Good intentions
Forum Replies Created
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If you get a suture repair and it fails they can always go in and put “mesh” behind the failed repair. Just like starting over. “Mesh” was developed for that type of problem, mainly for inguinal hernias.
But, if you get a mesh repair and have chronic discomfort and pain issues, a “mesh” reaction, you might have to have the mesh removed. You might have more extensive reactions than just discomfort and/or pain. So, logically, from the standpoint of your personal welfare and future, it seems to make sense to try a suture repair first, since it has the least risk as far as chronic pain is concerned, both in probability and it having it fixed. If you believe the recent reviews about the growth of chronic pain with the growth of the use of mesh, as described by both Kavic, and Bendavid, both former presidents of the Americas Hernia Society.
I’ve realized fairly recently, it’s kind of crystallized for me over the last few weeks, that many of the surgeons that recommend the mesh repairs, in all of their variations of methods and materials, don’t really understand pain, they conflate mesh-induced pain with the pain of a recurrence or other suture-repair types of pain. They consider them all as one “pain” just like they consider all types of mesh and methods as “mesh”. I don’t think that they really understand the difference between the two problems. They don’t distinguish between the hopelessness of trying to find a solution to mesh-induced pain, as opposed to the ease of finding help for a recurrence. The two efforts are not even comparable, one is almost impossible as mesh-induced pain is mostly denied, even today, while the other, recurrence, is coded in to the “system”. So you’ll see many comments comparing suture-based pain with mesh-induced pain, essentially describing them as comparable, but without considering the vastly different solution paths to the problems.
If you have a recurrence you’ll find thousands of surgeons ready to fix it. If you have mesh-induced pain you’ll be in a whole different world, alone.
Good luck. That’s my view, as of today.
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A controlled Valsava maneuver might make the bump show again. If you are subconsciously holding your abs tight, you might be closing the defect. A direct hernia bulge will disappear when you lay down and reappear when you stand up and your intestines press against it.
But, overall, it seems like you should go see a hernia repair expert, instead of a GP.
If it doesn’t bother you could just join up and let the military take care of it.
Good luck.
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It is much much easier to repair a suture-repair recurrence than to fix the damage from mesh-induced chronic pain. I doubt that the recurrence repair takes 4-6 hours under general anesthesia, with all of its associated risks, plus the extended years-long healing time from mesh removal.
Oversimplifying the damage that mesh can cause is one reason that progress is not being made. It’s not just “pain”. I’m not surprised that people don’t understand that damage, if they haven’t had it. It’s hard to comprehend, by itself, let alone understanding the difficulty in finding a solution if you have it, including the resistance to dealing with it from most surgeons who encounter it in their patients. It’s a nightmare.
Rand Paul’s decision to have a Shouldice repair makes sense. If his Shouldice repair fails, he can have a mesh repair, as you are doing for your two patients. But if he had chronic pain from a mesh repair it would probably be permanent in some ways, even after mesh removal. Neurectomies and mesh removal are both drastic attempts to fix the problem that “mesh” caused, and they often aren’t enough. Why start with the riskiest procedure, the one that causes the most damage if it fails? “Mesh” should be the last resort.
The results of “failure”, recurrence or chronic pain, from “mesh”, versus sutures is vastly different and not really comparable.
I’m sorry Dr. Towfigh, but I’m still in the middle of recovering from a top-notch state-of-the-art best-methods mesh failure – mesh-induced chronic pain. My diagnosis and surgeon’s choice of repair method is perfectly described in the Guidelines. Checked all of the boxes. Perfect candidate, very healthy, non-smoker, no history of health problems. The procedure went perfectly and I had chronic and increasing problems as soon as I became active again. I know how bad mesh can be . I should have had a suture repair.
I don’t like to argue, I just would like to see my comments stand for what they are. The rebuttals just aren’t very substantial and seem to downplay the damage that mesh causes.
I posted the link to Doctor’s Suicides to express some empathy, as a patient who thought a lot more about suicide while dealing with the mesh-caused chronic pain. Lucky 46 was not being overly dramatic in his past posts. I hope that he is still alive. If you can’t work and you can’t think and you’re in constant pain, there’s little point in being. Those three things are probably the most common topics you’ll find in a suicide note, and those three things are what you’ll have if you have a mesh reaction. Please don’t try to compare a suture-based recurrence to mesh-induced chronic pain.
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Sorry Dr. Towfigh. What I’m suggesting is that because the specific cause of the 10 – 30% chronic pain rate is unknown, apparently, that it is “baked in” to the International Guidelines. Only the plug is called out as one “mesh” method to avoid, and even that reasoning is based on gut feel by some committee members. So if a person’s surgeon says that they use the Guidelines, or “mesh” because it is the state-of-the-art, they are saying that you have a 10 – 30% chance of chronic pain if you get a repair from them. It’s just how the numbers and logic work out. If they say that you’ll “be fine”, you can’t trust their words, because they can’t know that, they don’t have a basis to say those words, unless they know more than the Guidelines suggest. So don’t trust blindly, ask specifically. It’s more skepticism than cynicism.
My comment about the doctors being “against” the patients was extreme, but that’s what it looks like from out here, for certain doctors. Dr. Voeller’s comments about 4 – 6% debilitating chronic pain not being an epidemic, so it’s no big deal, and Dr. Ramshaw’s comment about “mesh clearly not being the cause of pain”, are examples of “protecting mesh”. Accepting the high pain levels as part of a mesh-based hernia repair. The “state” of the art. My statement is too broad, it should have been specific to the apparent leadership, the vocal representatives, of the community of surgeons. Maybe it’s time for new leadership, more vocal representatives?
I’m just trying to make it clear to any future patients that come to the forum that they have to do their own research, because there is no clear way to avoid chronic pain if they have mesh implanted. It’s a gamble. You can’t trust what the common surgeon tells you unless they have their own numbers to back up what they do. I have not seen any surgeons clearly state that they know that what they do causes less chronic pain than anyone else’s method/materials. 10 – 30% chronic pain is normal. The surgeons are accepting the Guidelines and the Guidelines have 10 – 30% chronic pain as normal.
Trust but verify, in simple terms. Everyone, including the surgeons,will be better off.
I wish it was easier. It should be.
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I’ve had this positive thought recently – maybe by banding together around a common set of guidelines the community of surgeons will realize that they have the power to change what’s happening, through their coordinated efforts. Instead of looking outside for guidance and direction, e.g. to the device makers for new products, maybe they’ll look to each other and work together to refocus on better healthcare. Hopefully the Guidelines will be reviewed on a regular and very frequent basis, but without the influence of the monetary support.
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I think that the reality is that the “mesh” situation has become self-reinforcing. Because the chronic pain problem has grown so big and will supply many lawsuits for years to come the community of surgeons feels compelled to gather together and become unified. Closing ranks against the outside forces. The recent “surge” for International Guidelines is an example. In the medical practice the best defense is that everyone else does it this way.
So, now it has become the community of surgeons against everybody else, including the patients. Many individual surgeons know that ‘mesh’ is a big problem and harming many people. But it’s not a problem that just a few individuals can make headway against. So they conform and lower their expectations for helping people.
It’s part of the general degradation of society that we see on the news everyday, I think. Hard to see where it will end, but the days of just trusting what your doctor says, blindly, because they are the professional physician, are over. Too much conflicting information for that to be a rational thought process.
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Dill, I don’t know your financial situation but you might find that you’ll spend almost as much out-of-pocket trying to use your insurance as you would if you just traveled to your preferred choice. Also, consider the length of time that you want this to last, trouble-free. It’s probably worth spending more than you would on a new car, maybe even a house.
I tried to stay within my insurance program too and it was a big mistake. My choices were limited and I ended up just going with the “system”. Even just the hernia repair cost more than projected, then the problems afterward were multiples of that initial cost, in many different ways. Plan for the rest of your life and make the investment now. And, all scars fade.
I just posted this in another topic but Dr. Petersen of No Insurance Surgery in Las Vegas seems to fit what you’re looking for. Search those names and his site will come up.
Of course, Dr. Brown seems a better choice. He just posted approximate costs for a hernia repair at his place in another topic. A couple of thousand dollars under a typical deductible. And it includes all extraneous costs, like anesthesia, which can add up to quite a bit.
Also, have you consulted with Dr. Towfigh? I think that she offers mesh-free repair but I’m not sure where you would fit in to her decision-making process. It’s the first tweet on her Twitter account.
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Dr. Petersen of No Insurance Surgery also repairs hernias via meshless techniques. He is known for mesh removal but does both.
Google the names and his practice will come up.
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Medtronic products are typically made from polyester fiber. Parietex, Progrip, and Versatex are the trade names.
Those used to be Covidien products. Medtronic acquired Covidien in 2015.
http://newsroom.medtronic.com/phoenix.zhtml?c=251324&p=irol-newsArticle&ID=2010595
https://www.medtronic.com/covidien/en-us/products.html
[USER=”2829″]jon21st[/USER]
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To be clear, I’m suggesting that you take extra care to avoid “the fire”. The Guidelines will tell you what most surgeons will suggest, if they believe in the Guidelines. It’s going to be more mesh. I believe also that Dr. Earle is a firm proponent of “mesh”.
The surgeons will see” trapped nerve” and take extra care that they don’t do anything to cause another “trapped nerve”. But the real problem might be that your body “over”- reacts to “mesh”. Since the medical community considers all of the various materials and forms of mesh as one thing, it will be very hard to tell if the new mesh will be better or worse than the one that was removed. The only “mesh” product that the Guidelines recommend against, if I recall right, is plugs. But their reasoning is not based on the numbers, recurrence and chronic pain, compared to other forms. It’s based on conjecture about the bulk of the plug causing too much tissue growth.
If you can get the details of your first successful mesh implant consider having that type of material used. At least you have some good information for that option. Why not find that surgeon since they got the first one right?
Good luck. The last sentence I copied means that if a hernia is found, that laparoscopic mesh implantation is recommended. Because you had an anterior repair before. Posterior is from behind, from “inside”, using laparoscopy. Today’s lap methods involve large pieces of mesh to cover all possible future hernias. Laparoscopic repairs are meant to be permanent.
“ For recurrent hernia after anterior repair, posterior repair is recommended.”
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It might help to describe the type of material and method used for the “open” repair. There are many. Onstep, PHS, Licthenstein…they’re all called “open” but actually very different in how much material is used and where it’s placed.
Good luck. There is a bodybuilding forum out there on the internet with a very long hernia repair thread. You might find specific information there.
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quote Dill:I had originally thought I would travel to Shouldice for hernia repair…
Still I’ve returned to considering them and then on a local list serve where I put out an SOS about any local doctors who do no mesh repair, one person wrote and said like me he hadn’t wanted mesh, went to Shouldice, and his repair failed 8 months later. Now he has mesh. My GP has another patient who went to Shouldice and was completely happy with her repair.
One very big problem with making a good choice is the lack of detail available about what’s currently available, especially in terms of time. Without the details it’s just “mesh”, and “fail”.
Do you know what type of hernia the person who had the Shouldice failure had, and how it failed? And how does he like the “mesh” repair now, what type of “mesh” repair was it, and how long has he had it? Does he know why it failed? Did he choose a “mesh” repair because of the failure or because it was his only choice? Even though he had a failure, he has a rare comparison experience between two different types of repair. Does he recommend a “mesh” repair, for you and/or for everyone?
From your other post it is apparent that you are female. Did your friend have a male-type failure or was it a type of failure that you might have also?
Those are the questions I would try to answer. The hernia repair field is very complicated in reality yet extremely over-simplified in discussion, even by the expert surgeons in the field. You can’t decide just on the word “mesh” or “no mesh”.
Good luck.
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I apologize in advance for any offense the following causes. I tried to rewrite it many times and the same thoughts come out. I don’t find any real guidance in the Guidelines that would have helped my surgeon avoid causing me four years plus of pain and suffering. He would say the same things to get me to accept the surgery, and do the same things to me, and I would end up in the same condition afterward. Three years after I had my surgery, at the time of publication, and nothing is different. I don’t find anything useful here that would prevent any person from ending up like me, or any surgeon from creating my problems.
It is a very impressive piece of work.
Still, recurrence rates are described as the main focus, with chronic pain the second. It was well-documented that chronic pain was the new prevalent problem by 2018 but they don’t acknowledge it. They should be touting the success of mesh to reduce recurrence rates and refocusing on chronic pain.
“The main goal of these guidelines is to improve patient outcomes, specifically to decrease recurrence rates and reduce chronic pain, the most frequent problems following groin hernia repair.”
And the choices will be more limited as surgeons only learn to use “mesh”, in any of its many forms.
“Surgical treatment should be tailored to the surgeon’s expertise, patient- and hernia-related characteristics and local/national resources. ”
In essence, the Guidelines are a minimum, a review of the state-of-the-art and the past, the least a surgeon should know, actually reinforcing the fact that nobody has a solution for the new chronic pain problem.
This statement below seems to absolve “mesh” as a material cause for pain, with the old saw that “everyone is different”. It takes the focus off of the materials, but doesn’t give any guidance on how to avoid problems. It, in essence, discounts the whole of the massive document. All of that work done and the result is:
“Thus HerniaSurge recommends that surgeons be acquainted with the fact that every specific device has its specific risk pattern, which is strongly affected by the surgical procedure and the patient’s biology.”
Ethicon’s (Johnson & Johnson) statement and presence on the front page of the web site isn’t really a good look either. Would they be involved if “mesh” was not? It seems unlikely. Are the organizers influenced, consciously or not, by the realization that Ethicon’s support goes away if mesh is not the preferred choice of repair? Is the HerniaSurge group required to put Ethicon’s sales pitch on their front page?
“Shaping the future of surgery.”
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Most surgeons will use synthetic mesh, either polypropylene or polyester. In your case, because a “trapped nerve” was defined as the cause of the pain, you could easily end up with another, bigger, piece of mesh. If you were fine for three years before the problem happened more mesh might work for you. But if you had discomfort and pain from the beginning then it might be that the mesh itself caused the “trapped” nerve due to constant inflammation. Generally, the problem solving thought process with mesh starts with the assumption that the mesh is not the problem, even though inflammation is cited as the reason for its success. Trapped nerves, erosion, improper fixation, etc. are the usual suspects for mesh implant pain.
So, if you had discomfort and pain for three years, from the beginning, before having the mesh removed, it seems reasonable to assume that your body does not work with mesh, and you’ll have more problems with another mesh implant. Something to consider. My mesh implant only felt right for a few days at the end of the 21 day wait for my second appointment. As soon as I resumed normal activity levels it never felt right again.
Problems are not really defined between the different types of synthetic mesh. All mesh is considered, or at least discussed openly, as one thing.
I am not a doctor, these are my opinions from what I’ve learned over the years. The International Guidelines, linked below, will give you a good idea of what to expect. The Americas Hernia Society endorses the usage of the International Guidelines, so most of the surgeons you visit will probably follow them. I’m not suggesting this is good, it’s just the way things are.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5809582/
You would probably fit here, below, as a recurrent hernia, with a posterior implant and more neurectomies. You’ve already gone through the first part of the description.
Good luck. Find a surgeon who really understands what happened to you in the past, not just the “state of the art” today. And make your own decision. Since you had a failure, you are not normal so there is no standard procedure for you. You could start another cycle to failure.
Excerpt from Guidelines:
“Chronic postoperative inguinal pain (CPIP) is defined as bothersome moderate pain impacting daily activities lasting at least 3 months postoperatively and decreasing over time. CPIP risk factors include: young age, female gender, high preoperative pain, early high postoperative pain, recurrent hernia and open repair. For CPIP the focus should be on nerve recognition in open surgery and, in selected cases, prophylactic pragmatic nerve resection (planned resection is not suggested). It is suggested that CPIP management be performed by multi-disciplinary teams. It is also suggested that CPIP be managed by a combination of pharmacological and interventional measures and, if this is unsuccessful, followed by, in selected cases (triple) neurectomy and (in selected cases) mesh removal. For recurrent hernia after anterior repair, posterior repair is recommended. ”
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quote allj:Dr. Towfigh,
I had a plug removed in 2006 by Starling and student for an inguinal hernia and replaced with alloderm and had a neurectomy. It’s been a real challenge managing the pain and weakness in the groin while trying to stay active and sane. I’m 72It might be good to know more about the original repair. There are several types of “plugs” out there, different materials and designs. I think that they are usually combined with a patch. How long was yours in before you had it removed? Why did you have it removed?
It probably doesn’t matter a lot as far as getting your problem fixed. But it might, and it would be interesting, to me anyway.
Chaunce1234 collects good information about surgeons around the world, and their specialties. Here is one of his recent lists for surgeons in your area.
https://www.herniatalk.com/7800-hernia-specialist-in-boston-area
[USER=”1916″]Chaunce1234[/USER]
[USER=”2821″]allj[/USER]
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I just noticed this and really don’t know what to think about it. Johnson & Johnson and Bard have funded the creation of the new “group” called Hernia Surge. They have a web site, supported by Johnson & Johnson/Ethicon. On the web site are links to the “International” guidelines for groin hernia management, which recommend that mesh is the most appropriate repair method. And, on the very first page, they have a symbol of a piece of mesh as their logo. Weird.
Feel free to correct me if that’s not a representation of a piece of mesh.
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Didn’t make it. “Unapproved”. Probably too many links. Here’s the start of it…
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Here’s the Hernia Surge web site. Kind of an odd name for a branding exercise…Hernia Surge. Supported by Ethicon, AKA Johnson & Johnson, who also started the “International Hernia Registry”, which they are using in their marketing literature to sell mesh products, even though no study results have been posted, links below.
I wonder how things would be if the Hernia Surge group had determined that tissue repair was the most appropriate repair method for most hernias. You can’t deny the conflict of interest no matter how honorable the people involved. Sorry to be so cynical, but I work in these large corporations and understand what goes on. It’s in the news these days, with Boeing, Purdue Pharma, Monsanto, etc. as examples. All around us.
https://clinicaltrials.gov/ct2/show/NCT00622583
https://clinicaltrials.gov/ct2/show/record/NCT00622583
https://clinicaltrials.gov/ct2/show/results/NCT00622583
https://www.ethicon.com/na/products/hernia-mesh-and-fixation/hernia-mesh/ultrapro-advanced
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The study was funded by Bard and Johnson & Johnson.
“Disclosures
All HerniaSurge members are active in the scientific community. An additional course was given to all involved members to guarantee unbiased literature searches and review.
The guidelines are the property of HerniaSurge and they were financed through grants by Bard and Johnson & Johnson. The sponsor had no direct or indirect influence on the methodology or the content of the guidelines.
TA, FB, TB, RB, KB, PC, ADB, HE, RFO, LNJ, IK, JK, LL, DL, MLO, AM, HN, PN, MP, MM, WR, DS, RSA, NS, RSI, MSI, SS, MSM, HT, ST, BJH, GVR, NVV, DW and AW report grants for meeting expenses related to the submitted work from Johnson & Johnson and Bard, during the conduct of the study.”
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Here is what is essentially a summary of that huge document, by two of the authors involved.