[Good intentions]

This is exciting Dr. Towfigh. I hope that some good comes from it.

One question I would like to pose, that I’ve also recently posted about, is the extent of the role of the FDA in approving new devices. Of course, mesh is defined as a medical device. Do the medical device makers supply the approval data, or does the FDA do actual product testing? If the FDA does testing, where can the results be found? If the device makers supply the data, how can they be held to account if their data does not match reality? And where can their data be found?

A second question would be – how is adverse event data collected? Who supplies it, and who collects and tabulates it? For example, if I, as a patient, complain to my surgeon that I have a problem with my mesh implant, how far along the path to removal do I have to go before it gets recognized as an adverse event? Is the first complaint the trigger, or does some actual physical action have to take place? Do the doctors and surgeons trust the adverse event reporting function of the FDA? Do they have a professional obligation to report what their patients tell them?

There are many stories about patients who can’t find relief from what they feel are bad mesh reactions, but it’s not clear if the FDA knows about these patients.

I look forward to seeing this effort progress. It might be that small changes could have big effects. But without good information nobody knows what to act on.

[Good intentions]

Here is an example of how far back they go for the original material that everything following is equivalent to. The trail of equivalence starts in 1976.

Of course, there are other requirements to meet before selling the product. But the bar seems very low from the start.

https://www.accessdata.fda.gov

[Good intentions]

I think that the doctors that are part of bigger practices/clinics have too much paperwork to do to maintain a personal relationship with their patients. Plus, in today’s health care system, they probably have to account for all of their time, and each patient contact. It might also be part of today’s training, to maintain a certain distance from their patients. And, typical of large efforts, division of labor is more prevalent. Specialists that only do a few things, and have to leave other tasks to other specialists. So that the insurance company codes will fit.

I think I know who the sports hernia doctor is. He contacted me quickly also. It was odd and surprising, having been used to the day or more delays after every communication attempt, but after some conversation I realized that he was just being more true to his profession. He is very knowledgable.

I notice that you seem to have decided that you have a sports hernia. I read your story in your other posts and it doesn’t seem like it would be a typical sports hernia. You might be limiting your possibilities.

[Good intentions]

quote Beenthere:

The knowledge, skill and experience have more to do with the outcome than mesh or no mesh.

Beenthere, I know that you’ve been through a lot, I’ve read your posts. But this, what you wrote above, is the standard meme being propagated by the medical device makers. I think that many doctors and surgeons actually believe this to be true also. No surgeon wants to think that what they are doing can cause harm. So, it’s easier to believe that it was the fault of an unskilled surgeon, a beginner maybe, not the mesh material itself, that is causing people harm

I think that this is one reason that surgeons are so resistant when their patients come back with problems. It’s just not supposed to be, especially if they are very skilled. They did everything “right”. But some or all of the mesh materials are not “right”. So it won’t matter how skilled the surgeon is, it’s the material that is the problem.

My surgeon was top-notch and actually part of a group that trained and certified fellow surgeons in the latest laparoscopic techniques. It didn’t matter, it was the Bard Soft Mesh itself that caused the problem, via constant inflammation. He did everything by the book.

The industry has a huge investment in the process and the materials. So much so that it’s almost incomprehensible to them that it’s not working the way they thought it was going to. Or, worse, it is known to some, but the business is too good to change anything, Like gun sales. Until a better material is developed, the surgeons will continue forward with what they were trained to do, hoping that stories like mine are total outliers. There will be a constant stream of injured patients, populating forums like this one. And probably many more people who just aren’t harmed enough to seek help, or post on forums like this, but aren’t in the shape that they were promised. Diminished, but still functional. The harm isn’t on/off, black or white, it’s a continuous spectrum.

It’s a terrible situation, with doctors and patients both, and other medical professionals, constantly seeing these mesh inflammation problems. Imagine being in the healing profession and knowing that there’s something wrong with what you’re doing, but having no one to turn to to help figure it out. Only a few people are stepping up to address the reality of what they see, but progress is very slow.

So, please don’t pass on the false memes out there, that a patient just has to find the right surgeon, and that all mesh materials are essentially the same. It’s just not true.

[Good intentions]

I had posted a long post, recommending that you consider what you plan to do after the surgery, with other details. Hopefully, it is allowed, I added a link to Ethicon’s web site and it got flagged as possible spam.

Mesh has more problems with active people. If you plan to be physically active, take extra care in what you choose.

[Good intentions]

I would consider strongly what you plan to do, physically, after the repair. Apparently, many professional athletes do not get mesh repairs, most likely because they have problems with performing their professions afterward. And there is a thought expressed often that low body fat people don’t do as well with mesh as normal or higher body fat people. But, low body fat people are also, generally, active people. I am a very physically active person and most of my mesh problems were due to physical activity.

When you add up all of the anecdotes and study results it looks like physical activity and mesh do not work well together. If you lead a sedentary life and plan to keep doing so you might be fine with mesh. But if you have plans to run, or hike , bike, or lose some weight via physical activity, you might regret having mesh implanted.

Also, if you can do it, distinguish between “mesh” as some big broad thing that’s all the same, and the different types of mesh, the amount of mesh, the type of surgery used to implant the mesh, and the surgeon’s results from past surgeries. It might be difficult to do because the medical device makers are “recommending” through their paid consultant surgeons that large areas of the abdomen be covered with mesh, to avoid future problems. They are propagating a myth that the doctors can put as much mesh as they like inside because it’s FDA approved and has no adverse effects. Some doctors know that this is not true and will tailor their approach to your future plans. But many doctors are just following the instruction sheet from the device makers. Find a physician who is truly a physician. You’ll have to ask hard questions, and try not to get lulled in to a false sense of security. Today’s medical system is supposed to be based on informed consent, with much responsibility passed on to the patients. But there’s not enough information available to be fully informed.

Here is a link, below, in which Dr. Kercher of Ethicon describes covering the side of the abdomen that was asymptomatic. Just put it in, it won’t hurt anything to have more. (I had wrongly posted that this video had been removed. It’s still there. About 2:00 is where he describes adding extra mesh.)

Get hard details from the surgeon that you choose. They should know how well their procedure works, by keeping track of their past patients. They’re not all the same.

http://www.ethiconinstitute.com/node/885/asset

[Good intentions]

quote Mbs:

I’m wondering if I will just have to live with this? Or if there are any potential solutions.

I’ve seen people get good advice on the forum if they give enough information. But, sometimes, the same doctor might not be back for weeks. And by then your post might be buried and they might not even see it. For example, Dr. Towfigh might be the next to get on the site and read the posts. But she’ll only have the same small amount of information that you gave in the first post. Then, if you do decide to supply the information, she might not be back for another week or two.

They’re doing this for free, in their spare time. You’ll get back to about the level that you put in.

Good luck.

[Good intentions]

quote Beenthere:

About 5 years ago to this date, went to have the mesh removed and a small inguinal hernia on the other side fixed and the Dr. found a femoral hernia on the original hernia side. Pain gone and movement restored.

Have you contacted the surgeon who fixed the poor first surgery, 5 years ago? One of the problems with our big bureaucratic medical system is that doctors lose touch with their patients. They don’t know if what they did worked, or how well it worked if it did. He/she might have some thoughts on what happened. You might have something in common with their former patients. They might have a solution already in place. Worth contacting them anyway, just to let them know.

[Good intentions]

quote NFG12:

Also I was wondering if my mesh was put in with the TEP method that when I got it removed robotically does that mean it is more invasive because the mesh is placed outside the peritoneum? Would that mean you have to go through more tissue to get to it rather than if it was done with the TAPP method when the mesh was put in?

I think that both TAPP and TEP place the mesh in the same are, between the peritoneum and the fascia. TEP apparently avoids the possibility of injuring the abdominal contents, I believe, by leaving the peritoneum completely intact. But, if healing goes well, the end result is about the same, with a sandwich of peritoneum, mesh, and fascia, all bound together. Mesh removal is the same for both, either TAPP or open, because the TEP approach is not possible anymore as everything is too tightly bonded. The T in TEP stands for “Totally” and it’s only possible because the peritoneum easily peels off of the fascia on the first surgery. After that first surgery the tissues get all tied together. That is my understanding. With TAPP the surgeon still creates a space between peritoneum and fascia but starts from the inside, instead of the outside.

A good surgeon can tell you what to do about the spermatic cord pressure. It sounds like the MRI doctor is describing the scar tissue pulling the deep ring open, the dilation, and applying some sort or pressure as well. More surgery might just be used to relieve that pulling. I recall reading about injections to break up scar tissue also. Seems like the surgeon who removed the mesh would have some advice and also find the followup information useful for future patients. Have you contacted him/her?

Good luck. The annual SAGES conference is coming up in April so maybe the forum surgeons are too busy to visit the site. Hopefully, these mesh problems will be a very active topic this year.

https://www.sages.org/

http://www.nmcsurgery.ae/laparoscopi…tepp-and-tapp/

Edit – here’s a more descriptive explanation of TAPP. The one above is not clear about mesh placement.

https://www.laparoscopyhospital.com/transabdominal_pre-peritoneal_(tapp)_vs_totally_extraperitoneal_(tep).html

[Good intentions]

Recurrences are usually from around the edges of the mesh. Material gets under the edge and works its way under and back out. The mesh can fold over also, creating a shorter path for a recurrence.

A trained doctor could tell you if you’ve had a recurrence. Your post is not very detailed, besides some new pain and a bulge when you cough. Nobody can really give you more advice than “see a doctor”.

I would be interested in the details of the operation if you can supply them. Open or laparoscopic, direct or indirect hernia, type of mesh, brand of mesh, etc. Good luck.

[Good intentions]

quote Jhf1210:

I am now 16 months past my open ilingual surgery with as
much if not more residual pain post surgery. I’ve been able to participate in some strenuous activities without being incapacitated by the pain but wake up every day with some level of discomfort and outright pain. I’ve been through acupuncture, massage and rest with varying degrees of relief. I’ve even been to another University of Washington surgeon for a second opinion and been told that the history shows that the surgeon did what he would have done and that neither of them have had this experienced before. He indicated that mesh removal is painful 2 plus month recovery and likelihood of recurrence, pushing me toward not pursuing removal.

It’s very difficult for healthy people with no pain to understand what it’s like to live with constant pain. The typical surgeon is healthy with no chronic pain. The word “pain” implies something sharp and intense but it’s really the knowledge and feeling that the pain, even if it’s at a very low level, never goes away, that you’ll never be healthy again that drives the patient to having mesh removed. The doctors tend to think mechanically, about where the parts are and if they are functioning correctly. So, really, the typical doctor’s opinion about what you should do about your pain is almost meaningless. He or she can only really offer good advice if they have a history of patients who they have “fixed”. Then they’ll have a base of opinions from their patients that they can pass on to you, and they’ll have a better idea of who they can help. In short, find a doctor who has “fixed” people with mesh problems. The ones who haven’t can only do what yours did and say that they don’t know. They don’t have anything to refer to.

I know that’s what you’re asking for but I just wanted to reiterate the fact that talking to someone with experience in mesh removal is the key. Chaunce1234 supplied a list in Post #4 in this thread – https://www.herniatalk.com/6259-seek…emoval-surgeon

Do you have any more details about your procedure that you can supply? Type of hernia, type of mesh, brand of mesh…etc. Direct or indirect hernia, plug and patch, Bard/Ethicon/Covidien… Those are factors to consider. Your records should still be available from the facility where you had the surgery. Where the operating room is, not your surgeon’s office. They will have the records of materials used, plus your doctor’s notes.

One thing that might drive you to having it removed is when you realize that nothing has changed for many months. You’re not improving and you might even be getting worse.

Good luck.

[Good intentions]

It’s barely been four days. You’ve had your peritoneum peeled off of the abdominal fascia and an irritant, the mesh, placed in between. Your body is working to cover that irritant with protective tissue. The mesh is placed directly on top of the various arteries and nerves at the area where the spermatic cord enters the inguinal canal. Those parts are now rubbing on the mesh until it gets dealt with by your body. It will take a little while and the type of pain will probably change as things progress.

Walking seems to help move the fluids around so that they can be removed, and reduce pain. It did for me, and I’ve seen others report the same. Ability to work without causing damage, and pain, are two different things. Didn’t your surgeon give you a pain medicine prescription and advice? The internet is nice but there should be direction from either the facility or the doctor. Sometimes it’s buried in the paperwork, you should go through your documents closely. Mine was “do not lift more than 10 lbs”, a prescription for hydrocodone, and advice to use ibuprofen or acetaminophen, singly or together.

The real risk would seem to be doing something that increases abdominal pressure to a level high enough to push the mesh through the hole, or to tear a stitch or tack free. But I don’t think that the actions to avoid, to avoid that, can be specifically given. One pound lifted with your arm at full extension might be worse than ten close to your body. I don’t think that anyone really believes the lifting instructions are worth anything, but they give a clue. Good luck.

[Good intentions]

“Can fatigue be caused by a hernia” might be a better form for your question.

I would add more details. Like what kind of exercise you’re doing (“light” means different things to different people), what caused the hernia, and how long you’ve had it. And how long it’s been since the initial surgery that created the incision. If you took a lot of rest after getting the hernia and are just starting exercise again, maybe you’re out of shape and it’s taking a while to get back. Not so sure also that exercise is good for a hernia. I’ve not heard that.

Good luck. The body likes its rest after injury, so if you’ve had the initial surgery to create the incision, then a hernia afterward, you might just need more rest than normal.

[Good intentions]

quote Chaunce1234:

I’m a fellow patient, not a doctor. But…

Somehow I had got the impression that Chaunce1234 was Dr. David Earle. Maybe somebody else got that impression because some of your previous posts were signed off as “DE”. I haven’t found any posts where you describe your problem or procedure. Could you clarify? Thanks. I’ve only seen three surgeons post on this forum, and only two, Dr.Towfigh and Dr. Procter, post often, even though seven are listed. I wish that more of them would post more often.

To SpringsMan – I’ve found that many surgeons don’t read images themselves. They are interpreted at the facility where the images were taken, by a specialist in imaging, and a report is written. Typically, the specialist will look for signs of whatever the cause given is for the purpose of the image. And mesh does not show clearly on most imaging methods, so imaging is often not very useful. “No recurrence” is a common conclusion from imaging, which is meaningful but often already known. In short, you might want to pick a doctor first, and see what they recommend.

Can you give more detail on your procedure? Open, lap, mesh brand, direct or indirect, etc? A general location might get some recommendations also, for a good doctor.

[Good intentions]

Sorry about that. I see bad mesh everywhere now. Most of what I said still applies though, I think. Here’s an edited version. I removed two “mesh”es. Interesting that he had a non-mesh repair six years ago, when even open with mesh was about equal with laparoscopic with mesh. Now it’s mostly laparoscopic with mesh.

“Pain after hernia surgery is not uncommon. Six years is a long time to deal with it though. Post your general location and somebody here can guide you to a doctor who understands and accepts that some hernia repairs have problems. You’ll need to see a doctor with experience in dealing with the problems, not the common surgeon who will only deal with implanting the mesh. You’ll waste a lot of time and money unless you just get lucky and find the right doctor.

And don’t assume that you need a neurectomy. Cutting functional nerves is a specific procedure for specific types of pain. It’s not a general pain reduction technique.

Actually, at this point you probably shouldn’t try to diagnose your own problem. Your assumptions might be wrong and lead you down the wrong path. Best to find a doctor that will deal with hernia repair problems, and will choose the best procedure for you.”

[Good intentions]

Pain after hernia surgery with mesh is not uncommon. Six years is a long time to deal with it though. Post your general location and somebody here can guide you to a doctor who understands and accepts that some hernia repairs have problems. You’ll need to see a doctor with experience in dealing with the problems, not the common surgeon who will only deal with implanting the mesh. You’ll waste a lot of time and money unless you just get lucky and find the right doctor.

And don’t assume that you need a neurectomy. Cutting functional nerves is a specific procedure for specific types of pain. It’s not a general pain reduction technique.

Actually, at this point you probably shouldn’t try to diagnose your own problem. Your assumptions might be wrong and lead you down the wrong path. Best to find a doctor that will deal with mesh problems, and will choose the best procedure for you.

[Good intentions]

No direct thoughts on your symptoms but I do have a suggestion for when you next see a doctor. Don’t focus on the past hernia repair as the primary reason for your visit. Try to give a broad view of the actions that preceded the current problem, and give a good description of the symptoms. It might be that you’ve actually caused a new problem, not related to the hernia repairs or mesh. Let the doctor decide how to handle it.

Unfortunately, in today’s database category based health care system, the words that you use to set up your appointment will be used to put a label on you. If you say that you have a hernia repair mesh problem, your symptoms will all be referenced against pre-defined hernia issues. Often it won’t be the doctor who does the defining it will be somebody at your insurance company trying to figure out if your visit and tests are “covered”. Any tests the doctor would like to have done will be referenced against a list of “hernia” procedures. And “hernia repair mesh problems” is not a category yet, although it seems like it might be soon.

I had major problems and as soon as I mentioned ED as a sporadic problem after physical activity I got shuttled off to see a urologist. And ED is not covered under my plan. So, even though the real problem was inflamed mesh and my point in talking about ED was that it was just a symptom of a bigger problem with the mesh, once my visit got the ED label it couldn’t be changed. I even talked to somebody at the clinic who agreed with me and said that she would get it corrected but it just went back through the system and I ended up paying a lot of extra money just to see a guy who said “wow, I’ve never heard of that before”.

My surgeon also had to sit through a panel discussion just to get approval for an MRI, later on. Because MRI’s were not covered for hernias. He would make a request and get rejected, then write another and get rejected again. “This procedure is not approved for ‘hernia'”. That simple.

Overall, it was a sad example of the bureaucratic nature of our healthcare system.

Good luck.

[Good intentions]

The MRI itself doesn’t cause any pain. It’s just radio waves passing through the body. Laying in the machine without moving is kind of tedious. I’ve had a typical lay down in the tube MRI. It takes some time to get a complete set of images, so patience and being prepared to do nothing for a while are what she should be prepared for. There are different types of MRI machines, of course, so it might be worthwhile to look in to that. Most hospitals or facilities have a guide that will explain what to be prepared for. You might check their web site.

[Good intentions]

Incisions usually come from previous surgery, don’t they? The details of where the incisions came from might help.

Chaunce1234 (Dr. Earle) made a comment recently about knowing of surgeons who do non-mesh repairs on professional athletes. When I was looking for surgeon I tried to find that type of doctor but couldn’t find any. That was three years ago. The laparoscopic mesh repair movement is even stronger now, but you might have better luck. Look at Dr. Earle’s recent posts.

If you’re okay with traveling and maybe spending more money that if you stay in your insurance plan you might contact the Vincera Institute. Dr. Meyers is known for working on athletes.

https://vincerainstitute.com

Good luck.

[Good intentions]

Hello Frogdog. I don’t know anything about mid-line hernias or thinning or component separation but I do know a little about how people use the internet. Most people just browse the titles and only click on the interesting things.

If you want urgent information you need to put that in the title. Even better, pack as much detail as you can in to the title. Something like “Need surgeon recommendation by XX time today for component separation, within XX miles of KC, MO”. Maybe details about which state also, since KC is on the border. You might actually have insurance in Kansas.

Good luck. I can almost guarantee that the doctors or other forum members who might see your current title will think that they have a few days to think about it.