Good intentions
Forum Replies Created
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Phantom pain is a phenomenon common to amputees. It might be related to your problem. I posted a link below.
Did the surgeon remove all of the mesh? He/she might have left some that was too entangled and cut nerves that he/she thought would deaden the area. But might not have cut all that are involved in that area.
When I was recovering I found that sometimes more activity was better for resolving pain than resting. Getting fluids moving through the damaged areas left behind by mesh removal (and implantation). You might try more vigorous exercise like running if you have just been resting and hoping.
The path to recovery from mesh implantation is a long one. The area cut open is very large internally and the tension created by the healing process stresses all of the surrounding tissues, even after mesh removal. “Tension-free” only lasts for a few days. It’s another misnomer, like “minimally invasive”.
Could you share more details on the original mesh implantation? Type of mesh, the procedure used, etc. I assumed it was laparoscopic. Also, details on the excision.
https://www.sciencedirect.com/science/article/abs/pii/S0304395997000614
https://www.sciencedirect.com/science/article/abs/pii/S0304395900002645
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I hate to be a downer, but I just responded to someone else who had a similar thought about regaining one relatively small thing that they missed, and were planning to take the risk of surgery to get it back, even though they had a very full and enjoyable life without that one small thing.
You will be risking all of the good things that you described, for the sake of one small thing. If you have a bad reaction to the mesh, all of those things that you said that you now enjoy can be destroyed by chronic pain and discomfort.
Risking all of this –
“The last 5 years of my life have been amazing. I snowboarded, played tennis, travelled around the world had a great sex life.”
For this –
“things to stay the same and finally be able to run again.”
I had the same thought process. I could do almost everything that I wanted to do with my direct hernia except play competitive soccer. I took the chance just to get that one thing, the joy of playing competitive soccer. I never got it back and lost much more.
The numbers seem clear. About one of six (~15%) people who have mesh implanted will suffer chronic pain. The number for discomfort could be up to 30%.
It’s just the way things are today. The efforts to define the chronic pain problem more clearly, let alone do something to make things better, have stalled. Surgeons are just doing what they were trained to do, not really understanding the damage that chronic pain causes. Even worse, surgeons are starting to avoid mesh removal, I suspect because the patients are expecting to be made “whole” once the mesh is gone and it doesn’t happen. Then they get blamed, wrongly so, for the patient’s pain. The damage caused by mesh implantation is permanent.
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Try to look through as many posts on the forum as you can. Many of them are about pain from mesh implantation.
As tissue grows in to and through the pores of the mesh, it pulls on it and causes it to shrink and harden. Pain from mesh appears to affect about 15% of all mesh implantation patients according to many studies done over the decades that mesh has been used. The number for discomfort seems to be even higher.
Mesh does not “fail” per se. It can move as it shrinks allowing a hernia recurrence. Or it can cause enough pain that the patient seeks to have it removed. Generally, people involved in implanting mesh will not refer to a mesh “failure”. They won’t say that the mesh failed, they will say that the patient is suffering a mesh “reaction”, or a recurrence. Patient pain is not a quality used to define success of a mesh product. Only recurrence is.
The best that you can do is to try to avoid the things that cause discomfort/pain, and hope that your body can adjust to the mesh.
Absorbable tacks can take months to fully disintegrate so there might be changes for quite a while. Also, if they used Progrip mesh, it has an absorbable layer that can also take months to fully disintegrate and be absorbed. Progrip is very popular (“celebrating two million implants sold worldwide”).
It’s sad that you are having these new and unexpected problems. But, you are part of a significantly large group of people. Read through the posts and do more reading on the internet and you will learn a lot. Find out what type of mesh was used and that will help you understand also. There are many many different types.
Good luck.
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Is watchful waiting different for a femoral hernia compared to an inguinal hernia?
From what I’ve read Shouldice will not repair a hernia unless there is a bulge. If you see a mesh repair surgeon they will operate no matter what type it is because the “state of the art” is to cover all of the possible hernia spots with one large piece of mesh. They would probably take a look at the other side and implant mesh there also.
Will Shouldice give you an examination? I would go there first just for the education. They might do only one type of repair but they should know how to diagnose your condition.
Good luck.
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Dr. Peter Billing did his residency at the Mayo Clinic and might be able to help. He removed the mesh inside me without any of the unfortunate complications that are often reported. He has removed references to hernias on his company web page but will probably be happy to talk to you and might have a recommendation. Try the company site or his LinkedIn page, linked below.
You should be aware though, if you do contact the Mayo Clinic, that the surgeon who implanted the mesh, then resisted helping me with the problem and suggested that it was just too bad and I’d have to learn to live with the pain, also did his residency at the Mayo Clinic. The Mayo Clinic is a very large mesh-oriented facility. They are “mainstream” hernia repair.
I have noticed that surgeons who implant mesh tend to look for “solutions” that take the blame off of the mesh. Neurectomies, medication, etc., even if they remove the mesh. They seem to have trouble just accepting that the mesh itself is the cause and if the mesh is removed the patient will get better naturally.
This perception fits with what you wrote in BobbyO’s Topic about Dr. Dupree. Cognitive bias is a very powerful psychological force.
I highly recommend contacting Dr. Billing. You might even find that it is worthwhile to travel to Washington if he is willing to take you on. Don’t assume that traveling will be automatically more expensive than staying in your insurance system.
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Here is information from the internet. Looks like he is an expert in robotic surgery.
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Look up the authors at Virginia Commonwealth University Department of Surgery and Thomas Jefferson University Hospital in Philadelphia.
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Here is a good starting point. How did things go so wrong? Weird how the selling points in 1997 are about exactly the same as today.
https://www.bizjournals.com/seattle/stories/1997/12/01/focus6.html
Bright future possible for area surgeon’s hernia patch
Chehalis surgeon Robert Kugel has developed a new technique for hernia surgery that he claims produces an ideal combination of reduced pain, a short recovery period and a low recurrence rate.
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A presentation on a known bad aspect of the hernia repair field would be interesting and impactful. Many of the “myths” result from bad products or methods, and the efforts to fix the damage caused by those bad products/methods. Why not help spread the word about the bad products, achieving the same sort of goal as dispelling “myths”?
Plugs would be a good starting point. You could describe how the concept was developed, then commercialized and heavily promoted, but ultimately has become a major part of the chronic pain problem. Yet, all of the major device makers still sell them.
Another might be the C-QUR oil coated mesh product. Concept, commercialization, promotion, chronic pain, lawsuits.
These types of videos would probably not be as well-received at the shows by industry and colleagues but they could be honest open enlightening reports about bad products. More impactful. Start shining a light on the actual products and methods that are giving your profession a bad reputation. Remove the poison and everyone will be healthier.
You might get a colleague to join you.
https://twitter.com/novitskyyuri/status/1021596087600271360
plugs are evil and should not be extrapolated as all things "mesh"
— Yuri Novitsky (@NovitskyYuri) July 24, 2018
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I put together a short summary of my experience with mesh removal in another thread. I have linked it below. I also found a few more threads that might help your search, which I will link in separate posts (the forum software tends to balk at too many links).
The COVID situation still makes choices difficult, but you might consider flying to Germany to see Dr. Muschaweck, or going to Canada. Many of the other developed countries actually are cheaper to have medical care in than the USA, surprisingly. The US system is bloated and aligned solely with insurance companies and large institutions. The individual is alone once they get outside the “system”. It’s a shame but that’s the way things are today. Best to realize that early so that you can be prepared for the struggle.
Here is my experience with mesh removal. It’s a long-term project but progress is steady and upward.
https://herniatalk.com/forums/topic/healing-from-mesh-removal-surgery/
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I just watched the Yunis interview and am impressed by his thinking and methods. When he removes mesh he does not assume that a previous surgeon made a mistake and implant more mesh. He just removes the mesh and plans to do an open pure tissue repair if there is a future recurrence. In other words, he accepts the fact that the mesh might be the problem for that specific patient. Somebody recently posted about having mesh removed but then a new piece was implanted. I hope that they are doing well but it’s hard to imagine the thought process behind the decision from the surgeon.
The Yunis video is worth watching. The two sides of mesh or no-mesh are represented at the end. Kind of fascinating.
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Dr. Yunis does seem like he is worth considering. I think that somebody just had a non-mesh hernia repair from him and was impressed, I found th epost, and linked it below.. I have linked Dr. Towfigh’s Q&A interview with Dr. Yunis below also.
Where are you located and what is your financial situation? I did not know that Dr. Brown had retired. It is unfortunate that surgeons who will remove mesh might be leaving the field, with no replacements. In the Pacific Northwest, Dr. Wright of UW Medicine will remove mesh robotically, and leave nerves intact if asked. Dr. Peter Billing of Kirkland WA has removed mesh, via standard TAPP methods, but I just noticed that his web site has all hernia related topics removed. He might be distancing himself from the field.
There are still people left who will help you though. I posted Dr. Billing’s web site link below, he would be worth a try. He removed mine and I think that he was the best choice for me.
Good luck.
Dr. Yunis –
Gettinganxious had a hernia repair from him not too long ago. Maybe he will respond. @gettinganxious
https://herniatalk.com/members/gettinganxious/
Here is the interview video.
https://www.youtube.com/watch?v=xcS6imYt-bA
Dr. Billing
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“Bumping” this Topic up to follow my recent post on Dr. Ponsky. He is a really smart guy and explains things very clearly. The Youtube video is worth watching.
He is much more reserved and deferential to the use of mesh in adults in this video than in his SAGES presentations. He sticks to pediatrics only. I think that he probably knows more than he showed in the Q&A. The adult hernia repair world really needs his type of critical thinking and willingness to buck the current dogma. I hope that he branches out.
He offers his email address at the end for anyone who might want to contact him.
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Here is a Q&A from HerniaTalk, and a Topic from the past. I have not listened to the Q&A but will now. It’s from one year ago.
https://herniatalk.com/forums/topic/herniatalk-live-qa-with-dr-todd-ponsky-09-08-2020/
https://herniatalk.com/forums/topic/marcy-repair-in-adults-with-inguinal-hernia/
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Here is what looks like his latest video, from 2019. He mentions Dr. Towfigh, as his debate opponent.
It’s a shame that he is in pediatrics only. His thought process, asking why mesh is used and if it is appropriate, is what all hernia repair surgeons should be using.
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I just realized that Todd Ponsky is Jeffrey Ponsky’s son. Todd is against mesh but his father is very much a proponent of mesh. How can the apple fall so far from the tree?
Here are more of Todd Ponsky’s videos from the SAGES channel.
Father presenting son’s work – https://www.youtube.com/watch?v=0wgryuucvRg
More about mesh or no-mesh. Points out the inconsistency of the choice process – https://www.youtube.com/watch?v=DTnWZmux75I
Anyone who can should see Dr. Ponsky first, if they have a hernia.
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Here are more Todd Ponsky links, below.
Do not confuse him with Jeffrey Ponsky, who works at the Cleveland Clinic and is a full-fledged mesh promoter. The Cleveland Clinic is where many surgeons get their mesh training.
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It might seem like I am targeting Dr. Chen, with my recent comments in another thread and then this new Topic. It’s just coincidence. But Dr. Chen is the President of the largest hernia centered organization in the Americas, and also a director at a famous hernia repair center at a world-renowned medical center and university. He is also a Professor, teachng new surgeons about how things are done. Students, and colleagues, will be looking to him for guidance on what is right and what is wrong.
Here is a fairly recent paper about the poor quality of work behind the “Guidelines”. These are the same Guidelines that are on the AHS web site, recommended to all surgeons doing hernia repairs. It doesn’t take much looking to start to wonder how these Guidelines were created and how they could become the gospel for all hernia repair surgeons. It’s pretty incredible, from any viewpoint, subjective or objective. How can so many professionals be blindly following these recommendations, without question?
https://link.springer.com/article/10.1007/s10029-021-02423-7
I had already linked this paper in a recent Topic.
https://herniatalk.com/forums/topic/new-article-questioning-the-validity-of-the-hernia-guidelines/
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Don’t overlook that people create sites on the internet for many reasons. That surgeon created her site just to voice her opinions about various things she sees at her work, and other causes she is concerned about. As she says, she writes for pleasure. But, really, she’s just another surgeon who does hernia repair.
She is a political candidate. She has Twitter, Facebook, and Instagram accounts. She wants her voice to be heard. In today’s world, taking an opposing view, to almost anything, is enough to get your name out there. But, besides being a surgeon, there is no sign that she is an expert in hernia repair methods. No publications or presentations about hernia repair methods. Just another person with an opinion. She seems to be involved in good causes but that might not transfer to surgery results.
The scientific papers and especially the studies that look at long-term results are where people should get the data that they use to form their own opinions. The numbers show the reality of what’s happening. The typical surgeon will stay in contact with their hernia repair patient for three to six weeks, then never hear from them again. Anecdotes from surgeons are not really very useful.
Just something to consider. You can find internet information to support any opinion these days. Understand your information sources. Good luck.