Good intentions
Forum Replies Created
-
Welcome Dr. Brown. These are interesting times for hernia repair.
-
Good luck Dog. You’ve been very persistent and thorough in your research. Thanks for sharing what you’ve found along the way. I’m sure you made one of the best possible choices.
-
Dr. Todd Heniford, on the other hand, is the type of leader that needs to be supported.
“Surgeons have to ask: Are we protecting patients or are we protecting industry? Are we protecting ourselves?”
There are several other doctors quoted who seem rational and focused on patient welfare. Overall the article shows that at least the discussion is continuing. Let’s hope they can make some progress.
Thanks again Jnomesh for posting it.
-
That is promising. Thanks for posting this. I pulled two of the linked articles out, below, the British Hernia Society’s response to a BBC report, and the FDA’s press release.
The BHS response is very disappointing and focused on protecting their image, it seems. The response is surprisingly unprofessional, tone deaf, and uninformed, considering the BHS’s role in guiding the efforts of their membership. Hard to believe that it’s part of an official response. They seem to be defending the industry instead of the patients.
An actual quote, with exclamation mark, from the BHS – “One of the patients developed groin pain many years after the mesh hernia repair – yet the mesh was still blamed for the problem! “
https://mailchi.mp/23a275fbe343/j114lk1gnu
The FDA press release looks good, but it’s an extension of something that started six years ago, in 2012. The government works very slowly. Lots of talk but little action.
https://www.fda.gov/newsevents/newsroom/pressannouncements/ucm626286.htm
Dr. Bruce Ramshaw even can’t resist defending what’s happening and seems in denial. His statement from the article is surprising. I can’t see a reason for making such a blunt statement except to defend the industry.
“The relationship between mesh and chronic pain is poorly understood, Dr. Ramshaw said. “Let me be clear: Mesh doesn’t cause chronic pain but it may be a contributing factor as part of the many factors that can contribute to chronic disabling pain.”
That’s the same logic as “the fall doesn’t kill you, it’s the sudden stop at the end”. It’s like he is completely unaware of the people who have been cured of their pain by having the mesh removed. And did not have pain before the mesh was implanted. The cause-effect relationship seems clear. I wish that he did not have such a high profile in the situation, he seems to be hindering more than helping. I think that his comment also minimizes the effect of constant low level pain and discomfort. He shifts the focus to extreme disabling pain, avoiding the issue of degradation of quality of life.
He is also at the University of Tennessee, where Dr. Voeller teaches, who is also of the opinion that the problem is too big to measure, and that’s why nothing can be done. They seem to be protecting the status quo, despite the evidence. And teaching a close-minded sort of approach to surgery. It doesn’t seem right that they are both professors, and both very vocal in their opinions. I wonder if the device makers are big contributors to the department.
-
Posting again to make sure people also see the other story that is linked in Chaunce’s first link. By hiding from the problem the medical device makers might be about to lose all of the mesh market in Scotland, when they probably could have kept the good products. A focus on revenue and seeing patients as profit centers might finally be catching up to them.
Published November 12, 2018.
From the article:
“Scotland was the first in the world to suspend the use of transvaginal mesh implants. The whole of the UK has followed suit.
But concern is now growing over hernia meshes, many of which are made from the same or similar material as transvaginal mesh, which has seen manufacturers pay over £3 billion compensation in the US.
A Sunday Post investigation into mesh revealed manufacturers knew 21 years ago of safety concerns but they went ahead.
Thousands of US hernia mesh cases will begin next year.”
-
quote Chaunce1234:[USER=”2029″]Good intentions[/USER] by any chance did you report your case to the FDA as an adverse event?
https://www.fda.gov/MedicalDevices/P…/ucm317444.htm
I have been through that form but have not submitted one. I need to contact Dr. Billing and see if he filled out the Health Professional form. I know that he is aware of the FDA’s ability to accept reports and hoped/assumed that he reported mine but have not confirmed it.
I have everything I need to report it. Frankly, I don’t have much faith in the FDA, but will add to their database anyway, in case they get new leadership and get back to their mission. Here is a more direct link to the forms.
https://www.accessdata.fda.gov/scripts/medwatch/index.cfm?action=reporting.home
-
It’s very unsettling how common the descriptions of the problem are, around the globe and over many years. From the effects of the mesh to the responses of the surgeons. The more stories you see the more you realize that the device makers must be coaching or training the doctors, directly, or indirectly through influencing the various surgical societies, about how to get the patient to accept the operation and how to respond when there are problems. How can the stories be so similar? These stories from Scotland, published just a couple of months ago, are almost identical to my story from here in the United States, three years ago, and similar to many stories from other patients. How long can it go on? How can physicians ignore these stories and keep doing the same things that are obviously the cause? Without telling us that we might be “unlucky”?
Thanks for posting that link. It is well written.
-
[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.
-
“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
-
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.
-
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.
-
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.
-
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.
-
[USER=”2313″]Lucky46[/USER] Forgot to @ you.
-
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
-
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.
-
Hello dog. G-K’s post has been restored in the topic that you started.
Thank you Dr. Towfigh.
-
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.
-
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.
-
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.