Good intentions
Forum Replies Created
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Here are are some alternative views about The Guidelines, and guidelines in general. They are from a new publication that I just came across. Well worth reading all of the articles. I am a little bit shocked at the bluntness, but Dr. Bendavid is, apparently, one of the founders of the Americas Hernia Society, so his opinion would seem worth considering. Incredible how far apart the perspectives have become.
I was unaware of this document when I created this topic and in my comments up to now. But somehow I have ended up with a similar opinion to Dr. Bendavid’s (although not as extreme), getting there from a different direction.
https://thehernialetter.org/category/issue-one/
https://thehernialetter.org/issue-two/the-problem-of-guidelines-in-modern-medicine/
“The HerniaSurge-International Guidelines for Adult Hernias: A Willful and Deceitful Document.
The virtues, which transcend any document, particularly International Guidelines, must include ethics, integrity and transparency. There cannot be a whiff of favouritism, collusion, cronyism, lobbyism, conspiracy or complicity. With such demanding criteria, the HerniaSurge International Guidelines sponsored and supported financially by Ethicon, Bard and the European Hernia Society (EHS) have failed dismally! The AHS on the other hand, never really had a significant role other than to acquiesce. The same objections applied to those “sister societies” which are not hernia societies at all but endoscopic societies and whose influence in recommendations in hernia surgery can only be spurious at best and contentious.”
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Thank you for following up Ben999. Good to hear that you had a successful outcome. I also feel like I’m almost back to normal myself, although things are still changing, in a positive way. But the mesh and mesh removal site on my body is not my primary focus on waking every morning, anymore. It’s secondary, one year and four months after removal. I wake up thinking about what I can accomplish for the day instead of how much attention my problem will take.
Here is a link to the clinic who did the work for you. It looks like Dr. Muschaweck, well known for her work in this area, has passed the responsibility for her clinic on to Dr. Conze. It’s good to see that the clinic is still doing well.
https://www.hernia-centre.com/
Good luck.
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[USER=”2847″]Spanish[/USER] I hope you’re doing well. Here is a link to a facility in Germany, started by Dr. Muschaweck. I saw your posts on the other web site and I think that this is the one they were talking about. It’s close, maybe you can get over there and get evaluated.
https://www.hernia-centre.com/
It was mentioned in this Topic, below. I’m not suggesting that you need mesh removal, but they would have a broader view than many clinics. More experience.
https://www.herniatalk.com/11058-my-successful-mesh-removal-story
Good luck.
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I think that it’s important to be objective about your new predicament. If your life is diminished don’t feel guilty about making every effort to find a cure for the new problem. Look back at your life after one year, or six months, and compare it to what it should be, what was promised. Then decide what actions to take, considering all of the potential life in front of you. Which is basically the same reasoning used to decide to get a hernia repaired. In the meantime try to get back to a normal life.
Keep track of what makes things better and what makes it worse. You might find that avoiding certain things makes a big difference and that you can live without those activities, and that what’s left is good enough.
Also, consider your insurance plans. They change on a yearly basis. Make sure that you have choices in the future.
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Is this the facility? https://herniacenter.surgery.ucsf.edu/
I think that the sore throat is caused by the breathing tube they stick down it, for general anesthesia.
Thanks for posting, it’s good to get first hand accounts of other places and the types of surgery that they do. Your ventral hernia is probably an incisional hernia, from the incisions that they made for the tubes.
Good luck.
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It was probably right to get it repaired then. Some people do fine with synthetic mesh, apparently. It’s hard to say if early is better than later. You’ll probably know within a few months if you’re going to have problems.
Don’t fret, just see if you can make it work. It’s in an area that is not as complex as the groin so if you do have problems it probably won’t be as tedious to remove it as inguinal mesh is. I think that surgery is generally always dangerous. Best to avoid it.
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quote localCivilian:Is it possible to have the mesh removed, even if there are no complications? Would it be easier to remove since it’s still early after surgery?
Also, if anyone has any insight on this, what even happens to mesh later down the road? Does it eventually degrade?
You should find out what type of mesh was used and how much. There are many different types. Some are meant to be absorbed, others are not. The synthetic meshes generally do not degrade. Knowing the details might make you more comfortable, at least you can be more aware of any potential complications. An umbilical repair probably does not see the stresses and strains and folding that an inguinal repair does so that would be in your favor as far as avoiding future problems.
You can probably find a surgeon who will remove it but your insurance company will probably not pay for the procedure.
Why did you decide to have it repaired? If it was small and did not cause problems or pain then “watchful waiting” is what many surgeons would do for their own hernia. Regardless, it’s done now so probably best to leave it as-is unless you have physical problems.
Good luck.
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I think that anything behind the defect that is soft and squishy can get pushed through the defect by just hydraulic pressure. Whatever happens to be by the hole when the abdominal pressure increases. Intestine and omentum are what usually get pushed through. Omentum is a thick fold of peritoneum. It’s actually a thing unto itself. It seems that it’s not well understood either. Some sources call it “fat”. I think that what surgeons sometimes tell you is “fat” is probably omentum. It might actually play a big part in the mesh reactions, if what I’ve read is on target. Maybe some device researchers will make that connection and be able to use it.
Might not answer your question, but I thought I’d give it a shot. I’m pretty sure that my damaged omentum is part of the belt of stiff “fat” that has been left behind at my belt line after my mesh removal. Hopefully it will soften up over time.
http://blogs.discovermagazine.com/d-brief/2017/06/01/the-omentum-tissue/#.XMKA_BbQiiQ
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You are still very early in your healing process. Even after release to full activity, there will be “restructuring” of tissues, with shrinkage and pulling.
I had found though, after my bilateral mesh implantation, that after vigorous activities, I would get what I described as a “penile” dysfunction. It wasn’t just erectile, it was overall “behavior”, like it was dying. This would typically take 2-3 days to manifest, then sensation and response would return after 3-4 days. You might try taking an extended rest from physical activity, like running or biking, to see if things get back to normal. At least you’ll have a better idea of it’s actual damage from the surgery or a side-effect of more subtle damage from activities.
I kept a log of my activities, and still do, and I even had a name for it, the “two-day effect”. Keeping a log will allow you to see any correlations, that you might not catch using just your memory.
Good luck.
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I think that any studies that tried to determine that would be confounded by the unknown cause for the first hernia. In other words you couldn’t tell if the hernia repair caused the second one, or just the fact of the weak tissue that allowed the first one.
Could you give some details of the first surgery? Open, lap, mesh, no-mesh? It might be reasonable to assume that a mesh repair and its shrinkage would pull on the opposing side. Changing the stress distribution.
Probably doesn’t really matter though. If you have a second one you’re kind of back to where you started. At least you have found a surgeon that you like and trust. Good luck.
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When I was trying to figure out what to do for my hernia, in late 2014, I thought that there was no way that the stories from the past that I had found could still apply, at the time I was looking. Somebody must have done something I thought, they are doctors, they would rebel against the device makers if patients were being harmed like the stories told. But it turned out that nothing had changed at all. I got the “best” procedure from one of the “best” guys using the “most appropriate” material for me, and I still became one of the horror stories.
It’s almost incomprehensible that it continues, but it does and is happening today. Lots of talk out there, and some people seem to be realizing that the problem is real and significant and probably worse than they knew in the past. But no changes. Many many different materials and procedures (an incredible variety really, considering that inguinal hernias are all very similar), and no way to tell which is best or worst. The only advice, after all of these years, seems to be that “plugs are not recommended”. That’s it. Things seem almost exactly the same as 2014, and before.
It’s important that people realize that. Get real numbers from the surgeon about how happy their patients are with the repair that they received, and how many are not. Every surgeon should know how many patients were unhappy because the patients almost always go back at least once. They know, they have records.
If your surgeon refuses to answer the question or gives vague answers about “haven’t heard anything bad” that’s a warning sign. They are all aware of the problem now, with all of the lawsuits on television every day. They should know how their method is working and be happy to talk about it, if it’s a good one. Quotes from the Guidelines or research papers or marketing literature don’t count, they should have personal knowledge of their own work.
It might be that any combination of mesh materials and method is equally likely to give a bad result. Nobody can say at this time, so you have to assume that they’re all bad.
Sorry to be so long-winded. But a bad mesh implantation will ruin your life. Put the time, effort, and money in first, don’t just pull the trigger and hope.
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Nothing significant has happened for the last 5 – 10 years. No improvements, no changes, nothing better as far as the long-term results for the patient are concerned. Any posts you read on the forum about problems in the past could still happen today. It’s all the same. The same mesh materials, the same methods (with minor advancements like robotics. But the same materials are placed in the same spots), the same surgeons, and the same training methods for new surgeons. No solutions have been offered or applied. There is no reason to expect different odds or probability of good results today than there was in the recent past.
Read through the posts on the site and all of your questions have been addressed.
Bodybuilders seem to have better results than runners, like soccer and football players, at least from stories on the internet. Maybe because bodybuilding is essentially a static activity, with less movement of the mesh.
Nobody can give you advice that’s based on any collected set of actual data from actual patients as far as the chronic pain issue is concerned. “Pain” is defined differently by many researchers. Some use “debilitating” pain as the significant level, which means that constant discomfort and distraction is okay. Even debilitating pain is acknowledged by mesh proponents (like Dr. Voeller) as a 4 – 6% probability. Debilitating means pain that makes you weaker. So, a 4 – 6% chance of having a debilitating reaction to a mesh implantation. Of course, chronic discomfort levels would be higher than that. There is much discussion about collecting long-term data but no professional body or government agency has stepped up to actually do it.
So, in the end, it’s still a big gamble. One consideration, if you can afford it, is that if a suture repair fails, you can always get a mesh repair afterward. But if a mesh repair causes chronic pan or discomfort the solution is much more complicated and might be impossible. The effects of mesh are essentially permanent, even if you find a surgeon to help you.
That’s how things seem as of today, to me at least. Good luck.
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J&J settles in Washington state pelvic mesh lawsuit, on eve of trial start.
It will be interesting to see how disclosure changes for hernia repair mesh in Washington state after this recent settlement with J&J. Washington state sued them over what is, basically, false advertising. Not disclosing the risks. J&J did not admit fault, but still paid. The state said that they could not ban the devices because the FDA approved them. At least somebody is defining the various types of wrongness. The buck has to stop somewhere, it can’t travel in an endless circle of buck-passing.
https://www.knkx.org/post/johnson-johnson-settles-lawsuit-washington-state-over-pelvic-mesh-implants
“The health care giant Johnson & Johnson will pay nearly $10 million to Washington state to settle a lawsuit over the marketing of pelvic mesh implants.”
“Washington state’s lawsuit against Johnson & Johnson, filed in May 2016, was over misrepresentation of risks associated with the implants. Washington Attorney General Bob Ferguson said the company violated the state’s Consumer Protection Act by not adequately warning patients and doctors of the risks.
In announcing the settlement, Ferguson said going forward the company will be required to spell out those risks. “Our resolution is sending a clear message, that you cannot sell medical devices in Washington state and fail to adequately disclose the risks associated with those products,” Ferguson said.”
“As for banning the devices outright, Ferguson said that is beyond the reach of Washington’s Consumer Protection Act because pelvic mesh implants have been approved for use by the Food and Drug Administration.”
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I don’t know. Many surgeons will just recommend more pain medication. It’s unclear, so better to be safe, I think, than find out you’ve been causing more damage. Some devices, like the plug, have a known history of moving and “eroding” local tissue. I don’t want to scare you but that’s why knowing what you have might be important. Maybe you could ask one of your Holland doctors to contact your Spain doctor. Doctor to doctor. Or, if you post the name of the clinic or the surgeon there might be information available abut their preferred method. Some surgeons use only one method. “One size fits all”.
https://twitter.com/Herniadoc/status/1021561699290116097
At this point you are kind of on your own. Your surgeon has already decided that you don’t have a recurrence.
I would use the weekends to try different things to see if they have an effect. Keep track of your activities to see if there is a correlation with your problems.
I think that the stories we’re all told at our hernia diagnosis, and that we see on the web sites of clinics around the world about being stronger than ever and able to be back to full strength, pain-free, within weeks, are the “ideals”, what is hoped for. Not the reality. It’s just the way things are these days.
Good luck. You’re still early in the “settling-in” process.
What do you see?
This is a medium size Perfix #plug #mesh that has balled up, aka #meshoma . It was causing chronic groin & nerve #pain due to erosion into the spermatic cord, so I excised it. He is now #pain free!🙏🏻#meshcomplication #hernia #chronicpain #itsnotjustahernia pic.twitter.com/EgnLh0ULXR
— Dr. Shirin Towfigh (@Herniadoc) July 24, 2018
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Here is another article promoting the Guidelines. The HerniaSurge group seems to be taking control of the narrative, pushing the results of their big review effort out to the world at large, via a variety of professional publications. They also seem to be speaking for “everyone”. Kind of fascinating.
https://www.karger.com/Article/FullText/487278#ref11
” By developing evidence-based guidelines and recommendations, the international hernia societies aim to improve the outcome of inguinal hernia repair due to standardization of care. ”
I notice in this article that the authors have distilled recommended repair procedures down to just three techniques, using mesh. But make zero mention of any differences in the materials used. All mesh polymers, materials (naturally derived or synthetic), and knit or weave patterns are still just considered as “mesh”. Despite the efforts of the device makers to distinguish their materials from their competitors.
It also makes one wonder about where the 100-plus other techniques came from. Even if all surgeons accept and follow these Guidelines, how will things be different? Will they lock in the bad or the good?
“From a total of more than 100 different repair techniques for inguinal and femoral hernias, classified as tissue repair, open mesh repair, and laparo-endoscopic mesh repair, the new International Guidelines of the Hernia-Surge Group only recommend the totally extraperitoneal patch plasty (TEP), transabdominal preperitoneal patch plasty (TAPP), and Lichtenstein techniques.”
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The materials and methods I showed above are different and probably give different results.
Good luck. [USER=”2847″]Spanish[/USER]
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Lichtenstein
plug – patch
preperitoneal patch – e.g. Kugel
Prolene Hernia System (PHS)
Onstep -
Hello RPG. This might be a double post, I got blocked on my other one.
You should get more details about your surgery. There are many different types of “open repair with mesh”.
Try stopping the bike rides and see if things get better. I found that repetitive motions like running and biking caused irritation. It will be a clue, even if it doesn’t solve your problem.
These are all “open with mesh” procedures, in the next post. I’m trying not to get my post blocked. Good luck.
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Hello RPG. “open repair with mesh” could mean many things. You should find out what method and materials were used. If you can get your surgery notes, it would also be good to know if the surgeon actually found any hernias, and of what type. Sometimes they get in there and don’t find anything.
These are all “open with mesh” procedures:
Lichtenstein
plug with patch
preperitoneal patch – e.g. Kugel
Prolene Hernia System (PHS)
OnstepI found that the repetitive nature of motions like running and bike seemed to cause irritation, for my Bard Soft Mesh laparoscopic TEP placement. You might find that stopping your bike rides will make things feel better. It might offer a clue but, of course, is not what you want for the long-term.
Good luck.
[USER=”2847″]Spanish[/USER]
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quote pinto:Do you disagree with that point?
And are you arguing that all the uses made of polypropylene human implantation are beyond reproach?
Yes, I do, I addressed it in my other post, above. Oversimplifying things down to a sound bite for a TV camera is not what someone knowledgeable and respected in science would do. He has moved on to his second career. Just because he published a lot of papers in one area doesn’t mean he’s an expert in another.
No, I am not. Don’t believe everything you read, or see, or hear, and don’t rely on single sources. Get many different views and see what the true picture is.