Good intentions
Forum Replies Created
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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.
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quote SighFigh:Good Intentions,
Would you mind telling me what surgeon you used for the last repair? You can send it me by private message if you don’t mind.
thanks in advance!
There was not actually a repair, just removal of the mesh. The tissue around the mesh has become stiff and leathery, so the hernia is gone. In the big picture, I traded one type of damage for another. And paid for it with three years of life quality and a lot of money.
Sorry. It looks like you’re seeking a solution to a hernia problem. I think that the surgeon who removed my mesh also uses mesh for repair. We did not talk much about his hernia repairs, only my mesh removal.
I still recommend trying to find a surgeon who knows of at least a few of his or her patients that have returned to their former activity levels, and can describe them to you. And make sure that they are using the same method that worked for those patients. Many surgeons are getting drawn in to changing to laparscopic large area implantation, covering all of the lower abdomen with mesh, for the speed of surgery and the prophylactic aspect of covering a large area. They’re changing from what used to work, but with a low level of recurrence, to untested methods that cause new unexpected problems.
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quote miner:Keep in mind most professional athletes have whatever surgery gets them back on the field fastest not what might cause chronic pain. As they can play through chronic pain with medication.
I don’t think that this is true. I’ve thought of the difference between professionals and athletic people and the effort expended by each can be similar. The skill levels are different but the work on the body is about the same. The damage that the mesh does is not just pain, that can be disappeared with drugs. It’s real damage, with swelling, and inflammation, followed by healing efforts. There are also real effects on physical function in that area. Constant inflammation causes other problems. You would expect professional athletes to be even more sensitive to the physical damage that the mesh causes.
When the meshes are removed they are always smaller than when they were put in. They’re not flexible anymore, not soft, not pliable. Often the tissue around the mesh is inflamed.
Once a procedure has been shown to actually delay getting back to performance levels for pro athletes, it is avoided. The managers, agents, and support people behind the athletes know what will work long-term. I doubt that the athletes themselves have much to say about the procedure used. It’s a financial decision. You can find old literature where they tried to use mesh to repair athletic pubalgia, aka sports hernias. They don’t do that anymore, it didn’t work.
I didn’t mean to write so much, rejecting your idea. Sorry. The short answer is, actually, that laparoscopic mesh implantation is a one hour outpatient procedure. And because the incisions are smaller, the healing is faster. Rapid return to work is one of the main selling points for laparoscopic mesh implantation. It should be the fastest way for a pro to get back on the field, and they don’t use it.
You’ve actually helped form another argument against mesh implantation. If it really was what they say it is, professional athletes would be using it.
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quote SighFigh:Good Intentions, and Dr. Kang, thank you both for the info.
Good Intentions, did you have the mesh removed?
I did have it removed and I’m doing well. I had immediate benefit after the removal, but the full recovery is taking longer. Three years of constant irritation seems to have thickened the tissue of my lower abdomen to a leathery, less flexible quality. It’s taking a while to loosen up but progress is consistent.
There was someone on the forum recently, ajm22 I think, asking about the best surgery to have and I recommended waiting, if possible. There are some interesting things happening in the field. The “standard of care” seems like it must change relatively soon. Things seem to be getting more clear about what works and what doesn’t. Mesh has many problems.
ajm22 was about to have mesh implantation not long ago but he has not been back. I’ve found that this is fairly common on the forums, which is somewhat disturbing. People are usually happy to tell about their successful journey through a traumatic experience, especially after they’ve received helpful advice. I’ve only seen two people, on a different forum, actually come back and describe successful mesh implantation results. I think that most just don’t want to talk about it, which is telling.
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quote Milo:Hi, currently 6 hours post-op;
I think that 6 hours is way too early to be trying to asses much about the surgery. The tissues that were damaged during surgery all leak a small amount of fluid, which builds up and takes time to get reabsorbed by the body. I had a bowling ball of jello in my lower abdomen for about two days. I think it took about 5 days before it was close to normal, and a week before it felt tight/flat again.
I don’t know if a week is a long time, but I think that 6 hours is definitely a short time. Milo, you didn’t say what type of surgery you had. Mine was laparoscopic TEP.