or discoloration. Bodily functions are normal. My surgeon isn’t offering me anything now except trying pain management shots.
Find a surgeon who removes mesh and also repairs hernias. Your surgeon did what most hernia repair surgeon’s typically do – confirmed that his repair had not failed (recurrence is the main official failure mode, pain and discomfort don’t count), and offered medication to cover up the symptoms. Only a surgeon who has accepted that the mesh repairs can fail or have problems, and that some people’s bodies will not accept certain types of mesh will be able to give you good informed advice. Many surgeons who use mesh are in what looks like some form of mass denial about the flaws of such a very widespread, and growing, hernia repair method. It’s a difficult subject to deal with, but they’ll have to come around eventually.
Chaunce1234 has put a list together which you can find on this site. A few doctors that remove mesh and also repair hernias are Dr. Towfigh, who often posts on the site and is a moderator, I believe, Dr. Peter S. Billing of Edmonds WA, Dr. Brian Jacob, in NY, (he actually lists mesh removal as one of his procedures on his internet profile), and Dr. Igor Belyansky, in MD. There are several others. They have seen the signs of bad mesh and also the results of removal so they should have the best perspective. Doctors who only do mesh implantation, like your surgeon, generally don’t want to, and don’t know how to, deal with mesh-related problems. It’s just the state of the industry at this time.
I’m not saying that you will need or want mesh removal. But getting an early evaluation and gaining knowledge now will help you in the long run. If your body is not dealing with the mesh in the right way, time will not help much besides getting used to a diminished life, and it might make the mesh more difficult to remove.
Your situation is very similar to mine, in all aspects. It started about started about three years ago, with Bard Soft Mesh and a direct inguinal hernia. Good luck.
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If I were you, in your part of the country, I’d try to get up to see Dr. Brian Jacob in New York. I don’t know how the insurance systems work out there, so he might not be an option.
The more I learn, the more I realize that there are surgeons who are on the mesh program and there are those who realize that there are flaws with the mesh program and are trying to address them. You want somebody who realizes that mesh is not the fix-all that it’s described to be.
https://www.nychernia.com/our-surgeo…t-brian-jacob/
https://www.sages.org/video/laparosc…-chronic-pain/
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Here’s another thought – talk to a surgeon who removes mesh, even though there are few. You’ll probably get more in-depth advice one-on-one than on the internet. Most of them also use it for repair, from what I’ve been able to figure out, so should know what to use and how to use it. They will have seen what can go wrong and might offer some advice on how to avoid the problems. You might even decide to have them do the work if they’re available. Get several opinions, if you can.
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quote kevin-pa:I’ve been to my PCP and the nurse practitioner for the surgeon I have chosen. He is the chief of surgery in a medium-sized city hospital. They all advised me to get it fixed, but also if it’s not painful then waiting is fine until a better time.
I have scheduled a surgery date for Nov. 30th of this year, but I do see the surgeon in 9 days to discuss.
I am just extremely worried that I am rushing into this. I’ve read all of the horror stories about chronic pain, and I will regret my decision so much if that happens.
The number of permutations of “hernia’ and “mesh’ is huge. There are many different types of mesh and surprisingly large amounts can be placed if the doctor chooses to do so. Trust but verify, I would say. Find a doctor who can say that they have talked to patients years after the surgery and can verify that they are satisfied. You’re only 30 years old. The stories you’ll find around the internet about surviving the first three months after surgery are pointless. It’s the long-term that matters. The surgery itself is not bad, nothing compared to how you’ll feel if you get the wrong combination of materials and surgeon.. You’ll be looking forward to surgery if you have problems with the mesh implant.
Read through the link below, and search “SAGES” and “hernia” on youtube. There is much change happening in the field, and it’s not all good. Good luck.
https://www.herniatalk.com/5577-researching-surgeons-what-questions-to-ask
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I ended up with full coverage of both sides using Bard Soft mesh. Pubic bone to pubic bone and down to the bladder. The “cover all of the possible future hernia sites” approach. In hind sight, more focus on future recurrence than quality of life of the patient. Very conservative approach, professionally.
Don’t overlook your own physical characteristics. Even Dr. Towfigh has repeated the somewhat anecdotal view, as my surgeon has also, that low body fat people tend to have more problems with mesh, and that there is a view out there that lightweight mesh is best for them. Anybody, please correct me if I’m wrong or have misquoted. There are different 3D devices, some light weight. I mentioned early on that my surgeon had planned to use a light weight mesh but had decided on Bard Soft Mesh after seeing the defect. Maybe he had planned to use the light weight 3D device on me, but switched.
http://www.medline.com/product/3DMax-Light-Mesh-by-CR-Bard-Davol/Z05-PF69428#mrkSpec
That link I provided was really meant, even by the authors, to show the improvement of survey techniques. It’s only 136 samples, from 9 years ago. I would not put much weight on to the data provided at all. It shows though, that there’s a weakness in the feedback cycle to the surgeons and the industry.
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I’ve written this before, but if I was convinced that it was time to get the hernia repaired, I would find somebody that you trust who has had a hernia similar to yours repaired (distinguish between direct and indirect, they’re different), and have that exact procedure done by the same surgeon. Don’t be part of the experimenting that’s going on. There are still recalls happening, on mesh products that have been released to the public, for fundamental flaws in design. They don’t work in the real world.
That was the rationale that I used when I had mine repaired, but my reference person was a surgeon who had had a hernia repaired, but was convinced that the new ways were better. He guided me away from his successful procedure toward the new ways. He meant well but even he didn’t know.
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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.
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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.
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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.
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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.
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.
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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
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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.
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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.
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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.
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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.
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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?
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.
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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.
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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.
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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.