Good intentions
Forum Replies Created
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It looks like posts can still get blocked if too many links are included. I’ll try to break mine up.
I have posted about TELA Bio products before. It’s still very early days for their product line. One year of data for inguinal hernias and only 31 patients. Their literature re inguinal hernias says that nobody reported chronic pain but it’s not clear that anybody even asked. Publications are mentioned but the reference data needed to find them is not provided. I think that you can “Google” Tela Bio and find some. Seems heavy on sales, but light on supporting data. Where’s the data? I want to believe but need more.
I think that I found the paper used to support Ovitex for inguinal hernias. No detail at all about how they determined chronic pain. It’s not a very informative paper.
https://www.sciencedirect.com/science/article/pii/S2405857218300196
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I missed the one month for $9.99 part. Even better if you’re a fast reader.
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Have you had a second opinion? Dr. Towfigh just posted a comment about being able to “sew” laparoscopically using robotics. That seems like what you would need and I don’t think that robotic lap would require cutting away your obliques. I can’t imagine obliterating the obliques for anything but a life-saving effort. Seems like too much. @drtowfigh
If you read through the posts you’ll see the huge variation among surgeons and their methods. Despite the usage of words like standards, gold standards, and standard of care, the variation is incredible. Get some second and third opinions. Technology is advancing rapidly, in both good and bad ways.
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I think that she meant the “Post-Op Recovery” topic by rosenrubies.
https://herniatalk.com/forums/topic/post-op-recovery-what-to-expect/
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Actually, the Mayo Clinic does have something going on, a groin pain after hernia repair study. The description is almost void of useful detail though. Not even a starting date.
https://www.mayo.edu/research/clinical-trials/cls-20417927#overview
https://www.mayo.edu/research/faculty/farley-david-r-m-d/bio-00026525
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If you, @jnomesh are actually in touch with the family you might try to get them away from the “name brand” clinics. The Mayo Clinic is a major “mesh clinic”. That is where both the surgeon who implanted mesh in me and the one who took it out did their residency, and learned how to implant mesh. I don’t think that the Mayo Clinic is at the forefront of the medical field anymore. Reputation might be bigger than reality. Robotic surgery would be the best method to remove the last fragment, as I understand things. Dr. Towfigh, for example.
Also, apparently, they were told that the mesh was “defective”. That’s what was written in the article. It doesn’t look like that was the case, as you know. The mesh just did what mesh is known to do, moved and folded up. It’s not uniquely defective, it’s just a defective technology. Or maybe the type of mesh actually is wrong for hernia repair. But that is one of those undefined areas.
Thanks for collecting and posting these stories. Each one is just a sample of what many more people probably experience.
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It doesn’t look possible. I was going to post the old herniasurge page with the
J&J logo (I copied it and saved the image) but there’s no option for attaching or pasting images.But I did find it on the “Wayback Machine”. Internet archive.
https://web.archive.org/web/20180809000128/http://herniasurge.com/
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Cshelter, I apologize for taking over your Topic. If you start a new one I will stay out, and leave you alone. I learn new things though, each time somebody opens a new Topic and need to follow them out. I can’t edit my older posts.
@cshelter
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I just found what is essentially the updated version of that 2014 paper. Things are much more clear, pain is mentioned 26 times instead of just 2. Herniasurge still looms over the effort though.
Worth reading.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5981671/
Here is the Herniasurge page, with their mesh logo. Those that might have seen earlier posts about Herniasurge will see that the sponsors are no longer highlighted. Johnson & Johnson used to get about 1/3 of the front page.
They are not there anymore. Pretty fascinating, in a macabre way. Funding apparently comes through the European Hernia Society now. But where does EHS get their money?It’s worth following what these guys are doing. They might be the most influential group on hernia repair in the world.
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I overwrote in my reply. Got a little bit carried away. I was struck by the lack of quantification (quantitation?) though, which is common in all of the discussions of “best” practice, when it comes to hernia repair, and the difficulty you will have in trying to “rank” methods, based on outcomes. Much opinion and feel but not much clear verification.
I went out to find something similar to what the people who followed up proposed. I think that a “decision-tree” is the thing. Engineering and science types might call this a flow-chart. Here is a paper about forming a “decision-tree” for hernia repair methods. Digging deeper though, of course, it leads back to the European Hernia Society, which leads to Herniasurge, which leads to Johnon & Johnson and Bard, and other device makers.
Again, you’ll find numbers when they support mesh, and words like “significantly lower” when things aren’t clear. And, despite the Guidelines recommending against it, Dr. Kockerling includes the plug systems in his tree. And if you search for the word “pain” it only appears two times. The paper was published just over 5 years ago. Dr. Kockerling was in the working group of the Guidelines effort.
Anyway, I think that something like this is along the lines of what you’re trying to do. It would be interesting to see what the tree looks like, if it was generated from a patient’s long-term quality of life viewpoint. Including “pain” and “pure tissue” as variables, instead of setting them aside.
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@johnc c
Notifying
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Is this the one? I used Google to translate the page. It is Wiese, not Weise, if so.
https://www.chirurgie-hessen.de/
https://www.chirurgie-hessen.de/Leistungen
“Martin G. Wiese
Since training in the clinics of the Main-Taunus district of Bad Soden under Professor Peter Wendling, I have increasingly dealt with the topic of hernias, i.e. soft tissue fractures, in addition to general surgery. Since then I have been involved in the development of new procedures and have been a hospice center for hernia surgery for years, and since 2016 also for international guests. With us you get an individual concept for the care of your inguinal navel or scar fracture, also in cooperation with neighboring clinics. A specialty is chronic groin pain and groin pain in athletes. I regularly give lectures on these topics and have performed several live operations at international congresses.” -
What you’re proposing should be in this, below, already. If it is, but does not represent reality, that’s the hurdle that needs to be overcome. Something is skewing the effort.
https://www.sages.org/publications/sages-manuals/sages-manual-hernia-repair/
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Without numbers, the percentages or odds of certain things happening, AND the type of damage that each causes, debilitating versus uncomfortable, for example, a case could be made to use any of the methods, using a list like Dr. Towfigh’s. Lower, higher, majority, more, less, etc. don’t have much meaning without quantification. 51% is more than 49%. 51% is a majority. The list is a great start but needs filling in to be useful to a patient.
You might actually be helping those that want more of the “bad” methods. For example, Johnson & Johnson has their “International” Hernia Mesh Registry which they delay publication of every year, but cherry pick data from in the meantime to support their products. e.g. The only mesh product that the “International” Guidelines recommend against, the plug, is promoted by Ethicon (a J&J company) using IHMR cheery-picked data, in their professional marketing literature. J&J supported the group that put the Guidelines together, financially. So you have a J&J supported effort that defines plugs as bad, but at the same time you have J&J supported data saying that they are good and should be used. If J&J (Ethicon) was an honest company they would take the Guideline data as evidence for discontinuing plugs. But they have done the opposite.
I use J&J as an example often because what they do is so obvious and documented. Contradictory efforts and data everywhere you look. But my main point is that without objective conflict-free measurements, real numbers, your effort can be manipulated to support the method that makes the most money. Not what you intended.
And, if you’re not very thorough and careful things can get overlooked, maybe because you’ve seen them so often. No offense Dr. Towfigh, but despite almost all of the chronic pain stories on the forum being of the laparsocopic mesh implantation type, you did not mention pain of any kind in your “Cons” section for lap mesh. Many people have also questioned the recurrence rate numbers. Is “Highest” recurrence rate, 5% vs. 4% or 10 vs. 4? Which method has the “highest” chronic pain rate?
And, one more thing – “open” and “mesh” are just way too broadly defined. You just posted in a different Topic about PTFE mesh shrinking 40% and “others” 10 – 25%. That needs to be part of the list, I think, if the list will really be useful in making a decision. Shouldice is open without mesh and they have data that does not match the list, as I understand things.
I hate to be a downer, but I think that you have to be careful not to lead people down the wrong path, as well-intentioned as your effort might be. What you’e proposing is a huge effort to do correctly. And the “pros” have done it, several times over the years, with their SAGES Hernia Repair manual.
Good luck, but be careful.
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There is a lot more for you to read on the forum. All of your questions have been addressed over the last few years. Don’t think of all of the mesh-based procedures as “mesh” and all of the non-mesh procedures as “non-mesh”. There are countless variations for both. You can at least avoid the worst of them. Like the plug procedures. Even the supposed experts recommend avoiding the plug, even though there are “top-notch” doctors who still use it.
Have you talked to any Crohn’s disease specialists about mesh-based repairs? They would know more than the hernia repair doctors about the odds of problems since they see more Crohn’s patients. Placing an inflammatory material in the vicinity of already inflamed intestines seems like a very bad idea.
If you do the math on traveling to get a non-mesh repair versus staying in your insurance plan and getting a mesh repair you might be surprised at how close the costs are. The insurance system inflates costs then they are negotiated back down, but they still end up very high, for the patient, in the end, especially those with high deductibles. Spend some time and write down the actual out-of-pocket costs, if you can. Don’t overlook facility fees and anesthesiology and other odds and ends. A good hernia repair shop will be able to estimate total costs for you after talking to your insurance company.
Finally, don’t overlook the most important thing of all – if you get a suture repair (AKA pure tissue) and it fails they can still place mesh to repair the recurrence. If you get mesh and have chronic pain problems they can only try to fix that by removing the mesh. Unless you try “pain management” pharmaceuticals. Think about the cost of your Crohn’s disease drugs on top of pain management drugs.
Mesh is very high risk in terms of chronic pain. 10-15% seems to be the accepted number. Suture repairs are not. Many professional studies seem to show that both are comparable in terms of recurrence odds. If a person does a thorough cost-benefit, risk-reward analysis I think that choosing suture repair as the first attempt is obvious. And that is for a healthy person without your complications.
Today’s hernia repair field is skewed towards simple, quick procedures. Not long-term health. The long-term problems are handled by pharmaceuticals and pain management, and/or more surgery.
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I have not watched this video yet but it has your question in the title.
https://www.youtube.com/watch?v=XqygsAX8puQ
You did not distinguish between mesh or non-mesh. Somewhere out there is series of four tutorial videos describing the four main ways to implant mesh. In the last video the surgeon says it doesn’t really matter which way is chosen as long as the surgeon feels comfortable with it. As long as the mesh gets in, any of them is good enough. All that matters is getting the mesh in. I had created a Topic about it but the Search function is not finding it.
Search the SAGES library on youtube and you’ll find a lot. Here’s another.
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It is very common to “take a look” at the other side during a laparoscopic unilateral hernia repair. Apparently you can see a hernia, via both TAPP and TEP, if one is present.
On the other hand, once the mesh is in place and has been “incorporated” things tend to look just fine by the TAPP approach, apparently. Even when folded. My surgeon wrote in his operative report that everything looked normal, from inside the abdomen, but when he started removing the mesh he found that one side was folded and the other side had slipped downward. If he had just been “exploring” and trusted what he saw nothing would have been found, I assume. The decision to remove the mesh was made before the surgery.
I recommend talking to a surgeon who has a history of removing mesh. They will have heard the symptoms beforehand and seen the results of the removal. They’ll have the knowledge to draw a correlation, and assume cause and effect. A new surgeon will be looking for obvious physical signs.
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I would remove this method of “Reply”ing to a post. The Reply gets lost in the middle of the thread. The other, more common way of allowing a Quote in a Reply, that shows up at the end of the thread works much better. Many people that are following a Topic will start at the end and work back to the last post that they read. They won’t see the Reply in the middle of a long thread.
I’m sure that it is just a simple setting in the Forum software somewhere. Just a choice of either method.
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I would be worried about mesh interfering with the Crohn’s.
In today’s world of specialization, you’ll find that people have expertise in only a very narrow area,and will defend that expertise. Hernia repair doctors will focus on the hernia repair. Not the Crohn’s. Don’t choose to listen to the wrong expert.