Good intentions
Forum Replies Created
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[USER=”2784″]Casey F[/USER]
[USER=”935″]drtowfigh[/USER] [USER=”935″]drtowfigh[/USER]
Dr. Towfigh is also active in the robotic surgery arena. She might have some insights.
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“Da Vinci” is not really a type of repair. It is a robotic tool used to assist in the repair. It can be used to implant mesh or remove mesh, maybe even to do a laparoscopic pure tissue repair. But it does not tell you anything about the type of repair the surgeon is planning.
Dr. Vargo seems familiar with mesh problems, as he has coauthored a paper that describes them. He publishes a lot, which can be good or bad. Some researchers work hard to try to make things work. Others work hard to understand what’s best.
There is not much detail on the site’s web page about their repair methods. You should ask him what he plans to do with his robotic tools. Today is Tuesday so you might already be done. Good luck.
https://healthcare.utah.edu/fad/mddetail.php?physicianID=u0235667
https://www.giejournal.org/article/S0016-5107(07)02043-3/abstract
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quote Damien10:Anyone in here familiar with the cavernous nerve? Is it possible for the cavernous nerve to interact with or even be damaged by the hernia mesh? Can excess intra abdominal pressure stretch the hernia mesh and this particular nerve?
The problem that I had, mentioned above, was very concentrated at the corpus cavernosum. The corpus spongiform was still functional. It was very strange.
I also ended up seeing a urologist, part of the same clinic that performed the mesh implantation. He even knew the surgeon who did the hernia repair. It was a complete waste of time and money. His only comment was about how sometimes they have to cut through mesh to remove prostates. He had no ideas at all about what might be the cause of the problem. To make it worse, once the surgeon who referred me labeled my problem as “ED” instead of mesh-induced pain and dysfunction, my insurance company refused to reimburse. “ED is not a hernia repair related issue, claim denied”. I called the insurance representative and she understood the situation and said she’d clear it up but once I got the label it could not be removed. The connection to mesh got broken, in the system, and I ended up paying full fee to listen to a guy tell me he didn’t have a clue. The surgeon who did the work was off the hook also.
Once the mesh was removed full function returned. The correlation is very clear.
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quote DrEarle:The problem with anonymous surveys is there is no connection to what the patient had done.
If the surgeon or clinic that performed the repair sends the survey the connection is clear. The personal information can be stripped when compiling the results.
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There’s no reason that an individual surgeon can’t survey their own patients. I received a short questionnaire recently from the surgeon’s clinic that implanted the mesh in me. It was poorly formed and seemed to be mostly for the purpose of allowing the clinic to say that they track outcomes. But they did send it to me and I did fill it out and return it.
Taking the approach that things are too big and complicated to deal with feeds right in to what the device makers want. Passive agents for their products, “experts” that will use their products in unsuspecting patients under the guise of “informed” consent, and defend their usage. Even against clear evidence quantifying the chronic pain that is caused in 10 – 20% of patients who’ve received mesh implants. It seems unconscionable to continue to promote and use these products, knowing that there are people being seriously harmed by them, without, at least, trying to understand what causes the problems. It’s indefensible.
That is my basic reason for responding. Please don’t defend, or promote, these products with blanket statements unless you can explain why they are better than the pure tissue repairs, in all aspects, not just recurrence rates or the speed to get back to work. The surgeons blindly defending them are obstructing progress. Keep using them if you have to but please don’t get in the way of improving this terrible situation. Let progress happen.
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I had forgotten about this list. I’ve considered starting a new topic on my own recovery from mesh removal. Finally, a year later, it seems like the ordeal might actually be ending. More good days than bad. Less time managing the damage zone and more time doing normal life things. I’m actually planning for the future and acting on those plans now, unlike even just a few months ago when I would get distracted by new issues at the damage zone and go back to living day by day. Three years of mesh, one year of recovery from its removal. Four years since making the “smart” decision to avoid future problems with incarceration, and taking the advice of the surgeon who promised that I would be back in action, stronger than ever, after just a few weeks.
I still stay in touch with Dr. Peter Billing, who did the mesh removal. He has left the practice he cofounded, Eviva, and is starting a new practice. Apparently he wants more freedom to choose the type of surgery that he does. Eviva was primarily focused on weight loss surgery, and hernia repair and mesh removal were “side lines”, my impression from my experience overall with Eviva. He will be working in Seattle and Kirkland Washington. I’ll post his new contact information when it is available, which should be soon.
From what I’ve gathered over these years of collecting information, there are actually successful ways to use mesh for hernia repair, with no way to confirm which is which though. The surgeon has much freedom to try whatever they would like to try, as long as the patient survives the surgery. And the surgeon decides how involved they would like to be in the patient’s recovery. So it’s up to the individual surgeon to take responsibility for what they do. Not rely on the device makers’ advice.
Even though I can’t imagine having more mesh implanted in my own abdomen, because of the reaction I had to my TEP procedure with Bard Soft Mesh, it might be that Dr. Billing’s repair method is one of the good ones. I have not asked but I think that he stays in touch with his hernia repair patients also, so knows what works. He uses TAPP and a J&J mesh (now Ethicon) for his hernia repairs, as I understand things. I’ll try to get more details in the future.
This is a good list that we should keep updated. I am open to responding to any messages through the site.
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[USER=”2313″]Lucky46[/USER] Forgot to @ you.
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Dr. Towfigh has experience with that plug and patch, see her Twitter post below. Maybe she has thoughts about a surgeon who will see you and at least discuss options with you. You might want to give your general location again, maybe your insurance network also.
[USER=”935″]drtowfigh[/USER]
https://twitter.com/Herniadoc/status/1021561699290116097
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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That is good advice Lucky46. Have you tried the facility where the surgery was performed? Typically, there are at least two sets of records, one for the facility and one for the surgeon. Even the anesthesiologist might have a copy. Each will have different reasons for keeping them. Call them directly.
I would recommend writing down what you remember also, as your own personal record. I found some discrepancies in my records that make me wonder if portions weren’t “cut-and-pasted” from previous surgeries on other people.
Good to see that you’re still around. You might try to find a surgeon who will help on your own, not through your PCP. Many plans allow self-referral. I’m sure that some clinic or doctors can ask to be referred also. Pull the referral instead of having your PCP push it. Or consider choosing a new PCP, one who can get more done, if you think that your current PCP is stone-walling you.
Somebody like Dr. Petersen in Las Vegas might be worth talking to it you haven’t already. They might have a payment plan since they work outside of the insurance systems. The insurance systems seem to be walling off the conditions that are not predictable. Mesh removal is one of those conditions.
Good luck.
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Hello dog. G-K’s post has been restored in the topic that you started.
Thank you Dr. Towfigh.
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I miswrote above, about the surgeon who said the problem was too big to quantify. It was not an Australian surgeon it was Dr. Voeller of the University of Tennessee. He is also of the opinion that most meshes are the same. He is teaching these opinions, I assume, at the UT Medical School.
“It is most certainly higher, but we will never know the truth in a country with a population of more than 300 million like the United States, since long-term follow-up is impossible.”
I still can’t believe that a professor, at any school in any profession, would say that because the numbers are so large nothing can be learned from them. It’s incredible. This type of thinking is very damaging.
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quote DrEarle:Good intentions – Excellent comment regarding outcomes data. You stated there are “few metrics, despite close to one million surgeries per year”. Hernia repair, like health care in general, is complex. Not complicated, but complex. Therefore, by definition we cannot control it, but we can manage it. But we can only manage it if we have real world feedback (data) from the output of the system, in this case hernia repair outcomes. Only then can we get some really smart people to analyze the data, and gradually improve our application of hernia repair methods to those most likely to benefit. This can be accomplished. However, we need a single medical record (not single payer) to do it. The PPACA required electronic records, but inadvertently created a multi-billion dollar industry who’s own interests are well above those of the public. Not only would this allow continuous practice improvement, it would allow the type of post-market surveillance of hernia mesh (along with all other devices and drugs) we so desperately need.
Thank you for the response Dr. Earle. It is much more constructive than attacking the Shouldice hospital. I posted a link to an Australian surgeon’s comments, who had a similar view – “the problem is too big too handle, it’s hopeless”. But, of course, the individual physicians can easily track their own results, using surveys. The Shouldice hospital does.
As long as surgeons keep repeating the vague generalizations about successful use of mesh implantation for hernia repair, avoiding the chronic pain issue, the drive to find the truth will be weakened. That was my point in responding to the article you posted. She is just repeating something that she read on a medical device maker’s web site or from her training from the device maker. She is supporting, on her blog, what she does, without actually knowing if it’s true. She’s advertising for mesh. I just posted a link about Ethicon and their usage of their “Registry” data to make unverifiable claims about their mesh products. The device makers will sell sell sell as long as people keep buying their stories.
That is the real battle. Against the medical device makers’ propaganda. They have no reason at all, besides moral reasons, to discover if their products are better or worse than simple suturing techniques. If sutures are better, considering both recurrence and chronic pain, they don’t sell as much mesh. It’s really that simple. They have no reason to disturb the growth of the 5-6 billion dollar market. They don’t want to know the truth.
But the individual surgeon does. Because they took up their profession for the good of humanity and have taken the Hippocratic oath to confirm this. But many have been duped or coerced by the device makers. It’s “do things the device maker way or life will be very difficult”. They have co-opted the profession for their own benefit. It’s the great failure of the unregulated free market economic model we use. Business concerns are controlling the health care professions.
Good luck and please stay engaged in this issue. The truth is easy to see for those who want to see it.
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G-K I saw your post and had planned to ask you about the method for the original surgery. If I recall right you said that it was 34 years ago. So about 1984. Was it a pure tissue repair? No “other materials”. How was life for the those 34 years? Success stories are good to hear. 34 years would be a success, I think.
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This is the thread which had G-K’s post deleted as SPAM. [USER=”935″]drtowfigh[/USER] [USER=”2781″]G-K[/USER]
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Notice that she does not give her name on the blog. But it is linked indirectly. It would be interesting to know how her hernia repairs are doing. She said that she had two. That is the main problem with the industry today. It’s all internet stories, with few metrics, despite close to one million surgeries per year.
Here’s the quote. The blog post was May 2015. So it’s been at least three years. It sounds like a lap procedure. Notice the focus on the scar.
“So one last confession. I had two hernias repaired in November last year. I got a colleague to do it, with mesh, and a general anesthetic, as day surgery, in one of our local hospitals. I went back to work in less than 48 hours and I am very happy with my scar. I would recommend this approach (and frequently do) to anyone, including my patients”
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My post just got flagged also. Certain words like m e s h seem to get flagged.
I saw your post and it was very reasonable. dog’s reponse to your post is still there. Very strange that it got flagged late like it did.
Dr. Towfigh is the moderator. You can click on her avatar or use the @ symbol. The @ symbol doesn’t always catch though.
[USER=”935″]drtowfigh[/USER]
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Dr. Towfigh is the site moderator. I have found that certain phrases might be the cause, like “mesh …. removal” or “mesh … implantation”. She can often release them for publication. I try to remember to copy the text of my posts before I try to post them so that I can repaste and try again with a few words removed.
The site uses the “@” method for notification. Sometimes you have to wait for it to pick up the sign though. You can also send Dr. Towfigh a message by clicking on her avatar. [USER=”935″]drtowfigh[/USER]
I think that I saw your post. dog responded to it, his response to you is still there. Surprised that it got flagged later. It seemed reasonable, maybe somebody thought it was a sales pitch. Thanks for posting though, and good luck.
https://www.herniatalk.com/9141-no-mesh-hernia-repair-experiences-with-dr-william-brown-others
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In the United States the FDA would be the organization expected to monitor the safety of the various manufacturers’ products. But they generally rely on self-policing by the device makers themselves. It has been well-reported that the FDA is very lax in actual monitoring of product safety, only acting when publicity gets too extreme. Consider opioids and trans-vaginal mesh. They rely on reports from end-users like us, the patients, or from the surgeons who actually implanted the devices to inform them of problems. They are a reactive organization, not an active enforcement agency.
Unfortunately, the impression that the FDA is watching and keeping everyone safe is also shared by many in the medical community.
Your best source of information, sadly, is the various social media sites across the internet. Running enthusiast sites, weightlifting, mesh specific sites, hernia repair sites like this one. There is no “official” organization that has the mission of proactively seeking out that type of information.
As a result, all of the mesh products have the same low level of safety information. They’re all a gamble.
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The study is scheduled for completion in December 2021. Ethicon is already using the data, in vague claims, post above, to sell their mesh. But nothing is said about their failures.
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[USER=”2727″]kchabot[/USER]
Didn’t work above but looks like it did here.