[Good intentions]

Thanks for posting that William I probably would have missed it. Besides the terrible behavior of the surgeon, the fact that everyone around him was afraid to report it is the most concerning. The parallel with hernia repair is remarkable. I am certain that PA’s and nurses and anesthesiologists and imaging specialists are all aware of the hernia repair mesh problem. They are all actually present as the initial reports are made and along for the ride as the delay and deflecting occurs, sometimes leading to treatment including pain treatment and mesh removal. But they have bills to pay and lives to lead so they stay quiet.

I remember days after the mesh implantation I got a call from a nurse at the ambulatory surgery center asking me “how’s the mesh?” in an aggressive irritated tone. I was so shocked that I could barely comprehend what she meant and had to ask her to repeat the question, and ask if there was something wrong with it. She said “how is it, how is the mesh doing”” and I replied that it had only been a few days, “how would I know?” I then called my surgeon to ask what was going on and he was kind of flustered and said it was nothing and he would deal with it. It’s always been in the back of my mind that something wasn’t quite right about the surgery, but the surgery notes said that everything went according to plan. A perfect implantation.

Also shocking that the brain surgery story happened in Scotland where they banned transvaginal mesh, or tried to, because of the numerous problems. So on one side you have proactive actions and on the other you have inaction. All in the same system.

https://www.parliament.scot/~/media/committ/552

They fell back on the “removal will return the patient to normal” fallacy.

https://www.scotsman.com/health/scottish-government-will-not-back-suspension-of-all-surgical-mesh-use-due-to-lack-of-certain-treatment-alternatives-says-maree-todd-3724411

“…
Ms Todd said the Scottish Government has made “significant progress” on transvaginal mesh as she said “everything is being done” in negotiating contracts to assist those with mesh implant removals. The Minister said she hopes to update parliament on the negotiations soon.

Ms Todd said: “We’ve established a national service for the management of mesh complications and women have options with regard to their treatment which can be undertaken in Scotland, elsewhere in the UK and also with an independent provider if desired.”
…”

[Good intentions]

Here is the Topic I created about healing from mesh removal. It’s been a long slow process for me. Over five years and I’m finally feeling like I’m at a stable 90% of where I was before mesh implantation. You’ll find posts from a year or two ago where I said something similar but this time feels more solid. Of course, the worry now is that if things have been changing could I have a recurrence? I’m not going to worry too much about it, I’m just going to enjoy these moments of good health while I can.

Good luck herniacomps. I kind of hate to wish for it, because things shouldn’t be this way, but I hope that you get a huge settlement. And I hope that all of the other people after you get huge settlements. So that, finally, the financial aspects of selling bad products drives them from the market.

https://herniatalk.com/forums/topic/healing-from-mesh-removal-surgery/

Healing from mesh removal surgery

[Good intentions]

Thanks for the reply Dr. Towfigh. I’m just trying to keep track of, and understand, what is going on in the field of hernia repair. Progress seems to have stalled dramatically.

If the goal is to learn about ASIA/Mesh Implant Illness then a description in the introduction of the survey would be appropriate. I see though that you have now added “Pain” as a category. So, kind of getting a mixed message.

Anyway, good luck with the project.

“9. What were your symptoms?

Bloating

Brain fog

Change in taste

Chronic fatigue

Concentration problems

Dental problems

Feeling hot

Hair loss

Headaches

Hearing changes (e.g., ringing in the ear)

Itchiness

Joint pain

Joint swelling

Memory loss

Nausea

Pain

Rashes

Sleeping problems

Sweating abnormally

Tingling in fingertips or toes

Visual changes (e.g., blurry vision)

Weakness

Other (please specify)”

[Good intentions]

Hello Dr. Towfigh. I started your survey and it kind of reminded me of a sociology class I took years ago where we had to develop our own survey as a project.

I notice what could be a flaw that confounds or negates some results. If a person answers “No” to question #5 – “Did you have a reaction to the implant?” then they should not be able to answer any more questions. Because they did not have a “reaction” to describe. On the SurveryMonkey site the patient is allowed to continue to answer questions even after selecting No.

Also, as I noted in a topic I created, why is there no category of pain or discomfort as a “reaction” symptom. It makes the whole survey seem odd, like one where a company could say “no patients reported chronic pain or discomfort”. Because there was no way to report it. Chronic pain has been identified as the number one problem confronting hernia surgeons and patients. How can it be excluded from a survey about implant experiences?

Could you give more detail about the purpose of the survey?

[Good intentions]

I mis-wrote above. Dr. Towfigh said “best seller”, not most popular.

Sorry SN, I know that you’re trying to find a clear path forward. Keep working at it, something will make sense to you eventually. Her comment seems strong enough to at least knock one option off your list. Some small help.

https://herniatalk.com/forums/topic/big-picture-litigation-perfix-plug/#post-33897

“…
Yup, agree that plug meshes should be off the market and the main reason they aren’t being pulled is because it would look like they are admitting it is a poor design. Also, plug mesh still seems to be among the best sellers, if you can believe it.
…”

Big picture – Litigation – Perfix plug

[Good intentions]

Dr. Towfigh said that the plug is the most used repair method in the world. Apparently it is very easy and fast to do.

Here is a paper from 2014 by one of the participants in the HerniaSurge mission, the Guidelines. He reports some details about three open methods; Lichtenstein, plug-and-patch, and the Prolene Hernia System (PHS). Four years later the plug was the only mesh product that the Group did not give a firm recommendation to. Ten chapters are under revision in the Guidelines. There might be something useful in the new version of the Guidelines, if you can wait.

Sorry, this probably does not help your decision-making. But it is the reality of the situation. 2014 is when I had the laparoscopic TEP procedure to repair my unilateral hernia. It’s easy to see why the surgeon chose it, it is highly recommended. But the results for me were terrible.

https://www.frontiersin.org/articles/10.3389/fsurg.2014.00020/full

MINI REVIEW article
Front. Surg., 20 June 2014
Sec. Visceral Surgery
Volume 1 – 2014 | https://doi.org/10.3389/fsurg.2014.00020
Tailored approach in inguinal hernia repair – decision tree based on the guidelines
imageFerdinand Köckerling* and imageChristine Schug-Pass
Department of Surgery, Centre for Minimally Invasive Surgery, Vivantes Hospital Berlin, Academic Teaching Hospital of Charité Medical School, Berlin, Germany

“The endoscopic procedures TEP and TAPP and the open techniques Lichtenstein, Plug and Patch, and PHS currently represent the gold standard in inguinal hernia repair recommended in the guidelines of the European Hernia Society, the International Endohernia Society, and the European Association of Endoscopic Surgery. Eighty-two percent of experienced hernia surgeons use the “tailored approach,” the differentiated use of the several inguinal hernia repair techniques depending on the findings of the patient, trying to minimize the risks.
…”

[Good intentions]

To be clear, I posted this mainly as a discussion point about the fact that pure tissue techniques are still a major area of study. The work itself in this paper is obviously of little value except that it reintroduces an old technique to the community of hernia repair surgeons, and shows that some surgeons have not accepted the view that mesh is the best starting point for hernia repair.

[Good intentions]

Six weeks is not very long. One month ago would be two weeks after the surgery, correct? That is right at the edge of the usual time for being released for activity after surgery.

Do you know what the “sports hernia repair” method was? Mesh is not typically recommended for athletic pubalgia (aka sports hernia). Was it a sports hernia repair or did the surgeon just call the problem a sport-based hernia? Good luck.

There are many possible causes, but no simple solutions. Since it’s so early your best bet might be to avoid running for a while until the pain resolves then try to slowly work your way back in to it.

[Good intentions]

Rejuvenating this Topic from the past. There is a link to a bodybuilding forum that has a long thread about hernia repair in it, in one of the posts above. Some of the bodybuilders report good results. Overall, sometimes I think that activities that are high in repetitive exertions, like running or playing sports, cause more problems than extreme exertions at low repetition, like weight training. I was way out on the high repetition and extreme effort end of the activity scale.

I haven’t read back through this thread but there might something of value in it.

[Good intentions]

Two fairly young men (in their 30’s) just posted on the forum looking for advice on hernia repair. They both sound like active people, one mentioned deadlifts, a weightlifting term. So, a node on their decision tree might be “will I be able to exercise like I used to?”. That might then lead to defining the degree of exercise. High intensity track work versus weightlifting only, for example. If it’s high intensity track work or running, they might look to Muschaweck’s work on soccer players or Dai Greene’s story to help decide on a method or a surgeon.

Of course, the stories linked below are stories of problems. I created a Topic quite a while ago looking for good mesh stories. If somebody has found a story of a professional athlete who got a mesh repair, or any repair for an inguinal hernia and regained their health and abilities, please post it. There might be materials and methods that actually work. In an ideal world, the good would rise up and the bad would be allowed to fade away.

https://herniatalk.com/forums/topic/pro-soccer-player-ruined-by-hernia-mesh/

https://youtu.be/akkp0fApJDI

Pro soccer player ruined by hernia mesh

[Good intentions]

Generally, for hernia repair, seeing a hernia specialist is recommended. Hernia repair is not simple surgery, although many doctors make it sound easy. You don’t want to get the wrong surgeon for hernia repair. The results are permanent.

There is a Topic on the forum about hernia repair in Germany. It might be worth reading.

https://herniatalk.com/forums/topic/can-we-mention-the-germans/

Can we mention the Germans?

[Good intentions]

If you just want to get the surgery method of the day by the most capable surgeon in that technique, then Jacob, Dalkin, or Novitsky are good candidates. Sbayi has expertise in the Shouldice method. Podolsky publishes about robotics so he might be doing a TAPP mesh repair. Actually Jacob, Novitsky and Dalkin might be also.

You said that once you choose you’ll be locked in. So, you kind of have to decide what matters most to you, the repair method itself or the surgeon’s knowledge of a certain type of repair method.

At your age you certainly have a lot of life ahead of you. Whatever you choose, the results will be with you for the rest of it. Doctors can think about the 85 patients that they helped (as far as they know) and ignore the 15 that they hurt (those are mesh repair numbers). It’s just the reality of their lives. Try not to be one of the 15.

You’re doing the right thing by researching options first. Things just aren’t very clear at this time. Even the “International Guidelines” of hernia repair are being revised, and they seem to be having difficulty deciding what should be in the updated document.

There really is a lot on the forum. Not much has changed in the last 15 years, except for the advent of robotic surgery. It’s the latest new thing. The materials and methods are all about the same. So the odds are too.

[Good intentions]

To be clear, in my post above I was combining recurrence and pain, as “problems”. Both are bad, and even the experts aren’t sure how to avoid either. The factors involved in controlling the problems are still unclear.

[Good intentions]

Spend some time reading posts on the forum. This is not a typical “what’s best?” forum. Is your hernia direct or indirect? The description sounds indirect. Why do you want surgery? Is there pain, or does it hinder your activities? Hernia surgery is very risky, both in the probability of problems (10 – 20% chance [guesstimate] of recurrence or some sort of pain) and the difficulty of fixing those problems if they occur. Surgery involves permanent changes.

Spend some time educating yourself. Don’t be in a hurry to get “fixed”.

A typical surgeon will tell you that the “vast majority” of patients don’t have problems. That doesn’t tell you the whole story. There are many references to professional publications on the site. Read a few and learn the real numbers. Good luck.

[Good intentions]

It is a topic of study in Japan. Here are some links. I assume that “rescue analgesics” might be a term for “pain-killer”.

https://scholar.google.com/scholar?hl=en&as_sdt=0%2C48&q=japan+inguinal+hernia+mesh&btnG=

https://link.springer.com/article/10.1007/s00595-012-0153-5

https://journals.sagepub.com/doi/abs/10.1177/17504589211054371

[Good intentions]

Somebody just asked about “Chinese substandard polypropylene” in a different Topic. It reminded me of the Progrip polyester (PET) – based mesh. PET and PP are the two main polymers used in meshes. They both seem ot have similar problems.

The MAUDE database is a good place to look for information about complaints about specific products. It is not easy to use though. I created a Topic about it. Some of the files contain detailed descriptions, others are very short.

https://herniatalk.com/forums/topic/maude-manufacturer-and-user-facility-device-experience/

Here is an excerpt from the article I linked in the first post of this thread.

“…
Laparoscopic Progrip
Although not intended to be used for laparoscopic surgery some surgeons started using the flat Pg-PET mesh during laparoscopic groin hernia repairs. Probably, Dr. Dieter Birk was one of the first surgeons starting to use Pg-PET mesh in laparoscopy in 2008. Favourable results during a follow-up period of 23 months were published in 2013 [5]. Muysoms et al. also started using Pg-PET mesh in laparoscopic groin hernia repairs in November 2009 [6]. Sofradim Production later produced a mesh dedicated for laparoscopic groin hernia repair, Progrip™ Laparoscopic Self-Fixating Mesh.
…”

MAUDE – Manufacturer and User Facility Device Experience

[Good intentions]

Avoiding “Chinese substandard polypropylene” will not remove the risk that the use of mesh carries.

I am not “against mesh”. I am against its overuse and the apparent acceptance of its major flaws by the medical community, plus the obscuring of these flaws when the mesh product is promoted to the patient as a cure. Any surgeon today that implants mesh without clearly explaining the potential problems with its use is participating in a fraud. The literature, from the scientific journals all the way down to the simple trade journals, has produced a constant stream of studies showing that there is a substantial probability of chronic pain if mesh is implanted in the body for hernia repair. The pain is not easily resolved if it occurs.

Nobody should be fooled by the premise that the bulk of mesh problems are caused by counterfeit products or “substandard polypropylene”. Polyester meshes have similar problems. The knitted fabric pattern and the nature of the textile itself seem to be the cause. Not the chemistry of the polymer used to make the fibers.

[Good intentions]

I miswrote in my post above, I was a month early. Now, today, it has been 6 months past the promised update time. The year is half gone.

The EHS has changed their main web page and I found that they do refer to updates as being in progress but do not give an expected date of publication. Considering all it would be surprising if they made any firm statements suggesting that mesh of any type is not the first recommendation for repair of any hernia type. Maybe they will release something before 2024 gets here.

Ten chapters is kind of specific. What could the holdup be?

https://europeanherniasociety.eu/international-guidelines-for-groin-hernia-management-2/

“…
The guidelines were developed by The HerniaSurge Group and have been endorsed by all five continental hernia societies, the International Endo Hernia Society and the European Association for Endoscopic Surgery. The guidelines were published in 2018 in the Journal Hernia. Ten chapters are in the process of being updated.

Reference: HerniaSurge Group. International guidelines for groin hernia management. Hernia. 2018 Feb;22(1):1-165. doi: 10.1007/s10029-017-1668-x. Epub 2018 Jan 12. PMID: 29330835; PMCID: PMC5809582.
…”

[Good intentions]

So you’re just over one year in to your ordeal. Is there any way to find out what the mesh was, the brand and trade name, that was implanted? Mesh is known to move over time but to have it move “all over the place”, far enough to apparently impinge on some nerves, within four or five months seems very unusual. There is a huge variety of meshes out there.

If you don’t have the energy I get it. I just wonder about all of these new meshes that keep appearing with essentially no data to support their use in humans. The 510(k) process of the FDA allows it but the FDA’s purpose is to assess toxicity of materials, not suitability of devices. The whole medical device industry is kind of corrupted, as far as new device approval is concerned. Almost anything goes.

Did you get your medical records from Surgeon #1? There might be something notable in them that explains the failure of his procedure.

[Good intentions]

Well, that is a bummer.

Could you possibly summarize your whole experience here in this thread, from implantation to today? I went back and looked but can’t find what type of mesh you had implanted or how long ago it was. Plus the umbilical hernia/pain. How long did you live with the mesh before deciding to have it removed? I had mesh in me for three years. I wonder if there is an optimum time to wait before mesh removal.

On your removal, from past posts, it seems like the left was removed first by Dr. Billing but a small piece of mesh ws left behind, similar to my case on the right. Too tangled up with critical structures. Things seemed to be healing well, but your umbilical pain started increasing. You went to Dr. Parra to have the right side removed, and he also went to the left side and removed the small piece left over. Then, within four months you had both sides recur and still have umbilical pain.

Thanks for contributing your story to the forum. I think it helps people to see what is involved once you start to have mesh problems. They are very hard to solve. I am certain that there are people out there suffering who just don’t trust the system to fix their problems, so they just live with it.