Good intentions
Forum Replies Created
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quote SomeGreyBIoke:Apparently majority of the problems experienced were with the old meshes, newer ones are better tolerated by bodyNo offense GreyBloke but I think that this is backward. The mesh materials are still about the same, old and new. Polypropylene or polyester, variations of weave and design, sometimes blended with absorbable fibers. And many of the threads you will have seen on this forum are from recent surgeries. I has state-of-the-art Bard Soft Mesh implanted by a state-of-the-art surgeon using the latest methods in late 2014. Then had it all removed three years later. It was almost the worst experience of my life, the three years of realizing that I wasn’t going to get better, and that the experts I had trusted really did not know and/or accept that the problems with the material and/or the procedure were real.
The majority of the surgeons who do this work are trapped in the mess. They really have no choice but to repeat or pass on what the medical device makers tell them.
I had the same general thought, back in 2014, just three and a half years ago, that you’re expressing – that the latest materials must be better. How could they not be, there’s no way that this could be allowed to go on for years? But it’s true – the problem with mesh implantation has been around for at least 10-15 years, probably longer. But they have committed to making it “work” and can’t go back. Don’t get lulled in to trusting the big institutions. Find an individual who can say, honestly, that they have patients who are known to be doing well with what they plan to do. Even then evaluate if they really “know” that to be true. There is a lot of psychological pressure to believe that it works.
This a big problem and these doctors really are stuck with it. They can’t get out from under it. Do them a favor and be very certain that the procedure you choose will deliver the results that you want. Surviving is not enough, you need to be able to live with it. Read the stories about the repetition of “no recurrence” when people go back to their surgeon with discomfort. Recurrence is the measure of success, not quality of life. And realize that the discomfort is constant and never goes away, if you get the wrong material and procedure, whatever that may be. Nobody is tracking results, good or bad.
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There is a new “sticky” at the top of the forum’s main page, about sports hernias.
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Jim82, if you could come back every few months, good or bad, that would be fantastic. Despite the huge number of hernia repairs, it’s very difficult to find any real-life success stories. There’s no way to tell why, if it’s something people don’t want to talk about, or if things are so good that they’ve forgotten they ever had a hernia.
I started a thread to try to collect some, hoping that something positive might show up. If the bad can’t be weeded out, maybe the good can be identified.
https://www.herniatalk.com/6883-successful-good-mesh-stories
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Dr. Towfigh has written quite a bit about “hidden”, or occult, hernias. You can find a lot on this forum, and on the internet if you search those words and her name. Send her a message or contact her office directly.
Here is some information from her practice’s web site –
https://www.nytimes.com/2011/05/17/health/17brody.html
http://www.beverlyhillsherniacenter.com/hernia-education/types-of-hernias/
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Here is something that I would add to Chaunce’s advice – get a copy of your medical records. Then write a clear and concise letter describing your situation. Send a copy the records and the letter, in paper form, to whichever surgeons you would like advice from, with phone and email address included.
I found that I could go to an in-person appointment with a clear picture in my head of what I wanted to say but, typically, the surgeon or doctor would, it seemed, not really hear what I was saying. Written words are clear and can not easily be “not heard”. It’s easier for them to read and ponder what you’re saying. Plus they have time to think about how they might respond and if they want to respond. In a clinical setting, the training is to get in, listen, make a diagnosis and a recommendation, then get out. It’s just the way the system works these days.
Good luck. My surgeons have all responded to my written letters. The responses were more productive than the result of the typical 10-15 minute phone or in-person meeting. Make sure the letter is short and to the point though, They will have more time to read, but still be time-constrained.
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quote LostNPain:Also, those who have had their meshes removed because of pain-did you find instant relief? Did you have a reoccurrence? Is your level of physical activity diminished due to caution of recurrence?
Is reoccurrence more common after mesh removal if a new mesh is not implanted? Especially with very active people ?
More questions…
For those who have had triple neurectomy, how are you feeling now? Are you happy that you had the procedure ?I have been presented with options and am unsure which direction to go. It seems like each path is undesirable and I feel stuck.
Mesh removal is a pretty intensive operation, so you end up feeling, physically, somewhat like you did when you had the implantation. So, the relief for me was more mental, in that I was finally rid of the abomination in my abdomen. I had new hope that I might get some or all of my past abilities back. I also had certain problems, related to being a man, that did show immediate benefits, within days. Just removing the inflammation had that effect.
I did not have any recurrence and have not had any signs of one, in 4 1/2 months since. I doubt that I’ll try to set any personal bests for lifting heavy weights, but I have been doing heavy yard work, and just replaced a stove and a dishwasher, by myself. I’m not worried about recurrence. I’m back to just doing things, as I think of them. Not planning my life around the problem.
I also did not have any nerves cut. I don’t understand why that would be done. If it’s determined that the mesh is causing a broad-based inflammation there is no specific nerve that can be cut for that, as I understand things. I’m not a medical doctor but cutting the nerves seems like “insurance” for the surgeon, so that you won’t feel pain anymore. But it also means that you won’t feel pleasure, or just sensation, fomr what those nerves were connected to either. It seems like an extreme measure for a moderate, but persistent problem. I think that many surgeons don’t understand that it’s the persistence of the problem that is the real issue. Not the level. It never goes away. It’s always there and it is always going to get you. Cutting nerves just creates a new type of problem.
Sorry, I wrote another novella. I’m happy that I had my mesh removed. It was a hard decision to make though. I’m glad that I did not have any nerves cut.
I can offer though that TAPP seems to be the best method available today, to remove mesh. Dr. Petersen’s method of splitting people down the middle is just not necessary anymore. I would find a surgeon who uses TAPP and does not cut nerves. And has years of experience. They are out there, you just have to find them.
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Here is a link to one version of Phasix. It is a fully resorbable mesh. It disappears completely, over a long period of time. Very different from the petroleum-based polymer fiber meshes. Bard says that it is designed for soft tissue repair like hernias, but they say the same thing for the polypropylene meshes.
Frankly, it looks like an experiment. All of the data is preclinical. But the FDA will probably approve its use as substantially equivalent to some past product. And Bard will start selling it. Then everyone will wait and hope.
https://www.crbard.com/davol/product-listing/sp/phasix-st-mesh/
From one perspective, it’s a sign that they are acknowledging problems with the existing products. On the cynical side though, it might just be the start of another ten to 15 year cycle of failure. They are playing both sides, telling people that the synthetic meshes are the “gold standard” but planning to replace the gold standard, all at the same time.
Sorry I can’t be more positive. The same people are behind all of these products.
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Progrip apparently started out as a Parietex dereivative. There’s a reference to Parietex Progrip in this link. It seems popular with the surgeons.
Some of the surgeons still use the old names for materials, or companies. For example, Johnson and Johnson has separated themselves from mesh by creating Ethicon LLC.
I really hope things work well for you. I’ve heard good things about Progrip. Just a couple of stories, but they were still promising.
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Parietex is a polyester-based mesh, apparently.
Good luck.
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Here is that link.
http://www.rimed.org/rimedicaljournal/2016/10/2016-10-31-sports-cohen.pdf
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Here is that link. I just got locked out of another thread though so it might not make it.
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“Sports hernias” aren’t really hernias. The proper name of the condition is athletic pubalgia. It’s typically from overuse, not one-time actions. I posted a link in the post after this one, just in case the site locks me out. It doesn’t like links.
The mesh used for hernia repair is not actually made of flexible material. The polypropylene or polyester fibers are not very elastic. They are woven in to a cloth that is flexible on a large scale, by letting loops and knots bend and the fibers slide past each other. After it’s placed in the body and tissue ingrowth occurs, the knots get locked up and the mesh becomes stiff and non-extensible, less flexible than the abdominal wall was before it was implanted. It doesn’t stretch anymore. It actually shrinks. So you might have overstressed the repair site, stretching your abdominal tissue to a level higher than it’s seen, and either pulled an area of mesh free from the surrounding tissue, or torn/stressed some tissue at the edges of the mesh.
Hopefully your body will re-adapt to whatever has happened. But the concept of the mesh repair is that it becomes a permanent part of the abdomen, so trying to help your body adapt to the new damage is about the best you can do. Good luck. Don’t try to treat it like a muscle injury, which will typically respond well to daily activity. I’ve found that waiting a few days for things to settle down completely then ramping back up works better.
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Do you know what type of mesh was used, and how much? All types of mesh tend to get lumped in to the one small descriptor of “mesh” even though there are many many different types. And surgeons use different amounts, some only treat the existing hernia, others will fill as much space as possible, to avoid future recurrence.
The poorly defined materials and procedures used around the world is one of the big problems with solving the chronic pain issue with “mesh”.
Good luck. You’ll probably experience changes at the repair for at least a year, maybe longer.
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quote clbear:My replies on my other thread are unapproved ?
This happens on the site occasionally. If you send a message to Dr. Towfigh she might have time to fix it. It has happened to me several times. It’s a problem with the site’s anti-spam software, apparently.
The SAGES conference is coming up in two days, so she might not be as responsive as usual. Professionals often meet up before the actual meetings to conduct business. Hopefully some progress will be made on this mesh travesty.
Good luck. Keep posting here. Don’t forget that there are many people who probably see what is written but don’t participate n the conversation. It is still useful to share your experiences.
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Do you know what type of mesh was used? There are many different kinds, and it’s unclear if they have real differences in performance. And was the original hernia direct or indirect? Did you get your surgical records?
Is the surgeon famous for hernia repair or just generally famous? Have you told him or her about the failure? Maybe they can use their fame for some good.
After a TEP surgery most subsequent hernia repairs are done via the open procedure. Some surgeons will try TAPP, depending on what they are trying to fix. TAPP leaves more and bigger scars than TEP.
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It sounds like the very common dissembling answer, avoiding saying what needs to be said. Mesh-induced pain.
You’ve probably seen my recommendation about getting your medical records soon. Many organizations purge their records after just a short time. Get your records, write up a good description of what you feel and when you feel it and send it and your records to surgeons who do mesh removal.
I think that the surgical field is divided in to two basic camps, regarding hernia repair – one that denies, refuses to believe, that mesh-induced pain exists and structures all of their diagnoses around that presumption. “It must be something inherent to the patient, not the mesh prosthetic”. And another camp, composed of true physicians, that accept that mesh-induced pain is real and needs to be treated as mesh-induced pain.
It’s a sad situation that is turning many honest well-intentioned doctors in to less than they could be. Like their patients with mesh problems. Everybody loses.
Get your records and find a doctor who does mesh removal. The ones who don’t will not “see” what needs to be done. I’m not saying that you will need it removed, but the doctor has to accept that mesh might be the cause before they can create a proper treatment plan. If they avoid the mesh as a cause, they will be treating other conditions and wasting your time, along with the time of the all of the other professionals involved. It’s incredible how much time and money was spent on my problem, all wasted.
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I just posted in your other thread. But forgot to say that one advantage to talking to a doctor who has removed mesh for a while is that they will recognize your symptoms and might also have experience with your specific type of mesh, maybe even your surgeon.
I wasted a lot of time working with a surgeon who did not remove mesh. He was trying learn as he went, on a topic he really wanted to avoid since he had implanted the mesh. I got an MRI, and saw a urologist, and did some blood testing. Even though it was obvious that the mesh was the problem.
A surgeon with experience removing mesh will have seen all of the signs before.
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Sorry, I misread your post. I see the part about neurectomy. I did not have any neurectomy done when my mesh was removed. I also did not have any referred pain, or pain typical of nerve pressure, like shooting pains, or sharp pains. Mine was just dull soreness, pressure, and swelling caused by normal activities like running, biking, physical labor, etc. There were also side effects for other body functions, in that area, due to large scale inflammation. They all disappeared or diminished dramatically after the mesh was removed. I am now more like a person who just got stabbed in the abdomen several times. Slowly working through stretching out the scar tissue.
I have seen accounts of surgeons who cut nerves “just in case”. Nerves do grow back but the nerves they are cutting are large. You probably want to get very clear advice on what they plan to do, before you choose a doctor.
It seems that, because there is not a clear acceptance of what causes the pain, that there is also no clear acceptant of what to do when removing it. Nobody wants to accept that it’s just the mesh. So they cut nerves.
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The self-adhering nature of the mesh is more of a short-term adhesion. To hold it in place while tissue “ingrowth” occurs. Once ingrowth occurs it is probably just like a common mesh. After a few months they all look the same.
The reason for the development of self-adhering mesh is because one of the original causes proposed for mesh pain was the tacks, staples, or sutures, used to hold it in place. But, it’s becoming more clear now that is it the mesh itself that causes pain.
Beware of the gimmicky nature of some of the newly developed mesh products. The sales literature is for selling. And these products are actively sold, by professional marketing and sales people.
The surgeon you choose should be able to tell you about patients he or she repaired years ago that are very happy with their decision. If they can’t tell you about them they probably don’t exist.