Good intentions
Forum Replies Created
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Nothing is different today than on the first post of the forum. Just go back and read all of the posts and you’ll know much more than you do now.
“Open with mesh” can mean many many different things. Some are bad, some are very bad. Learn more about what, exactly, your surgeon is planning. Make sure that you avoid the worst. The patch and plug seems to be the worst. Make sure that you don’t get a surgeon who performs neurectomy during the mesh implantation. It is unnecessary, especially for someone with no pain.
Read all of the posts about watchful waiting. If you have no pain and just want to avoid future problems your best option might be to avoid surgery. Many people get hernia repair surgery and end up in worse shape than before.
The results are not as rosy as they seem from the literature in the doctor’s office. Be careful. Start reading, and good luck.
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I was proposing letting a new doctor diagnose your problem, from scratch, using their own knowledge, intuition,and terminology. The term “occult hernia” is a special term coined by a small group of specialists, many are probably not aware of the term but might be aware of the underlying cause of the problem. If you go to see a doctor and tell them what you want them to find they will be hesitant to get involved. People with cognitive bias are difficult to reason with, no offense.
Surgeons have a term for their competition in the outside world – Dr. Google. We all are out here on the internet trying to become experts before we make a decision, which is good, but I think that it’s best to let a doctor make their own assessment before determining if they seem confident in what they have determined, and if their assessment fits your symptoms. Hear them out and see if you agree, see if you feel confident that they know. So far, the surgeons you’ve seen just don’t have an idea, they don’t know. You have to keep searching, I think, until you find one who thinks they understand what’s happened to you.
Good luck.
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If you can get up to the Seattle area Dr. Peter Billing is a good choice. He removed my mesh. Dr. Andrew Wright at the University of Washington is also good, apparently. Someone who has posted here had him remove theirs.
https://www.transformweightloss.com/
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Peter C had an unfortunate experience. His problems seemed unusual from the start.
MeshMangledMerrit had a better experience.
https://herniatalk.com/forums/topic/hernia-mesh-hell-for-almost-15-years/
https://herniatalk.com/forums/topic/had-surgery-today-with-dr-brown/
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That’s a shame Sepi, but business is business. You might try one of the teaching colleges, like UC Irvine. Because your case is so unusual and difficult they might be able to use you for teaching, maybe at reduced cost. It won’t hurt to ask and they might be able to refer you to someone who can help.
https://en.wikipedia.org/wiki/University_of_California,_Irvine_Medical_Center
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I don’t think that you can use any mesh fixation data for your research. The inflammatory response from mesh is so great that many surgeons don’t use any fixation at all. No suture, Prolene suture, absorbable suture, titanium tacks, etc., they’re all the same.
Generally, I don’t see how a layperson can choose a suture material for a hernia repair procedure. The only valid way to make a proper choice for long term results is through long term data. The best that you can get from the internet are references to professional publications, or opinions from people who have a history of successful repairs. If Dr. Brown recommends silk sutures why would you need to look any farther?
Maybe you can get Dr. Brown and your surgeon together for a phone conversation? Some surgeons are open to listening and learning, some are not. Worth asking. Good luck.
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Dr. Towfigh offers online consultations and is known for her skill in reading images. I don’t know if she charges for her consultations but you can submit a request online or call and find out. Definitely worth a shot. Good luck. Hernia Talk is Dr. Towfigh’s web site.
https://www.beverlyhillsherniacenter.com/
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This will be difficult to determine but try to find a surgeon who can afford to, and will, take the time to get the mesh out without cutting things that don’t need to be cut. As Dr. Ramshaw recently wrote, the medical industry today is about throughput. Get the patients in and out quickly. This is actually a big reason for the rise in mesh implantations, I think. It’s simple and quick.
If a surgeon has scheduled an hour for mesh removal and has patients waiting for him/her after your procedure then the decision to take the time to tease the nerve away from the mesh or cut it leans toward cutting if it looks like they are running behind schedule.
When I had mesh removal by Dr. Billing, he planned for up to three hours to remove the mesh, per side.
In an ideal world, the requirements for removing a mesh device would be considered before implanting the mesh device. But the reality today is that it’s somebody else’s problem after it’s implanted. Good luck.
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Is the Shouldice Hospital not an option?
Your toothpaste bottle had pressure sealed in by the cap. Your own internal pressure will equilibrate to outside pressure. The flight will be just like sitting in Vancouver for 16 hours.
Good luck. Europe is experiencing a third COVID-19 wave, with variants. Odds are that we will also, here in the USA.
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TelaBio just finished a two year study on just 100 patients, with 20 supplying information at two years. Just like the synthetic meshes, the focus is on recurrence. No mention of quality of life. Chronic pain, discomfort, ability to work and play. Just recurrence, and no return for problems. It’s one of those things that should be proclaimed loudly as a benefit over synthetic mesh. The initial study goal included “patient reported outcomes”, but there are none in the final report. No explanation why, just not reported. I hate to be negative but I do similar work in a different field and the absence of expected data is usually not a good sign. Why don’t they report the part that is most important to the patient?
The journal reports are worth reading. The material does look promising but now that it has been commercialized and the TelaBio company is part of the stock market, money must be made. It’s a business now.
https://www.telabio.com/assets/download/OviTex%20Published%20Clinical%20Data.pdf
BRAVO Ventral Hernia Study Overview
• Study Design: prospective, single arm, multi-center study evaluating the clinical outcomes of ventral hernias treated with OviTex 1S Permanent
• Study Size and Duration: 100 patients with 2-year follow-up
• Primary Endpoints: incidence of early post-operative surgical site occurrences or wound related events occurring at the hernia repair site, including deep or superficial wound infection, seroma, hematoma, wound dehiscence, skin necrosis, and fistulas
• Secondary Endpoints: hernia recurrence, patient reported outcomes, incidence of late post-operative surgical site
occurrences or wound-related eventsFinal outcomes of the initial 20 subjects reaching 2-year follow up in the BRAVO Ventral Hernia Study
2020 American Hernia Society
• Data from the BRAVO Clinical Study were analyzed to compare OviTex 1S Permanent in MIVHR and Open VHR
o Twenty (20) of 92 subjects completed 2-year follow-up, 14 (70%) open and 6 (30%) minimally invasive (MIS), of
which 2 were laparoscopic and 4 robotic
• SSO rate for all subjects was 25% with 4 infections and 1 hematoma
• All SSOs had resolved at the time of first analysis at 30 days and did not require surgical intervention
• No subject in this group has experienced a recurrence (0 of 20; 0%) through two years -
If you are in the Northwest you should call Dr. Peter Billing at Transform Weight Loss. He is an expert in laparoscopy and knows the problems with mesh. He removed mine, with none of the damage that some people have had from mesh removal. He would probably know if your hernia can be repaired without mesh, and if he did use mesh I think that he would use only the amount necessary. I think that many of today’s problems with mesh are because the amount of mesh used for a procedure has trended upward dramatically over the last 5 – 10 years.
Also, TelaBio’s product is still new. There is not much data on how much resorption actually occurs in a human being, and what the rate of problems is with the product. It is another mesh-like device that has been approved through the 510(k) process, and is treated just like the synthetic meshes, with no registry and no long-term tracking of patient welfare. Once these products get to market, they just blend in with the crowd of medical devices. Sorry, it’s just the way the industry works.
Here is the link to Dr. Billing’s practice. He is very capable and conscientious. Good luck.
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Search for Dr. Brown’s posts on the site. He has experience in diagnosing nerve pain and understands how mesh can cause nerve problems. The reaction of your surgeon is very common. It’s just part of the mesh repair profession. They are told that mesh cannot be the cause of problems, or that if there are problems it’s their fault because they are unskilled.
Dr. Brown will have some advice but you might have to search for a doctor who will try to help you and use his advice. Most mesh repair surgeons will not want to talk to you. Sorry. Good luck.
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Call Dr. Brown. He can help. Good luck.
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Thanks for the reply Momof4, and for getting involved.
Here are some relevant links, below, but the whole site is worth looking through.
There’s a video if you click on “How it works”. I copied the youtube link to it also. It’s worth watching to get a feel for how deep and how far they plan to go. The map is interactive, you can find the places that have signed up so far.
https://www.youtube.com/watch?v=u9ULqhMn1so
All of the “Partners” are involved in, and benefit from, mesh implantation. Foxes and hens. Trust but verify. Where are the objective, non-conflicted partners? The CDC, NIH, or FDA? I don’t really see any effort to identify long-term results, or quality of life results.
https://www.achqc.org/faqs/achqc-foundation-1
Finally, how do the results from the pain clinics or urology clinics get associated with the repair and device? There is a mention of longer-term follow-ups, a short nine question survey, but the focus of the effort seems to be the one month follow-up, and “readmission”. Readmission is for physically manifested problems, not pain problems. They should get the pain clinics and others involved, if they are focused on patient welfare.
Good luck Momof4. Sorry to be cynical.
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Isn’t there a survey form associated with this effort? What, exactly, are you looking for? What time-frame is the effort looking at? Years, months, weeks?
https://www.arbormetrix.com/results/americas-hernia-society-quality-collaborative
“ArborMetrix dynamically benchmarks performance in real-time, which is crucial for tracking the impact of quality improvement interventions. This has allowed AHSQC to improve the quality and cost-effectiveness of hernia repair by providing surgeons with immediate, risk-stratified metrics to determine the best procedure for an individual patient based on various factors.”
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You have to click on the tweet to see the whole conversation. Twitter links don’t paste well.
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This conversation, below, is surprising. Dr. Heniford seems to have completely gone in to a defensive posture. In the recent past, I had seen him as someone who could actually drive some change in the field of mesh-based hernia repair. He was calling for a registry of all mesh products, so that the problem could be understood. He was very vocal about it. I don’t see that in the Twitter thread.
The lawyers only follow the problem, they did not create it. The hernia mesh problem is just as real as the transvaginal mesh problem. Dr. Heniford knows this very very well. He has changed in just a few short years.
https://twitter.com/THeniford/status/1350912176576487424
Shirin, This paper is important. The issues of pelvic vs hernia mesh, the impact of social media, and how the opinions can be baited and spurred by the legal profession are remarkable. Nicely done
— B Todd Heniford (@THeniford) January 17, 2021
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Just a reminder from not too long ago.